Understanding the role of social networks in supporting people living with chronic kidney disease. A narrative synthesis

Understanding the role of social networks in supporting people living with chronic kidney disease. A narrative synthesis | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Understanding the role of social networks in supporting people living with chronic kidney disease. A narrative synthesis Becky Bonfield, Kristin Veighey, Thomas Blakeman, Emma Murphy, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7866009/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 09 Dec, 2025 Read the published version in BMC Nephrology → Version 1 posted 16 You are reading this latest preprint version Abstract Background Chronic kidney disease (CKD) is a growing global health concern requiring effective self-management to mitigate progression and improve quality of life. While self-management is increasingly recognised as a socially embedded practice, the specific contributions of social network members to this process in CKD are not well understood. Objective To synthesise and interpret existing literature on how social networks support individuals living with early-stage CKD and identify gaps in understanding. Methods We conducted a narrative review. Fourteen studies involving 560 participants—including individuals living with CKD, their social network members, healthcare professionals, peer mentors, and religious leaders—were analysed to explore the role of social networks in CKD self-management. Results Four key themes emerged: ( 1 ) The burden of kidney disease uncertainty , ( 2 ) Everyday challenges of managing CKD , ( 3 ) The loneliest disease , and ( 4 ) The role of peer support . Participants frequently reported emotional distress linked to diagnostic uncertainty and inconsistent information, especially from non-specialist providers. CKD management posed significant practical and psychological burdens, particularly for caregivers, who often felt unsupported and invisible within healthcare systems. Peer support—both informal and formal—played a crucial role in reducing isolation and providing context-specific guidance, especially when tailored to individual preferences and illness trajectories. Conclusions This is the first review to explore the role of social networks in supporting the self-management of people living with CKD. The studies highlighted that early-stage CKD is shaped by diagnostic uncertainty, limited formal support, and social invisibility. People with CKD rely on diverse social networks for self-management, yet unclear care pathways and inconsistent communication hinder this support. Integrated models that combine early specialist input, peer support, and trained generalists are needed. Recognising and supporting these networks is essential to reduce isolation, improve understanding, and enable meaningful engagement with self-management across the CKD trajectory. Chronic Kidney Disease Social networks Self-management Peer support Background Chronic Kidney Disease (CKD) is a global health issue that affects approximately 9% of the world’s population ( 1 ), with an estimated prevalence of 13% within the United Kingdom (UK) ( 2 ), which is continuing to rise ( 3 ). CKD is defined as a reduction in kidney function for more than 90 days, and is classified based on cause, glomerular filtration rate (GFR) category, and albuminuria category ( 4 ). When using GFR categories Stage 1 is characterised by normal or increased kidney function (eGFR ≥ 90 mL/min/1.73m²) with signs of kidney damage (such as albuminuria), while Stage 5 indicates kidney failure (eGFR < 15 mL/min/1.73m²), often requiring dialysis or a kidney transplant ( 5 – 8 ). Healthcare resource utilisation for people with CKD and its associated costs impose a significant burden on the healthcare system, especially for those in advanced stages of CKD ( 3 ). Currently, CKD accounts for 1.3% of all NHS spending ( 9 ). Alongside these financial and resource implications, CKD can have a detrimental effect on the physical and emotional well-being of people living with the disease, leading to a reduction in quality of life and psychological distress ( 6 – 8 ). Early stages of CKD (Stages 1–3) may be asymptomatic, highlighting the importance of early detection and management to slow or halt progression and prevent complications ( 10 ). If CKD progresses, it can lead to significant complications that include kidney failure (in around 2% of those with CKD) and its associated complications, such as anaemia and bone disease. People with CKD are also at increased overall risk ( 11 ) of cardiovascular disease ( 11 )- the leading cause of mortality in people with CKD ( 12 ). CKD presents significant challenges for individuals, and these challenges are exacerbated by healthcare inequalities. People from marginalised communities, including low-income individuals, racial and ethnic minorities, and rural populations, often face increased barriers to timely diagnosis, effective treatment, and care continuity ( 13 ). Limited access to healthcare facilities, especially specialised kidney care, is a key challenge ( 14 ). Whilst there are health inequalities globally associated with differences in low, middle, and high-income countries ( 15 ) there are also challenges within high-income countries where healthcare is free at the point of care, such as the UK. Those from deprived backgrounds have a higher burden of co-morbidities, experience kidney disease progression at a more rapid rate, and have worse clinical outcomes for both CKD and acute kidney injury (AKI) ( 16 ). Poorer care and outcomes are associated with area-level deprivation and are greatest in those individuals with early CKD ( 17 ). This group are known to often present with problems related to their kidney disease to urgent/ emergency care, and miss more routine monitoring appointments and testing ( 16 ). As the prevalence of CKD increases, especially amongst an aging population and for those people with co-existing chronic health conditions such as hypertension and diabetes mellitus ( 18 ), understanding what management strategies are required is crucial. These strategies are essential to reduce the impact of CKD on people living with the condition, their social network members, and healthcare systems. Effective self-management - the role individuals take in managing their health condition through everyday life adaptation related to behaviours, relationships, and lifestyle - has become essential for both individuals and the healthcare system. Self-management programmes for people with CKD have been shown to improve quality of life, reduce healthcare burden, and slow disease progression ( 19 , 20 ). Self-management frameworks exist in several developed countries ( 21 ), and in the UK, within the NHS Long Term Plan ( 22 ), self-management is recognised as key to delivering care. There is a growing recognition that self-management involves different types of ‘work’ (practical, emotional, relational) in addition to ‘illness work’ (e.g. understanding and managing symptoms, taking medications) and that illness management is not an individual but a collective process. Specifically, members of people’s social networks – the constellation of formal and informal relationships (e.g. friends, colleagues, family members, peers with common interests, healthcare professionals) around a person – play an important role in enabling or preventing self-management ( 21 ). Social networks shape self-management through the support and resources they provide (or restrict access to), by shaping perspectives towards health-related practices such as diet and exercise ( 22 ), and as an integral part of people's identities, obligations, and valued roles (e.g., as parents, employees, friends, professionals). There is evidence that social networks play an important role in providing self-management support, for example by reducing readmissions to hospital after exacerbations in both acute illnesses and chronic illnesses, such as decompensated heart failure ( 23 ) and chronic obstructive pulmonary disease ( 24 ). There is a body of literature on self-management for people living with significant CKD ( 25 – 27 ), and it has been recognised that people living with CKD who are actively participating in self-management have improved health outcomes. These can include an impact on disease progression and quality of life ( 28 , 29 ). Similarly, studies on diabetes self-management have demonstrated that family support and peer networks can significantly enhance medication adherence, physical activity, and dietary changes, which are essential for managing the disease ( 30 ). In the context of kidney failure, social support by peers has been found to influence treatment adherence and improve the overall well-being of patients receiving kidney replacement therapy ( 31 ). Whilst there is a wealth of evidence supporting people living with significant and severe CKD, there is limited evidence around the self-management support for those with mild to moderate CKD, who are mainly cared for in primary and community care. Additionally, there is limited understanding as to how social networks work as a whole system (rather than the contributions of specific types of relationships, e.g., peers, family members) in providing or limiting different types of support. Understanding the experiences of people living with CKD and how their illness is managed in everyday life, alongside the role of their social networks, will help improve understanding of self-management practices and inform the development and implementation of self-management support interventions. Alongside this, it is important to understand the shape and structure of both formal and informal support to understand how this impacts and influences behaviours ( 32 ). Social network members are perceived as a crucial part of living with CKD, often being considered as a disease that is not just lived by the person with it, but rather the whole family ( 33 ). This narrative review aims to address this gap by examining the work (emotional, practical, relational) carried out by the social network members of people living with CKD, and the role of social network support in shaping self-management behaviours and practices in different everyday settings. Methods This paper presents a narrative review of the literature on the role of social networks in supporting people living with CKD. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidance ( 34 ) was used to systematically search and identify relevant literature. Eligibility criteria This review included studies investigating the role of the social network and its impact on self-management for people living with CKD. Social networks were defined as ‘the structure around people that is made up of individuals or organisations associated with one or more types of interdependence (friends, family, those with common interests, work, knowledge) which together form a ‘network’ around the person’ ( 35 – 39 ). The primary concept of interest in this review is the experience of people living with kidney disease, their self-management, and the role of their social network support in managing their illness. The review considered studies that provide information about social networks, self-management, and the experience of people living with CKD. A full list of inclusion/ exclusion criteria can be found in Table 1 . Table 1 Inclusion/ exclusion criteria. Inclusion Exclusion - Primary Research - Involving adults aged 18 and over - Peer reviewed - Focus on end-of-life care - Related to pregnancy - Only including dialysis or transplant patients - Intervention-based (e.g., drug studies, dietary intake, etc.) Search strategy Searches were conducted between 31st January 2024 and 7th February 2024 then rerun on 12th December 2024, and 17th July 2025 to ensure no additional articles were missed. Electronic databases: CINAHL, MEDLINE, EMBASE, PsychINFO, SocINDEX, Web of Science; Cochrane reviews; grey literature and study registries. Medical subject headings have been adapted for each database with no time constraints. Citation searching was carried out during the same periods. Insert table 2 here Table 2 Search terminology Spider Terminology Search terms used Sample CKD Renal patients • chronic kidney disease or chronic renal failure or ckd or esrd or renal insufficiency or kidney failure Phenomenon of Interest Social Network Support Carer • AB Carer* OR caregiver* IR famil* OR friend* OR relative OR informal carer* OR “support network” OR “social support” OR social circle OR social relations OR personal communit* OR collective efficacy OR husband OR wife OR partner OR spouse OR significant other Design Interviews Focus groups • Qualitative OR ethnography OR interview OR focus group Evaluation Experience of patients and carers No additional terms added as covered in Phenomenon of interest. Research Type Qualitative Mixed methods No additional terms added as covered in Design. We identified published primary studies, text and opinion papers, and grey literature dedicated to the topic of self-management and social network support for patients after AKI or with CKD. Searches were conducted electronically and manually; the latter was conducted by searching for relevant articles in the reference lists of the selected articles. A 3-step search strategy was used in this review. An initial limited search of MEDLINE (Ovid), Embase, PsycINFO, and AMED was undertaken to identify articles on the topic, followed by an analysis of the text words contained in the titles and abstracts of retrieved papers and of the keywords used to describe the articles. The research team, consisting of lead author/researcher (BB) and research team members (IV and KV), discussed and developed the most appropriate keywords and synonyms for search activities utilising feedback from an academic librarian. Boolean operators (OR, AND), including adjacencies and truncations, were used to combine appropriate keywords and related terms. A second search across all included relevant databases using all keywords and index terms was performed. Following an iterative process, we became more familiar with the evidence base; thus, additional keywords, sources, and search terms found to be useful were incorporated into the search strategy as appropriate. The search used keywords and Medical Subject Headings (MeSH) terms, as presented in Table 1 . Search strategies were created for each database using relevant indices and free-text terms. Articles published from January 2009 to the present were included to ensure that the included reports are relevant to the current clinical practice and legislation. The year 2009 was chosen to ensure findings would be transferable to current care. Initial searches were limited to English; however, this limitation was removed for the 2025 search to ensure all literature was found. The third step was to include the search for additional studies by appraising and screening the reference lists of identified reports and articles, which was carried out by the primary author (BB). The titles and abstracts of all identified studies potentially eligible for inclusion in the review were screened, and full-text versions of the included articles were obtained. Data Extraction Following the search, all selected studies were imported into EndNote. Duplicate papers and publications that do not directly relate to the research question were eliminated. The author (BB) reviewed all potential articles, with final articles for screening decided with 2 co-authors (IV, KV) through independent article review and discussion. The 2 co-authors (IV, KV) pilot tested the screening of titles and abstracts for assessment against the inclusion criteria for the review. All potentially relevant full-text articles were retrieved and screened for inclusion in the final review and imported into the Rayyan system. Conflicts were discussed and resolved by BB, KV, and IV. The full text of selected papers was assessed in detail against the inclusion criteria by 3 independent reviewers. 14 publications were identified as relevant through the screening process. Standard extraction forms that included study type, participant recruitment, and type, and key themes were created in Excel and used to extract data from all eligible papers by BB. This was reviewed and amended following discussions with IV and KV. The aim was to ensure that all data relevant to addressing the research question was included. These can be found in supplementary materials 1. Quality appraisal All studies included were qualitative and were assessed for their quality utilising the CASP: Qualitative Studies checklist ( 40 ). Each full-text paper was quality assessed by BB in parallel with data extraction. This quality assessment was discussed with IV and KV, and any conflicts resolved with discussion. Data synthesis A narrative synthesis was undertaken following the stages outlined in the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews ( 41 ). Data was collected that addressed the key outcomes for this study, with textual data collated on data extraction spreadsheets. This focused on social network involvement in care for people with CKD stages 1–4 across the lifespan. Data was collected using aspects of thematic synthesis, with a thematic framework being developed. Themes were developed and refined as necessary with the addition of each study. Following the initial author (BB) development of themes, these were discussed and further refined with IV and KV. This was done through discussion and repeated review of the initial studies, with any conflicts resolved through discussion. Results The 14 included papers used semi-structured interviews ( 7 ), focus groups ( 2 ), both semi-structured interviews and focus groups ( 4 ), and 1 qualitative content data analysis of an online peer support group. None of the studies included within the review had a primary focus on social network involvement in health. A total of 560 participants were included in the 14 studies, with 287 people living with CKD, 218 social network members, 30 clinicians, 6 peer group mentors, and 4 religious leaders. 10 of the 14 studies only included people living with CKD stages 3–5. This means social network implications for early CKD are not well described by these studies. There was limited description of socio-economic backgrounds, with educational level (9/14 papers) and employment (5/14 papers) being described. People aged 18–90 were included, with people living with CKD, age ranges, gender, and ethnicity being well described. For social network members, age and ethnicity were less well described. Only 157 of the social network members had relationships described, of these the majority, 150 (96%) were family members − 95 marital or non-marital spouses, 39 parents, 10 siblings, 6 children – and only 4 were friends and 3 were another relation. This lack of information and the almost exclusive focus on support from family members may therefore mean that these studies may not well describe the impact of the wider social network on care. The studies were carried out in the UK ( 5 ), United States of America ( 4 ), Canada ( 2 ), Denmark ( 1 ) and Australia ( 1 ), with few of the studies reporting whether the patients were from rural or urban backgrounds. 11 of the 14 studies recruited participants only from nephrology outpatient clinics, with 1 study recruiting from both GP surgeries and nephrology outpatient clinics, 1 study recruiting through social media and 1 study using public posts in an online forum. A table for the papers can be found in summary Table 1 . Thematic development. Data from all included studies were grouped based on evidence regarding social network members and people living with kidney disease. Through interpretive synthesis of the included studies, we identified four recurring themes that illustrate the complexity of social network involvement in CKD self-management. 