The taxonomy of human goals in technology development: supporting needs of long-term care recipients and their caregivers in finding and accessing appropriate care

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Digital health innovations increase the options to enhance care practices, such as providing support in the complex task of organizing timely and appropriate care for long-term care recipients. Aiming to provide directions for technology development, this study investigated the needs of care recipients, specifically those facing cognitive challenges. We used a taxonomy of human goals to identify what long-term care recipients and caregivers value regarding care and support. Method. Ten focus groups with 36 participants (23 care recipients and 13 caregivers) were conducted. Data were analyzed through a hybrid approach to thematic content analysis. The taxonomy of human goals served as a deductive framework, whereas inductive coding was applied to derive main themes and subthemes, elucidating the needs underlying the identified human goals. Results. Three overarching human goals emerged from the analysis: 1) Tranquility, 2) Self-determination, and 3) Social responsibility, with 18 human goals clustered under the overarching goals. Five main themes underlying the overarching goals provided a comprehensive understanding of the needs and desired outcomes for technology use. Additionally, two new human goals were identified: 4) Connectedness and 5) Being understood. Discussion. The existing taxonomy should be expanded with the newly identified human goals to enhance the representation of more vulnerable populations such as long-term care recipients. Moreover, various directions for technology are discussed, including the potential of a virtual assistant (i.e., conversational agent) sensitive to the different needs of long-term care recipients and caregivers. Technical Communication long-term care recipients technology development digital health innovation taxonomy of human goals virtual assistant focus groups Introduction Digital health innovations increase the array of options available to support care practices through the use of e-health, m-health, or (social) (chat) robots (Hamblin, 2022). Developments in data analytics and artificial intelligence (AI) have led to a myriad of enhanced technological applications in care practices such as screening in medical contexts, in-home reminders for medicine intake, the organization of formal and informal care through mobile applications, or information provision about care and health through the use of conversational user interface applications such as chatbots or virtual assistants (Følstad et al., 2021; Wright, 2020). Another, less explored application of care-related technology is the provision of relevant and comprehensible information about care to care recipients and their caregivers, thereby improving access to suitable care. Access to comprehensible information and suitable care is especially relevant for long-term care recipients such as people with intellectual disabilities or neurological or mental disorders who often need a combination of medical, psychological, and social care on a daily basis. The complexity of both the healthcare and benefits systems (Ramsey et al., 2022) complicates access to the various types of care that long-term care recipients need. For example, care recipients and (informal) caregivers often encounter challenges such as ambiguity regarding the entitlement to certain benefits, complex application procedures, and insufficiently clear and comprehensible communication (Tuzgöl-Broekhoven et al., 2018; O’Hara, 2020; Ramsey et al., 2022). This study examined the needs of long-term care recipients – specifically those facing cognitive challenges – and of (informal) caregivers regarding access to and organizing appropriate care. These insights are useful for the development of technology with the aim of improving access to care for long-term care recipients. Technological solutions for people with an intellectual disability or neurological (developmental) disorders require advanced accessibility features matching their unique needs and interests, as they often have low digital and/or (health) literacy skills (Nguyen and Gilbert, 2019; Watfern et al., 2019). In the design literature, empathizing with users’ problems, experiences, and needs is largely acknowledged as a first step toward technology development (Micheli et al., 2018; Van Gemert-Pijnen, 2018). Human-centered and value-sensitive design approaches that centralize users’ needs and interests are commonly applied (Davis and Nathan, 2015; Rose, 2016). More specifically, however, for technology development for long-term care recipients, Greenhalgh et al. (2015, p.12) characterized ‘the understanding of what matters to a patient or client’ and ‘co-creation with users and carers, using practical reasoning and common sense’ as quality principles that should guide the designing of telehealth and telecare products and services for long-term care recipients. A potentially suitable method to gain in-depth understanding of long-term care recipients’ and caregivers’ practical experiences and values is to use Ford and Nichols’ (2019) taxonomy of human goals as an interpretative framework. The taxonomy consists of a list of 24 human goals, i.e., desired outcomes that people can have for themselves and their environment. Examples of human goals include Belonging, Self-determination, and Equity. The taxonomy is based on psychological and motivational literature that focuses on understanding what guides people’s behavior (Ford and Nichols, 2019). Although some taxonomies of human goals are context specific (e.g., school, family, work) (Boekaerts, 2006; Ford and Nichols, 2019), Ford and Nichols’ taxonomy is appropriate for use in every context (Talevich et al., 2017). This allows the taxonomy to be applied in a – to the best of our knowledge – novel context, namely, that of care and support for long-term care recipients and caregivers. In addition to studying the human goals of long-term care recipients and caregivers, an inclusive research approach is applied in this study. This means that long-term care recipients are involved as co-researchers, with the aim of improving the study’s practical relevance and quality. This study aims to answer the following research questions: What human goals play a role for long-term care recipients and their caregivers in the context of organizing appropriate care and support? What underlying needs are reflected in the identified human goals in the context of organizing appropriate care and support? Methods Study design This study adopted a qualitative design with focus group (FG) discussions held between September 2022 and February 2023. The FGs enabled participants to share experiences and perspectives that contributed to insights about care recipients’ and caregivers’ needs and interests regarding care and support. This was especially relevant given this study’s diverse target groups, namely, long-term care recipients with physical or intellectual disabilities or neurological or mental disorders, professional caregivers, and informal caregivers. The FGs were conducted with homogeneous groups of either care recipients or caregivers. An inclusive research approach was applied, meaning that long-term care recipients were given a role as co-researchers, to ensure a better fit in terms of methods and a more accurate interpretation of results. The co-researchers fulfilled an active role in the preparation, execution, and initial analysis of the FGs. They consisted of one person with an intellectual disability and two with autism spectrum disorder. This study was submitted to the Ethical Review Board of [name university] (Registration number 2022-15745), which waived the need for a full review according to the Dutch Medical Research with Human Subjects Law (Wet Medisch-wetenschappelijk Onderzoek met mensen (WMO)). We followed the ethical principles of the Declaration of Helsinki and GPDR regulations. Study setting This study was part of a research project aiming to develop a sensitive virtual assistant to assist long-term care recipients in issues related to care and support. The team consisted of interdisciplinary partners including two knowledge institutes, among which one university department with expertise in technology and chatbots in care settings, one academic collaborative center conducting research with and about people with intellectual disability, a designer agency, a foundation for social care support, and a technology developer. Recruitment and participants A purposive sampling strategy was used to recruit a variety of care recipients and caregivers. The objective was to perform approximately ten FGs, depending on when saturation was reached. Participants were recruited mostly through the network of the partners in the overall research project, including the academic collaborative and the foundation for social care support. A few participants were recruited through a community center that provided support to people with various cultural backgrounds. When potential participants showed interest, they received an information letter and the informed consent form about the FGs and the study. For care recipients, the information letter was provided at the threshold language level (B1 literacy level in the Netherlands) and was co-created with two co-researchers (…,…) to ensure accessibility and comprehensibility. Six of the ten FGs were held with long-term care recipients, three with professional caregivers, and one with informal caregivers. One individual interview was held with a professional caregiver who at the last minute could not participate in the planned FG, but who was willing to share her perspectives at another time. In total, 23 care recipients and 13 caregivers participated. The division between female and male participants was almost 50-50. Ages ranged from 23 to 83, and the majority of participants had a Dutch cultural background (92%). An overview of the details of the FG participants is shown in Table 1. Table 1. Overview of participants in the focus groups Focus group Participant group N =36 Sex F/M Age (range) Location FG 1 (pilot) Care recipients (n=6) 1/5 28–51 Face-to-face 2 Care recipients (n=4) 2/2 54–63 Face-to-face 3 Care recipients (n=2) 0/2 23–43 Face-to-face 4 Care recipients (n=4) 3/1 26–63 Face-to-face 5 Care recipients (n=4) 2/2 33–53 Face-to-face 6 Care recipients (n=3) 3/0 40–65 Face-to-face 7 Caregivers (professional) (n=4) 3/1 33–53 Face-to-face 8 Caregivers (professional) (n=4) 4/0 37–53 Online 9 (individual interview) Caregivers (professional) (n=1) 1/0 58 Online 10 Caregivers (informal) (n=4) 2/2 59–83 Face-to-face Study procedure The objective of the FGs was to understand long-term care recipients’ and caregivers’ needs and interests regarding care and support. Semi-structured protocols were used for these FGs. Two co-researchers (…,…) provided feedback on the content and comprehensibility of all questions on the protocol for care recipients. There were three overall topics in both protocols: 1) the type of care and the role of various caregivers, 2) evaluations of the way in which care is currently organized, from the perspective of both care recipients and (informal) caregivers, and 3) expectations and/or worries regarding the future of care. In the FGs with care recipients, visual aids consisting of printed characters were used to enhance comprehensibility and interactivity (see Appendix 1). A pilot FG interview (n=6) was performed with care recipients, after which minor adaptations were made in the formulation of some questions. Also, the maximum number of participants was reduced from eight to five based on the pilot, because, with eight participants, time pressure impeded the possibility of allowing all participants to voice their views at their own pace. As the adjustments to our protocol were minor, we included the pilot FG in our data. Participants were asked to give written informed consent. If a participant had difficulty reading, the informed consent form was read out loud by the researcher. The FGs were moderated by two or three researchers, of whom one was always an academic researcher and one a co-researcher. The academic researchers (…,…) led the FGs and were responsible for following the FG protocol and involving all participants. The role of the second moderator, performed by a co-researcher (…,…), was to ask follow-up questions and to clarify questions if needed. FGs with care recipients and caregivers took, respectively, 120 minutes and 90 minutes. Data analysis The FGs were video- and audio-recorded and transcribed verbatim. The data