Parents of children with complex care needs as educational partners in higher education? An explorative participatory mixed-methods study.

Parents of children with complex care needs as educational partners in higher education? 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An explorative participatory mixed-methods study. Agnes M. Willemen, Friederike Ertmer, Melanie C. Verdam, Anne de la Croix This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4032553/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 7 You are reading this latest preprint version Abstract Background : Although collaboration between care professionals and parents of children with complex care needs is becoming increasingly important, little is known about how students can be prepared for collaboration with these parents within the academic curriculum. The current study examined participation of parents of children with complex care needs in the curriculum and focused on three questions: 1) How canthese parents be involved? 2) What(could) students learn from it? and 3) Whatimportant conditions are needed for sustainable participation? Method : An explorative mixed-methods study based on the principles of participatory action research was performed in the Bachelor Pedagogical Sciences. In total, 64 participants (parents, students, academic staff, professionals, and clients) were involved in a case study or interview study. Questionnaire and interview data were coded using the Towle taxonomy for patient involvement and the CanMEDS competency framework. Results : All stakeholders agreed that parents should and could be more involved in the education program. 1) Parents could have therole ofeducator at different levels. 2) By listening to parents’ authentic stories, students can develop greater motivation andcompetencies in the roles of professional, communicator, and clinical expert . 3) In additionto time and (financial) compensation, relevant conditions were flexibility, collaboration, and training for parents. Conclusions : Parents of children with complex care needs are willing to participate in higher education. Their role as educational partners can support the development of relevant competences. For long-term success of parent participation, conditions at both the organizational and practical level should be supported. patient participation parent involvement active learning health profession education complex care needs Figures Figure 1 Figure 2 Figure 3 Figure 4 1. Introduction Patient or service user participation in education is known for its benefits and has a long tradition [1-4]. It stimulates and enhances patient-centered care, improves students' social skills and relationships with patients, and provides insight into the real world of patients [5,6]. Patient participation in education, especially education in health care and social work, is widely seen as an important aspect of education [7]. However, when the client or patient is a child, there are logistical (Can children miss school to participate?), legal (Are children allowed to work?), practical (Can the child speak?) and ethical (Should we place children in front of groups to talk about personal issues?) problems with their participation in education. Looking beyond the child, however, opens up a new type of participation: that of parents. If a child is in need of care, therapy or treatment, interactions will inevitably occur with the caregiver present (in this piece, we use the term ‘parent’, but we recognize that caregivers can also be other than parents alone). Working with children means collaborating with parents, which places a professional in a 'triangle of care’ [8]. Parents can be seen as experts in the care and development of their child [9] and are relevant stakeholders for collaboration [10]. This is especially the case when children have complex or chronic mental, intellectual, or physical problems [11]. Therefore, collaboration with parents could be an important topic in higher education. The involvement of parents is a growing trend in research [12,13], but parent participation in education is relatively rare, and studies on this topic are scarce [14]. One of those rare studies on parent participation in higher education is ‘Operation Homefront’ [5]. Operation Homefront was a project in which third-year medical students visited families of children with special needs at their home twice. The study analyzed written reflections from students, who described their experiences. Operation Homefront increased knowledge and skills in various competence areas, of which the area most frequently mentioned was ‘demonstration of respect for the attitudes, behaviors, and lifestyles of the patient, parent, and family [5]. There are three reasons why we need to study the participation of parents in education further. First, parents of children with complex care needs typically have long-term collaborations with multiple care professionals from different fields of expertise. Therefore, they can share a variety of experiences with students. Although these experiences are interesting for future care professionals, it is still unclear how they add to the learning objectives of students. This is an especially relevant question for students in higher education due to the theoretical and scientific foundation of the curriculum [15]. Second, patient participation in education can take different forms, which have been charted in the Towle Taxonomy [16], which is a comprehensive model with six levels, described in Table 1. The levels increase with the degree of involvement in education. At level 1, the patient's story is used as a paper-based case, while at level 6, the patient participates in the development of the curriculum. Compared to patients, parents are limited in showing typical behaviors or symptoms (level 1), but parents can act as teachers or equal partners (levels 4 and 5). To the best of our knowledge, this model has not been applied to parent participation in education