4 themes were developed: The burden of kidney disease uncertainty Everyday challenges of managing CKD ‘The loneliest disease’ The role of Peer Support Theme 1. The burden of kidney disease uncertainty Many people living with kidney disease were uncertain about what CKD is and what it means for their health. Thus, some people overestimated the impact of their diagnosis, “ 35% kidney function - I thought that was a death sentence ” ( 42 ), “ I just lost it, I just fell apart” ( 43 ). Whilst others reported that they did not appreciate the impact of the severity of their illness- “ the doctor said ‘Or we can wait until you need a kidney transplant’, and that’s when it really hit me ” ( 42 ). These experiences were in relation to the uncertain trajectory of illness progression and diagnostic and communication hesitancy on the part of healthcare professionals. Participants reported that they found information from kidney specialist teams to be beneficial, but due to the limited access to kidney specialists found they had persistent knowledge gaps that were unable to be addressed by other non-kidney specialists ( 44 ). Both people living with CKD and social network members found that meaningful information helped empower and engage them, and removed fear, and that this was best sourced from kidney specialists ( 42 ). Meaningful information was deemed to be clear, accurate, and directly related to CKD ( 42 ), tailored to the context of the patient/caregivers' situation and given empathetically ( 46 ). In some studies participants reported that outside the world of kidney specialists they experienced healthcare professionals with limited understanding of kidney disease. They felt non- renal professionals were unable to provide them with the education and information they required ( 45 ) or offered advice that conflicted with that given by kidney specialists ( 46 ). In the Beadlands study ( 42 ), it was found that nephrology input was required to be able to ensure information was given at a time when it would be beneficial and appropriate. This need for nephrology specific input led to further challenges for people with CKD due to the uncertainty and unknowns they were facing as to what they can expect and what they may need to do: “ you can’t always live in the anxiety of the future ” (young woman with CKD) ( 42 ). Uncertainty in illness progression The progression of CKD is described by social network members as an initial silent trajectory, without specific recognised signs, with many studies reporting that patients and caregivers were not aware of the impact and chronicity of CKD at the point of diagnosis ( 44 ). The absence of observable and experiential signs of CKD has a serious impact on the mental health and anxiety levels of people living with CKD and the social network members who support them ( 47 ). The experience of diagnostic uncertainty felt like a “ black cloud ” hanging over them, whilst waiting for kidney function to deteriorate (social network member ( 44 ). In one study participants reported that, as a way of reducing uncertainty, they wanted to change their living arrangements and ensure they lived near a renal unit in the future, in preparation for their illness deteriorating ( 46 ). Diagnostic and communication hesitancy by healthcare professionals People with CKD and their network members felt unsupported and misunderstood by healthcare professionals ( 42 , 48 ). Advanced care planning, involving prognostic discussions, was viewed by healthcare professionals as an important part of shared decision making ( 49 ). However, the perceived challenges associated with these discussions led to diagnostic and communication hesitancy. Kidney specialists felt unsure about what information to share, and how to strike, what they saw as, a balance between overloading/ frightening people and providing them with enough information to be able to actively participate in disease modification ( 46 ). In contrast, participants reported that information on CKD as an illness given to them by a healthcare professional was important to help them understand their condition, plan for the future, and manage illness uncertainty ( 50 ). Additionally, when they received oral information from kidney specialists, this assisted them in contextualising the information and reduced their burden “ I believe that the oral (information) is better coped with than written. You must get home and prepare yourself for a read. That is not easy when you are with someone who is sick ” ( 51 ). People living with CKD reported a lack of knowledge and understanding around CKD management from non-renal professionals, which had an impact the quantity and quality of the information provided, contributing to the uncertainty of illness. Diagnostic and communication hesitancy could also be due to a perceived attempt by healthcare professionals to protect people from excessive worry, or a lack of knowledge (by non-renal professionals), but had the same impact on people living with CKD and social network members, leading to experiences of uncertainty and anxiety ( 42 , 45 )( 53 ). Additionally, when information was not provided, or poorly provided ( 44 ) this directly impacted people’s choices about treatment ( 46 ) and led to an inability to fully prepare for the future ( 45 ). For example, some patients perceived their CKD not to be a significant problem as the health professionals providing their care displayed a lack of concern, with one patient reflecting “ I wasn’t in pain, so I didn’t think anything was wrong with my kidneys ” ( 52 ). Both people living with CKD and social network members reported a reliance on the information and advice that healthcare professionals provided, and that this helped them self-manage successfully, and reduced uncertainty ( 42 ). Theme 2: Everyday challenges of managing CKD Many of the included studies highlighted the daily challenges that people living with CKD and their network members face (( 42 ), ( 44 , 46 , 53 )). These include: managing fluctuations in health-energy levels ( 42 ), body image ( 42 ) and multiple competing medical conditions ( 46 ). The psychological challenges experienced ( 48 , 50 , 54 )) included anxiety, depression, and negative emotions. Managing multiple medical conditions was challenging due to the need to manage the medications burden, alongside the substantial work required in co-ordinating formal and informal aspects of healthcare ( 46 ). This included arranging transport for all the different appointments, organising prescriptions, managing appointments and requirements that were often spread between primary and secondary care, and sometimes between several different secondary care organisations. Patients found this overwhelming and sometimes exhausting “ I just get a bit fed up sometimes of all these visits ( 46 )”. Participants also reported emotional and psychological challenges when accessing information and tangible support ( 44 ). This was related to the complexities of initiating, managing, and maintaining relationships ( 53 ) and managing the expectations of others. For close social network members, this was sometimes about managing roles and responsibilities “(my) husband gets tired of me not being able to do stuff ” ( 42 ). Whilst when dealing with non-kidney specialists, this was sometimes about managing their expectations and limited knowledge of CKD, “ the pressure to breastfeed was unbelievable ” ( 42 ). Frustration and depression were often triggered by the everyday challenges faced, but when they managed to successfully overcome challenges, this gave participants hope for the future ( 42 ). Young women reported that when challenges were mitigated or addressed, they were better able to focus their attention on fulfilling their everyday roles within life, have life ambitions, and, in general, get on with their lives. Where people adopted health promoting behaviours they did not necessarily associate these with self-management and kidney health. One participant shared “I was drinking more water anyway, but I didn’t know that this was helping my kidneys” ( 52 ). Social network members reported daily struggles with their own emotions, the impact on their lifestyle, and supporting others both emotionally and practically ( 50 ). Social network members reported that when their loved ones experienced fluctuations in health, different levels and types of support were required from them, and this often led to caregivers putting their own physical and mental health needs last ( 54 ). This sometimes led to negative emotions and a negative impact on their quality of life ( 50 ). Social network members reported that they are often expected to work within the inflexible, unfamiliar, and disjointed health and social care systems ( 55 ), while also feeling poorly integrated into them. They felt that they were “ pushed from pillar to post ” when looking for support ( 45 ) within the healthcare system. The complex structure of healthcare systems placed a distance between social network members and healthcare professionals, and this made healthcare professionals difficult to access ( 45 ). This experience of challenging interactions within the healthcare system was reported by people living with CKD and caregivers, and there was no discernible difference when people had wider support from their own social network. Social network members felt they were often expected to fill gaps in the healthcare system, without being integrated into it or acknowledged. This made them feel invisible and taken for granted by healthcare professionals ( 55 ), which caused frustration and negatively impacted their views about the healthcare system and their relationships with healthcare providers ( 45 ). Whilst social network members recognised that the healthcare system was there to support the “ patient ” as caregivers, they felt that they “ didn’t count ”, were “ dismissed more than supported” ( 45 ), had a sense that, as far as healthcare providers were concerned, “maybe they don’t even know I exist” ( 55 ). Theme 3: ‘The loneliest disease’ People living with CKD and their social network members frequently reported feeling lonely and isolated (( 42 ) ( 44 , 45 ) 53). This was partly attributed to a lack of societal awareness and visibility of CKD, which had an impact on relationships with employers, friends, and partners. One patient shared “ I’ve never met anyone else with this. It makes you feel like you’re the only one ” Participants expressed frustration at having to constantly explain and justify their illness to others, often feeling that CKD lacked recognition compared to other conditions “ People aren’t wearing ribbons or bands. It’s not something that people intrinsically understand ” ( 42 ). This led to CKD being described as ‘ the loneliest disease’ ( 44 ). The invisibility of illness, combined with the daily demands of self-management, amplified feelings of isolation. To avoid anticipated stigma, many individuals chose to withhold or minimise disclosure of their conditions in both social and work settings. Young adults reported difficulties disclosing their illness in romantic and friendship contexts often led to rejection: “ as soon as I mention, like me being poorly and dialysis and the fact of a transplant they are gone ” ( 53 ). This further exacerbated their sense of isolation. The strain on work, valued social roles, and daily life Living with CKD placed a significant strain on daily life, especially in managing work responsibilities. Many individuals struggled to balance their health with professional demands, with some reporting feelings of uselessness due to their inability to work: “ laying there, feeling bad about everything….I can’t work anymore” ( 43 ). Employers and colleagues were felt to frequently underappreciate the implications of the illness, contributing to misunderstandings and limited accommodations. ( 42 ). This burden extended to social network members, who often took on emotional and practical caregiving roles. The time required to do this led to concerns over how this could be managed, as it was reported to significantly conflict with their work commitments ( 46 , 50 , 51 ). The emotional labour of caregiving often went unrecognised, increasing feelings of stress and caregiver fatigue. Shifting relationships and coping with emotional burdens As CKD progressed, both patients and their social network members experienced a reduction in the size and strength of their social network ( 55 ). This was attributed to lifestyle changes that limited access to friends and family ( 54 ), reduced participation in social activities ( 46 ), and self-imposed distancing from others as a way of reducing the burden on them ( 44 , 45 ). Social network members also noted that caregiving responsibilities increased their isolation from their own friends and family, who participants felt did not understand or support their caregiving role ( 45 ). The emotional and physical toll of caregiving was reported as significant, with many struggling to balance these responsibilities alongside personal needs. This led to missed social activities, difficulty in planning, and feelings of self-neglect ( 45 , 51 ). Some caregivers reported feeling unsupported by friends, family, clinicians, while they prioritised the needs of the person living with CKD, they neglected their own needs ( 54 ). These dynamics could lead to feelings of resentment and anger towards people living with CKD ( 50 ) and negatively affected relationships, including spousal separation ( 49 ). People living with CKD and their caregivers employed coping strategies such as humour and maintaining a positive outlook to manage the emotional weight of their experiences ( 46 , 50 ). Theme 4: The role of peer support Peers- people with CKD diagnosis or their network members were found to offer shared experiences and emotional validation, helping both patients and caregivers navigate the uncertainties of CKD, One patient shared “ I’ve never met anyone else with this. It makes you feel like you’re the only one ” ( 52 ) Access to peer support helped maintain existing connection and build new ones while living with CKD ( 44 ), and was most. beneficial when there was good rapport and where support could flex with the requirements and wellness of the person who was being supported ( 54 ). Peer support was deemed valuable by people living with CKD and social network members alike. Peers with kidney disease were seen as a resource in navigating uncertainty by helping to contextualise the future course of CKD progression, which allowed them to feel in control ( 54 ). The support of people with a similar lived experience was important, as it was felt that their existing social network or healthcare professionals ( 44 ) could not fully relate to their situation “ no-one can understand this particular hell we are both in ”. This was because participants felt peers would be more honest about the challenges faced when living with CKD. They were able to be honest about their own illness without evoking unwanted sympathy or pity, which they experienced from their other social network members. The support received from peers was highly valued “ I don’t want sympathy… it’s the empathy ” this alleviates feelings of isolation ( 44 ). How peer support, deemed to be valuable, was sourced varied between studies. Respondents discussed two broad types of peer support: formal and informal. Formal peer support included connections through healthcare professionals, e.g., being invited to attend a peer support meeting or being linked to a peer support mentor (( 44 , 53 , 54 ). Informal peer support was where people found others with similar experiences through chance encounters, e.g., knowing others with CKD, meeting them in waiting rooms, or online. Participants in one study reported that they did not build meaningful peer connections in some of the informal encounters they had, such as meeting other people with CKD in waiting rooms ( 44 ). Such incidental encounters did not meet all their needs ( 54 ), such as answering questions about disease progression or treatment options, and there was a requirement for a more formalised structure to peer support. However, other participants found that the type of formalised peer support that was available to them (such as information sessions from people living with CKD) had a structure restrictive to developing relationships and was less valued ( 54 ) than informal peer support. Organised, formal peer support was mostly discussed in negative terms. This was because respondents felt such support may be unavailable when needed, and if available, may require commitment that may be difficult to make ( 54 ). Additionally, such an environment was seen as uncomfortable for people who are shy, not sufficiently confident, or not very sociable ( 54 ). It was also recognised that for formalised peer support to be beneficial, it was important that people were able to maintain ‘normal’ friendships outside such groups. These were highly valued relationships that did not focus on illness ( 53 )“ I think they gave me the chance to meet other young adults on PD [peritoneal dialysis] but I did not really want to meet someone anyway. I just wanted to get on with my life and see my normal friends ” ( 53 ). Within the included articles, there was a lack of discussion around socio-economic variation and whether any additional factors would be required. Both Social network members and people with CKD utilised online forums to find peer support to share intimate experiences and feelings, which they might have felt uncomfortable doing in a face-to-face formal (or informal) peer support setting ( 42 , 50 ). They found it beneficial to connect with peers in an online forum as these offered answers to very specific questions, alleviated feelings of isolation, and provided necessary social support, such as being able to share their emotions and frustrations anonymously and without feeling judged ( 50 ). Another type of non-illness-focused support that was valued was spiritual peer support. This was reported by one study ( 43 ), which found that people living with CKD experienced a supportive community within religious groups. Hospitals and clinics were not considered to be gathering places where one can experience community building and support, which was in contrast to their experiences in church. They also found that spirituality appeared to give a means of understanding and contextualising CKD to their everyday life, which led to a more positive experience. This, in turn, led to improved self-management, including more productive interactions with health care professionals. Participants reported that even when their health prevented them from attending church, the churchgoers came to them, meaning that the support provided by those within the church group continued as illness progressed. This suggests that a range of community resources might be important for the emotional wellbeing ( 43 ) of people with CKD and members of their support networks. Discussion This is the first narrative review that explores the role of social networks in supporting the self-management of people living with CKD. Although most included studies originally focused on spouses and immediate caregivers, our synthesis shows that, similar to network support for people with other long-term conditions, it is a much wider array of relationships — distant family members, peers, friends, healthcare professionals, religious leaders and congregations, and online communities— that provide practical, emotional, and informational support and shape the daily experiences, self-management practices, and health trajectories of people with CKD. This study found that experiences specific to living with CKD, such as diagnostic and communication hesitancy by professionals, the social invisibility of the illness, the invisibility of symptoms, and the limited support available through the healthcare system shaped the process of engagement of network support and the contexts in which this was done or avoided. Understanding uncertainty in CKD and the role of social networks in CKD self-management Chronic disease literature demonstrates that self-management is not solely an individual responsibility but is a relational practice deeply embedded in social contexts and involving negotiations of valued identities and social roles ( 56 ). In contrast to other long-term conditions, CKD presents unique self-management challenges due