were analyzed using a hybrid approach to thematic content analysis as described by Fereday and Muir-Cochrane (2006). This means that a deductive a priori list of codes was combined with inductive codes. The deductive list of codes was based on the taxonomy of human universal goals (Ford and Nichols, 2019). Our objective was to collect experiences from the perspectives of care recipients and caregivers, rather than compare data between the participant groups. Therefore, we coded all data as a unified dataset. The data were analyzed using ATLAS.ti 9.1.6 software. To answer the first research question, relevant human goals from Ford and Nichols’ (2019) taxonomy, consisting of 24 goals, were identified. For this, the first author and two co-researchers identified salient topics in the data. For each topic, a discussion about the human goals that matched and could represent the salient topics took place over three sessions with several authors (…, …, …, …,…,…,). This resulted in an initial coding list of 17 human goals, including Mastery, Equity, Understanding, and Unity. Subsequently, all transcripts were coded by the first two authors (…,…) in terms of the 17 human goals. After a close reading of the transcripts, five additional human goals were added (Entertainment, Physical sensations, Happiness, Being understood, and Connectedness) and one was removed (Intellectual creativity). Three human goals were identified as overarching human goals, as they were perceived to be achievable by the combination of the goals clustered under the overarching goals. For instance, Individuality and Equity were clustered under the overarching human goal, Self-determination (see Table 2, columns 1 and 2). To answer the second research question, data were coded inductively, as this provided relevant contextual information about the existing and potentially new human goals, as well as factors in the current situation facilitating or impeding the achievement of the identified relevant human goals. The clusters of human goals and the inductive codes were used to formulate five main themes and corresponding subthemes. Theme 5 was a smaller theme without subthemes. The themes elucidate the meaning of the identified human goals for care recipients and caregivers (see Table 2, columns 3 and 4). The initial coding scheme was devised by the first two authors (…,…) and discussed with the co-researchers. Once some of the data were coded, discussions were held between the first two authors, after which the coding list was elaborated. When all the data were coded, discussions took place again, leading to the final coding scheme. Results Twenty-one goals were identified as relevant for long-term care recipients and their caregivers in the context of organizing care and support. Nineteen of these 21 goals were included in Ford and Nichols’ (2019) taxonomy. Two new goals were identified, namely, Being understood and Connectedness. The first expresses the desire to be taken seriously by caregivers and to be listened to. The latter comprises connection with a caregiver and knowing that there is someone who will help when needed. Appendix 2 provides an overview of all identified goals and a description according to the taxonomy, as well as of the way in which they were interpreted in the context of this study. Three human goals were categorized as overarching human goals, namely, Tranquility, Self-determination, and Social responsibility, as they were perceived to be achievable by the combination of goals clustered under the overarching goals (Table 2, columns 1 and 2). The overarching goal, Tranquility, can be interpreted in two ways: 1) as related to a relaxed state of mind because of appropriate organization of care and support and 2) as a mental state of rest because of engaging in activities that enhance physical and mental wellbeing. The underlying meanings of the clusters of human goals were described by five main themes and corresponding subthemes (Table 2, columns 3 and 4), which are explained in the text below. Table 2. Identified clusters of human goals and their meaning for care recipients and caregivers explained in main themes and subthemes Overarching universal goals Related universal goals Main theme Subthemes Tranquility Resource acquisition Connectedness Being understood Safety Understanding Management Security and stability in care and support Network of caregivers Predictability of care Complex care system Transcendence Physiological wellbeing Bodily sensations Happiness Entertainment Belongingness Mental and physical relaxation Self-determination Understanding Management Exploration Equity Individuality Influence on (care) decisions Evaluation of care options Unique care needs Equal care relations Social Responsibility Resource provision Positive self-evaluation Understanding Management Being understood Care and support for others Guidance for caregivers Clarity of care requests Mastery Meaningful participation in society Security and stability in care and support It is crucial that care recipients receive the necessary care and support, preferably consistent over a long period of time. An absence of the necessary care or insecurity about its future create stress for both care recipients and caregivers. The subthemes – network of caregivers, predictability of care, and complex care system – play a role in relation to security and stability in care and support. Network of caregivers Care recipients highlighted the importance of their network of informal and professional caregivers who help them to organize care and who offer (emotional) support. They required care in various life domains, such as mental and physical health, finances, and work. Receiving care in these domains is essential for their functioning and well-being. Care recipients had one or several key persons in their network that played a central role in their care in providing direct support to the care recipient, such as with organization and structure in daily life or by providing emotional support. Other key persons were mentioned as being a crucial link to different types of care, such as medical or psychological care. Key persons include both professional caregivers, such as a general practitioner (GP), therapist, or support worker, and informal caregivers, such as a family member or a friend. The following two quotes provide examples of key persons for care recipients: My support worker helps me with my money, making appointments with the doctor and in the hospital, everything that I find difficult myself. – Care recipient, FG 5 …my uncle came and said…I am going to help you…He made sure that I was well supervised in the [mental] hospital…whereas the hospital said: you are better now, so you no longer need care. But I did not know where to go or what to do. – Care recipient, FG 3 Predictability of care Care recipients stressed the importance of receiving the same care and support over a long period of time. Participants expressed worries about waiting lists and personnel shortages or changes, as these reduced the predictability and continuity of care. Furthermore, personnel changes required the participants to tell their story over and over again and to re-create knowledge from scratch. Informal caregivers said that they noticed that professional caregivers have little time and capacity to provide care. Professional caregivers in turn expressed their frustration about waiting lists stopping them from delivering timely care. They [care institutions] say that they do not have capacity, everything is full, everything is difficult. They ask if I cannot do it myself for the coming months, but if that was the case I would not be asking for help. – Informal caregiver, FG 10 …the request for care is clear but we are now faced with a waiting-list problem that we simply cannot solve. – Professional caregiver, FG 7 Additionally, care recipients felt that they continuously had to ‘prove’ to the benefits system that they needed care, because in the Dutch system there is a yearly requirement to evaluate the necessity of care. This also caused stress, as illustrated by the following quote: …it is very stressful…to request a new indication every year and then just hoping that the person in front of you helps you, understands it, because they [care indications] are the building blocks of my life and then you will once again go through uncertainty for a few months. That just takes a lot of energy. – Care recipient, FG 4 Complex care system Organizing care and support by finding the right care providers and the necessary allowances that provide financial compensation for care was regarded as a complex task. Participants experienced a lack of overview of types of care, care providers, and allowances. Additionally, there is little support for care recipients and informal caregivers finding their way through the system. Informal caregivers used the metaphor of a puzzle that needs to be solved. The complexity and lack of support in navigating the care system was explained as follows: You feel more like a manager than something else. It is a bit like when you start working: you get an assignment and you just have to figure out how to do things and what the rules are. – Informal caregiver, FG 10 Communication with potential care providers was another issue of concern, as it is not adapted to care recipients’ needs. Conversations or forms about, for instance, care allowances were experienced as too difficult for care recipients to understand. They voiced the need for comprehensible communication about care and support as follows: In one year, I have had ten support workers come and go through the door. They try to convey things to you mainly cognitively…you do not understand at all how it works. But if you [support worker] are going to read a book to me, that will not work. – Care recipient, FG 2 It is difficult for me too. To figure out what is being asked. It is assumed that people [care recipients] have all these competencies, and sometimes you cannot see from the outside that you are dealing with a person with mild intellectual disability. Or they [care recipients] say yes to everything. They think: then I will just be done with it. And then no further questions are asked. – Professional caregiver, FG 7 Mental and physical relaxation Mental and physical relaxation were important for care recipients' overall well-being. Care recipients indicated that physical and interactive activities, such as sports, dancing, and other leisure activities, helped them to experience mental and physical relaxation in their daily lives. Moreover, the feeling of being part of a group made them less anxious: When I sit at home, I am completely stressed out. And when I can explain about my problem [to others], what happened, I get more calm. If I discuss this with friends, having a good time, drink some tea. That is really important. – Care recipient, FG 6 Yet, sport and leisure activities are not always accessible for care recipients – for instance, because they are not adapted for people with certain disabilities: I called three fitness clubs, who politely told me, madam, do not do it. Because you will pay a membership, and you may be able to use only three things [fitness equipment]. Well, that is a shame. – Care recipient, FG 2 Participants also indicated that they found it important to live with a positive mindset. Some achieved this through engaging in religion, others were interested in self-development (e.g., mindfulness). Influence on care decisions Having influence on care decisions was important to care recipients. The subthemes – evaluation of care options, unique care needs, and equal care relations – were mentioned by the participants. Evaluation of care options Care recipients emphasized the need for a caregiver (informal or professional) to function as a sounding board for them, to help them navigate the care and support system, and to make decisions about their care and support, as expressed in the following quote: My support worker is the one who has been able to direct me and help me with organizing [care-related] things with the municipality, like [asking for me] what about this, where can we find that? – Care recipient, FG 4 Despite the difficulties faced by participants in searching for care options, they also indicated that there were situations in which their care request is not complex, for example when they have a clear idea of what they need help with and what they want, or when the care recipients have the competences to search and comprehend information independently: If you have a clear request for help yourself, and you search on the basis of that request, you will find something that matches it. Then you can still look at