programs for care professionals. Therefore, this study focused on the question which different types of parent participation are possible in education. [Insert Table 1] Third, parents of children with complex care needs often already feel overwhelmed and exhausted, and they experience their role as parent caregivers as heavy and intensive [17,18]. This new role as a parent-teacher can make their duties even harder. However, it can also offer opportunities for parents to be willing to contribute to the quality of care of subsequent generations. Therefore, in this study, we explore the conditions that are relevant for parents to be involved in education. The current study focused on the central questions of whether and how parents of children with complex care needs can be involved in the academic curriculum and what students (could) learn from this. The following research questions were central to this project: RQ1. What do students learn from parent participation? What could they learn? RQ2. What do different stakeholders see as possible types of participation in education? RQ3. What are important conditions for parent participation? 2. Methods 2.1 Context of the study The aim of this project was to generate knowledge about participation of parents of children with complex care needs in higher education. A participatory action framework was adopted as a core of this study. This means that participation of all relevant stakeholders was stimulated in all phases of the study. Participatory action research is interpretive, with a focus on people’s interpretation of activities, and hermeneutic, as it looks at how people make meaning of their experiences [19]. Participatory action research can and has been used to improve standard practices in a variety of professional fields [19,20]. By action and reflection in collaboration with relevant stakeholders, participatory action research seeks to generate knowledge to improve educational practice in line with what is relevant to these stakeholders. This study is part of a larger project that was initiated by the mother of a child with complex care needs, who is also a researcher in medical education. In the context of this project, the current study was framed as a first step to find out what parent participation can add to the curriculum. This study consisted of two parts: 1) a case study in which parent participation was piloted in a module with over 100 students and evaluated with a survey with open and closed questions, and 2) an interview study to delve deeper into the perspectives of all relevant stakeholders, also the ones who did not participate in the case study. The voices of many stakeholders were heard, in this case: parents, students, teachers, clients, professionals, and educational staff. A mixed methods design was chosen to collect quantitative and qualitative data in a convergent parallel design. The case study was evaluated with an online survey with open and closed questions resulting in quantitative (frequencies of answer options) and qualitative data (citations). The interview study resulted in qualitative data (e.g., themes and citations). Data collection for both studies occurred in parallel. Then, data were analyzed simultaneously and independently after completing data collection. Finally, results from both studies were integrated to look for convergence, divergence, and expansion [28]. The current study was conducted in the bachelor program of Pedagogical Sciences [Name of university – blinded for review]. This bachelor program is embedded in the department of [blinded for review]. In [name country – blinded for review], pedagogy is a profession in itself. Pedagogues work not only in research and policy functions but also as care professionals in clinical settings. A pedagogue is educated to understand and promote child development from a contextual perspective characterized by collaboration between formal and informal caregivers, such as teachers, caregivers, parents, siblings, family members, and volunteers. 2.2 Procedure and Instruments 2.2.1 Case Study . At the time of this study being conducted, the educational board considered involving parents in courses aimed at teaching conversational skills. One module already used parent participation, this module is the main focus of the case study, as it represents the first experience of parent participation in education. The module ‘Communication Skills’ is part of the first year of the Bachelor program. The case study was executed in January 2021. A total of six sessions were held using Zoom due to the COVID-19 pandemic, and in the penultimate session we invited parents of children with complex care needs to participate. In total, 13 parents participated in the practicum, each parent was matched with a group of six students. The teacher facilitated the encounter between students and parents in break-out rooms. Students prepared the meeting and made an interview guide, making use of a vignette described by the parents themselves, including pictures. This approach offered students the opportunity to interview parents and practice their communication skills, as well as to expand their knowledge about the lives of families with special needs. After the conversation, the parents provided feedback to the students. After completion of the Communication Skills Module, an online evaluation survey was sent to the parents, students, and teachers involved in this module. All participants were informed about the study and gave their consent to use their responses for research. The questionnaire contained eight open and closed questions. The questions focused on two research topics: learning outcomes and types of participation. Examples of the questionnaire for students were “On a scale from 1 to 10, have you learned something from the conversation with parents?” and “What have you learned from the conversation with parents?” (open), “What competences have you developed further by communicating with parents?” (providing them with seven roles based on the CanMEDS competency framework [23], as further explained in this manuscript, “Would you like parents to contribute to education more often? (never, sometimes, regularly, in all modules)” and “What would you like to learn from parents? (open). The questions for parents and teachers were similar. 