to its frequently silent progression and diagnostic ambiguity, particularly in the early stages. Additionally, whereas other chronic illnesses benefit from clearer guidelines, more consistency in knowledge and communication within primary and secondary care, and predictable illness trajectories, CKD self-management frequently involves navigating shifting boundaries of needed changes without clarification or validation from healthcare professionals. For both individuals with CKD and their network members, the uncertainty about “what is the illness” and the lack of clarity as to “what needs to be done” also makes it difficult to engage network support and distribute responsibilities, as the work is not specified. This ambiguity leaves it to individuals with CKD and their network members to work out the meaning, priorities, and specifics of needed self-management practices, which they often do in an ad hoc manner, leading to disjointed efforts of arranging and providing care, and contributing to a sense of anxiety and isolation. This can also lead to tensions within and poor engagement of the support networks, with possible further negative impact on adherence to treatment and lifestyle modifications ( 57 , 58 ). Limitations of the traditional medical model in CKD care and the burden this creates While professional support interventions are widely recognised as essential for self-management ( 59 , 60 ), this study highlights a mismatch between CKD’s uncertain early trajectory (i.e., non-linear illness progression) ( 61 ) and the healthcare system's reliance on a traditional medical model. The traditional medical model, defined as clinician-led- with treatment being decided, monitored, and amended by the physician ( 62 ). This model often fails to recognise CKD as an actionable diagnosis until later stages, meaning that support only becomes structured and consistent once individuals reach late-stage kidney disease. This reinforces a care gap in earlier stages- diagnosis without treatment pathways- which leads to diagnostic and communication hesitancy on the part of healthcare professionals and undermines both formal and informal self-management support. While the translation of medical knowledge about long-term conditions into everyday self-management practices is always complex and the medical model is limited in articulating illness management needs into the social contexts of illness ( 63 , 64 ), in the case of (the early stages of) CKD there are also tensions within the health service as to the care that is needed. Thus, many participants reported that the generalists offered conflicting or incomplete information. While renal specialists were valued for their ability to contextualise and personalise information, access to them was limited ( 64 ), leaving people with CKD to navigate contradictory information and manage uncertainty ( 65 ). Whilst other models have been designed and implemented in the care of patients with CKD ( 66 , 67 ), many participants in the included studies reported that meaningful engagement with the healthcare system only became consistent when they approached kidney failure. This makes self-management at earlier stages more precarious and shifts the burden onto people with CKD and members of their informal networks. People with CKD and network members reported having to independently source information, which relies on their ability to locate, contextualise, and critically interpret relevant health information ( 68 ). A key implication for service design is the need for accessible, stage-appropriate input from appropriately trained specialists to prevent knowledge gaps that inhibit effective self-management. The invisibility of CKD and attrition of network support Whilst many other medical conditions have no visible outward signs, such as diabetes or hypertension, this review highlighted that the invisibility of CKD is exacerbated by its societal invisibility. Unlike cancer or cardiovascular disease, which often elicit broad public support and awareness, CKD remains poorly understood, and participants within the studies often reported that the absence of a collective understanding of society further impacted their lived experience of disease management. This parrels findings from studies into conservatively managed kidney failure patients ( 69 ). Within this study participants described the illness as not only invisible, but also “intangible”—with symptoms that were hard to attribute and often mistaken for ageing— leading to profound feelings of uncertainty, disconnectedness, and a loss of control. Social network members of people with CKD often fail to understand why care is needed, what role they should play, or what outcomes to expect, leading to stress, guilt, and isolation. There is also limited support for, and recognition of their contribution within the formal healthcare system, which adds to the experience of caregiver burden, poor quality of life, and mental health ( 70 , 71 ). This aligns with previous research indicating that healthcare systems prioritise end-stage CKD care, leaving those with earlier stages and their carers feeling invisible ( 72 ). The lack of visible symptoms, coupled with poor public and clinical recognition of the early-stage CKD, creates significant barriers to mobilising social support and leads to the erosion of available informal support. This is particularly problematic over time when people with CKD need more help as their illness progresses to later stages. Efforts to better integrate formal and informal networks, such as community health and wellbeing workers (as found in the UK) ( 73 ) could offer pathways forward. These roles may bridge gaps by ensuring early identification of needs, coordinating community resources, and facilitating ongoing support for both the patient and social network members. Peer support as informal translation and belonging Peer support is widely recognised as an important aspect of self-management support. But in the context of earlier stages of CKD, where there is limited and inconsistent formal guidance, peer support emerged as a crucial mechanism for understanding illness progression, its articulation into everyday life experiences, and developing practical approaches to living with it. Informal, peer connections were especially valued, and online peer support provided an easy and flexible access that enabled individuals to discuss their illness openly and without fear of pity or judgment. This was also found when people were supported by religious or community groups, especially when their illness meant they were unable to take part in engaging in typical social activities. These informal relationships helped individuals make sense of illness experiences, identify meaningful roles, and locate a sense of belonging. The flexibility and accessibility of peer support were central to its effectiveness, suggesting that rigidly structured programs may not meet the diverse needs of CKD patients and caregivers. While peer support exists in many chronic conditions, its function in CKD as a “translational bridge” between uncertainty and action appears especially vital, given the lack of structured support currently available in early stages. Limitations. Most included studies focused on individuals with later-stage CKD who were already under nephrology care. As a result, the experiences and support needs of those with earlier-stage CKD, who are often managed in primary care, are underrepresented. This reflects a broader trend in healthcare overlooking people with early CKD. The findings from this study draw on qualitative synthesis, which, while rich in depth, may limit generalisability. The experiences of CKD patients and their social networks can vary widely depending on cultural, economic, and healthcare contexts. This divergence between research design and actual findings signals the importance of expanding the conceptualisation of social network support in CKD that goes beyond the household. Conclusion This review reveals how CKD, more than other long-term conditions, is shaped by diagnostic hesitancy, delayed and inconsistent formal support, and social invisibility, especially in early stages. Our findings indicate that in the absence of a clear care pathway, the current structure of support is only likely to work well for people with easy access to a specialist and informal peers. Such support can enable understanding of illness progression, meaningful engagement with self-management practices, and open up access to sustainable support from wider networks, while also reducing uncertainty and ambiguity. However, access to such support is only likely to be available to a small number of people with CKD. This demands a new approach to providing and integrating informal and professional care. Three key insights have arisen from this study: Early-stage CKD requires clearer communication at the point of diagnosis, and proactive support structures- both formal and informal- to prevent isolation, ambiguity, and delay in care. Healthcare systems need to consider how this can be embedded into care. Peer support and a sense of community belonging play a vital role in helping individuals navigate uncertainty and reclaim agency. Recognition of the importance of peer support and ensuring patients are appropriately signposted to these groups will assist in reducing isolation. Service design needs to consider how to embed renal specialist input, ensuring accessibility across the CKD trajectory and supporting the development of knowledge to reduce anxiety. This could include training non-renal staff to offer accurate advice, and utilising community facing roles, such as social prescribers, to bridge the gap between clinical and daily life. Future research should investigate how early-stage CKD patients and their network members can be better supported through integrated models that combine specialist knowledge, peer support, and community resources. A broader and more inclusive understanding of the role of social network members and the work that is undertaken by them is essential for improving CKD care. Abbreviations CKD= chronic kidney disease GFR= glomerular filtration rate eGFR= estimated glomerular filtration rate AKI= acute kidney injury UK= United Kingdom PRISMA= Preferred Reporting Items for Systematic Reviews and Meta-Analysis Declarations Ethics approval and consent to participate The narrative synthesis was conducted using secondary data extracted from previously published studies. Ethical approval for the original studies was obtained by the respective authors, as indicated in their publications. No additional ethical approval was necessary for this synthesis. Consent for publication Not applicable. Availability of data and materials The data generated and analysed during this study are available from the corresponding author. Competing interests The authors declare no competing interests. Funding The corresponding author received funding from the NIHR for a Doctoral Clinical Academic and Practitioner Fellowship award (NIHR 303069). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care Authors' contributions Becky Bonfield (BB), Dr Kristin Veighey (KV). Dr Tom Blakeman (TB), Dr Emma Murphy (EM), Dr Ivaylo Ivanov Vassilev (IV). BB, KV and IV designed the search strategy, analysis and thematic development. All authors provided critical feedback and helped shape the analysis of results and development of the manuscript. Acknowledgements We thank University of Southampton library team for assisting in the refinement of search strategy. The corresponding author thanks the renal and AKI teams at University Hospital Southampton NHS Foundation Trust for their ongoing and continuous support. References Bikbov B, Purcell CA, Levey AS, Smith M, Abdoli A, Abebe M, et al. Global, regional, and national burden of chronic kidney disease, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. The lancet. 2020;395(10225):709-33. Roderick P, Roth M, Mindell J. Prevalence of chronic kidney disease in England: findings from the 2009 health survey for England. J Epidemiol Community Health. 2011;65(Suppl 2):A12-A. Pollock C, James G, Sanchez JJG, Carrero JJ, Arnold M, Lam CS, et al. Healthcare resource utilisation and related costs of patients with CKD from the United Kingdom: a report from the DISCOVER CKD retrospective cohort. 2022. Stevens PE, Ahmed SB, Carrero JJ, Foster B, Francis A, Hall RK, et al. KDIGO 2024 clinical practice guideline for the evaluation and management of chronic kidney disease. Kidney international. 2024;105(4):S117-S314. Levin A, Ahmed SB, Carrero JJ, Foster B, Francis A, Hall RK, et al. Executive summary of the KDIGO 2024 Clinical Practice Guideline for the Evaluation and Management of Chronic Kidney Disease: known knowns and known unknowns. Kidney international. 2024;105(4):684-701. Krishnan A, Teixeira-Pinto A, Lim WH, Howard K, Chapman JR, Castells A, et al. Health-related quality of life in people across the spectrum of CKD. Kidney international reports. 2020;5(12):2264-74. Fletcher BR, Damery S, Aiyegbusi OL, Anderson N, Calvert M, Cockwell P, et al. Symptom burden and health-related quality of life in chronic kidney disease: A global systematic review and meta-analysis. PLoS medicine. 2022;19(4):e1003954. Schick-Makaroff K, Molzahn AE, Kalfoss M. Symptoms, coping, and quality of life of people with chronic kidney disease. Nephrology Nursing Journal. 2018;45(4):339-55. Forbes A, Gallagher H. Chronic kidney disease in adults: assessment and management. Clinical Medicine. 2020;20(2):128-32. Wouters OJ, O'donoghue DJ, Ritchie J, Kanavos PG, Narva AS. Early chronic kidney disease: diagnosis, management and models of care. Nature Reviews Nephrology. 2015;11(8):491-502. Fishbane S, Spinowitz B. Update on anemia in ESRD and earlier stages of CKD: core curriculum 2018. American Journal of Kidney Diseases. 2018;71(3):423-35. Bello AK, Alrukhaimi M, Ashuntantang GE, Basnet S, Rotter RC, Douthat WG, et al. Complications of chronic kidney disease: current state, knowledge gaps, and strategy for action. Kidney international supplements. 2017;7(2):122-9. Luyckx VA, Elmaghrabi A, Sahay M, Scholes-Robertson N, Sola L, Speare T, et al. Equity and Quality of Global Chronic Kidney Disease Care: What Are We Waiting for? American journal of nephrology. 2024;55(3):298-315. Vanholder R, Annemans L, Braks M, Brown EA, Pais P, Purnell TS, et al. Inequities in kidney health and kidney care. Nature Reviews Nephrology. 2023;19(11):694-708. Duff R, Awofala O, Arshad MT, Lambourg E, Gallacher P, Dhaun N, Bell S. Global health inequalities of chronic kidney disease: a meta-analysis. Nephrology Dialysis Transplantation. 2024;39(10):1692-709. Sawhney S, Blakeman T, Blana D, Boyers D, Fluck N, Nath M, et al. Care processes and outcomes of deprivation across the clinical course of kidney disease: findings from a high-income country with universal healthcare. Nephrology Dialysis Transplantation. 2023;38(5):1170-82. Sawhney S, Atherton I, Blakeman T, Black C, Cowan E, Croucher C, et al. Individual and neighborhood-level social and deprivation factors impact kidney health in the GLOMMS-CORE study. Kidney International. 2024;106(5):928-42. Lv J-C, Zhang L-X. Prevalence and disease burden of chronic kidney disease. Renal fibrosis: mechanisms and therapies. 2019:3-15. Lee M-C, Wu S-FV, Hsieh N-C, Tsai J-M. Self-management programs on eGFR, depression, and quality of life among patients with chronic kidney disease: a meta-analysis. Asian Nursing Research. 2016;10(4):255-62. Nguyen NT, Douglas C, Bonner A. Effectiveness of self‐management programme in people with chronic kidney disease: A pragmatic randomized controlled trial. Journal of advanced nursing. 2019;75(3):652-64. Taylor JS, Pinnock H, Epiphaniou E, Pearce G, Parke LH, Schwappach A, et al. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic RevIew of Self-Management Support for long-term conditions. Health Services and Delivery Research. 2014;2(53):1-580. Singh T. Social Networks in the Dialysis Unit: Can They Influence Patient Behavior? : LWW; 2021. p. 404-5. Lin T-K, Hsu B-C, Li Y-D, Chen C-H, Lin J-W, Chien C-Y, Weng C-Y. The impact of sources of perceived social support on readmissions in patients with heart failure. Journal of Psychosomatic Research. 2022;154:110723. Goto T, Yoshida K, Faridi MK, Camargo CA, Hasegawa K. Contribution of social factors to readmissions within 30 days after hospitalization for COPD exacerbation. BMC pulmonary medicine. 2020;20:1-10. Sezer TA, Çavuşoğlu H, Düzova A. Self‐management program for adolescents with chronic kidney disease: A randomized controlled trial. Journal of Renal Care. 2021;47(3):146-59. Shah JM, Ramsbotham J, Seib C, Muir R, Bonner A. A scoping review of the role of health literacy in chronic kidney disease self‐management. Journal of renal care. 2021;47(4):221-33. Lightfoot CJ, Wilkinson TJ, Vadaszy N, Graham‐Brown MP, Davies MJ, Yates T, Smith AC. Improving self‐management behaviour through a digital lifestyle intervention: An internal pilot study. Journal of Renal Care. 2024. Peng S, He J, Huang J, Lun L, Zeng J, Zeng S, et al. Self-management interventions for chronic kidney disease: a systematic review and meta-analysis. BMC nephrology. 2019;20:1-13. Havas K, Douglas C, Bonner A. Meeting patients where they are: improving outcomes in early chronic kidney disease with tailored self-management support (the CKD-SMS study). BMC nephrology. 2018;19:1-13. DiMatteo MR. Social support and patient adherence to medical treatment: a meta-analysis. Health psychology. 2004;23(2):207. Longley RM, Harnedy LE, Ghanime PM, Arroyo-Ariza D, Deary EC, Daskalakis E, et al. Peer support interventions in patients with kidney failure: A systematic review. Journal of Psychosomatic Research. 2023;171:111379. Berkman LF, Glass T, Brissette I, Seeman TE. From social integration to health: Durkheim in the new millennium. Social science & medicine. 2000;51(6):843-57. Ramírez-Perdomo CA, Solano-Ruíz MC. Social construction of the experience of living with chronic kidney disease. Revista latino-americana de enfermagem. 2018;26:e3028. Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. bmj. 2021;372. Vassilev I, Rogers A, Kennedy A, Koetsenruijter J. The influence of social networks on self-management support: a metasynthesis. BMC public health. 2014;14:1-12. Vassilev I, Rogers A, Sanders C, Kennedy A, Blickem C, Protheroe J, et al. Social networks, social capital and chronic illness self-management: a realist review. Chronic illness. 2011;7(1):60-86. Rogers A, Vassilev I, Sanders C, Kirk S, Chew-Graham C, Kennedy A, et al. Social networks, work and network-based resources for the management of long-term conditions: a framework and study protocol for developing self-care support. Implementation science. 2011;6:1-7. Reeves D, Blickem C, Vassilev I, Brooks H, Kennedy A, Richardson G, Rogers A. The contribution of social networks to the health and self-management of patients with long-term conditions: a longitudinal study. PloS one. 2014;9(6):e98340. Masic I, Sivic S, Toromanovic S, Borojevic T, Pandza H. Social networks in improvement of health care. Materia socio-medica. 2012;24(1):48. Programme CAS. CASP checklist: CASP qualitative studies checklist 2017 [ Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, et al. Guidance on the conduct of narrative synthesis in systematic reviews. A product from the ESRC methods programme Version. 2006;1(1):b92. Beanlands H, McCay E, Pahati S, Hladunewich MA. Through the Lens of Chronic Kidney Disease: A Qualitative Study of the Experiences of Young Women Living With CKD. Canadian journal of kidney health and disease. 2020;7:2054358120945475. Pham TV, Beasley CM, Gagliardi JP, Koenig HG, Stanifer JW. Spirituality, Coping, and Resilience Among Rural Residents Living with Chronic Kidney Disease. Journal of religion and health. 2020;59(6):2951-68. Elliott MJ, Love S, Fox DE, Verdin N, Donald M, Manns K, et al. 'It's the empathy'-defining a role for peer support among people living with chronic kidney disease: a qualitative study. BMJ open. 2022;12(5):e057518. Coumoundouros C, Farrand P, Sanderman R, von Essen L, Woodford J. "Systems seem to get in the way": a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease. BMC nephrology. 