the quality, but, if it is suitable, you will get good help. – Care recipient, FG 2 Unique care needs The way in which care is currently organized results in an excessive focus on diagnoses, leading care recipients to perceive themselves as confined within predefined categories or boxes. According to the participants, too little attention is paid to care recipients’ unique and complex needs, and this can result in suboptimal care. Care recipients explained that, although certain treatments of care approaches may be suitable for someone with the same diagnosis, it may not be the best for them. A care recipient expressed this by sharing his experience about a medical doctor: Because those doctors all tell you things in a way that you think yes, you tell me things ‘about me’, but that is not me. It does not feel that way. – Care recipient, FG 2 Professional caregivers acknowledged that tailored care can be difficult. In the case of complex care recipients, the current benefits system does not support complex problems well. Consequently, care providers for specific diagnoses may not have the expertise to deal with care recipients with several diagnoses – for example, when care recipients are dealing with addiction and also have an intellectual disability, or care recipients have mental health problems and an intellectual disability: It is not without reason that mental health care institutions keep their doors closed and say: we do not deal with intellectual disabilities. Yes, formally they should, but [they do not] because they find it too difficult, complex, and complicated, because they have to draw up all kinds of adapted treatment protocols. – Professional caregiver, FG 8 Equal care relations Professional caregivers mentioned that they approached care recipients as equally as possible and tried to allow them to make autonomous decisions. By listening without judgment and by asking questions, professional caregivers help care recipients to figure out what their care request is and possible solutions. A professional caregiver described this process as follows: Without judgment, standing next to them. That is what I mean by ‘level with them’. So, you sit down and ask: what would you like? Not you have to, but what would you like? – Professional caregiver, FG 7 Care recipients also stated that they value caregivers empowering them to do things by themselves: I have to try to solve as much as possible myself. They do help, but like yesterday when I had to call the physiotherapist. I find it difficult, and my support worker was next to me, but I did it myself. – Care recipient, FG 5 Care and support to others Informal and professional caregivers expressed the importance of providing appropriate care to care recipients. In this light, guidance for informal caregivers and clarity of care requests were discussed. Guidance for informal caregivers Informal caregivers indicated that they would like to have better guidance in organizing care and support for care recipients, such as better information provision by the GP or social care providers: The GP says: try this and then try that, and go and talk there, and visit there. Go to the municipality. But then you ask, can you make it more concrete? [GP:] No, you have to figure that out yourself, that is not part of our care. – Informal caregiver, FG 10 Clarity of care requests Although helping care recipients as well as possible is professional caregivers’ primary goal, they face challenges in understanding care recipients’ needs. When a care recipient asks for help, it takes some time before a professional caregiver understands what exactly the care recipient needs help with. Professional caregivers indicated that they had to ask open questions and find a personal connection. They emphasized the importance of patience, as the first topic that care recipients introduce to the caregivers might not be the real question: They come with one thing, but, if you just keep asking questions, you find out that the initial question is actually a completely different one. But by asking questions you discover together what the actual problem is. – Professional caregiver, FG 7 Care recipients themselves also value caring for others. They are, for instance, informal caregivers of a parent or a partner. Another way to care for others is by weighing up whom to ask for help in specific situations, as expressed by a care recipient: I prefer not to burden mom with those things, so to speak. I find that more difficult, because it makes her worry about me, but that is not really necessary. – Care recipient, FG 4 Meaningful participation in society Care recipients expressed the need to contribute to society by participating in labor or voluntary work. By doing so, they felt that they had meaning in their lives and society. They wanted to do paid or voluntary work in which to use their experiences to help others. However, they felt that they were held back because they did not receive the support for it, or were not allowed by the benefits system to perform any kind of work, or received too little attention for their talents and wishes. Two care recipients expressed this as follows: I was a midwife in my country, and I have a lot of experience. I have a diploma, and I went to university for four years. I have lots of experience with hospitals, outpatient clinics, people, but here [in the Netherlands] it is not allowed, you have to spend seven years to gain [refugee] status. – Care recipient, FG 8 I am currently searching for a job. But they do not have anything in my field, although they say it is suitable for anyone that looks for a job. But I am searching for a job in a specific field that has meaning for me, but that does not matter to them. – Care recipient, FG 2 Discussion Our study aimed to gain insight into long-term care recipients’ and caregivers’ human goals and their needs regarding finding and accessing suitable care and support. The first research question aimed to identify the relevant human goals by using a hybrid approach based on the taxonomy of universal human goals (Ford and Nichols, 2019). Our findings revealed the 19 human goals included in Ford and Nichol’s taxonomy and two new goals, Being understood and Connectedness. Of all the identified human goals, three overarched the other 18, resulting in three clusters of human goals. These clusters consisted of the human goals Tranquility, Self-determination, and Social responsibility. For the second research question on the underlying needs reflected in the identified human goals, the three clusters of human goals were specified in five main themes. The cluster belonging to Tranquility represented long-term care recipients’ need for 1) stability and security in care and support and 2) mental and physical relaxation. Self-determination signified 3) care recipients’ need to have an influence on care decisions. Social responsibility represented 4) caregivers’ need to be supported in providing care to others and 5) long-term care recipients’ need to make a contribution to society. The following section elaborates on the directions for technology development that can be deduced from the identified human goals and needs. Subsequently, theoretical and practical implications as well as some limitations of this study are discussed. Directions for technology development Overall, and related to each of the three overarching human goals, our study showed that technology providing accessible and tailored information to care recipients and informal caregivers is essential for organizing the care and support that long-term care recipients need, those with cognitive challenges in particular. Providing accessible and tailored information can empower them by enhancing their sense of control over their own care process, thereby contributing to stability and security in care and support (Tranquility). Care recipients may have more influence on care decisions when technology helps them to have a clear understanding of the available choices (Self-determination). Regarding Social responsibility, technology presenting accessible and tailored information can support informal caregivers to find the suitable care for their relatives, thereby contributing to their desire to provide good care to their relatives. Previous studies have also shown the importance of accessible information for the inclusion of people with a disability in their own healthcare, as well as control over their own care process (Doherty et al., 2020; Terras et al., 2021). Thus, supportive e/m-health technology for long-term care recipients and their caregivers should be designed with the aim of creating an overview of various types of information about care and support. Suitable technology in this regard includes, for instance, conversational agent technology or a virtual assistant, as it allows care recipients’ and caregivers’ various questions to be answered (Følstad et al., 2021). The increasingly sophisticated Large Language Models also enhance the possibilities of an empathic conversational partner as well as of providing tailored information (Andrew, 2024). Furthermore, our findings underlying the human goal, Tranquility, showed that the involvement of the care recipients’ care network is essential for finding information about, and accessing, care and support. Acknowledging this implies that technological applications should encourage care recipients to engage with their care network. For instance, a virtual assistant could encourage long-term care recipients to engage with their network about care and support as well, or, conversely, if an informal caregiver is in charge of finding suitable care. Regarding Self-determination and the need to have an influence on care decisions, care recipients require support in evaluating the (dis)advantages of diverse ways of organizing care – for instance, by serving as a sounding board by applying motivational interviewing techniques in which reflexive listening can help users to explore their own thoughts (Schouten et al., 2022). In addition, our findings underlying Social responsibility indicated that technology should accommodate care recipients’ need to deploy their own talents and skills. This could be covered with a virtual assistant that has a broad vision on care and wellbeing, paying attention to determinants such as participation in society. In other words, it should be sensitive to its users’ various needs. Theoretical and methodological implications Two new human goals were identified for addition to Ford and Nichols’ taxonomy in the context of long-term care: Being understood and Connectedness. Being understood involves care recipients’ and informal caregivers’ desired state of being listened to and time being taken as crucial elements for organizing appropriate care. This was also found in previous studies on key factors contributing to the provision of high-quality care (Attree, 2001; Moudatsou, 2020). Connectedness comprises the desired state of establishing a personal connection between care recipients and multiple caregivers to ensure appropriate organization of care. The importance of fostering strong connections between care recipients and (informal) caregivers for good care has been well acknowledged (Attree, 2001; Ferraris et al., 2022), as well as care networks’ crucial role in providing and organizing care and support (Ho et al., 2023). Although Ford and Nichols’ (2019) taxonomy was based on an extensive review of the literature (i.e., on achievement motivation, personality, and social motivation) and presented as being applicable in any context (Boekaerts, 2006), the particular target groups (i.e., long-term care recipients and caregivers) in our study revealed additional human goals. Most likely, the studies in the literature include mostly people from the general population, rather than more vulnerable groups such as long-term care recipients. Consideration should be given to adding the new human goals identified in this study to the taxonomy to advance its representation of more vulnerable groups in society, or at least be considered when needs and desired outcomes are being investigated in a care context. This study showed the usefulness of an inclusive research approach (i.e., citizen science approach) in studying needs for technology development for long-term care recipients. Three care recipients were involved throughout the entire study in the role of co-researchers. Conducting the study together with the co-researchers provided immediate feedback in each phase of the research. For example, the co-researchers were involved in preparation, recruitment, and execution of FGs and the first round of data analysis. They advised the academic researchers on how to