2.2.2 Interview Study . The interview study was conducted after and separately from the case study and was designed to explore ways to make use of parent participation and the conditions required to do so. Parents of children with complex care needs, students, university staff, clients, and professionals (pedagogues) were invited to participate in the interviews. Participants were identified during informal conversations with experienced experts, researchers and university staff participating in the bachelor program Pedagogical Sciences. Furthermore, using the snowball effect, new participants were acquired from the interviewee network. Using information-orientated selection, stakeholders were selected based on the expectation of their information context [21]. The researcher contacted participants by email or phone and provided information about the study and participation. Participants received an information letter and signed the consent form. Semi-structured interviews were held online using Zoom for a period of three months (February - May 2021). A topic list is presented in Table 2. After agreement by participants, recordings and interview notes were made for analysis. [Insert Table 2] 2.3 Participants 2.3.1 Case Study. All parents who participated in the module completed the questionnaire ( n = 13). Additionally, three out of four teachers and 25 of the 123 students answered the questionnaire. In total, 41 surveys were received for data analysis. Demographic information about the participants is shown in Table 3. [Insert Table 3] 2.3.2 Interview Study. In total, 23 parents were invited to participate, 14 of whom participated in the interview (including 9 parents who also participated in the case study). Four staff members were invited and three participated. Four students from the curriculum committee were invited and three participated. Two clients were invited to participate as experienced experts. A pedagogue working in the field of people with intellectual disabilities was invited and participated. In total, 23 people were interviewed. Demographic information about the participants is shown in Table 4. [Insert Table 4] 2.4 Ethics approval and consent to participate This study is conducted in accordance with the guidelines for research with human participants, the Declaration of Helsinki, and the ethical standards of the research institute. Ethical approval for the research was obtained from the Scientific and Ethical Review Board (VCWE-2020-196) of the of the Faculty of Behavioral and Movement Sciences, Vrije Universiteit Amsterdam, The Netherlands. Participation was voluntarily, participants were free to decline to participate for any reason. 2.5 Data analysis The survey data from the closed questions were summarized, and descriptive statistics were computed. The answers to the open questions were coded in vivo. The interviews were transcribed and analyzed using directed content analysis following the steps for qualitative content analysis of Assarroudi et al. [22]. Two coders independently coded and categorized the data. A discussion was held to reach consensus and the findings were discussed with the entire research team in an iterative process. The interdisciplinary research team included different points of view (nurse, director of education, speech therapist, pedagogue, mother of a child with severe intellectual disabilities). The combination of practical and theoretical knowledge, personal and professional experience, and educational and clinical backgrounds has made the team diverse. This diversity led to the inclusion of various points of view and supported both the theoretical quality and the practical applicability of this study and the reliability and credibility of the results. The analyses were performed with the help of two frameworks. The first was the Towle taxonomy of patient involvement [16], as mentioned in the introduction. The second was the CanMEDS framework [23], which identifies and describes the different roles of healthcare professionals that are necessary to effectively meet the needs of the people they serve. In [country blinded for review], the national professional association uses the CanMEDS framework to describe the competences of pedagogues working in clinical practice [24]. The core of the model consists of the role of the clinical expert, with six other roles surrounding it: professional, communicator, collaborator, leader, advocate, and scholar. 3. Results This section is structured by means of the three research questions. 3.1. RQ1. What do students learn from parent participation ? What could they learn? 3.1.1 Case study: What do students learn? Participants seemed unanimous that parental participation is educational. All stakeholders participating in the case study valued parent participation in the Communication Skills module. “I think, because it was a real case, more authenticity and engagement [by students] was created.” (parent in survey) “It [the parent interview] showed me how an interview with a parent can be in a realistic way.” (student in survey) “That it [the parent interview] is real, makes students prepare more seriously for it.” (teacher in survey) In response to the closed-ended question of whether they preferred parent participation more frequently, 92% of the parents indicated that they wanted to participate in education beyond this module. All teachers were in favor of parent participation, and all participating students would like parents to be involved in another course (0% answered never, 40% answered sometimes, 60% answered regularly and 0% answered in each module). Participants were asked to check the boxes for the seven CanMEDS