2024;25(1):7. Hounkpatin HO, Leydon GM, Veighey K, Armstrong K, Santer M, Taal MW, et al. Patients' and kidney care team's perspectives of treatment burden and capacity in older people with chronic kidney disease: a qualitative study. BMJ open. 2020;10(12):e042548. Milders J, Ramspek CL, Meuleman Y, Bos WJW, Michels WM, Konijn WS, et al. Dealing with an uncertain future: a survey study on what patients with chronic kidney disease actually want to know. Clinical Kidney Journal. 2024;17(8):sfae225. Lo C, Ilic D, Teede H, Cass A, Fulcher G, Gallagher M, et al. The Perspectives of Patients on Health-Care for Co-Morbid Diabetes and Chronic Kidney Disease: A Qualitative Study. PloS one. 2016;11(1):e0146615. Porteny T, Gonzales KM, Aufort KE, Levine S, Wong JB, Isakova T, et al. Treatment Decision Making for Older Kidney Patients during COVID-19. Clinical journal of the American Society of Nephrology : CJASN. 2022;17(7):957-65. Tuckey N, Duncanson E, Chur-Hansen A, Jesudason S. Using an international online forum to explore perspectives of caregivers of patients with chronic kidney disease. Journal of nephrology. 2022;35(1):267-77. Schjerlund M, Agnholt H, Gregersen LR, Heilesen T, Pedersen MK. Cognitive impairment in patients with chronic kidney disease-Next of kin's experiences. Journal of renal care. 2021;47(2):87-95. Lightfoot CJ, Wilkinson TJ, Graham-Brown MP, Smith AC. Supporting people with chronic kidney disease to self-manage their condition: understanding the lived experiences, needs and requirements, and barriers and facilitators. Journal of Nephrology. 2025:1-16. Coyne E, Langham H, Tomlin M, Hope W, Johnson C, Byrne C, et al. Young adults with chronic kidney disease: An exploration of their relationships and support networks. Journal of renal care. 2019;45(1):20-8. Taylor F, Gutteridge R, Willis C. Peer support for CKD patients and carers: Overcoming barriers and facilitating access. Health Expectations: An International Journal of Public Participation in Health Care & Health Policy. 2016;19(3):617-30. O'Hare AM, Szarka J, McFarland LV, Vig EK, Sudore RL, Crowley S, et al. "Maybe They Don't Even Know That I Exist": Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease. Clinical journal of the American Society of Nephrology : CJASN. 2017;12(6):930-8. Udlis KA. Self‐management in chronic illness: concept and dimensional analysis. Journal of Nursing and Healthcare of Chronic illness. 2011;3(2):130-9. Miller TA, DiMatteo MR. Importance of family/social support and impact on adherence to diabetic therapy. Diabetes, metabolic syndrome and obesity: targets and therapy. 2013:421-6. Irani E, Moore SE, Hickman RL, Dolansky MA, Josephson RA, Hughes JW. The contribution of living arrangements, social support, and self-efficacy to self-management behaviors among individuals with heart failure: a path analysis. Journal of Cardiovascular Nursing. 2019;34(4):319-26. Dineen-Griffin S, Garcia-Cardenas V, Williams K, Benrimoj SI. Helping patients help themselves: a systematic review of self-management support strategies in primary health care practice. PloS one. 2019;14(8):e0220116. Furler J, Walker C, Blackberry I, Dunning T, Sulaiman N, Dunbar J, et al. The emotional context of self-management in chronic illness: A qualitative study of the role of health professional support in the self-management of type 2 diabetes. BMC Health Services Research. 2008;8:1-9. Schell JO, O’Hare AM. Illness trajectories and their relevance to the care of adults with kidney disease. Current Opinion in Nephrology and Hypertension. 2013;22(3):316-24. Anderson RM. Patient empowerment and the traditional medical model: a case of irreconcilable differences? Diabetes care. 1995;18(3):412-5. Franklin M, Lewis S, Willis K, Bourke-Taylor H, Smith L. Patients’ and healthcare professionals’ perceptions of self-management support interactions: systematic review and qualitative synthesis. Chronic illness. 2018;14(2):79-103. Souza J, Magro M. Supported self-management as a tool to combat chronic conditions in Brazilian primary health care context. Nurse Care Open Access J. 2017;4(1):00100. Brashers DE, Goldsmith DJ, Hsieh E. Information seeking and avoiding in health contexts. Human communication research. 2002;28(2):258-71. Blakeman T, Blickem C, Kennedy A, Reeves D, Bower P, Gaffney H, et al. Effect of information and telephone-guided access to community support for people with chronic kidney disease: randomised controlled trial. PloS one. 2014;9(10):e109135. Blickem C, Blakeman T, Kennedy A, Bower P, Reeves D, Gardner C, et al. The clinical and cost-effectiveness of the BRinging Information and Guided Help Together (BRIGHT) intervention for the self-management support of people with stage 3 chronic kidney disease in primary care: study protocol for a randomized controlled trial. Trials. 2013;14:1-11. Champlin S, Mackert M, Glowacki EM, Donovan EE. Toward a better understanding of patient health literacy: A focus on the skills patients need to find health information. Qualitative Health Research. 2017;27(8):1160-76. Bristowe K, Selman L, Higginson IJ, Murtagh F. Invisible and intangible illness: a qualitative interview study of patients’ experiences and understandings of conservatively managed end-stage kidney disease. Annals of Palliative Medicine. 2019;8(2):121-9. Wilkinson AM, Lynn J. Caregiving for advanced chronic illness patients. Techniques in Regional Anesthesia and Pain Management. 2005;9(3):122-32. Duggleby W, Williams A, Ghosh S, Moquin H, Ploeg J, Markle-Reid M, Peacock S. Factors influencing changes in health related quality of life of caregivers of persons with multiple chronic conditions. Health and quality of Life Outcomes. 2016;14:1-9. Tong A, Sainsbury P, Chadban S, Walker RG, Harris DC, Carter SM, et al. Patients' experiences and perspectives of living with CKD. American Journal of Kidney Diseases. 2009;53(4):689-700. Care NAoP. [Available from: https://napc.co.uk/chww/. Fisher EB, Boothroyd RI, Coufal MM, Baumann LC, Mbanya JC, Rotheram-Borus MJ, et al. Peer support for self-management of diabetes improved outcomes in international settings. Health affairs. 2012;31(1):130-9. Additional Declarations No competing interests reported. Supplementary Files BMCNephsupplementarytableofarticles.docx Cite Share Download PDF Status: Published Journal Publication published 09 Dec, 2025 Read the published version in BMC Nephrology → Version 1 posted Editorial decision: Revision requested 12 Nov, 2025 Reviews received at journal 12 Nov, 2025 Reviews received at journal 10 Nov, 2025 Reviewers agreed at journal 10 Nov, 2025 Reviewers agreed at journal 10 Nov, 2025 Reviewers agreed at journal 09 Nov, 2025 Reviewers agreed at journal 08 Nov, 2025 Reviewers agreed at journal 08 Nov, 2025 Reviewers agreed at journal 08 Nov, 2025 Reviewers agreed at journal 08 Nov, 2025 Reviews received at journal 19 Oct, 2025 Reviewers agreed at journal 16 Oct, 2025 Reviewers invited by journal 16 Oct, 2025 Editor assigned by journal 16 Oct, 2025 Submission checks completed at journal 16 Oct, 2025 First submitted to journal 15 Oct, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7866009","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":530072282,"identity":"fbac04f7-2566-41b2-abb6-640895f8dba0","order_by":0,"name":"Becky Bonfield","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA7klEQVRIiWNgGAWjYBACAwYeIGkjwcDHkHwASfwAduUILWkSDGwMaQkMDAnEa2EAaskxIE6LOQPvwccFCRZybOw5nz98/GGTx8B++AEzzxncWiwb+JKNZyRIGLPxvN0mOSMhrZiBJ82AmecGHocd4DGT5v0hkdgmkbuNmSfhcGIDQw4DM88HAlp4EiTq2yRyHn8Ga+F/Q5yWBDaJHAZpsBYJkC14HGbZDPQLUIthG88zM8kZaWlAFz4zODgHj/fN2XsPPuZJqJPnZ09+/OGDjU1iP3/ywwdvjuHWwsCMLsDGgDdWRsEoGAWjYBQQAwBWPkez0MybDgAAAABJRU5ErkJggg==","orcid":"","institution":"University Hospital Southampton NHS Foundation Trust","correspondingAuthor":true,"prefix":"","firstName":"Becky","middleName":"","lastName":"Bonfield","suffix":""},{"id":530072283,"identity":"5fb5e666-91d5-4893-8276-60cf3d30de27","order_by":1,"name":"Kristin Veighey","email":"","orcid":"","institution":"University Hospital Southampton NHS Foundation Trust","correspondingAuthor":false,"prefix":"","firstName":"Kristin","middleName":"","lastName":"Veighey","suffix":""},{"id":530072284,"identity":"35cd5a9f-c1d4-4a70-b0ee-e03ded46df80","order_by":2,"name":"Thomas Blakeman","email":"","orcid":"","institution":"University of Manchester","correspondingAuthor":false,"prefix":"","firstName":"Thomas","middleName":"","lastName":"Blakeman","suffix":""},{"id":530072285,"identity":"0949fbc8-a633-420a-b779-1f0449916160","order_by":3,"name":"Emma Murphy","email":"","orcid":"","institution":"Coventry University","correspondingAuthor":false,"prefix":"","firstName":"Emma","middleName":"","lastName":"Murphy","suffix":""},{"id":530072286,"identity":"f4452d23-233e-440c-bd02-723247949885","order_by":4,"name":"Ivaylo Ivanov Vassilev","email":"","orcid":"","institution":"University of Southampton","correspondingAuthor":false,"prefix":"","firstName":"Ivaylo","middleName":"Ivanov","lastName":"Vassilev","suffix":""}],"badges":[],"createdAt":"2025-10-15 08:53:44","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7866009/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7866009/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12882-025-04658-3","type":"published","date":"2025-12-09T15:57:49+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":93658733,"identity":"19b013a0-48bf-4b3f-9f8e-156675287004","added_by":"auto","created_at":"2025-10-16 07:38:56","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":159410,"visible":true,"origin":"","legend":"","description":"","filename":"BMCnephrologyarticle..docx","url":"https://assets-eu.researchsquare.com/files/rs-7866009/v1/444c84334694fe976e780cfa.docx"},{"id":93657102,"identity":"70570009-dc54-4585-be77-8a5f16d11584","added_by":"auto","created_at":"2025-10-16 07:22:56","extension":"json","order_by":1,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":7765,"visible":true,"origin":"","legend":"","description":"","filename":"1515c5987b144d858b39875cb41c6d38.json","url":"https://assets-eu.researchsquare.com/files/rs-7866009/v1/6f61775dd33ee5efc92e61d7.json"},{"id":93658007,"identity":"baefd521-9551-4f67-a98e-c5d9092a3f22","added_by":"auto","created_at":"2025-10-16 07:30:56","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":45764,"visible":true,"origin":"","legend":"","description":"","filename":"BMCNephsupplementarytableofarticles.docx","url":"https://assets-eu.researchsquare.com/files/rs-7866009/v1/56d61ed3d6aeefffd6694817.docx"},{"id":93657105,"identity":"9dd7d854-e3b4-4ca1-9f75-b35520bd6550","added_by":"auto","created_at":"2025-10-16 07:22:56","extension":"xml","order_by":3,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":176418,"visible":true,"origin":"","legend":"","description":"","filename":"1515c5987b144d858b39875cb41c6d381enriched.xml","url":"https://assets-eu.researchsquare.com/files/rs-7866009/v1/830c9f7eb616b53813587615.xml"},{"id":93658008,"identity":"477c8f4b-e7df-4631-b1e4-e756441f5331","added_by":"auto","created_at":"2025-10-16 07:30:56","extension":"xml","order_by":4,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":173480,"visible":true,"origin":"","legend":"","description":"","filename":"1515c5987b144d858b39875cb41c6d381structuring.xml","url":"https://assets-eu.researchsquare.com/files/rs-7866009/v1/bc3db86e6ba03d3d4541e122.xml"},{"id":93657108,"identity":"182f7a96-c97e-4002-8f2d-309b98b180ce","added_by":"auto","created_at":"2025-10-16 07:22:56","extension":"html","order_by":5,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":187624,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-7866009/v1/9e0042c0c48e9ae44c614c85.html"},{"id":98244197,"identity":"5472c487-6778-429b-886a-03141025a29a","added_by":"auto","created_at":"2025-12-15 16:13:32","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":870032,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7866009/v1/042338be-5f46-4fb9-9d55-ff1313b47159.pdf"},{"id":93657104,"identity":"96c4f414-2bdc-4907-a4f7-d4930670ed84","added_by":"auto","created_at":"2025-10-16 07:22:56","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":45764,"visible":true,"origin":"","legend":"","description":"","filename":"BMCNephsupplementarytableofarticles.docx","url":"https://assets-eu.researchsquare.com/files/rs-7866009/v1/0d51b4a842c8be3dbb8bec28.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Understanding the role of social networks in supporting people living with chronic kidney disease. A narrative synthesis","fulltext":[{"header":"Background","content":"\u003cp\u003eChronic Kidney Disease (CKD) is a global health issue that affects approximately 9% of the world\u0026rsquo;s population (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e), with an estimated prevalence of 13% within the United Kingdom (UK) (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e), which is continuing to rise (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). CKD is defined as a reduction in kidney function for more than 90 days, and is classified based on cause, glomerular filtration rate (GFR) category, and albuminuria category (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). When using GFR categories Stage 1 is characterised by normal or increased kidney function (eGFR\u0026thinsp;\u0026ge;\u0026thinsp;90 mL/min/1.73m\u0026sup2;) with signs of kidney damage (such as albuminuria), while Stage 5 indicates kidney failure (eGFR\u0026thinsp;\u0026lt;\u0026thinsp;15 mL/min/1.73m\u0026sup2;), often requiring dialysis or a kidney transplant (\u003cspan additionalcitationids=\"CR6 CR7\" citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Healthcare resource utilisation for people with CKD and its associated costs impose a significant burden on the healthcare system, especially for those in advanced stages of CKD (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). Currently, CKD accounts for 1.3% of all NHS spending (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Alongside these financial and resource implications, CKD can have a detrimental effect on the physical and emotional well-being of people living with the disease, leading to a reduction in quality of life and psychological distress (\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eEarly stages of CKD (Stages 1\u0026ndash;3) may be asymptomatic, highlighting the importance of early detection and management to slow or halt progression and prevent complications (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). If CKD progresses, it can lead to significant complications that include kidney failure (in around 2% of those with CKD) and its associated complications, such as anaemia and bone disease. People with CKD are also at increased overall risk (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) of cardiovascular disease (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)- the leading cause of mortality in people with CKD (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eCKD presents significant challenges for individuals, and these challenges are exacerbated by healthcare inequalities. People from marginalised communities, including low-income individuals, racial and ethnic minorities, and rural populations, often face increased barriers to timely diagnosis, effective treatment, and care continuity (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Limited access to healthcare facilities, especially specialised kidney care, is a key challenge (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eWhilst there are health inequalities globally associated with differences in low, middle, and high-income countries (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e) there are also challenges within high-income countries where healthcare is free at the point of care, such as the UK. Those from deprived backgrounds have a higher burden of co-morbidities, experience kidney disease progression at a more rapid rate, and have worse clinical outcomes for both CKD and acute kidney injury (AKI) (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e).\u003c/p\u003e\u003cp\u003ePoorer care and outcomes are associated with area-level deprivation and are greatest in those individuals with early CKD (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). This group are known to often present with problems related to their kidney disease to urgent/ emergency care, and miss more routine monitoring appointments and testing (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). As the prevalence of CKD increases, especially amongst an aging population and for those people with co-existing chronic health conditions such as hypertension and diabetes mellitus (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e), understanding what management strategies are required is crucial. These strategies are essential to reduce the impact of CKD on people living with the condition, their social network members, and healthcare systems.\u003c/p\u003e\u003cp\u003eEffective self-management - the role individuals take in managing their health condition through everyday life adaptation related to behaviours, relationships, and lifestyle - has become essential for both individuals and the healthcare system. Self-management programmes for people with CKD have been shown to improve quality of life, reduce healthcare burden, and slow disease progression (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Self-management frameworks exist in several developed countries (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e), and in the UK, within the NHS Long Term Plan (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e), self-management is recognised as key to delivering care.\u003c/p\u003e\u003cp\u003eThere is a growing recognition that self-management involves different types of \u0026lsquo;work\u0026rsquo; (practical, emotional, relational) in addition to \u0026lsquo;illness work\u0026rsquo; (e.g. understanding and managing symptoms, taking medications) and that illness management is not an individual but a collective process. Specifically, members of people\u0026rsquo;s social networks \u0026ndash; the constellation of formal and informal relationships (e.g. friends, colleagues, family members, peers with common interests, healthcare professionals) around a person \u0026ndash; play an important role in enabling or preventing self-management (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Social networks shape self-management through the support and resources they provide (or restrict access to), by shaping perspectives towards health-related practices such as diet and exercise (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e), and as an integral part of people's identities, obligations, and valued roles (e.g., as parents, employees, friends, professionals).\u003c/p\u003e\u003cp\u003eThere is evidence that social networks play an important role in providing self-management support, for example by reducing readmissions to hospital after exacerbations in both acute illnesses and chronic illnesses, such as decompensated heart failure (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e) and chronic obstructive pulmonary disease (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). There is a body of literature on self-management for people living with significant CKD (\u003cspan additionalcitationids=\"CR26\" citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e), and it has been recognised that people living with CKD who are actively participating in self-management have improved health outcomes. These can include an impact on disease progression and quality of life (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eSimilarly, studies on diabetes self-management have demonstrated that family support and peer networks can significantly enhance medication adherence, physical activity, and dietary changes, which are essential for managing the disease (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). In the context of kidney failure, social support by peers has been found to influence treatment adherence and improve the overall well-being of patients receiving kidney replacement therapy (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). Whilst there is a wealth of evidence supporting people living with significant and severe CKD, there is limited evidence around the self-management support for those with mild to moderate CKD, who are mainly cared for in primary and community care. Additionally, there is limited understanding as to how social networks work as a whole system (rather than the contributions of specific types of relationships, e.g., peers, family members) in providing or limiting different types of support.