ask questions in a way that was comprehensible to participants, and, during the FGs, they clarified language and asked follow-up questions from their own experience. This resulted in FGs that were comfortable for participants and enhanced the credibility of the data. Limitations and future research Despite the potential added value of technology for long-term care recipients, it should be noted that not all human goals can be achieved through technology. Technology’s capacity to contribute to the organization of suitable care and support is restricted by the constraints of the existing care and support system. For instance, the human goal, Tranquility, reflects participants’ desire for predictable and consistent care. However, factors such as shortages in care personnel pose challenges to fulfilling this goal. Additionally, although technology such as a virtual assistant may provide emotional support in times of insecurity and anxiety (Firth et al., 2017), it cannot eliminate the root cause of the concerns (i.e., insecurity created by how the (health) care system is organized). Thus, besides exploring how technology can be used to improve care and support for long-term care recipients, future research should pay attention should to how to mitigate the underlying causes of insecurity. Although our study sample was diverse in terms of reasons for being a long-term care recipient (e.g., having different types of disabilities), sex, and age, future research should include more participants with a non-Dutch cultural or a migration background. Despite efforts to include them, participants in this study had mostly a Dutch cultural background. The inclusion of people with various cultural backgrounds may have resulted in other or nuanced findings, because people with a migration background can have different views on people with a disability and their need for care and support (Dijkstra and Rommes, 2022). A potentially different finding might arise in relation to the human goal, Self-determination, as people with a migration background often assume hierarchical roles in healthcare settings, in which the ‘expert’ makes the decisions (Lindsay et al., 2014). Future research could explore whether a more diverse sample in terms of, for instance, cultural background results in an emphasis on different human goals and different implications for technology development. Conclusion This study aimed to identify the human goals and underlying needs in the context of finding and accessing appropriate care and support for long-term care recipients. We showed that, for long-term care recipients and their caregivers, it is important that technology contributes to Tranquility, meaning stability and security in care; Self-determination, meaning having influence on care decisions; and Social responsibility, meaning supporting caregivers to provide care to relatives and to encourage long-term care recipients’ societal participation. The human goals pointed to directions for technology, more specifically to a virtual assistant, that provides comprehensible and suitable information and is sensitive to the different needs of long-term care recipients and their caregivers. The application of a taxonomy of human goals in a novel context – that of care and support – showed the relevance of two additional human goals, Being understood and Connectedness. 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Nguyen J and Gilbert L (2019) Health Literacy among Individuals with disabilities: a Health Information National Trends Survey Analysis. The Permanente Journal. Epub 25 October 2019. DOI: 10.7812/TPP/19.034. O’Hara J (2020) Themed review better health and care for all. Report, National Institute for Health Research (NIHR), UK, February. Ramsey L., Albutt A, Perfetto K, Quinton N, Baker J, Louch G and O’hara J (2022) Systemic safety inequities for people with learning disabilities: a qualitative integrative analysis of the experiences of English health and social care for people with learning disabilities, their families and carers. International Journal for Equity in Health 21(13). Rose EJ (2016) Design as advocacy: using a human-centered approach to investigate the needs of vulnerable populations. Journal of Technical Writing and Communication 46(4), 427-445. Schouten DGM, Deneka AA, Theune M et al. (2022). An embodied conversational agent coach to support societal participation learning by low-literate users. Universal Access in the Information Society 22, 1215-1241. https://doi.org/10.1007/s10209-021-00865-5 Talevich JR, Read, SJ, Walsh DA, Iyer R, Chopra G (2017) Toward a comprehensive taxonomy of human motives. PLoS One 12(2): e0172279. DOI: 10.1371/journal.pone.0172279 Terras MM, Jarret D, McGregor SA (2021) The importance of accessible information in promoting the inclusion of people with an intellectual disability. Disabilities 1(3), 132-150. https://doi.org/10.3390/disabilities1030011 Tuzgöl-Broekhoven A, Stam J, Atalikyayi R (2018). Zorgen voor burgers. Onderzoek naar de knelpunten die zorgvragers ervaren bij de toegang tot zorg. Report, Nationale Ombudsman, The Netherlands, May. Van Gemert-Pijnen L, Kelders SM, Kip HC, and Sanderman R (2018) . eHealth research, theory and development: A Multi-Disciplinary Approach. Abingdon: Routledge. Watfern C, Heck C, Rule C, Baldwin P, Boydell KM (2019) Feasibility and acceptability of a mental health website for adults with an intellectual disability: qualitative evaluation. JMIR Mental Health 6(3):e12958. DOI: 10.2196/12958. Wright J (2020) Technology in social care: review of the UK policy landscape. Sustainable Care Paper 2, Report, University of Sheffield, UK, October. Additional Declarations The authors declare no competing interests. Supplementary Files Supplementaryfile1.docx Supplementaryfile2.docx Cite Share Download PDF Status: Posted Version 1 posted 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. 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Developments in data analytics and artificial intelligence (AI) have led to a myriad of enhanced technological applications in care practices such as screening in medical contexts, in-home reminders for medicine intake, the organization of formal and informal care through mobile applications, or information provision about care and health through the use of conversational user interface applications such as chatbots or virtual assistants (Følstad et al., 2021; Wright, 2020). Another, less explored application of care-related technology is the provision of relevant and comprehensible information about care to care recipients and their caregivers, thereby improving access to suitable care. Access to comprehensible information and suitable care is especially relevant for long-term care recipients such as people with intellectual disabilities or neurological or mental disorders who often need a combination of medical, psychological, and social care on a daily basis. The complexity of both the healthcare and benefits systems (Ramsey et al., 2022) complicates access to the various types of care that long-term care recipients need. For example, care recipients and (informal) caregivers often encounter challenges such as ambiguity regarding the entitlement to certain benefits, complex application procedures, and insufficiently clear and comprehensible communication (Tuzgöl-Broekhoven et al., 2018; O’Hara, 2020; Ramsey et al., 2022). This study examined the needs of long-term care recipients – specifically those facing cognitive challenges – and of (informal) caregivers regarding access to and organizing appropriate care. These insights are useful for the development of \u0026nbsp;technology with the aim of improving access to care for long-term care recipients.\u003c/p\u003e\n\u003cp\u003eTechnological solutions for people with an intellectual disability or neurological (developmental) disorders require advanced accessibility features matching their unique needs and interests, as they often have low digital and/or (health) literacy skills (Nguyen and Gilbert, 2019; Watfern et al., 2019). In the design literature, empathizing with users’ problems, experiences, and needs is largely acknowledged as a first step toward technology development (Micheli et al., 2018; Van Gemert-Pijnen, 2018). Human-centered and value-sensitive design approaches that centralize users’ needs and interests are commonly applied (Davis and Nathan, 2015; Rose, 2016). More specifically, however, for technology development for long-term care recipients, Greenhalgh et al. (2015, p.12) characterized ‘the understanding of what matters to a patient or client’ and ‘co-creation with users and carers, using practical reasoning and common sense’ as quality principles that should guide the designing of telehealth and telecare products and services for long-term care recipients.\u003c/p\u003e\n\u003cp\u003eA potentially suitable method to gain in-depth understanding of long-term care recipients’ and caregivers’ practical experiences and values is to use Ford and Nichols’ (2019) taxonomy of human goals as an interpretative framework. The taxonomy consists of a list of 24 human goals, i.e., desired outcomes that people can have for themselves and their environment. Examples of human goals include Belonging, Self-determination, and Equity. The taxonomy is based on psychological and motivational literature that focuses on understanding what guides people’s behavior (Ford and Nichols, 2019). Although some taxonomies of human goals are context specific (e.g., school, family, work) (Boekaerts, 2006; Ford and Nichols, 2019), Ford and Nichols’ taxonomy is appropriate for use in every context (Talevich et al., 2017). This allows the taxonomy to be applied in a – to the best of our knowledge – novel context, namely, that of care and support for long-term care recipients and caregivers. In addition to studying the human goals of long-term care recipients and caregivers, an inclusive research approach is applied in this study. This means that long-term care recipients are involved as co-researchers, with the aim of improving the study’s practical relevance and quality.\u003c/p\u003e\n\u003cp\u003eThis study aims to answer the following research questions:\u003c/p\u003e\n\u003col\u003e\n \u003cli\u003eWhat human goals play a role for long-term care recipients and their caregivers in the context of organizing appropriate care and support?\u003c/li\u003e\n \u003cli\u003eWhat underlying needs are reflected in the identified human goals in the context of organizing appropriate care and support?\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003eStudy design\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study adopted a qualitative design with focus group (FG) discussions held between September 2022 and February 2023. The FGs enabled participants to share experiences and perspectives that contributed to insights about care recipients\u0026rsquo; and caregivers\u0026rsquo; needs and interests regarding care and support. This was especially relevant given this study\u0026rsquo;s diverse target groups, namely, long-term care recipients with physical or intellectual disabilities or neurological or mental disorders, professional caregivers, and informal caregivers. The FGs were conducted with homogeneous groups of either care recipients or caregivers. An inclusive research approach was applied, meaning that long-term care recipients were given a role as co-researchers, to ensure a better fit in terms of methods and a more accurate interpretation of results. The co-researchers fulfilled an active role in the preparation, execution, and initial analysis of the FGs. They consisted of one person with an intellectual disability and two with autism spectrum disorder. This study was submitted to the Ethical Review Board of [name university] (Registration number 2022-15745), which waived the need for a full review according to the Dutch Medical Research with Human Subjects Law (Wet Medisch-wetenschappelijk Onderzoek met mensen (WMO)). We followed the ethical principles of the Declaration of Helsinki and GPDR regulations.\u003c/p\u003e\n\u003ch2\u003e\u003cstrong\u003eStudy setting\u0026nbsp;\u003c/strong\u003e\u003c/h2\u003e\n\u003cp\u003eThis study was part of a research project aiming to develop a sensitive virtual assistant to assist long-term care recipients in issues related to care and support. The team consisted of interdisciplinary partners including two knowledge institutes, among which one university department with expertise in technology and chatbots in care settings, one academic collaborative center conducting research with and about people with intellectual disability, a designer agency, a foundation for social care support, and a technology developer.