roles that they believed were impacted during the case study. Participants in all stakeholder groups suggested that learning happened primarily in the area of Communicator, Professional, and Clinical Expert (see Figures 1 and 2). In their explanation, parents, teachers,, and students mentioned that students learned more about the importance of the care provider-client relationship (professional) and the importance of listening/communication skills (communicator) and gained insight into clinical practice (clinical expert). [Insert Figure 1] [Insert Figure 2] 3.1.2 Interview study: What could students learn? In the interview study, all stakeholders were asked what students could learn from parent participation in their education. Their answers were analyzed and related to the CanMEDS roles. Figure 3 shows the most important competences and examples of what these include according to stakeholders. Students think that through patient contact, they want to, could, and should learn competences that belong to the CanMEDS role of the Professional. Stakeholders underscore that parent participation in education supports a professional attitude, commitment, and professional identity: “I think it is very important for students to practice their attitude toward parents. No matter how old a child is, see the parent and child as a person” (parent). Another important CanMEDS role that is touched upon through parent participation is that of the Communicator. Students can practice a variety of communication aspects with parents, such as empathy and shared decision making, that are relevant for a client-centered approach and the therapeutic relationship: “Listen carefully, listen carefully to us as parents and to our wishes, that’s all we need. I remember a care professional ; she really puts me at ease and that gives you confidence in someone like that” (parent). Finally, parents mention the role of Collaborator and refer to competences that support equality and openness to diversity: “It is nice to be given ideas by professionals, 'I've come across this or I've heard this, maybe that's something for you’. When that happened , I always felt 'ah yes, I don't have to do it alone'” (parent). Students and university staff, on the other hand, described how parent participation can contribute to the CanMEDS role of Clinical expert: “Parents can share their knowledge about the diagnosis, diverse treatments, and about rules and legislation” (student). “It is important for future pedagogues to have knowledge of diverse care needs and to be open to learning about new developments in the field” (staff). The CanMEDS roles of Leader, Scholar, and Advocate received the least attention from all the stakeholder groups as related to parent participation in education. [Insert Figure 3] 3.2 RQ2. What do different stakeholders see as possible types of participation in education? 3.2.1 Case study . In the survey, participants suggested many types of activities, such as informal conversations, guest lectures, or master classes given by parents. This should bring across life stories of families with children with complex care needs, specific topics such as family struggles, resilience, and current clinical practices. Additionally, teachers noted that parents can teach students specific conversation skills that are important to clients. They mentioned listening and communication skills to build a good practitioner-client relationship in which parents are seen as experts in their children. 3.2.2 Interview study. Participants mentioned a wide variety of activities (see Table 5), including level one to level six, on the Towle taxonomy of patient involvement. A majority of ideas fall under level 3, sharing experiences such as vlogs, home visits to families, guest lectures, and informative conversations. At higher levels (4-6), fewer ideas were formulated, but all stakeholder groups mentioned home visits. At level four, participants mentioned that parents can play a role in providing formative feedback, reflection, and evaluation. At level five, parents and university staff mentioned involving parents in the development of parts of the curriculum. At level six, parents suggested participating in a committee that advises the directors of education on the learning objectives of the curriculum. [Insert Table 5] 3.3 RQ3. What are the important conditions for parent participation? In the interview study, parents and university staff highlighted several conditions that they considered necessary for successful parent participation in education. All suggestions were coded and clustered into six themes: integration within the education program, recognition of value, time, collaboration, training, and compensation in money and kind (Figure 4). [Insert Figure 4] For both stakeholder groups, time, collaboration, and (financial) compensation were essential conditions. For staff, parent participation also had to fit within the academic framework, while parents stressed the importance of parent participation in education. This value could be expressed by recognizing that this learning experience cannot be found in books and that participation itself can be rewarding for parents who want to add to the education of future care providers. With respect to time, parents acknowledged that the encounter should not be an additional burden. The flexibility of choosing the time and date of participation, timely planning, and a large pool of participating parents were also mentioned. The staff mentioned the importance of cutting out other content to accommodate parent participation. Both groups mentioned the relevance of collaboration between parents and teachers. Parents mentioned being well informed about the learning goals and students’ knowledge and participation, and the staff mentioned consulting about the program and everyone's role. Interestingly, both groups mentioned the importance of training and coaching parents to improve their educational and pedagogical skills. They also draw attention to compensating for their effort. This can be financial or with a contract, but parents also mentioned the recognition and real interest of teachers and students and the therapeutic advice provided by students. In this way, according to parents, both parents and students would benefit from the student encounter. 