\u003c/p\u003e\u003cp\u003eUnderstanding the experiences of people living with CKD and how their illness is managed in everyday life, alongside the role of their social networks, will help improve understanding of self-management practices and inform the development and implementation of self-management support interventions. Alongside this, it is important to understand the shape and structure of both formal and informal support to understand how this impacts and influences behaviours (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e). Social network members are perceived as a crucial part of living with CKD, often being considered as a disease that is not just lived by the person with it, but rather the whole family (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThis narrative review aims to address this gap by examining the work (emotional, practical, relational) carried out by the social network members of people living with CKD, and the role of social network support in shaping self-management behaviours and practices in different everyday settings.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThis paper presents a narrative review of the literature on the role of social networks in supporting people living with CKD. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidance (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e) was used to systematically search and identify relevant literature.\u003c/p\u003e\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eEligibility criteria\u003c/h2\u003e\u003cp\u003eThis review included studies investigating the role of the social network and its impact on self-management for people living with CKD. Social networks were defined as \u0026lsquo;the structure around people that is made up of individuals or organisations associated with one or more types of interdependence (friends, family, those with common interests, work, knowledge) which together form a \u0026lsquo;network\u0026rsquo; around the person\u0026rsquo; (\u003cspan additionalcitationids=\"CR36 CR37 CR38\" citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe primary concept of interest in this review is the experience of people living with kidney disease, their self-management, and the role of their social network support in managing their illness. The review considered studies that provide information about social networks, self-management, and the experience of people living with CKD. A full list of inclusion/ exclusion criteria can be found in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eInclusion/ exclusion criteria.\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eInclusion\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eExclusion\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e- Primary Research\u003c/p\u003e\u003cp\u003e- Involving adults aged 18 and over\u003c/p\u003e\u003cp\u003e- Peer reviewed\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e- Focus on end-of-life care\u003c/p\u003e\u003cp\u003e- Related to pregnancy\u003c/p\u003e\u003cp\u003e- Only including dialysis or transplant patients\u003c/p\u003e\u003cp\u003e- Intervention-based (e.g., drug studies, dietary intake, etc.)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eSearch strategy\u003c/h3\u003e\n\u003cp\u003eSearches were conducted between 31st January 2024 and 7th February 2024 then rerun on 12th December 2024, and 17th July 2025 to ensure no additional articles were missed. Electronic databases: CINAHL, MEDLINE, EMBASE, PsychINFO, SocINDEX, Web of Science; Cochrane reviews; grey literature and study registries. Medical subject headings have been adapted for each database with no time constraints. Citation searching was carried out during the same periods.\u003c/p\u003e\u003cp\u003eInsert table 2 here\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eSearch terminology\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSpider\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTerminology\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eSearch terms used\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSample\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eCKD\u003c/p\u003e\u003cp\u003eRenal patients\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026bull; chronic kidney disease or chronic renal failure or ckd or esrd or renal insufficiency or kidney failure\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePhenomenon of Interest\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSocial Network Support\u003c/p\u003e\u003cp\u003eCarer\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026bull; AB Carer* OR caregiver* IR famil* OR friend* OR relative OR informal carer* OR \u0026ldquo;support network\u0026rdquo; OR \u0026ldquo;social support\u0026rdquo; OR social circle OR social relations OR personal communit* OR collective efficacy OR husband OR wife OR partner OR spouse OR significant other\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eDesign\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eInterviews\u003c/p\u003e\u003cp\u003eFocus groups\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026bull; Qualitative OR ethnography OR interview OR focus group\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eEvaluation\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eExperience of patients and carers\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eNo additional terms added as covered in Phenomenon of interest.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eResearch Type\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eQualitative\u003c/p\u003e\u003cp\u003eMixed methods\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eNo additional terms added as covered in Design.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eWe identified published primary studies, text and opinion papers, and grey literature dedicated to the topic of self-management and social network support for patients after AKI or with CKD. Searches were conducted electronically and manually; the latter was conducted by searching for relevant articles in the reference lists of the selected articles.\u003c/p\u003e\u003cp\u003eA 3-step search strategy was used in this review. An initial limited search of MEDLINE (Ovid), Embase, PsycINFO, and AMED was undertaken to identify articles on the topic, followed by an analysis of the text words contained in the titles and abstracts of retrieved papers and of the keywords used to describe the articles.\u003c/p\u003e\u003cp\u003eThe research team, consisting of lead author/researcher (BB) and research team members (IV and KV), discussed and developed the most appropriate keywords and synonyms for search activities utilising feedback from an academic librarian. Boolean operators (OR, AND), including adjacencies and truncations, were used to combine appropriate keywords and related terms.\u003c/p\u003e\u003cp\u003eA second search across all included relevant databases using all keywords and index terms was performed. Following an iterative process, we became more familiar with the evidence base; thus, additional keywords, sources, and search terms found to be useful were incorporated into the search strategy as appropriate. The search used keywords and Medical Subject Headings (MeSH) terms, as presented in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. Search strategies were created for each database using relevant indices and free-text terms.\u003c/p\u003e\u003cp\u003eArticles published from January 2009 to the present were included to ensure that the included reports are relevant to the current clinical practice and legislation. The year 2009 was chosen to ensure findings would be transferable to current care. Initial searches were limited to English; however, this limitation was removed for the 2025 search to ensure all literature was found.\u003c/p\u003e\u003cp\u003eThe third step was to include the search for additional studies by appraising and screening the reference lists of identified reports and articles, which was carried out by the primary author (BB). The titles and abstracts of all identified studies potentially eligible for inclusion in the review were screened, and full-text versions of the included articles were obtained.\u003c/p\u003e\n\u003ch3\u003eData Extraction\u003c/h3\u003e\n\u003cp\u003eFollowing the search, all selected studies were imported into EndNote. Duplicate papers and publications that do not directly relate to the research question were eliminated. The author (BB) reviewed all potential articles, with final articles for screening decided with 2 co-authors (IV, KV) through independent article review and discussion.\u003c/p\u003e\u003cp\u003eThe 2 co-authors (IV, KV) pilot tested the screening of titles and abstracts for assessment against the inclusion criteria for the review. All potentially relevant full-text articles were retrieved and screened for inclusion in the final review and imported into the Rayyan system. Conflicts were discussed and resolved by BB, KV, and IV. The full text of selected papers was assessed in detail against the inclusion criteria by 3 independent reviewers. 14 publications were identified as relevant through the screening process.\u003c/p\u003e\u003cp\u003eStandard extraction forms that included study type, participant recruitment, and type, and key themes were created in Excel and used to extract data from all eligible papers by BB. This was reviewed and amended following discussions with IV and KV. The aim was to ensure that all data relevant to addressing the research question was included. These can be found in supplementary materials 1.\u003c/p\u003e\n\u003ch3\u003eQuality appraisal\u003c/h3\u003e\n\u003cp\u003eAll studies included were qualitative and were assessed for their quality utilising the CASP: Qualitative Studies checklist (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e). Each full-text paper was quality assessed by BB in parallel with data extraction. This quality assessment was discussed with IV and KV, and any conflicts resolved with discussion.\u003c/p\u003e\n\u003ch3\u003eData synthesis\u003c/h3\u003e\n\u003cp\u003eA narrative synthesis was undertaken following the stages outlined in the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e). Data was collected that addressed the key outcomes for this study, with textual data collated on data extraction spreadsheets. This focused on social network involvement in care for people with CKD stages 1\u0026ndash;4 across the lifespan. Data was collected using aspects of thematic synthesis, with a thematic framework being developed. Themes were developed and refined as necessary with the addition of each study. Following the initial author (BB) development of themes, these were discussed and further refined with IV and KV. This was done through discussion and repeated review of the initial studies, with any conflicts resolved through discussion.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eThe 14 included papers used semi-structured interviews (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e), focus groups (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e), both semi-structured interviews and focus groups (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e), and 1 qualitative content data analysis of an online peer support group. None of the studies included within the review had a primary focus on social network involvement in health.\u003c/p\u003e\u003cp\u003eA total of 560 participants were included in the 14 studies, with 287 people living with CKD, 218 social network members, 30 clinicians, 6 peer group mentors, and 4 religious leaders. 10 of the 14 studies only included people living with CKD stages 3\u0026ndash;5. This means social network implications for early CKD are not well described by these studies. There was limited description of socio-economic backgrounds, with educational level (9/14 papers) and employment (5/14 papers) being described.\u003c/p\u003e\u003cp\u003ePeople aged 18\u0026ndash;90 were included, with people living with CKD, age ranges, gender, and ethnicity being well described. For social network members, age and ethnicity were less well described. Only 157 of the social network members had relationships described, of these the majority, 150 (96%) were family members \u0026minus;\u0026thinsp;95 marital or non-marital spouses, 39 parents, 10 siblings, 6 children \u0026ndash; and only 4 were friends and 3 were another relation. This lack of information and the almost exclusive focus on support from family members may therefore mean that these studies may not well describe the impact of the wider social network on care.\u003c/p\u003e\u003cp\u003eThe studies were carried out in the UK (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e), United States of America (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e), Canada (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e), Denmark (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) and Australia (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e), with few of the studies reporting whether the patients were from rural or urban backgrounds. 11 of the 14 studies recruited participants only from nephrology outpatient clinics, with 1 study recruiting from both GP surgeries and nephrology outpatient clinics, 1 study recruiting through social media and 1 study using public posts in an online forum. A table for the papers can be found in summary Table \u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003cb\u003eThematic development.\u003c/b\u003e\u003c/p\u003e\u003cp\u003eData from all included studies were grouped based on evidence regarding social network members and people living with kidney disease. Through interpretive synthesis of the included studies, we identified four recurring themes that illustrate the complexity of social network involvement in CKD self-management.\u003c/p\u003e\u003cp\u003e4 themes were developed:\u003c/p\u003e\u003cp\u003e\u003cul\u003e\u003cli\u003e\u003cp\u003eThe burden of kidney disease uncertainty\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003eEveryday challenges of managing CKD\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003e\u0026lsquo;The loneliest disease\u0026rsquo;\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003eThe role of Peer Support\u003c/p\u003e\u003c/li\u003e\u003c/ul\u003e\u003c/p\u003e\n\u003ch3\u003eTheme 1. The burden of kidney disease uncertainty\u003c/h3\u003e\n\u003cp\u003eMany people living with kidney disease were uncertain about what CKD is and what it means for their health. Thus, some people overestimated the impact of their diagnosis, \u0026ldquo;\u003cem\u003e35% kidney function - I thought that was a death sentence\u003c/em\u003e\u0026rdquo; (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e), \u0026ldquo;\u003cem\u003eI just lost it, I just fell apart\u0026rdquo;\u003c/em\u003e (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e). Whilst others reported that they did not appreciate the impact of the severity of their illness- \u0026ldquo;\u003cem\u003ethe doctor said \u0026lsquo;Or we can wait until you need a kidney transplant\u0026rsquo;, and that\u0026rsquo;s when it really hit me\u003c/em\u003e\u0026rdquo; (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). These experiences were in relation to the uncertain trajectory of illness progression and diagnostic and communication hesitancy on the part of healthcare professionals.\u003c/p\u003e\u003cp\u003eParticipants reported that they found information from kidney specialist teams to be beneficial, but due to the limited access to kidney specialists found they had persistent knowledge gaps that were unable to be addressed by other non-kidney specialists (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). Both people living with CKD and social network members found that meaningful information helped empower and engage them, and removed fear, and that this was best sourced from kidney specialists (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). Meaningful information was deemed to be clear, accurate, and directly related to CKD (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e), tailored to the context of the patient/caregivers' situation and given empathetically (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e). In some studies participants reported that outside the world of kidney specialists they experienced healthcare professionals with limited understanding of kidney disease. They felt non- renal professionals were unable to provide them with the education and information they required (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e) or offered advice that conflicted with that given by kidney specialists (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e). In the Beadlands study (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e), it was found that nephrology input was required to be able to ensure information was given at a time when it would be beneficial and appropriate. This need for nephrology specific input led to further challenges for people with CKD due to the uncertainty and unknowns they were facing as to what they can expect and what they may need to do: \u0026ldquo;\u003cem\u003eyou can\u0026rsquo;t always live in the anxiety of the future\u003c/em\u003e\u0026rdquo; (young woman with CKD) (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e).\u003c/p\u003e\n\u003ch3\u003eUncertainty in illness progression\u003c/h3\u003e\n\u003cp\u003eThe progression of CKD is described by social network members as an initial silent trajectory, without specific recognised signs, with many studies reporting that patients and caregivers were not aware of the impact and chronicity of CKD at the point of diagnosis (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). The absence of observable and experiential signs of CKD has a serious impact on the mental health and anxiety levels of people living with CKD and the social network members who support them (\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e). The experience of diagnostic uncertainty felt like a \u0026ldquo;\u003cem\u003eblack cloud\u003c/em\u003e\u0026rdquo; hanging over them, whilst waiting for kidney function to deteriorate (social network member (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). In one study participants reported that, as a way of reducing uncertainty, they wanted to change their living arrangements and ensure they lived near a renal unit in the future, in preparation for their illness deteriorating (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e).\u003c/p\u003e\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003eDiagnostic and communication hesitancy by healthcare professionals\u003c/h2\u003e\u003cp\u003ePeople with CKD and their network members felt unsupported and misunderstood by healthcare professionals (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e). Advanced care planning, involving prognostic discussions, was viewed by healthcare professionals as an important part of shared decision making (\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e). However, the perceived challenges associated with these discussions led to diagnostic and communication hesitancy. Kidney specialists felt unsure about what information to share, and how to strike, what they saw as, a balance between overloading/ frightening people and providing them with enough information to be able to actively participate in disease modification (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e). In contrast, participants reported that information on CKD as an illness given to them by a healthcare professional was important to help them understand their condition, plan for the future, and manage illness uncertainty (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e). Additionally, when they received oral information from kidney specialists, this assisted them in contextualising the information and reduced their burden \u0026ldquo;\u003cem\u003eI believe that the oral (information) is better coped with than written. You must get home and prepare yourself for a read. That is not easy when you are with someone who is sick\u003c/em\u003e\u0026rdquo; (\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e).