\u003c/p\u003e\n\u003ch2\u003e\u003cstrong\u003eRecruitment and participants\u0026nbsp;\u003c/strong\u003e\u003c/h2\u003e\n\u003cp\u003eA purposive sampling strategy was used to recruit a variety of care recipients and caregivers. The objective was to perform approximately ten FGs, depending on when saturation was reached. Participants were recruited mostly through the network of the partners in the overall research project, including the academic collaborative and the foundation for social care support. A few participants were recruited through a community center that provided support to people with various cultural backgrounds. When potential participants showed interest, they received an information letter and the informed consent form about the FGs and the study. For care recipients, the information letter was provided at the threshold language level (B1 literacy level in the Netherlands) and was co-created with two co-researchers (\u0026hellip;,\u0026hellip;) to ensure accessibility and comprehensibility.\u003c/p\u003e\n\u003cp\u003eSix of the ten FGs were held with long-term care recipients, three with professional caregivers, and one with informal caregivers. One individual interview was held with a professional caregiver who at the last minute could not participate in the planned FG, but who was willing to share her perspectives at another time. In total, 23 care recipients and 13 caregivers participated. The division between female and male participants was almost 50-50. Ages ranged from 23 to 83, and the majority of participants had a Dutch cultural background (92%). An overview of the details of the FG participants is shown in Table 1.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1. Overview of participants in the focus groups\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"595\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003eFocus group\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eParticipant group \u003cem\u003eN\u003c/em\u003e=36\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003eSex\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eF/M\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eAge\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e(range)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eLocation FG\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003e1 (pilot)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eCare recipients (n=6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003e1/5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003e28\u0026ndash;51\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eCare recipients (n=4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003e2/2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003e54\u0026ndash;63\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eCare recipients (n=2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003e0/2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003e23\u0026ndash;43\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eCare recipients (n=4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003e3/1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003e26\u0026ndash;63\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eCare recipients (n=4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003e2/2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003e33\u0026ndash;53\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eCare recipients (n=3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003e3/0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003e40\u0026ndash;65\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eCaregivers (professional) (n=4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003e3/1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003e33\u0026ndash;53\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eCaregivers (professional) (n=4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003e4/0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003e37\u0026ndash;53\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eOnline\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003e9 (individual interview)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eCaregivers (professional) (n=1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003e1/0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003e58\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eOnline\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"20.875420875420875%\" valign=\"top\"\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.737373737373737%\" valign=\"top\"\u003e\n \u003cp\u003eCaregivers (informal)\u003cbr\u003e\u0026nbsp; (n=4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.34006734006734%\" valign=\"top\"\u003e\n \u003cp\u003e2/2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003e59\u0026ndash;83\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.023569023569024%\" valign=\"top\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003ch2\u003e\u003cstrong\u003e\u003cbr\u003e\u0026nbsp;Study procedure\u0026nbsp;\u003c/strong\u003e\u003c/h2\u003e\n\u003cp\u003eThe objective of the FGs was to understand long-term care recipients\u0026rsquo; and caregivers\u0026rsquo; needs and interests regarding care and support. Semi-structured protocols were used for these FGs. Two co-researchers (\u0026hellip;,\u0026hellip;) provided feedback on the content and comprehensibility of all questions on the protocol for care recipients. There were three overall topics in both protocols: 1) the type of care and the role of various caregivers, 2) evaluations of the way in which care is currently organized, from the perspective of both care recipients and (informal) caregivers, and 3) expectations and/or worries regarding the future of care. In the FGs with care recipients, visual aids consisting of printed characters were used to enhance comprehensibility and interactivity (see Appendix 1). A pilot FG interview (n=6) was performed with care recipients, after which minor adaptations were made in the formulation of some questions. Also, the maximum number of participants was reduced from eight to five based on the pilot, because, with eight participants, time pressure impeded the possibility of allowing all participants to voice their views at their own pace. As the adjustments to our protocol were minor, we included the pilot FG in our data.\u003c/p\u003e\n\u003cp\u003eParticipants were asked to give written informed consent. If a participant had difficulty reading, the informed consent form was read out loud by the researcher. The FGs were moderated by two or three researchers, of whom one was always an academic researcher and one a co-researcher. The academic researchers (\u0026hellip;,\u0026hellip;) led the FGs and were responsible for following the FG protocol and involving all participants. The role of the second moderator, performed by a co-researcher (\u0026hellip;,\u0026hellip;), was to ask follow-up questions and to clarify questions if needed. FGs with care recipients and caregivers took, respectively, 120 minutes and 90 minutes.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData analysis \u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe FGs were video- and audio-recorded and transcribed verbatim. The data were analyzed using a hybrid approach to thematic content analysis as described by Fereday and Muir-Cochrane (2006). This means that a deductive a priori list of codes was combined with inductive codes. The deductive list of codes was based on the taxonomy of human universal goals (Ford and Nichols, 2019). Our objective was to collect experiences from the perspectives of care recipients and caregivers, rather than compare data between the participant groups. Therefore, we coded all data as a unified dataset. The data were analyzed using ATLAS.ti 9.1.6 software. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTo answer the first research question, relevant human goals from Ford and Nichols\u0026rsquo; (2019) taxonomy, consisting of 24 goals, were identified. For this, the first author and two co-researchers identified salient topics in the data.\u0026nbsp;For each topic, a discussion about the human goals that matched and could represent the salient topics took place over three sessions with several authors (\u0026hellip;, \u0026hellip;, \u0026hellip;, \u0026hellip;,\u0026hellip;,\u0026hellip;,). This resulted in an initial coding list of 17 human goals, including Mastery, Equity, Understanding, and Unity. Subsequently, all transcripts were coded by the first two authors (\u0026hellip;,\u0026hellip;) in terms of the 17 human goals. After a close reading of the transcripts, five additional human goals were added (Entertainment, Physical sensations, Happiness, Being understood, and Connectedness) and one was removed (Intellectual creativity). Three human goals were identified as overarching human goals, as they were perceived to be achievable by the combination of the goals clustered under the overarching goals. For instance, Individuality and Equity were clustered under the overarching human goal, Self-determination (see Table 2, columns 1 and 2).\u003c/p\u003e\n\u003cp\u003eTo answer the second research question, data were coded inductively, as this provided relevant contextual information about the existing and potentially new human goals, as well as factors in the current situation facilitating or impeding the achievement of the identified relevant human goals. The clusters of human goals and the inductive codes were used to formulate five main themes and corresponding subthemes. Theme 5 was a smaller theme without subthemes. The themes elucidate the meaning of the identified human goals for care recipients and caregivers (see Table 2, columns 3 and 4). The initial coding scheme was devised by the first two authors (\u0026hellip;,\u0026hellip;) and discussed with the co-researchers. Once some of the data were coded, discussions were held between the first two authors, after which the coding list was elaborated. When all the data were coded, discussions took place again, leading to the final coding scheme.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eTwenty-one goals were identified as relevant for long-term care recipients and their caregivers in the context of organizing care and support. Nineteen of these 21 goals were included in Ford and Nichols\u0026rsquo; (2019) taxonomy. Two new goals were identified, namely, Being understood and Connectedness. The first expresses the desire to be taken seriously by caregivers and to be listened to. The latter comprises connection with a caregiver and knowing that there is someone who will help when needed. Appendix 2 provides an overview of all identified goals and a description according to the taxonomy, as well as of the way in which they were interpreted in the context of this study.\u003c/p\u003e\n\u003cp\u003eThree human goals were categorized as overarching human goals, namely, Tranquility, Self-determination, and Social responsibility, as they were perceived to be achievable by the combination of goals clustered under the overarching goals (Table 2, columns 1 and 2). The overarching goal, Tranquility, can be interpreted in two ways: \u0026nbsp;1) as related to a relaxed state of mind because of appropriate organization of care and support and 2) as a mental state of rest because of engaging in activities that enhance physical and mental wellbeing. The underlying meanings of the clusters of human goals were described by five main themes and corresponding subthemes (Table 2, columns 3 and 4), which are explained in the text below.