4. Discussion This study showed that parent participation in the bachelor program Pedagogical Sciences was possible, that stakeholders valued the contribution to learning outcomes, and that suggestions and ideas were combined on activities and conditions for the future. Parents, university staff and students were highly motivated to involve parents in education since, according to them, this results in meaningful learning. Parent participation was mainly suggested at levels three and four of the Towle taxonomy. On these two levels, parents are involved in a way that engages and motivates students, and parents feel that they can make a meaningful contribution to the education of future care providers. In particular, competences in the CanMEDS roles of the Professional, the Communicator, and the Clinical expert were suggested to be supported by parent participation. However, for successful parent participation in the long run, conditions at both the organization and the practical level should be supported. When examining students’ learning, there seems to be real promise in using parent participation to stimulate learning in the CanMEDS Professional, Communicator and Clinical expert roles. This finding is consistent with the benefits found in other studies on patient participation in education [5,6]. Future research is needed to investigate whether these student competences sustainably increase and also translate to their professional careers. Participants mentioned a variety of possible types of participation, ranging from level one to level six, on the Towle taxonomy of patient involvement. Most of the ideas referred to opportunities where parents can actively share their experiences, such as vlogs, home visits to families, guest lectures,, and informative conversations. In addition to time and (financial) compensation, the relevant conditions for parent participation were flexibility, collaboration, and the importance of training and coaching for parents. These conditions refer to the relevance of institutional and financial support to support parent participation in the long term [7]. Parent participation enables students to learn through first-hand experiences, to see and feel the emotions of parents and themselves, to challenge their beliefs and learn about interpersonal relationships [25]. Looking at Dee Fink’s taxonomy of significant learning [26] in light of our results, it becomes clear that learning through parent participation relates to two of the six dimensions: the human dimension (e.g., compassion and caring, self-reflection, integrity and honesty) and the dimension of caring (e.g., active listening, mutual understanding, respect for diversity). However, given that all six levels of Fink’s taxonomy of significant learning are important for educational programs [27], it is important to realize that parent participation should be implemented with care and a clear vision. This study is the first step in supporting curriculum developers with ideas about the type of learning activities and the relevance of conditions. The next step is to develop these ideas further in collaboration with all stakeholders to implement parent participation in a comprehensive and sustainable way. 4.1 Practical implications Parent participation in education can vary with the level of involvement, similar to client participation. According to the Towle taxonomy of patient involvement [16], suggestions and ideas on how to involve parents are found mainly at levels three and four, sharing experiences and direct teaching and/or evaluation. These are feasible but might be achievable only if parents can have a voice or an ally at higher levels in the organization. The conditions that stakeholders mentioned for sustainable parent participation can be summarized at the level of curriculum development (academic embedding, collaboration between parents and university staff) and at the level of the institution (recognition of the value, time for preparation, education and support for parents, financial compensation). 4.2 Strengths and limitations The strengths of this mixed-method exploration study were the participatory design and the integration of a case study, as well as in-depth interviews with a diverse group of stakeholders. This enabled us to ask stakeholders to reflect on a first trial, as well as to broaden their scope to further possibilities and gains. Another strength is that due to the COVID-19 pandemic, we interviewed stakeholders online, which gave more people the opportunity to participate in an interview. Additionally, the well-known frameworks that are frequently used in studies about patient participation were utilized and helpful for categorizing stakeholders’ ideas in an organized way. A limitation is the small number of students and clients participating in both studies. This limited our view of the student and client perspectives. However, clients are relevant stakeholders because parents' stories may be about them. Therefore, future research may focus even more on the client perspective. An additional limitation can be drawn from the fact that the case study was based on parent participation as teachers (level 3), which might have impacted parents’ answers in the interview study. A third limitation is the limited number of men included in both studies. The perspectives of fathers and male students may differ from those of women and require further research. Despite the rich data that were collected, we have not performed a detailed thematic analysis. The pragmatic approach adopted meant that practical applicability was the main objective of this study. This could be seen as a limitation and might offer opportunities to ask about more personal experiences, viewpoints, and feelings in a future research project. 