\u003c/p\u003e\u003cp\u003ePeople living with CKD reported a lack of knowledge and understanding around CKD management from non-renal professionals, which had an impact the quantity and quality of the information provided, contributing to the uncertainty of illness. Diagnostic and communication hesitancy could also be due to a perceived attempt by healthcare professionals to protect people from excessive worry, or a lack of knowledge (by non-renal professionals), but had the same impact on people living with CKD and social network members, leading to experiences of uncertainty and anxiety (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e, \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e)(\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eAdditionally, when information was not provided, or poorly provided (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e) this directly impacted people\u0026rsquo;s choices about treatment (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e) and led to an inability to fully prepare for the future (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e). For example, some patients perceived their CKD not to be a significant problem as the health professionals providing their care displayed a lack of concern, with one patient reflecting \u0026ldquo;\u003cem\u003eI wasn\u0026rsquo;t in pain, so I didn\u0026rsquo;t think anything was wrong with my kidneys\u003c/em\u003e\u0026rdquo; (\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e). Both people living with CKD and social network members reported a reliance on the information and advice that healthcare professionals provided, and that this helped them self-manage successfully, and reduced uncertainty (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eTheme 2: Everyday challenges of managing CKD\u003c/h2\u003e\u003cp\u003eMany of the included studies highlighted the daily challenges that people living with CKD and their network members face ((\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e), (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e, \u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e, \u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e)). These include: managing fluctuations in health-energy levels (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e), body image (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e) and multiple competing medical conditions (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e). The psychological challenges experienced (\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e, \u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e)) included anxiety, depression, and negative emotions.\u003c/p\u003e\u003cp\u003eManaging multiple medical conditions was challenging due to the need to manage the medications burden, alongside the substantial work required in co-ordinating formal and informal aspects of healthcare (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e). This included arranging transport for all the different appointments, organising prescriptions, managing appointments and requirements that were often spread between primary and secondary care, and sometimes between several different secondary care organisations. Patients found this overwhelming and sometimes exhausting \u0026ldquo;\u003cem\u003eI just get a bit fed up sometimes of all these visits\u003c/em\u003e (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e)\u0026rdquo;.\u003c/p\u003e\u003cp\u003eParticipants also reported emotional and psychological challenges when accessing information and tangible support (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). This was related to the complexities of initiating, managing, and maintaining relationships (\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e) and managing the expectations of others. For close social network members, this was sometimes about managing roles and responsibilities \u0026ldquo;(my) \u003cem\u003ehusband gets tired of me not being able to do stuff\u003c/em\u003e\u0026rdquo; (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). Whilst when dealing with non-kidney specialists, this was sometimes about managing their expectations and limited knowledge of CKD, \u0026ldquo;\u003cem\u003ethe pressure to breastfeed was unbelievable\u003c/em\u003e\u0026rdquo; (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). Frustration and depression were often triggered by the everyday challenges faced, but when they managed to successfully overcome challenges, this gave participants hope for the future (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). Young women reported that when challenges were mitigated or addressed, they were better able to focus their attention on fulfilling their everyday roles within life, have life ambitions, and, in general, get on with their lives.\u003c/p\u003e\u003cp\u003eWhere people adopted health promoting behaviours they did not necessarily associate these with self-management and kidney health. One participant shared \u0026ldquo;I was drinking more water anyway, but I didn\u0026rsquo;t know that this was helping my kidneys\u0026rdquo; (\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eSocial network members reported daily struggles with their own emotions, the impact on their lifestyle, and supporting others both emotionally and practically (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e). Social network members reported that when their loved ones experienced fluctuations in health, different levels and types of support were required from them, and this often led to caregivers putting their own physical and mental health needs last (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e). This sometimes led to negative emotions and a negative impact on their quality of life (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eSocial network members reported that they are often expected to work within the inflexible, unfamiliar, and disjointed health and social care systems (\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e), while also feeling poorly integrated into them. They felt that they were \u0026ldquo;\u003cem\u003epushed from pillar to post\u003c/em\u003e\u0026rdquo; when looking for support (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e) within the healthcare system. The complex structure of healthcare systems placed a distance between social network members and healthcare professionals, and this made healthcare professionals difficult to access (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e). This experience of challenging interactions within the healthcare system was reported by people living with CKD and caregivers, and there was no discernible difference when people had wider support from their own social network.\u003c/p\u003e\u003cp\u003eSocial network members felt they were often expected to fill gaps in the healthcare system, without being integrated into it or acknowledged. This made them feel invisible and taken for granted by healthcare professionals (\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e), which caused frustration and negatively impacted their views about the healthcare system and their relationships with healthcare providers (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e). Whilst social network members recognised that the healthcare system was there to support the \u0026ldquo;\u003cem\u003epatient\u003c/em\u003e\u0026rdquo; as caregivers, they felt that they \u0026ldquo;\u003cem\u003edidn\u0026rsquo;t count\u003c/em\u003e\u0026rdquo;, were \u0026ldquo;\u003cem\u003edismissed more than supported\u0026rdquo;\u003c/em\u003e (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e), had a sense that, as far as healthcare providers were concerned, \u0026ldquo;maybe they don\u0026rsquo;t even know I exist\u0026rdquo; (\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003eTheme 3: \u0026lsquo;The loneliest disease\u0026rsquo;\u003c/h2\u003e\u003cp\u003ePeople living with CKD and their social network members frequently reported feeling lonely and isolated ((\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e) (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e, \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e) 53). This was partly attributed to a lack of societal awareness and visibility of CKD, which had an impact on relationships with employers, friends, and partners. One patient shared \u0026ldquo;\u003cem\u003eI\u0026rsquo;ve never met anyone else with this. It makes you feel like you\u0026rsquo;re the only one\u003c/em\u003e\u0026rdquo; Participants expressed frustration at having to constantly explain and justify their illness to others, often feeling that CKD lacked recognition compared to other conditions \u0026ldquo;\u003cem\u003ePeople aren\u0026rsquo;t wearing ribbons or bands. It\u0026rsquo;s not something that people intrinsically understand\u003c/em\u003e\u0026rdquo; (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). This led to CKD being described as \u0026lsquo;\u003cem\u003ethe loneliest disease\u0026rsquo;\u003c/em\u003e (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe invisibility of illness, combined with the daily demands of self-management, amplified feelings of isolation. To avoid anticipated stigma, many individuals chose to withhold or minimise disclosure of their conditions in both social and work settings. Young adults reported difficulties disclosing their illness in romantic and friendship contexts often led to rejection: \u0026ldquo;\u003cem\u003eas soon as I mention, like me being poorly and dialysis and the fact of a transplant they are gone\u003c/em\u003e\u0026rdquo; (\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e). This further exacerbated their sense of isolation.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\u003ch2\u003eThe strain on work, valued social roles, and daily life\u003c/h2\u003e\u003cp\u003eLiving with CKD placed a significant strain on daily life, especially in managing work responsibilities. Many individuals struggled to balance their health with professional demands, with some reporting feelings of uselessness due to their inability to work: \u0026ldquo;\u003cem\u003elaying there, feeling bad about everything\u0026hellip;.I can\u0026rsquo;t work anymore\u0026rdquo;\u003c/em\u003e (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e). Employers and colleagues were felt to frequently underappreciate the implications of the illness, contributing to misunderstandings and limited accommodations. (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThis burden extended to social network members, who often took on emotional and practical caregiving roles. The time required to do this led to concerns over how this could be managed, as it was reported to significantly conflict with their work commitments (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e, \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e). The emotional labour of caregiving often went unrecognised, increasing feelings of stress and caregiver fatigue.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\u003ch2\u003eShifting relationships and coping with emotional burdens\u003c/h2\u003e\u003cp\u003eAs CKD progressed, both patients and their social network members experienced a reduction in the size and strength of their social network (\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e). This was attributed to lifestyle changes that limited access to friends and family (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e), reduced participation in social activities (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e), and self-imposed distancing from others as a way of reducing the burden on them (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e, \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e). Social network members also noted that caregiving responsibilities increased their isolation from their own friends and family, who participants felt did not understand or support their caregiving role (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe emotional and physical toll of caregiving was reported as significant, with many struggling to balance these responsibilities alongside personal needs. This led to missed social activities, difficulty in planning, and feelings of self-neglect (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e, \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e). Some caregivers reported feeling unsupported by friends, family, clinicians, while they prioritised the needs of the person living with CKD, they neglected their own needs (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e). These dynamics could lead to feelings of resentment and anger towards people living with CKD (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e) and negatively affected relationships, including spousal separation (\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e). People living with CKD and their caregivers employed coping strategies such as humour and maintaining a positive outlook to manage the emotional weight of their experiences (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec16\" class=\"Section2\"\u003e\u003ch2\u003eTheme 4: The role of peer support\u003c/h2\u003e\u003cp\u003ePeers- people with CKD diagnosis or their network members were found to offer shared experiences and emotional validation, helping both patients and caregivers navigate the uncertainties of CKD, One patient shared \u0026ldquo;\u003cem\u003eI\u0026rsquo;ve never met anyone else with this. It makes you feel like you\u0026rsquo;re the only one\u003c/em\u003e\u0026rdquo; (\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e) Access to peer support helped maintain existing connection and build new ones while living with CKD (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e), and was most. beneficial when there was good rapport and where support could flex with the requirements and wellness of the person who was being supported (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e).\u003c/p\u003e\u003cp\u003ePeer support was deemed valuable by people living with CKD and social network members alike. Peers with kidney disease were seen as a resource in navigating uncertainty by helping to contextualise the future course of CKD progression, which allowed them to feel in control (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe support of people with a similar lived experience was important, as it was felt that their existing social network or healthcare professionals (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e) could not fully relate to their situation \u0026ldquo;\u003cem\u003eno-one can understand this particular hell we are both in\u003c/em\u003e\u0026rdquo;. This was because participants felt peers would be more honest about the challenges faced when living with CKD. They were able to be honest about their own illness without evoking unwanted sympathy or pity, which they experienced from their other social network members. The support received from peers was highly valued \u0026ldquo;\u003cem\u003eI don\u0026rsquo;t want sympathy\u0026hellip; it\u0026rsquo;s the empathy\u003c/em\u003e\u0026rdquo; this alleviates feelings of isolation (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eHow peer support, deemed to be valuable, was sourced varied between studies. Respondents discussed two broad types of peer support: formal and informal. Formal peer support included connections through healthcare professionals, e.g., being invited to attend a peer support meeting or being linked to a peer support mentor ((\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e, \u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e, \u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e). Informal peer support was where people found others with similar experiences through chance encounters, e.g., knowing others with CKD, meeting them in waiting rooms, or online. Participants in one study reported that they did not build meaningful peer connections in some of the informal encounters they had, such as meeting other people with CKD in waiting rooms (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). Such incidental encounters did not meet all their needs (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e), such as answering questions about disease progression or treatment options, and there was a requirement for a more formalised structure to peer support. However, other participants found that the type of formalised peer support that was available to them (such as information sessions from people living with CKD) had a structure restrictive to developing relationships and was less valued (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e) than informal peer support.\u003c/p\u003e\u003cp\u003eOrganised, formal peer support was mostly discussed in negative terms. This was because respondents felt such support may be unavailable when needed, and if available, may require commitment that may be difficult to make (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e). Additionally, such an environment was seen as uncomfortable for people who are shy, not sufficiently confident, or not very sociable (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e). It was also recognised that for formalised peer support to be beneficial, it was important that people were able to maintain \u0026lsquo;normal\u0026rsquo; friendships outside such groups. These were highly valued relationships that did not focus on illness (\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e)\u0026ldquo;\u003cem\u003eI think they gave me the chance to meet other young adults on PD [peritoneal dialysis] but I did not really want to meet someone anyway. I just wanted to get on with my life and see my normal friends\u003c/em\u003e\u0026rdquo; (\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e). Within the included articles, there was a lack of discussion around socio-economic variation and whether any additional factors would be required.\u003c/p\u003e\u003cp\u003eBoth Social network members and people with CKD utilised online forums to find peer support to share intimate experiences and feelings, which they might have felt uncomfortable doing in a face-to-face formal (or informal) peer support setting (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e). They found it beneficial to connect with peers in an online forum as these offered answers to very specific questions, alleviated feelings of isolation, and provided necessary social support, such as being able to share their emotions and frustrations anonymously and without feeling judged (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eAnother type of non-illness-focused support that was valued was spiritual peer support. This was reported by one study (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e), which found that people living with CKD experienced a supportive community within religious groups. Hospitals and clinics were not considered to be gathering places where one can experience community building and support, which was in contrast to their experiences in church. They also found that spirituality appeared to give a means of understanding and contextualising CKD to their everyday life, which led to a more positive experience. This, in turn, led to improved self-management, including more productive interactions with health care professionals. Participants reported that even when their health prevented them from attending church, the churchgoers came to them, meaning that the support provided by those within the church group continued as illness progressed. This suggests that a range of community resources might be important for the emotional wellbeing (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e) of people with CKD and members of their support networks.