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2. Identified clusters of human goals and their meaning for care recipients and caregivers explained in main themes and subthemes\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"595\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"23.361344537815125%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eOverarching universal goals\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.88235294117647%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eRelated universal goals\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.3781512605042%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eMain theme\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.3781512605042%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eSubthemes\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"0%\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"23.361344537815125%\" rowspan=\"3\" valign=\"top\"\u003e\n \u003cp\u003e\u003cbr\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eTranquility\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.88235294117647%\" rowspan=\"2\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eResource acquisition\u003c/li\u003e\n \u003cli\u003eConnectedness\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eBeing understood\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eSafety\u003c/li\u003e\n \u003cli\u003eUnderstanding\u003c/li\u003e\n \u003cli\u003eManagement\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.3781512605042%\" rowspan=\"2\" valign=\"top\"\u003e\n \u003col\u003e\n \u003cli\u003e\u003cem\u003eSecurity and stability in care and support\u003c/em\u003e\u003c/li\u003e\n \u003c/ol\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.3781512605042%\" rowspan=\"2\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eNetwork of caregivers\u003c/li\u003e\n \u003cli\u003ePredictability of care\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eComplex care system \u0026nbsp;\u0026nbsp;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd width=\"0%\" height=\"52\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"NaN%\" height=\"36\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"33.771929824561404%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eTranscendence\u003c/li\u003e\n \u003cli\u003ePhysiological wellbeing\u003c/li\u003e\n \u003cli\u003eBodily sensations\u003c/li\u003e\n \u003cli\u003eHappiness\u003c/li\u003e\n \u003cli\u003eEntertainment\u003c/li\u003e\n \u003cli\u003eBelongingness\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd width=\"33.1140350877193%\" valign=\"top\"\u003e\n \u003col\u003e\n \u003cli\u003e\u003cem\u003eMental and physical relaxation\u003c/em\u003e\u003c/li\u003e\n \u003c/ol\u003e\n \u003c/td\u003e\n \u003ctd width=\"33.1140350877193%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"0%\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"23.361344537815125%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cbr\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eSelf-determination\u003cbr\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.88235294117647%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eUnderstanding\u003c/li\u003e\n \u003cli\u003eManagement\u003c/li\u003e\n \u003cli\u003eExploration\u003c/li\u003e\n \u003cli\u003eEquity\u003c/li\u003e\n \u003cli\u003eIndividuality\u0026nbsp;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.3781512605042%\" valign=\"top\"\u003e\n \u003col\u003e\n \u003cli\u003e\u003cem\u003eInfluence on (care) decisions\u003c/em\u003e\u003c/li\u003e\n \u003c/ol\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.3781512605042%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eEvaluation of care options\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eUnique care needs\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eEqual care relations\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd width=\"0%\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"23.361344537815125%\" rowspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eSocial Responsibility\u0026nbsp;\u003cbr\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.88235294117647%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eResource provision\u003c/li\u003e\n \u003cli\u003ePositive self-evaluation\u003c/li\u003e\n \u003cli\u003eUnderstanding\u003c/li\u003e\n \u003cli\u003eManagement\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eBeing understood\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.3781512605042%\" valign=\"top\"\u003e\n \u003col\u003e\n \u003cli\u003e\u003cem\u003eCare and support for others\u003c/em\u003e\u003c/li\u003e\n \u003c/ol\u003e\n \u003c/td\u003e\n \u003ctd width=\"25.3781512605042%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eGuidance for caregivers\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eClarity of care requests\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd width=\"0%\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"33.771929824561404%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eMastery\u0026nbsp;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd width=\"33.1140350877193%\" valign=\"top\"\u003e\n \u003col\u003e\n \u003cli\u003e\u003cem\u003eMeaningful participation in society\u003c/em\u003e\u003c/li\u003e\n \u003c/ol\u003e\n \u003c/td\u003e\n \u003ctd width=\"33.1140350877193%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"0%\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eSecurity and stability in care and support \u003cu\u003e\u003cbr\u003e\u0026nbsp;\u003c/u\u003e\u003c/strong\u003eIt is crucial that care recipients receive the necessary care and support, preferably consistent over a long period of time. An absence of the necessary care or insecurity about its future create stress for both care recipients and caregivers. The subthemes \u0026ndash; network of caregivers, predictability of care, and complex care system \u0026ndash; play a role in relation to security and stability in care and support.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eNetwork of caregivers\u0026nbsp;\u003c/em\u003e\u003cstrong\u003e\u003cbr\u003e\u0026nbsp;\u003c/strong\u003eCare recipients highlighted the importance of their network of informal and professional caregivers who help them to organize care and who offer (emotional) support. They required care in various life domains, such as mental and physical health, finances, and work. Receiving care in these domains is essential for their functioning and well-being. Care recipients had one or several key persons in their network that played a central role in their care in providing direct support to the care recipient, such as with organization and structure in daily life or by providing emotional support. Other key persons were mentioned as being a crucial link to different types of care, such as medical or psychological care. Key persons include both professional caregivers, such as a general practitioner (GP), therapist, or support worker, and informal caregivers, such as a family member or a friend. The following two quotes provide examples of key persons for care recipients:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eMy support worker helps me with my money, making appointments with the doctor and in the hospital, everything that I find difficult myself.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 5\u003cbr\u003e\u0026nbsp;\u003cbr\u003e\u003cem\u003e\u0026hellip;my uncle came and said\u0026hellip;I am going to help you\u0026hellip;He made sure that I was well supervised in the [mental] hospital\u0026hellip;whereas the hospital said: you are better now, so you no longer need care. But I did not know where to go or what to do.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 3\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePredictability of care\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eCare recipients stressed the importance of receiving the same care and support over a long period of time. Participants expressed worries about waiting lists and personnel shortages or changes, as these reduced the predictability and continuity of care. Furthermore, personnel changes required the participants to tell their story over and over again and to re-create knowledge from scratch. \u0026nbsp;Informal caregivers said that they noticed that professional caregivers have little time and capacity to provide care. Professional caregivers in turn expressed their frustration about waiting lists stopping them from delivering timely care. \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThey [care institutions] say that they do not have capacity, everything is full, everything is difficult. They ask if I cannot do it myself for the coming months, but if that was the case I would not be asking for help.\u0026nbsp;\u003c/em\u003e\u0026ndash; Informal caregiver, FG 10\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026hellip;the request for care is clear but we are now faced with a waiting-list problem that we simply cannot solve.\u0026nbsp;\u003c/em\u003e\u0026ndash; Professional caregiver, FG 7\u003c/p\u003e\n\u003cp\u003eAdditionally, care recipients felt that they continuously had to \u0026lsquo;prove\u0026rsquo; to the benefits system that they needed care, because in the Dutch system there is a yearly requirement to evaluate the necessity of care. This also caused stress, as illustrated by the following quote:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026hellip;it is very stressful\u0026hellip;to request a new indication every year and then just hoping that the person in front of you helps you, understands it, because they [care indications] are the building blocks of my life and then you will once again go through uncertainty for a few months. That just takes a lot of energy.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 4\u003cbr\u003e\u003cem\u003e\u003cbr\u003e Complex care system \u003cstrong\u003e\u003cbr\u003e\u0026nbsp;\u003c/strong\u003e\u003c/em\u003eOrganizing care and support by finding the right care providers and the necessary allowances that provide financial compensation for care was regarded as a complex task. Participants experienced a lack of overview of types of care, care providers, and allowances. Additionally, there is little support for care recipients and informal caregivers finding their way through the system. Informal caregivers used the metaphor of a puzzle that needs to be solved. The complexity and lack of support in navigating the care system was explained as follows:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eYou feel more like a manager than something else. It is a bit like when you start working: you get an assignment and you just have to figure out how to do things and what the rules are.\u0026nbsp;\u003c/em\u003e\u0026ndash; Informal caregiver, FG 10\u003c/p\u003e\n\u003cp\u003eCommunication with potential care providers was another issue of concern, as it is not adapted to care recipients\u0026rsquo; needs. Conversations or forms about, for instance, care allowances were experienced as too difficult for care recipients to understand. They voiced the need for comprehensible communication about care and support as follows:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eIn one year, I have had ten support workers come and go through the door. They try to convey things to you mainly cognitively\u0026hellip;you do not understand at all how it works. But if you [support worker] are going to read a book to me, that will not work.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 2\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eIt is difficult for me too. To figure out what is being asked. It is assumed that people [care recipients] have all these competencies, and sometimes you cannot see from the outside that you are dealing with a person with mild intellectual disability. Or they [care recipients] say yes to everything. They think: then I will just be done with it. And then no further questions are asked.\u0026nbsp;\u003c/em\u003e\u0026ndash; Professional caregiver, FG 7\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMental and physical relaxation\u0026nbsp;\u003c/strong\u003e\u003cstrong\u003e\u003cbr\u003e\u0026nbsp;\u003c/strong\u003eMental and physical relaxation were important for care recipients\u0026apos; overall well-being. Care recipients indicated that physical and interactive activities, such as sports, dancing, and other leisure activities, helped them to experience mental and physical relaxation in their daily lives. Moreover, the feeling of being part of a group made them less anxious:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eWhen I sit at home, I am completely stressed out. And when I can explain about my problem [to others], what happened, I get more calm. If I discuss this with friends, having a good time, drink some tea. That is really important.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 6\u003c/p\u003e\n\u003cp\u003eYet, sport and leisure activities are not always accessible for care recipients \u0026ndash; for instance, because they are not adapted for people with certain disabilities: \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eI called three fitness clubs, who politely told me, madam, do not do it. Because you will pay a membership, and you may be able to use only three things [fitness equipment]. Well, that is a shame.\u003c/em\u003e \u0026ndash; Care recipient, FG 2\u003c/p\u003e\n\u003cp\u003eParticipants also indicated that they found it important to live with a positive mindset. Some achieved this through engaging in religion, others were interested in self-development (e.g., mindfulness).