4.3 Conclusion This study shows that parents of children with complex care needs can be involved in the education program, and that all stakeholder groups believe this approach is desirable and relevant - as long as participation makes learning meaningful. Listening to authentic stories contributes to students’ motivation for their future profession and helps them understand how elements of their study can be relevant for later professional practice. Parents felt that their contributions were meaningful and satisfying since the students were interested and highly motivated to listen and learn from them. In general, the findings of this study are practical and can partly inform curriculum makers and university staff today; however, more research is needed to obtain more comprehensive ideas of “what” and “how” students should learn to create meaningful learning through parent participation”. Declarations Acknowledgments We thank all participants for their valuable contribution to this study. Exploring the involvement of parents of children with complex care needs in higher education References Fox J. Perspectives of experts-by-experience: An exploration of lived experience involvement in social work education. Soc Work Educ. 2020;1-18. https://doi.org/10.1080/02615479.2020.1861244 Gordon M, Gupta S, Thornton D, Reid M, Mallen E, Melling A. Patient/service user involvement in medical education: A best evidence medical education (BEME) systematic review: BEME Guide No. 58. Med Teach. 2020;42:4-16. https://doi.org/10.1080/0142159X.2019.1652731 Rowland P, Anderson M, Kumagai AK, et al. 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Ecol Soc. 2020;25(1). https://doi.org/10.5751/ES-11369-250116 Brinkmann S. Qualitative Interviewing. Oxford: University Press; 2013. Assarroudi A, Heshmati Nabavi F, Armat MR, Ebadi A, Vaismoradi M. Directed qualitative content analysis: the description and elaboration of its underpinning methods and data analysis process. J Res Nurs. 2018;23(1):42–55. https://doi.org/10.1177/1744987117741667 Frank JR, Snell L, Sherbino J. CanMEDS: Physician Competency Framework. Ottawa: Royal Coll Physicians Surg Canada; 2015. Nederlandse vereniging van pedagogen en onderwijskundigen (NVO). De orthopedagoog als professional. Beroepscompetentieprofiel basis-orthopedagoog. [Dutch Soc Pedagogues Educ]. 2019. Accessed 15 Dec 2023. https://www.nvo.nl/kwaliteit/beroepscompetentieprofielen#beroepscompetentieprofielen-van-orthopedagogen Hyland T. The affective domain of education. In: Mindfulness and learning: Celebrating the affective dimension of education, 87-104. 2011. https://doi.org/10.1007/978-94-007-1911-8_7 Fink LD. Towards learning-centred education in colleges and universities. New Dir Teach Learn. 2021;7-16. https://doi.org/10.1002/tl.20447 Branzetti J, Gisondi MA, Hopson LR, Regan L. Aiming beyond competent: The application of the taxonomy of significant learning to medical education. Teach Learn Med. 2019;31(4):466-478. https://doi.org/10.1080/10401334.2018.1561368 Moseholm E, Fetters MD. Conceptual models to guide integration during analysis in convergent mixed methods studies. Methodol Innov. 2017;10:1–11. https://doi-org.vu-nl.idm.oclc.org/10.1177/2059799117703118 Tables Table 1. Towle Taxonomy as described in Towle et al., 2010 [16] Degree to which the patient is actively involved in the learning encounter 1 Paper-based or electronic case or scenario 2 Standardized or volunteer patient in a clinical setting 3 Patient shares his or her experience with students within a faculty-directed curriculum 4 Patient-teacher(s) are involved in teaching or evaluating students 5 Patient-teacher(s) as equal partners in student education, evaluation and curriculum development 6 Patient(s) involved at the institutional level in addition to sustained involvement as patient-teacher(s) in education, evaluation and curriculum development for students Table 2 Topic List Interview Study Introduction Introduce yourself, goal of interview, consent for audio-recording Current situation Could you tell me more about your current situation\ Parents: your family Staff: your work Students: your education program Clients: your care organization Proffessionals: your work Desirable situation From your position, what should students learn during their bachelor program? Which stakeholders or target groups could play an active role in the education program? Do you think parents of children with complex care needs could play an active role in the education program? Parent participation in education What could students learn from parents of children with complex care needs? (RQ1) From your perspective, what type of participation could parents ideally have. What role could they play? (RQ2) Pre-conditions (only for parents and staff) From your perspective, what are relevant pre-conditions for parental participation in the education program? (RQ3) Closing Is there more you want to add on this topic? Thank you and finalizing. Table 3. Participants of The Case Study Participant Number Gender Specific stakeholder group information Parents 13 female: 10 male: 3 Type of disability of child: ATR-x syndrome: 4x Autism and additional conditions: 2x Severe intellectual disability: 2x Down syndrome: 1x MeCP2- related developmental disorder: 1x Cerebral Palsy and additional conditions: 1x CDKL 5 gene mutation: 1x Physical disability with mild intellectual disability: 1x Teachers 3 female: 3 Years of teaching experience: 1 - 1.5 years Students 25 female: 25 Mean age: 19.4 years Year of education: Bachelor year 1 Table 4. Participants of the Interview Study Participant Number Gender Specific stakeholder group information Parents 14 female: 11 male: 3 Type of disability of child: CDK-5 Gene defect ATRX-syndrome Rett-syndrome Down syndrome Disorder on the autism spectrum Cerebral palsy Severe physical disability (often in combination with intellectual