\u003c/p\u003e\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis is the first narrative review that explores the role of social networks in supporting the self-management of people living with CKD. Although most included studies originally focused on spouses and immediate caregivers, our synthesis shows that, similar to network support for people with other long-term conditions, it is a much wider array of relationships \u0026mdash; distant family members, peers, friends, healthcare professionals, religious leaders and congregations, and online communities\u0026mdash; that provide practical, emotional, and informational support and shape the daily experiences, self-management practices, and health trajectories of people with CKD. This study found that experiences specific to living with CKD, such as diagnostic and communication hesitancy by professionals, the social invisibility of the illness, the invisibility of symptoms, and the limited support available through the healthcare system shaped the process of engagement of network support and the contexts in which this was done or avoided.\u003c/p\u003e\u003cp\u003e\u003cem\u003eUnderstanding uncertainty in CKD and the role of social networks in CKD self-management\u003c/em\u003e Chronic disease literature demonstrates that self-management is not solely an individual responsibility but is a relational practice deeply embedded in social contexts and involving negotiations of valued identities and social roles (\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e). In contrast to other long-term conditions, CKD presents unique self-management challenges due to its frequently silent progression and diagnostic ambiguity, particularly in the early stages. Additionally, whereas other chronic illnesses benefit from clearer guidelines, more consistency in knowledge and communication within primary and secondary care, and predictable illness trajectories, CKD self-management frequently involves navigating shifting boundaries of needed changes without clarification or validation from healthcare professionals. For both individuals with CKD and their network members, the uncertainty about \u0026ldquo;what is the illness\u0026rdquo; and the lack of clarity as to \u0026ldquo;what needs to be done\u0026rdquo; also makes it difficult to engage network support and distribute responsibilities, as the work is not specified. This ambiguity leaves it to individuals with CKD and their network members to work out the meaning, priorities, and specifics of needed self-management practices, which they often do in an ad hoc manner, leading to disjointed efforts of arranging and providing care, and contributing to a sense of anxiety and isolation. This can also lead to tensions within and poor engagement of the support networks, with possible further negative impact on adherence to treatment and lifestyle modifications (\u003cspan citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e, \u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e).\u003c/p\u003e\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e\u003ch2\u003eLimitations of the traditional medical model in CKD care and the burden this creates\u003c/h2\u003e\u003cp\u003eWhile professional support interventions are widely recognised as essential for self-management (\u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e, \u003cspan citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e), this study highlights a mismatch between CKD\u0026rsquo;s uncertain early trajectory (i.e., non-linear illness progression) (\u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e) and the healthcare system's reliance on a traditional medical model. The traditional medical model, defined as clinician-led- with treatment being decided, monitored, and amended by the physician (\u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e). This model often fails to recognise CKD as an actionable diagnosis until later stages, meaning that support only becomes structured and consistent once individuals reach late-stage kidney disease. This reinforces a care gap in earlier stages- diagnosis without treatment pathways- which leads to diagnostic and communication hesitancy on the part of healthcare professionals and undermines both formal and informal self-management support. While the translation of medical knowledge about long-term conditions into everyday self-management practices is always complex and the medical model is limited in articulating illness management needs into the social contexts of illness (\u003cspan citationid=\"CR63\" class=\"CitationRef\"\u003e63\u003c/span\u003e, \u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e64\u003c/span\u003e), in the case of (the early stages of) CKD there are also tensions within the health service as to the care that is needed. Thus, many participants reported that the generalists offered conflicting or incomplete information. While renal specialists were valued for their ability to contextualise and personalise information, access to them was limited (\u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e64\u003c/span\u003e), leaving people with CKD to navigate contradictory information and manage uncertainty (\u003cspan citationid=\"CR65\" class=\"CitationRef\"\u003e65\u003c/span\u003e). Whilst other models have been designed and implemented in the care of patients with CKD (\u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e, \u003cspan citationid=\"CR67\" class=\"CitationRef\"\u003e67\u003c/span\u003e), many participants in the included studies reported that meaningful engagement with the healthcare system only became consistent when they approached kidney failure. This makes self-management at earlier stages more precarious and shifts the burden onto people with CKD and members of their informal networks. People with CKD and network members reported having to independently source information, which relies on their ability to locate, contextualise, and critically interpret relevant health information (\u003cspan citationid=\"CR68\" class=\"CitationRef\"\u003e68\u003c/span\u003e). A key implication for service design is the need for accessible, stage-appropriate input from appropriately trained specialists to prevent knowledge gaps that inhibit effective self-management.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec19\" class=\"Section2\"\u003e\u003ch2\u003eThe invisibility of CKD and attrition of network support\u003c/h2\u003e\u003cp\u003eWhilst many other medical conditions have no visible outward signs, such as diabetes or hypertension, this review highlighted that the invisibility of CKD is exacerbated by its societal invisibility. Unlike cancer or cardiovascular disease, which often elicit broad public support and awareness, CKD remains poorly understood, and participants within the studies often reported that the absence of a collective understanding of society further impacted their lived experience of disease management.\u003c/p\u003e\u003cp\u003eThis parrels findings from studies into conservatively managed kidney failure patients (\u003cspan citationid=\"CR69\" class=\"CitationRef\"\u003e69\u003c/span\u003e). Within this study participants described the illness as not only invisible, but also \u0026ldquo;intangible\u0026rdquo;\u0026mdash;with symptoms that were hard to attribute and often mistaken for ageing\u0026mdash; leading to profound feelings of uncertainty, disconnectedness, and a loss of control.\u003c/p\u003e\u003cp\u003eSocial network members of people with CKD often fail to understand why care is needed, what role they should play, or what outcomes to expect, leading to stress, guilt, and isolation. There is also limited support for, and recognition of their contribution within the formal healthcare system, which adds to the experience of caregiver burden, poor quality of life, and mental health (\u003cspan citationid=\"CR70\" class=\"CitationRef\"\u003e70\u003c/span\u003e, \u003cspan citationid=\"CR71\" class=\"CitationRef\"\u003e71\u003c/span\u003e). This aligns with previous research indicating that healthcare systems prioritise end-stage CKD care, leaving those with earlier stages and their carers feeling invisible (\u003cspan citationid=\"CR72\" class=\"CitationRef\"\u003e72\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe lack of visible symptoms, coupled with poor public and clinical recognition of the early-stage CKD, creates significant barriers to mobilising social support and leads to the erosion of available informal support. This is particularly problematic over time when people with CKD need more help as their illness progresses to later stages. Efforts to better integrate formal and informal networks, such as community health and wellbeing workers (as found in the UK) (\u003cspan citationid=\"CR73\" class=\"CitationRef\"\u003e73\u003c/span\u003e) could offer pathways forward. These roles may bridge gaps by ensuring early identification of needs, coordinating community resources, and facilitating ongoing support for both the patient and social network members.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec20\" class=\"Section2\"\u003e\u003ch2\u003ePeer support as informal translation and belonging\u003c/h2\u003e\u003cp\u003ePeer support is widely recognised as an important aspect of self-management support. But in the context of earlier stages of CKD, where there is limited and inconsistent formal guidance, peer support emerged as a crucial mechanism for understanding illness progression, its articulation into everyday life experiences, and developing practical approaches to living with it. Informal, peer connections were especially valued, and online peer support provided an easy and flexible access that enabled individuals to discuss their illness openly and without fear of pity or judgment. This was also found when people were supported by religious or community groups, especially when their illness meant they were unable to take part in engaging in typical social activities. These informal relationships helped individuals make sense of illness experiences, identify meaningful roles, and locate a sense of belonging. The flexibility and accessibility of peer support were central to its effectiveness, suggesting that rigidly structured programs may not meet the diverse needs of CKD patients and caregivers.\u003c/p\u003e\u003cp\u003eWhile peer support exists in many chronic conditions, its function in CKD as a \u0026ldquo;translational bridge\u0026rdquo; between uncertainty and action appears especially vital, given the lack of structured support currently available in early stages.\u003c/p\u003e\u003cp\u003e\u003cem\u003eLimitations.\u003c/em\u003e\u003c/p\u003e\u003cp\u003eMost included studies focused on individuals with later-stage CKD who were already under nephrology care. As a result, the experiences and support needs of those with earlier-stage CKD, who are often managed in primary care, are underrepresented. This reflects a broader trend in healthcare overlooking people with early CKD.\u003c/p\u003e\u003cp\u003eThe findings from this study draw on qualitative synthesis, which, while rich in depth, may limit generalisability. The experiences of CKD patients and their social networks can vary widely depending on cultural, economic, and healthcare contexts.\u003c/p\u003e\u003cp\u003eThis divergence between research design and actual findings signals the importance of expanding the conceptualisation of social network support in CKD that goes beyond the household.\u003c/p\u003e\u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis review reveals how CKD, more than other long-term conditions, is shaped by diagnostic hesitancy, delayed and inconsistent formal support, and social invisibility, especially in early stages. Our findings indicate that in the absence of a clear care pathway, the current structure of support is only likely to work well for people with easy access to a specialist and informal peers. Such support can enable understanding of illness progression, meaningful engagement with self-management practices, and open up access to sustainable support from wider networks, while also reducing uncertainty and ambiguity. However, access to such support is only likely to be available to a small number of people with CKD. This demands a new approach to providing and integrating informal and professional care. Three key insights have arisen from this study:\u003c/p\u003e\u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eEarly-stage CKD requires clearer communication at the point of diagnosis, and proactive support structures- both formal and informal- to prevent isolation, ambiguity, and delay in care. Healthcare systems need to consider how this can be embedded into care.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003ePeer support and a sense of community belonging play a vital role in helping individuals navigate uncertainty and reclaim agency. Recognition of the importance of peer support and ensuring patients are appropriately signposted to these groups will assist in reducing isolation.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eService design needs to consider how to embed renal specialist input, ensuring accessibility across the CKD trajectory and supporting the development of knowledge to reduce anxiety. This could include training non-renal staff to offer accurate advice, and utilising community facing roles, such as social prescribers, to bridge the gap between clinical and daily life.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e\u003cp\u003eFuture research should investigate how early-stage CKD patients and their network members can be better supported through integrated models that combine specialist knowledge, peer support, and community resources. A broader and more inclusive understanding of the role of social network members and the work that is undertaken by them is essential for improving CKD care.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCKD= chronic kidney disease\u003c/p\u003e\n\u003cp\u003eGFR= glomerular filtration rate\u003c/p\u003e\n\u003cp\u003eeGFR= estimated glomerular filtration rate\u003c/p\u003e\n\u003cp\u003eAKI= acute kidney injury\u003c/p\u003e\n\u003cp\u003eUK= United Kingdom\u003c/p\u003e\n\u003cp\u003ePRISMA= Preferred Reporting Items for Systematic Reviews and Meta-Analysis\u003c/p\u003e"},{"header":"Declarations","content":"\u003cul type=\"disc\"\u003e\n \u003cli\u003eEthics approval and consent to participate\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eThe narrative synthesis was conducted using secondary data extracted from previously published studies. Ethical approval for the original studies was obtained by the respective authors, as indicated in their publications. No additional ethical approval was necessary for this synthesis.\u003c/p\u003e\n\u003cul type=\"disc\"\u003e\n \u003cli\u003eConsent for publication\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cul type=\"disc\"\u003e\n \u003cli\u003eAvailability of data and materials\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eThe data generated and analysed during this study are available from the corresponding author.\u0026nbsp;\u003c/p\u003e\n\u003cul type=\"disc\"\u003e\n \u003cli\u003eCompeting interests\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eThe authors declare no competing interests.\u0026nbsp;\u003c/p\u003e\n\u003cul type=\"disc\"\u003e\n \u003cli\u003eFunding\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eThe corresponding author received funding from the NIHR for a Doctoral Clinical Academic and Practitioner Fellowship award (NIHR 303069). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care\u003c/p\u003e\n\u003cul type=\"disc\"\u003e\n \u003cli\u003eAuthors\u0026apos; contributions\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eBecky Bonfield (BB), Dr Kristin Veighey (KV). Dr Tom Blakeman (TB), Dr Emma Murphy (EM), Dr Ivaylo Ivanov Vassilev (IV).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eBB, KV and IV designed the search strategy, analysis and thematic development. All authors provided critical feedback and helped shape the analysis of results and development of the manuscript.\u0026nbsp;\u003c/p\u003e\n\u003cul type=\"disc\"\u003e\n \u003cli\u003eAcknowledgements\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eWe thank University of Southampton library team for assisting in the refinement of search strategy. The corresponding author thanks the renal and AKI teams at University Hospital Southampton NHS Foundation Trust for their ongoing and continuous support.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eBikbov B, Purcell CA, Levey AS, Smith M, Abdoli A, Abebe M, et al. Global, regional, and national burden of chronic kidney disease, 1990\u0026ndash;2017: a systematic analysis for the Global Burden of Disease Study 2017. The lancet. 2020;395(10225):709-33.\u003c/li\u003e\n\u003cli\u003eRoderick P, Roth M, Mindell J. Prevalence of chronic kidney disease in England: findings from the 2009 health survey for England. J Epidemiol Community Health. 2011;65(Suppl 2):A12-A.\u003c/li\u003e\n\u003cli\u003ePollock C, James G, Sanchez JJG, Carrero JJ, Arnold M, Lam CS, et al. Healthcare resource utilisation and related costs of patients with CKD from the United Kingdom: a report from the DISCOVER CKD retrospective cohort. 2022.\u003c/li\u003e\n\u003cli\u003eStevens PE, Ahmed SB, Carrero JJ, Foster B, Francis A, Hall RK, et al. KDIGO 2024 clinical practice guideline for the evaluation and management of chronic kidney disease. Kidney international. 2024;105(4):S117-S314.\u003c/li\u003e\n\u003cli\u003eLevin A, Ahmed SB, Carrero JJ, Foster B, Francis A, Hall RK, et al. Executive summary of the KDIGO 2024 Clinical Practice Guideline for the Evaluation and Management of Chronic Kidney Disease: known knowns and known unknowns. Kidney international. 2024;105(4):684-701.\u003c/li\u003e\n\u003cli\u003eKrishnan A, Teixeira-Pinto A, Lim WH, Howard K, Chapman JR, Castells A, et al. Health-related quality of life in people across the spectrum of CKD. Kidney international reports. 2020;5(12):2264-74.\u003c/li\u003e\n\u003cli\u003eFletcher BR, Damery S, Aiyegbusi OL, Anderson N, Calvert M, Cockwell P, et al. Symptom burden and health-related quality of life in chronic kidney disease: A global systematic review and meta-analysis. PLoS medicine. 2022;19(4):e1003954.\u003c/li\u003e\n\u003cli\u003eSchick-Makaroff K, Molzahn AE, Kalfoss M. Symptoms, coping, and quality of life of people with chronic kidney disease. Nephrology Nursing Journal. 2018;45(4):339-55.\u003c/li\u003e\n\u003cli\u003eForbes A, Gallagher H. Chronic kidney disease in adults: assessment and management. Clinical Medicine. 2020;20(2):128-32.\u003c/li\u003e\n\u003cli\u003eWouters OJ, O\u0026apos;donoghue DJ, Ritchie J, Kanavos PG, Narva AS. Early chronic kidney disease: diagnosis, management and models of care. Nature Reviews Nephrology. 2015;11(8):491-502.\u003c/li\u003e\n\u003cli\u003eFishbane S, Spinowitz B. Update on anemia in ESRD and earlier stages of CKD: core curriculum 2018. American Journal of Kidney Diseases. 2018;71(3):423-35.\u003c/li\u003e\n\u003cli\u003eBello AK, Alrukhaimi M, Ashuntantang GE, Basnet S, Rotter RC, Douthat WG, et al. Complications of chronic kidney disease: current state, knowledge gaps, and strategy for action. Kidney international supplements. 2017;7(2):122-9.\u003c/li\u003e\n\u003cli\u003eLuyckx VA, Elmaghrabi A, Sahay M, Scholes-Robertson N, Sola L, Speare T, et al. Equity and Quality of Global Chronic Kidney Disease Care: What Are We Waiting for? American journal of nephrology. 2024;55(3):298-315.\u003c/li\u003e\n\u003cli\u003eVanholder R, Annemans L, Braks M, Brown EA, Pais P, Purnell TS, et al. Inequities in kidney health and kidney care. Nature Reviews Nephrology. 2023;19(11):694-708.\u003c/li\u003e\n\u003cli\u003eDuff R, Awofala O, Arshad MT, Lambourg E, Gallacher P, Dhaun N, Bell S. Global health inequalities of chronic kidney disease: a meta-analysis. Nephrology Dialysis Transplantation. 