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eInfluence on care decisions\u0026nbsp;\u003c/strong\u003e\u003cem\u003e\u003cu\u003e\u003cbr\u003e\u0026nbsp;\u003c/u\u003e\u003c/em\u003eHaving influence on care decisions was important to care recipients. The subthemes \u0026ndash; evaluation of care options, unique care needs, and equal care relations \u0026ndash; were mentioned by the participants. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEvaluation of care options \u0026nbsp;\u003c/em\u003e\u003cstrong\u003e\u003cbr\u003e\u0026nbsp;\u003c/strong\u003eCare recipients emphasized the need for a caregiver (informal or professional) to function as a sounding board for them, to help them navigate the care and support system, and to make decisions about their care and support, as expressed in the following quote:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eMy support worker is the one who has been able to direct me and help me with organizing [care-related] things with the municipality, like [asking for me] what about this, where can we find that?\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 4\u003c/p\u003e\n\u003cp\u003eDespite the difficulties faced by participants in searching for care options, they also indicated that there were situations in which their care request is not complex, for example when they have a clear idea of what they need help with and what they want, or when the care recipients have the competences to search and comprehend information independently:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eIf you have a clear request for help yourself, and you search on the basis of that request, you will find something that matches it. Then you can still look at the quality, but, if it is suitable, you will get good help.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 2\u003cem\u003e\u003cbr\u003e\u0026nbsp;Unique care needs\u0026nbsp;\u003cbr\u003e\u0026nbsp;\u003c/em\u003eThe way in which care is currently organized results in an excessive focus on diagnoses, leading care recipients to perceive themselves as confined within predefined categories or boxes. According to the participants, too little attention is paid to care recipients\u0026rsquo; unique and complex needs, and this can result in suboptimal care. Care recipients explained that, although certain treatments of care approaches may be suitable for someone with the same diagnosis, it may not be the best for them. A care recipient expressed this by sharing his experience about a medical doctor:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eBecause those doctors all tell you things in a way that you think yes, you tell me things \u0026lsquo;about me\u0026rsquo;, but that is not me. It does not feel that way.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 2\u003c/p\u003e\n\u003cp\u003eProfessional caregivers acknowledged that tailored care can be difficult. In the case of complex care recipients, the current benefits system does not support complex problems well. Consequently, care providers for specific diagnoses may not have the expertise to deal with care recipients with several diagnoses \u0026ndash; for example, when care recipients are dealing with addiction and also have an intellectual disability, or care recipients have mental health problems and an intellectual disability:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eIt is not without reason that mental health care institutions keep their doors closed and say: we do not deal with intellectual disabilities. Yes, formally they should, but [they do not] because they find it too difficult, complex, and complicated, because they have to draw up all kinds of adapted treatment protocols.\u0026nbsp;\u003c/em\u003e\u0026ndash; Professional caregiver, FG 8\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEqual care relations \u0026nbsp;\u003c/em\u003e\u003cbr\u003e\u0026nbsp;Professional caregivers mentioned that they approached care recipients as equally as possible and tried to allow them to make autonomous decisions. By listening without judgment and by asking questions, professional caregivers help care recipients to figure out what their care request is and possible solutions. A professional caregiver described this process as follows:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eWithout judgment, standing next to them. That is what I mean by \u0026lsquo;level with them\u0026rsquo;. So, you sit down and ask: what would you like? Not you have to, but what would you like?\u0026nbsp;\u003c/em\u003e\u0026ndash; Professional caregiver, FG 7\u003c/p\u003e\n\u003cp\u003eCare recipients also stated that they value caregivers empowering them to do things by themselves:\u0026nbsp;\u003cbr\u003e\u003cem\u003eI have to try to solve as much as possible myself. They do help, but like yesterday when I had to call the physiotherapist. I find it difficult, and my support worker was next to me, but I did it myself.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 5\u003cbr\u003e\u0026nbsp;\u003cem\u003e\u003cbr\u003e\u0026nbsp;\u003c/em\u003e\u003cstrong\u003eCare and support to others\u0026nbsp;\u003cbr\u003e\u0026nbsp;\u003c/strong\u003eInformal and professional caregivers expressed the importance of providing appropriate care to care recipients. In this light, guidance for informal caregivers and clarity of care requests were discussed. \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eGuidance for informal caregivers\u0026nbsp;\u003c/em\u003e\u003cstrong\u003e\u0026nbsp; \u0026nbsp;\u003c/strong\u003e\u003cem\u003e\u003cbr\u003e\u0026nbsp;\u003c/em\u003eInformal caregivers indicated that they would like to have better guidance in organizing care and support for care recipients, such as better information provision by the GP or social care providers:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThe GP says: try this and then try that, and go and talk there, and visit there. Go to the municipality. But then you ask, can you make it more concrete? [GP:] No, you have to figure that out yourself, that is not part of our care.\u0026nbsp;\u003c/em\u003e\u0026ndash; Informal caregiver, FG 10\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eClarity of care requests \u0026nbsp;\u003cbr\u003e\u0026nbsp;\u003c/em\u003eAlthough helping care recipients as well as possible is professional caregivers\u0026rsquo; primary goal, they face challenges in understanding care recipients\u0026rsquo; needs. When a care recipient asks for help, it takes some time before a professional caregiver understands what exactly the care recipient needs help with. Professional caregivers indicated that they had to ask open questions and find a personal connection. They emphasized the importance of patience, as the first topic that care recipients introduce to the caregivers might not be the real question:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThey come with one thing, but, if you just keep asking questions, you find out that the initial question is actually a completely different one. But by asking questions you discover together what the actual problem is.\u0026nbsp;\u003c/em\u003e\u0026ndash; Professional caregiver, FG 7\u003c/p\u003e\n\u003cp\u003eCare recipients themselves also value caring for others. They are, for instance, informal caregivers of a parent or a partner. Another way to care for others is by weighing up whom to ask for help in specific situations, as expressed by a care recipient:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eI prefer not to burden mom with those things, so to speak. I find that more difficult, because it makes her worry about me, but that is not really necessary.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 4\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMeaningful participation in society \u0026nbsp;\u0026nbsp;\u003c/strong\u003e\u003cem\u003e\u003cbr\u003e\u0026nbsp;\u003c/em\u003eCare recipients expressed the need to contribute to society by participating in labor or voluntary work. By doing so, they felt that they had meaning in their lives and society. They wanted to do paid or voluntary work in which to use their experiences to help others. However, they felt that they were held back because they did not receive the support for it, or were not allowed by the benefits system to perform any kind of work, or received too little attention for their talents and wishes. Two care recipients expressed this as follows: \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eI was a midwife in my country, and I have a lot of experience. I have a diploma, and I went to university for four years. I have lots of experience with hospitals, outpatient clinics, people, but here [in the Netherlands] it is not allowed, you have to spend seven years to gain [refugee] status.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 8\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eI am currently searching for a job. But they do not have anything in my field, although they say it is suitable for anyone that looks for a job. But I am searching for a job in a specific field that has meaning for me, but that does not matter to them.\u0026nbsp;\u003c/em\u003e\u0026ndash; Care recipient, FG 2\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eOur study aimed to gain insight into long-term care recipients\u0026rsquo; and caregivers\u0026rsquo; human goals and their needs regarding finding and accessing suitable care and support. The first research question aimed to identify the relevant human goals by using a hybrid approach based on the taxonomy of universal human goals (Ford and Nichols, 2019). Our findings revealed the 19 human goals included in Ford and Nichol\u0026rsquo;s taxonomy and two new goals, Being understood and Connectedness. Of all the identified human goals, three overarched the other 18, resulting in three clusters of human goals. These clusters consisted of the human goals Tranquility, Self-determination, and Social responsibility. For the second research question on the underlying needs reflected in the identified human goals, the three clusters of human goals were specified in five main themes. The cluster belonging to Tranquility represented long-term care recipients\u0026rsquo; need for 1) stability and security in care and support and 2) mental and physical relaxation. Self-determination signified 3) care recipients\u0026rsquo; need to have an influence on care decisions. Social responsibility represented 4) caregivers\u0026rsquo; need to be supported in providing care to others and 5) long-term care recipients\u0026rsquo; need to make a contribution to society. The following section elaborates on the directions for technology development that can be deduced from the identified human goals and needs. Subsequently, theoretical and practical implications as well as some limitations of this study are discussed.\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section2\"\u003e \u003ch2\u003eDirections for technology development\u003c/h2\u003e \u003cp\u003eOverall, and related to each of the three overarching human goals, our study showed that technology providing accessible and tailored information to care recipients and informal caregivers is essential for organizing the care and support that long-term care recipients need, those with cognitive challenges in particular. Providing accessible and tailored information can empower them by enhancing their sense of control over their own care process, thereby contributing to stability and security in care and support (Tranquility). Care recipients may have more influence on care decisions when technology helps them to have a clear understanding of the available choices (Self-determination). Regarding Social responsibility, technology presenting accessible and tailored information can support informal caregivers to find the suitable care for their relatives, thereby contributing to their desire to provide good care to their relatives. Previous studies have also shown the importance of accessible information for the inclusion of people with a disability in their own healthcare, as well as control over their own care process (Doherty et al., 2020; Terras et al., 2021). Thus, supportive e/m-health technology for long-term care recipients and their caregivers should be designed with the aim of creating an overview of various types of information about care and support. Suitable technology in this regard includes, for instance, conversational agent technology or a virtual assistant, as it allows care recipients\u0026rsquo; and caregivers\u0026rsquo; various questions to be answered (F\u0026oslash;lstad et al., 2021). The increasingly sophisticated Large Language Models also enhance the possibilities of an empathic conversational partner as well as of providing tailored information (Andrew, 2024).