disability) University staff 3 female 1 researcher with the expertise of people with intellectual disabilities 1 teacher involved in clinical and professional courses 1 program director, Pedagogical Sciences Students 3 female Master students Clients > 16 years 2 female Experienced experts Type of disability: Cerebral palsy Professionals 1 female Pedagogue working in an organization for people with children with complex care needs, with an expertise on practice based learning Table 5 Means of Parent participation Sorted by Level of Involvement as Defined in the Towle Taxonomy Towle taxonomy of patient involvement Summarized and synthesized stakeholder ideas Degree to which patient is actively involved in learning encounter Ideas put forward by parents and people with CNN >16 years ( n = 16) Ideas put forward by university staff and care professionals ( n = 4) Ideas put forward by students ( n = 3) 1. Paper based or electronic case/scenario 5 suggestions 0 suggestions 3 suggestions General documentaries Blogs, podcasts Interviews on paper None Watching/discussing videos/documentaries 2. Standardized or volunteer in a clinical setting 2 suggestions 1 suggestion 0 suggestions Role play Observation of standardized situations None 3. Share experience within a faculty directed curriculum 23 suggestions 2 suggestions 10 suggestions Videos/vlogs of home situations Receiving home visits Student accompanied visit to a professional Giving guest lectures Informative conversations with students (e.g. online chat exchange, speed dating) Home visit observations with reflection in class Guest lectures by parents/siblings Informative conversations with parents/children/professionals Home visits (observational) Observation of specific therapy situations with parents and professionals 4. Teaching or evaluating students 4 suggestions 1 suggestions 1 suggestions Practicing interview skills with students (parent feedback) Parent feedback after home visits with specific tasks Performance of specific tasks by students during home visits Home visits followed by evaluation/ reflection with parents 5. Equal partner in student education, evaluation and curriculum development 6 suggestions 3 suggestions 0 suggestions Input curriculum/ specific practicals (e.g. content, material and evaluation) Input curriculum/ specific practicals (e.g. creation of tasks with specific learning goals) ‘Pool’ of specifically trained parents None 6. Involvement at the institutional level 1 suggestion 0 suggestions 0 suggestions Participation in curriculum or evaluation committee None None Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 09 Apr, 2025 Reviews received at journal 28 Nov, 2024 Reviewers agreed at journal 21 Nov, 2024 Editor assigned by journal 05 Jul, 2024 Reviewers invited by journal 31 May, 2024 Submission checks completed at journal 31 May, 2024 First submitted to journal 24 May, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4032553","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":437693950,"identity":"3622d3ad-1037-11f0-91e4-06cc9d20a69f","order_by":0,"name":"Agnes M. Willemen","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAv0lEQVRIiWNgGAWjYNACAwsZMP0BRLATp0WCB0QxzgCRzMRZA9HCzEOMFv4G7gRmngIJHn6xw8ce27YdZjAnpEXiAO8GZh6gwyRnp6Ub5wK1WDYTchJISw5Qi8HtHDPpnDOHGQwOE9AhD9Nifzv/m7QFMVoM4LZI57BJM1QQocXwMO+Gw3+AWiRup5lJ9lSk8xDUIne8d+PDGX9s5PhnJz+T+GFgLWdwvIGAHmCQHkDm8xBQPwpGwSgYBaOAGAAA1MI1Z778gYYAAAAASUVORK5CYII=","orcid":"","institution":"Vrije Universiteit Amsterdam","correspondingAuthor":true,"prefix":"","firstName":"Agnes","middleName":"M.","lastName":"Willemen","suffix":""},{"id":437694147,"identity":"5d56b31f-1037-11f0-91e4-06cc9d20a69f","order_by":1,"name":"Friederike Ertmer","email":"","orcid":"","institution":"Vrije Universiteit Amsterdam","correspondingAuthor":false,"prefix":"","firstName":"Friederike","middleName":"","lastName":"Ertmer","suffix":""},{"id":437694148,"identity":"669798ed-1037-11f0-91e4-06cc9d20a69f","order_by":2,"name":"Melanie C. Verdam","email":"","orcid":"","institution":"Vrije Universiteit Amsterdam","correspondingAuthor":false,"prefix":"","firstName":"Melanie","middleName":"C.","lastName":"Verdam","suffix":""},{"id":437694149,"identity":"763f791e-1037-11f0-91e4-06cc9d20a69f","order_by":3,"name":"Anne de la Croix","email":"","orcid":"","institution":"Amsterdam UMC Location VUmc","correspondingAuthor":false,"prefix":"","firstName":"Anne","middleName":"de la","lastName":"Croix","suffix":""}],"badges":[],"createdAt":"2024-03-07 21:46:54","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4032553/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4032553/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":79908756,"identity":"732aa31a-ae92-46af-9901-1118196b128c","added_by":"auto","created_at":"2025-04-04 11:21:45","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":29050,"visible":true,"origin":"","legend":"\u003cp\u003eCanMED roles supported by parent participation in the case study (parent view)\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-4032553/v1/8e5fa197e098ae5ff3f9c151.png"},{"id":79910274,"identity":"bbc79cf0-7a84-4a0e-bdda-218fac8ae431","added_by":"auto","created_at":"2025-04-04 11:29:45","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":29887,"visible":true,"origin":"","legend":"\u003cp\u003eCanMED roles supported by parent participation in the case study (student view)\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-4032553/v1/a018cdb92073c72ad59ef16e.png"},{"id":79908759,"identity":"218e3485-c584-4934-9c85-d025d78282be","added_by":"auto","created_at":"2025-04-04 11:21:45","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":107005,"visible":true,"origin":"","legend":"\u003cp\u003eExamples of competences of CanMED roles supported by parental participation in education, according to parents, university staff and students\u003c/p\u003e","description":"","filename":"3.png","url":"https://assets-eu.researchsquare.com/files/rs-4032553/v1/a569616e9fa4e42499238135.png"},{"id":79908758,"identity":"b196c769-dee6-4609-81d5-4ac8b2bdc7a8","added_by":"auto","created_at":"2025-04-04 11:21:45","extension":"png","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":30586,"visible":true,"origin":"","legend":"\u003cp\u003eConditions for sustainable parent participation in education according to parents and university staff\u003c/p\u003e","description":"","filename":"4.png","url":"https://assets-eu.researchsquare.com/files/rs-4032553/v1/3eaac79c71e28953f59cd27c.png"},{"id":79910950,"identity":"54e88c7f-610d-4056-9aca-632e0ac7ce1f","added_by":"auto","created_at":"2025-04-04 11:37:46","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":911541,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4032553/v1/f4b19cc9-70b0-44b2-b45e-246854484965.