2024;39(10):1692-709.\u003c/li\u003e\n\u003cli\u003eSawhney S, Blakeman T, Blana D, Boyers D, Fluck N, Nath M, et al. Care processes and outcomes of deprivation across the clinical course of kidney disease: findings from a high-income country with universal healthcare. Nephrology Dialysis Transplantation. 2023;38(5):1170-82.\u003c/li\u003e\n\u003cli\u003eSawhney S, Atherton I, Blakeman T, Black C, Cowan E, Croucher C, et al. Individual and neighborhood-level social and deprivation factors impact kidney health in the GLOMMS-CORE study. Kidney International. 2024;106(5):928-42.\u003c/li\u003e\n\u003cli\u003eLv J-C, Zhang L-X. Prevalence and disease burden of chronic kidney disease. Renal fibrosis: mechanisms and therapies. 2019:3-15.\u003c/li\u003e\n\u003cli\u003eLee M-C, Wu S-FV, Hsieh N-C, Tsai J-M. Self-management programs on eGFR, depression, and quality of life among patients with chronic kidney disease: a meta-analysis. Asian Nursing Research. 2016;10(4):255-62.\u003c/li\u003e\n\u003cli\u003eNguyen NT, Douglas C, Bonner A. Effectiveness of self‐management programme in people with chronic kidney disease: A pragmatic randomized controlled trial. Journal of advanced nursing. 2019;75(3):652-64.\u003c/li\u003e\n\u003cli\u003eTaylor JS, Pinnock H, Epiphaniou E, Pearce G, Parke LH, Schwappach A, et al. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS \u0026ndash; Practical systematic RevIew of Self-Management Support for long-term conditions. Health Services and Delivery Research. 2014;2(53):1-580.\u003c/li\u003e\n\u003cli\u003eSingh T. Social Networks in the Dialysis Unit: Can They Influence Patient Behavior? : LWW; 2021. p. 404-5.\u003c/li\u003e\n\u003cli\u003eLin T-K, Hsu B-C, Li Y-D, Chen C-H, Lin J-W, Chien C-Y, Weng C-Y. The impact of sources of perceived social support on readmissions in patients with heart failure. Journal of Psychosomatic Research. 2022;154:110723.\u003c/li\u003e\n\u003cli\u003eGoto T, Yoshida K, Faridi MK, Camargo CA, Hasegawa K. Contribution of social factors to readmissions within 30 days after hospitalization for COPD exacerbation. BMC pulmonary medicine. 2020;20:1-10.\u003c/li\u003e\n\u003cli\u003eSezer TA, \u0026Ccedil;avuşoğlu H, D\u0026uuml;zova A. Self‐management program for adolescents with chronic kidney disease: A randomized controlled trial. Journal of Renal Care. 2021;47(3):146-59.\u003c/li\u003e\n\u003cli\u003eShah JM, Ramsbotham J, Seib C, Muir R, Bonner A. A scoping review of the role of health literacy in chronic kidney disease self‐management. Journal of renal care. 2021;47(4):221-33.\u003c/li\u003e\n\u003cli\u003eLightfoot CJ, Wilkinson TJ, Vadaszy N, Graham‐Brown MP, Davies MJ, Yates T, Smith AC. Improving self‐management behaviour through a digital lifestyle intervention: An internal pilot study. Journal of Renal Care. 2024.\u003c/li\u003e\n\u003cli\u003ePeng S, He J, Huang J, Lun L, Zeng J, Zeng S, et al. Self-management interventions for chronic kidney disease: a systematic review and meta-analysis. BMC nephrology. 2019;20:1-13.\u003c/li\u003e\n\u003cli\u003eHavas K, Douglas C, Bonner A. Meeting patients where they are: improving outcomes in early chronic kidney disease with tailored self-management support (the CKD-SMS study). BMC nephrology. 2018;19:1-13.\u003c/li\u003e\n\u003cli\u003eDiMatteo MR. Social support and patient adherence to medical treatment: a meta-analysis. Health psychology. 2004;23(2):207.\u003c/li\u003e\n\u003cli\u003eLongley RM, Harnedy LE, Ghanime PM, Arroyo-Ariza D, Deary EC, Daskalakis E, et al. Peer support interventions in patients with kidney failure: A systematic review. Journal of Psychosomatic Research. 2023;171:111379.\u003c/li\u003e\n\u003cli\u003eBerkman LF, Glass T, Brissette I, Seeman TE. From social integration to health: Durkheim in the new millennium. Social science \u0026amp; medicine. 2000;51(6):843-57.\u003c/li\u003e\n\u003cli\u003eRam\u0026iacute;rez-Perdomo CA, Solano-Ru\u0026iacute;z MC. Social construction of the experience of living with chronic kidney disease. Revista latino-americana de enfermagem. 2018;26:e3028.\u003c/li\u003e\n\u003cli\u003ePage MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. bmj. 2021;372.\u003c/li\u003e\n\u003cli\u003eVassilev I, Rogers A, Kennedy A, Koetsenruijter J. The influence of social networks on self-management support: a metasynthesis. BMC public health. 2014;14:1-12.\u003c/li\u003e\n\u003cli\u003eVassilev I, Rogers A, Sanders C, Kennedy A, Blickem C, Protheroe J, et al. Social networks, social capital and chronic illness self-management: a realist review. Chronic illness. 2011;7(1):60-86.\u003c/li\u003e\n\u003cli\u003eRogers A, Vassilev I, Sanders C, Kirk S, Chew-Graham C, Kennedy A, et al. Social networks, work and network-based resources for the management of long-term conditions: a framework and study protocol for developing self-care support. Implementation science. 2011;6:1-7.\u003c/li\u003e\n\u003cli\u003eReeves D, Blickem C, Vassilev I, Brooks H, Kennedy A, Richardson G, Rogers A. The contribution of social networks to the health and self-management of patients with long-term conditions: a longitudinal study. PloS one. 2014;9(6):e98340.\u003c/li\u003e\n\u003cli\u003eMasic I, Sivic S, Toromanovic S, Borojevic T, Pandza H. Social networks in improvement of health care. Materia socio-medica. 2012;24(1):48.\u003c/li\u003e\n\u003cli\u003eProgramme CAS. CASP checklist: CASP qualitative studies checklist 2017 [\u003c/li\u003e\n\u003cli\u003ePopay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, et al. Guidance on the conduct of narrative synthesis in systematic reviews. A product from the ESRC methods programme Version. 2006;1(1):b92.\u003c/li\u003e\n\u003cli\u003eBeanlands H, McCay E, Pahati S, Hladunewich MA. Through the Lens of Chronic Kidney Disease: A Qualitative Study of the Experiences of Young Women Living With CKD. Canadian journal of kidney health and disease. 2020;7:2054358120945475.\u003c/li\u003e\n\u003cli\u003ePham TV, Beasley CM, Gagliardi JP, Koenig HG, Stanifer JW. Spirituality, Coping, and Resilience Among Rural Residents Living with Chronic Kidney Disease. Journal of religion and health. 2020;59(6):2951-68.\u003c/li\u003e\n\u003cli\u003eElliott MJ, Love S, Fox DE, Verdin N, Donald M, Manns K, et al. \u0026apos;It\u0026apos;s the empathy\u0026apos;-defining a role for peer support among people living with chronic kidney disease: a qualitative study. BMJ open. 2022;12(5):e057518.\u003c/li\u003e\n\u003cli\u003eCoumoundouros C, Farrand P, Sanderman R, von Essen L, Woodford J. \u0026quot;Systems seem to get in the way\u0026quot;: a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease. BMC nephrology. 2024;25(1):7.\u003c/li\u003e\n\u003cli\u003eHounkpatin HO, Leydon GM, Veighey K, Armstrong K, Santer M, Taal MW, et al. Patients\u0026apos; and kidney care team\u0026apos;s perspectives of treatment burden and capacity in older people with chronic kidney disease: a qualitative study. BMJ open. 2020;10(12):e042548.\u003c/li\u003e\n\u003cli\u003eMilders J, Ramspek CL, Meuleman Y, Bos WJW, Michels WM, Konijn WS, et al. Dealing with an uncertain future: a survey study on what patients with chronic kidney disease actually want to know. Clinical Kidney Journal. 2024;17(8):sfae225.\u003c/li\u003e\n\u003cli\u003eLo C, Ilic D, Teede H, Cass A, Fulcher G, Gallagher M, et al. The Perspectives of Patients on Health-Care for Co-Morbid Diabetes and Chronic Kidney Disease: A Qualitative Study. PloS one. 2016;11(1):e0146615.\u003c/li\u003e\n\u003cli\u003ePorteny T, Gonzales KM, Aufort KE, Levine S, Wong JB, Isakova T, et al. Treatment Decision Making for Older Kidney Patients during COVID-19. Clinical journal of the American Society of Nephrology : CJASN. 2022;17(7):957-65.\u003c/li\u003e\n\u003cli\u003eTuckey N, Duncanson E, Chur-Hansen A, Jesudason S. Using an international online forum to explore perspectives of caregivers of patients with chronic kidney disease. Journal of nephrology. 2022;35(1):267-77.\u003c/li\u003e\n\u003cli\u003eSchjerlund M, Agnholt H, Gregersen LR, Heilesen T, Pedersen MK. Cognitive impairment in patients with chronic kidney disease-Next of kin\u0026apos;s experiences. Journal of renal care. 2021;47(2):87-95.\u003c/li\u003e\n\u003cli\u003eLightfoot CJ, Wilkinson TJ, Graham-Brown MP, Smith AC. Supporting people with chronic kidney disease to self-manage their condition: understanding the lived experiences, needs and requirements, and barriers and facilitators. Journal of Nephrology. 2025:1-16.\u003c/li\u003e\n\u003cli\u003eCoyne E, Langham H, Tomlin M, Hope W, Johnson C, Byrne C, et al. Young adults with chronic kidney disease: An exploration of their relationships and support networks. Journal of renal care. 2019;45(1):20-8.\u003c/li\u003e\n\u003cli\u003eTaylor F, Gutteridge R, Willis C. Peer support for CKD patients and carers: Overcoming barriers and facilitating access. Health Expectations: An International Journal of Public Participation in Health Care \u0026amp; Health Policy. 2016;19(3):617-30.\u003c/li\u003e\n\u003cli\u003eO\u0026apos;Hare AM, Szarka J, McFarland LV, Vig EK, Sudore RL, Crowley S, et al. \u0026quot;Maybe They Don\u0026apos;t Even Know That I Exist\u0026quot;: Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease. Clinical journal of the American Society of Nephrology : CJASN. 2017;12(6):930-8.\u003c/li\u003e\n\u003cli\u003eUdlis KA. Self‐management in chronic illness: concept and dimensional analysis. Journal of Nursing and Healthcare of Chronic illness. 2011;3(2):130-9.\u003c/li\u003e\n\u003cli\u003eMiller TA, DiMatteo MR. Importance of family/social support and impact on adherence to diabetic therapy. Diabetes, metabolic syndrome and obesity: targets and therapy. 2013:421-6.\u003c/li\u003e\n\u003cli\u003eIrani E, Moore SE, Hickman RL, Dolansky MA, Josephson RA, Hughes JW. The contribution of living arrangements, social support, and self-efficacy to self-management behaviors among individuals with heart failure: a path analysis. Journal of Cardiovascular Nursing. 2019;34(4):319-26.\u003c/li\u003e\n\u003cli\u003eDineen-Griffin S, Garcia-Cardenas V, Williams K, Benrimoj SI. Helping patients help themselves: a systematic review of self-management support strategies in primary health care practice. PloS one. 2019;14(8):e0220116.\u003c/li\u003e\n\u003cli\u003eFurler J, Walker C, Blackberry I, Dunning T, Sulaiman N, Dunbar J, et al. The emotional context of self-management in chronic illness: A qualitative study of the role of health professional support in the self-management of type 2 diabetes. BMC Health Services Research. 2008;8:1-9.\u003c/li\u003e\n\u003cli\u003eSchell JO, O\u0026rsquo;Hare AM. Illness trajectories and their relevance to the care of adults with kidney disease. Current Opinion in Nephrology and Hypertension. 2013;22(3):316-24.\u003c/li\u003e\n\u003cli\u003eAnderson RM. Patient empowerment and the traditional medical model: a case of irreconcilable differences? Diabetes care. 1995;18(3):412-5.\u003c/li\u003e\n\u003cli\u003eFranklin M, Lewis S, Willis K, Bourke-Taylor H, Smith L. Patients\u0026rsquo; and healthcare professionals\u0026rsquo; perceptions of self-management support interactions: systematic review and qualitative synthesis. Chronic illness. 2018;14(2):79-103.\u003c/li\u003e\n\u003cli\u003eSouza J, Magro M. Supported self-management as a tool to combat chronic conditions in Brazilian primary health care context. Nurse Care Open Access J. 2017;4(1):00100.\u003c/li\u003e\n\u003cli\u003eBrashers DE, Goldsmith DJ, Hsieh E. Information seeking and avoiding in health contexts. Human communication research. 2002;28(2):258-71.\u003c/li\u003e\n\u003cli\u003eBlakeman T, Blickem C, Kennedy A, Reeves D, Bower P, Gaffney H, et al. Effect of information and telephone-guided access to community support for people with chronic kidney disease: randomised controlled trial. PloS one. 2014;9(10):e109135.\u003c/li\u003e\n\u003cli\u003eBlickem C, Blakeman T, Kennedy A, Bower P, Reeves D, Gardner C, et al. The clinical and cost-effectiveness of the BRinging Information and Guided Help Together (BRIGHT) intervention for the self-management support of people with stage 3 chronic kidney disease in primary care: study protocol for a randomized controlled trial. Trials. 2013;14:1-11.\u003c/li\u003e\n\u003cli\u003eChamplin S, Mackert M, Glowacki EM, Donovan EE. Toward a better understanding of patient health literacy: A focus on the skills patients need to find health information. Qualitative Health Research. 2017;27(8):1160-76.\u003c/li\u003e\n\u003cli\u003eBristowe K, Selman L, Higginson IJ, Murtagh F. Invisible and intangible illness: a qualitative interview study of patients\u0026rsquo; experiences and understandings of conservatively managed end-stage kidney disease. Annals of Palliative Medicine. 2019;8(2):121-9.\u003c/li\u003e\n\u003cli\u003eWilkinson AM, Lynn J. Caregiving for advanced chronic illness patients. Techniques in Regional Anesthesia and Pain Management. 2005;9(3):122-32.\u003c/li\u003e\n\u003cli\u003eDuggleby W, Williams A, Ghosh S, Moquin H, Ploeg J, Markle-Reid M, Peacock S. Factors influencing changes in health related quality of life of caregivers of persons with multiple chronic conditions. Health and quality of Life Outcomes. 2016;14:1-9.\u003c/li\u003e\n\u003cli\u003eTong A, Sainsbury P, Chadban S, Walker RG, Harris DC, Carter SM, et al. Patients\u0026apos; experiences and perspectives of living with CKD. American Journal of Kidney Diseases. 2009;53(4):689-700.\u003c/li\u003e\n\u003cli\u003eCare NAoP. [Available from: https://napc.co.uk/chww/.\u003c/li\u003e\n\u003cli\u003eFisher EB, Boothroyd RI, Coufal MM, Baumann LC, Mbanya JC, Rotheram-Borus MJ, et al. Peer support for self-management of diabetes improved outcomes in international settings. Health affairs. 2012;31(1):130-9.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-nephrology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bnep","sideBox":"Learn more about [BMC Nephrology](http://bmcnephrol.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bnep/default.aspx","title":"BMC Nephrology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Chronic Kidney Disease, Social networks, Self-management, Peer support","lastPublishedDoi":"10.21203/rs.3.rs-7866009/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7866009/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cb\u003eBackground\u003c/b\u003e\u003c/p\u003e\u003cp\u003eChronic kidney disease (CKD) is a growing global health concern requiring effective self-management to mitigate progression and improve quality of life. While self-management is increasingly recognised as a socially embedded practice, the specific contributions of social network members to this process in CKD are not well understood.\u003c/p\u003e\u003cp\u003e\u003cb\u003eObjective\u003c/b\u003e\u003c/p\u003e\u003cp\u003eTo synthesise and interpret existing literature on how social networks support individuals living with early-stage CKD and identify gaps in understanding.\u003c/p\u003e\u003cp\u003e\u003cb\u003eMethods\u003c/b\u003e\u003c/p\u003e\u003cp\u003e We conducted a narrative review. Fourteen studies involving 560 participants\u0026mdash;including individuals living with CKD, their social network members, healthcare professionals, peer mentors, and religious leaders\u0026mdash;were analysed to explore the role of social networks in CKD self-management.\u003c/p\u003e\u003cp\u003e\u003cb\u003eResults\u003c/b\u003e\u003c/p\u003e\u003cp\u003eFour key themes emerged: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) \u003cem\u003eThe burden of kidney disease uncertainty\u003c/em\u003e, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) \u003cem\u003eEveryday challenges of managing CKD\u003c/em\u003e, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) \u003cem\u003eThe loneliest disease\u003c/em\u003e, and (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) \u003cem\u003eThe role of peer support\u003c/em\u003e. Participants frequently reported emotional distress linked to diagnostic uncertainty and inconsistent information, especially from non-specialist providers. CKD management posed significant practical and psychological burdens, particularly for caregivers, who often felt unsupported and invisible within healthcare systems. Peer support\u0026mdash;both informal and formal\u0026mdash;played a crucial role in reducing isolation and providing context-specific guidance, especially when tailored to individual preferences and illness trajectories.\u003c/p\u003e\u003cp\u003e\u003cb\u003eConclusions\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis is the first review to explore the role of social networks in supporting the self-management of people living with CKD. The studies highlighted that early-stage CKD is shaped by diagnostic uncertainty, limited formal support, and social invisibility. People with CKD rely on diverse social networks for self-management, yet unclear care pathways and inconsistent communication hinder this support. Integrated models that combine early specialist input, peer support, and trained generalists are needed. Recognising and supporting these networks is essential to reduce isolation, improve understanding, and enable meaningful engagement with self-management across the CKD trajectory.\u003c/p\u003e","manuscriptTitle":"Understanding the role of social networks in supporting people living with chronic kidney disease. A narrative synthesis","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-16 07:22:51","doi":"10.21203/rs.3.rs-7866009/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-11-12T21:07:50+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-11-12T14:30:22+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-11-10T21:00:28+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"286103632703883875411837513154720145797","date":"2025-11-10T17:22:40+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"107873691471582513151363011799571226024","date":"2025-11-10T10:26:20+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"140488495425041471968403884182020727829","date":"2025-11-09T06:05:19+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"83362545242130879342526376485289279984","date":"2025-11-09T04:07:22+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"77338900202877529538502341937971055818","date":"2025-11-09T00:19:02+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"303410882615326647594606751229913600682","date":"2025-11-08T23:38:43+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"160826511822427902043091542606555741359","date":"2025-11-08T13:35:57+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-19T15:23:48+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"206318788329313440249164931035887850976","date":"2025-10-16T20:21:16+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-10-16T19:59:52+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-10-16T10:19:48+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-10-16T10:18:11+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Nephrology","date":"2025-10-15T08:45:31+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-nephrology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bnep","sideBox":"Learn more about [BMC Nephrology](http://bmcnephrol.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bnep/default.aspx","title":"BMC Nephrology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"4d015e84-0432-4140-baa4-98b4bfdc0e2f","owner":[],"postedDate":"October 16th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-12-15T16:06:34+00:00","versionOfRecord":{"articleIdentity":"rs-7866009","link":"https://doi.org/10.1186/s12882-025-04658-3","journal":{"identity":"bmc-nephrology","isVorOnly":false,"title":"BMC Nephrology"},"publishedOn":"2025-12-09 15:57:49","publishedOnDateReadable":"December 9th, 2025"},"versionCreatedAt":"2025-10-16 07:22:51","video":"","vorDoi":"10.1186/s12882-025-04658-3","vorDoiUrl":"https://doi.org/10.1186/s12882-025-04658-3","workflowStages":[]},"version":"v1","identity":"rs-7866009","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7866009","identity":"rs-7866009","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}