\u003c/p\u003e \u003cp\u003eFurthermore, our findings underlying the human goal, Tranquility, showed that the involvement of the care recipients\u0026rsquo; care network is essential for finding information about, and accessing, care and support. Acknowledging this implies that technological applications should encourage care recipients to engage with their care network. For instance, a virtual assistant could encourage long-term care recipients to engage with their network about care and support as well, or, conversely, if an informal caregiver is in charge of finding suitable care. Regarding Self-determination and the need to have an influence on care decisions, care recipients require support in evaluating the (dis)advantages of diverse ways of organizing care \u0026ndash; for instance, by serving as a sounding board by applying motivational interviewing techniques in which reflexive listening can help users to explore their own thoughts (Schouten et al., 2022). In addition, our findings underlying Social responsibility indicated that technology should accommodate care recipients\u0026rsquo; need to deploy their own talents and skills. This could be covered with a virtual assistant that has a broad vision on care and wellbeing, paying attention to determinants such as participation in society. In other words, it should be sensitive to its users\u0026rsquo; various needs.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003eTheoretical and methodological implications\u003c/h2\u003e \u003cp\u003eTwo new human goals were identified for addition to Ford and Nichols\u0026rsquo; taxonomy in the context of long-term care: Being understood and Connectedness. Being understood involves care recipients\u0026rsquo; and informal caregivers\u0026rsquo; desired state of being listened to and time being taken as crucial elements for organizing appropriate care. This was also found in previous studies on key factors contributing to the provision of high-quality care (Attree, 2001; Moudatsou, 2020). Connectedness comprises the desired state of establishing a personal connection between care recipients and multiple caregivers to ensure appropriate organization of care. The importance of fostering strong connections between care recipients and (informal) caregivers for good care has been well acknowledged (Attree, 2001; Ferraris et al., 2022), as well as care networks\u0026rsquo; crucial role in providing and organizing care and support (Ho et al., 2023). Although Ford and Nichols\u0026rsquo; (2019) taxonomy was based on an extensive review of the literature (i.e., on achievement motivation, personality, and social motivation) and presented as being applicable in any context (Boekaerts, 2006), the particular target groups (i.e., long-term care recipients and caregivers) in our study revealed additional human goals. Most likely, the studies in the literature include mostly people from the general population, rather than more vulnerable groups such as long-term care recipients. Consideration should be given to adding the new human goals identified in this study to the taxonomy to advance its representation of more vulnerable groups in society, or at least be considered when needs and desired outcomes are being investigated in a care context.\u003c/p\u003e \u003cp\u003eThis study showed the usefulness of an inclusive research approach (i.e., citizen science approach) in studying needs for technology development for long-term care recipients. Three care recipients were involved throughout the entire study in the role of co-researchers. Conducting the study together with the co-researchers provided immediate feedback in each phase of the research. For example, the co-researchers were involved in preparation, recruitment, and execution of FGs and the first round of data analysis. They advised the academic researchers on how to ask questions in a way that was comprehensible to participants, and, during the FGs, they clarified language and asked follow-up questions from their own experience. This resulted in FGs that were comfortable for participants and enhanced the credibility of the data.\u003c/p\u003e \u003cdiv id=\"Sec25\" class=\"Section3\"\u003e \u003ch2\u003eLimitations and future research\u003c/h2\u003e \u003cp\u003eDespite the potential added value of technology for long-term care recipients, it should be noted that not all human goals can be achieved through technology. Technology\u0026rsquo;s capacity to contribute to the organization of suitable care and support is restricted by the constraints of the existing care and support system. For instance, the human goal, Tranquility, reflects participants\u0026rsquo; desire for predictable and consistent care. However, factors such as shortages in care personnel pose challenges to fulfilling this goal. Additionally, although technology such as a virtual assistant may provide emotional support in times of insecurity and anxiety (Firth et al., 2017), it cannot eliminate the root cause of the concerns (i.e., insecurity created by how the (health) care system is organized). Thus, besides exploring how technology can be used to improve care and support for long-term care recipients, future research should pay attention should to how to mitigate the underlying causes of insecurity.\u003c/p\u003e \u003cp\u003eAlthough our study sample was diverse in terms of reasons for being a long-term care recipient (e.g., having different types of disabilities), sex, and age, future research should include more participants with a non-Dutch cultural or a migration background. Despite efforts to include them, participants in this study had mostly a Dutch cultural background. The inclusion of people with various cultural backgrounds may have resulted in other or nuanced findings, because people with a migration background can have different views on people with a disability and their need for care and support (Dijkstra and Rommes, 2022). A potentially different finding might arise in relation to the human goal, Self-determination, as people with a migration background often assume hierarchical roles in healthcare settings, in which the \u0026lsquo;expert\u0026rsquo; makes the decisions (Lindsay et al., 2014). Future research could explore whether a more diverse sample in terms of, for instance, cultural background results in an emphasis on different human goals and different implications for technology development.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study aimed to identify the human goals and underlying needs in the context of finding and accessing appropriate care and support for long-term care recipients. We showed that, for long-term care recipients and their caregivers, it is important that technology contributes to Tranquility, meaning stability and security in care; Self-determination, meaning having influence on care decisions; and Social responsibility, meaning supporting caregivers to provide care to relatives and to encourage long-term care recipients\u0026rsquo; societal participation. The human goals pointed to directions for technology, more specifically to a virtual assistant, that provides comprehensible and suitable information and is sensitive to the different needs of long-term care recipients and their caregivers. The application of a taxonomy of human goals in a novel context \u0026ndash; that of care and support \u0026ndash; showed the relevance of two additional human goals, Being understood and Connectedness. These goals are currently not included in the taxonomy used in this study but should be considered for addition to enhance the representation of more vulnerable groups, such as long-term care recipients, in society.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eAndrew, A (2024) Potential applications and implications of large language models in primary care.\u0026nbsp;\u003cem\u003eFamily Medicine and Community Health\u0026nbsp;\u003c/em\u003e12(1), e002602. doi: 10.1136/fmch-2023-002602\u003c/li\u003e\n \u003cli\u003eAttree M (2001) Patients\u0026rsquo; and relatives experiences and perspectives of \u0026lsquo;Good\u0026rsquo; and \u0026lsquo;Not so Good\u0026rsquo; quality care. \u003cem\u003eJournal of Advanced Nursing\u0026nbsp;\u003c/em\u003e33, 456-466.\u003cbr\u003eBoekaerts M, de Koning E and Vedder P (2006) Goal-directed behavior and contextual factors in the classroom: an innovative approach to the study of multiple goals. \u003cem\u003eEducational Psychologist\u003c/em\u003e 41(1), 33-51. https://doi.org/10.1207/s15326985ep4101_5\u003c/li\u003e\n \u003cli\u003eDavis J and Nathan LP (2015) Value sensitive design: applications, adaptations, and critiques. 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Report, Nationale Ombudsman, The Netherlands, May.\u003cbr\u003eVan Gemert-Pijnen L, Kelders SM, Kip HC, and Sanderman R (2018)\u003cem\u003e. eHealth research, theory and development: A Multi-Disciplinary Approach.\u0026nbsp;\u003c/em\u003eAbingdon: Routledge.\u003c/li\u003e\n \u003cli\u003eWatfern C, Heck C, Rule C, Baldwin P, Boydell KM (2019) Feasibility and acceptability of a mental health website for adults with an intellectual disability: qualitative evaluation. \u003cem\u003eJMIR Mental Health\u0026nbsp;\u003c/em\u003e6(3):e12958. DOI: 10.2196/12958.\u003cbr\u003eWright J (2020) Technology in social care: review of the UK policy landscape. Sustainable Care Paper 2, Report, University of Sheffield, UK, October.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"Tilburg University","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"long-term care recipients, technology development, digital health innovation, taxonomy of human goals, virtual assistant, focus groups ","lastPublishedDoi":"10.21203/rs.3.rs-4755152/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4755152/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground. \u003c/strong\u003eDigital health innovations increase the options to enhance care practices, such as providing support in the complex task of organizing timely and appropriate care for long-term care recipients. Aiming to provide directions for technology development, this study investigated the needs of care recipients, specifically those facing cognitive challenges. We used a taxonomy of human goals to identify what long-term care recipients and caregivers value regarding care and support.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethod.\u003c/strong\u003e Ten focus groups with 36 participants (23 care recipients and 13 caregivers) were conducted. Data were analyzed through a hybrid approach to thematic content analysis. The taxonomy of human goals served as a deductive framework, whereas inductive coding was applied to derive main themes and subthemes, elucidating the needs underlying the identified human goals.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults.\u003c/strong\u003e Three overarching human goals emerged from the analysis: 1) Tranquility, 2) Self-determination, and 3) Social responsibility, with 18 human goals clustered under the overarching goals. Five main themes underlying the overarching goals provided a comprehensive understanding of the needs and desired outcomes for technology use. Additionally, two new human goals were identified: 4) Connectedness and 5) Being understood.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDiscussion. \u003c/strong\u003eThe existing taxonomy should be expanded with the newly identified human goals to enhance the representation of more vulnerable populations such as long-term care recipients. Moreover, various directions for technology are discussed, including the potential of a virtual assistant (i.e., conversational agent) sensitive to the different needs of long-term care recipients and caregivers.\u003c/p\u003e","manuscriptTitle":"The taxonomy of human goals in technology development: supporting needs of long-term care recipients and their caregivers in finding and accessing appropriate care","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-07-18 04:55:53","doi":"10.21203/rs.3.rs-4755152/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"912e2ecc-5bc7-4d36-a6e5-063d890af192","owner":[],"postedDate":"July 18th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":34736473,"name":"Technical Communication"}],"tags":[],"updatedAt":"2024-07-18T04:55:53+00:00","versionOfRecord":[],"versionCreatedAt":"2024-07-18 04:55:53","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4755152","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4755152","identity":"rs-4755152","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}