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Parents of children with complex care needs as educational partners in higher education? An explorative participatory mixed-methods study.","fulltext":[{"header":"1. Introduction","content":"\u003cp\u003ePatient or service user participation in education is known for its benefits and has a long tradition [1-4]. It stimulates and enhances patient-centered care, improves students\u0026apos; social skills and relationships with patients, and provides insight into the real world of patients [5,6]. Patient participation in education, especially education in health care and social work, is widely seen as an important aspect of education [7]. However, when the client or patient is a child, there are logistical (Can children miss school to participate?), legal (Are children allowed to work?), practical (Can the child speak?) and ethical (Should we place children in front of groups to talk about personal issues?) problems with their participation in education. Looking beyond the child, however, opens up a new type of participation: that of parents. If a child is in need of care, therapy or treatment, interactions will inevitably occur with the caregiver present (in this piece, we use the term \u0026lsquo;parent\u0026rsquo;, but we recognize that caregivers can also be other than parents alone). Working with children means collaborating with parents, which places a professional in a \u0026apos;triangle of care\u0026rsquo; [8]. Parents can be seen as experts in the care and development of their child [9] and are relevant stakeholders for collaboration [10]. This is especially the case when children have complex or chronic mental, intellectual, or physical problems [11]. Therefore, collaboration with parents could be an important topic in higher education.\u003c/p\u003e\n\u003cp\u003eThe involvement of\u0026nbsp;parents is a growing trend in research [12,13], but parent participation in education is relatively rare, and studies on this topic are scarce [14]. One of those rare studies on parent participation in higher education is \u0026lsquo;Operation Homefront\u0026rsquo; [5]. Operation Homefront was a project in which third-year medical students visited families of children with special needs at their home twice. The study analyzed written reflections from students, who described their experiences. Operation Homefront increased knowledge and skills in various competence areas, of which the area most frequently mentioned was \u0026lsquo;demonstration of respect for the attitudes, behaviors, and lifestyles of the patient, parent, and family [5].\u003c/p\u003e\n\u003cp\u003eThere are three reasons why we need to study the participation of parents in education further. First, parents of children with complex care needs typically have long-term collaborations with multiple care professionals from different fields of expertise. Therefore, they can share a variety of experiences with students. Although these experiences are interesting for future care professionals, it is still unclear how they add to the learning objectives of students. This is an especially relevant question for students in higher education due to the theoretical and scientific foundation of the curriculum [15].\u003c/p\u003e\n\u003cp\u003eSecond, patient participation in education can take different forms, which have been charted in the Towle Taxonomy [16], which is a comprehensive model with six levels, described in Table 1. The levels increase with the degree of involvement in education. At level 1, the patient\u0026apos;s story is used as a paper-based case, while at level 6, the patient participates in the development of the curriculum. Compared to patients, parents are limited in showing typical behaviors or symptoms (level 1), but parents can act as teachers or equal partners (levels 4 and 5). To the best of our knowledge, this model has not been applied to parent participation in education programs for care professionals. Therefore, this study focused on the question which different types of parent participation are possible in education.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e[Insert Table 1]\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThird, parents of children with complex care needs often already feel overwhelmed and exhausted, and they experience their role as parent caregivers as heavy and intensive [17,18]. This new role as a parent-teacher can make their duties even harder. However, it can also offer opportunities for parents to be willing to contribute to the quality of care of subsequent generations. Therefore, in this study, we explore the conditions that are relevant for parents to be involved in education.\u003c/p\u003e\n\u003cp\u003eThe current study focused on the central questions of whether and how parents of children with complex care needs can be involved in the academic curriculum and what students (could) learn from this. The following research questions were central to this project:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRQ1. What do students learn from parent participation? What could they learn?\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRQ2. What do different stakeholders see as possible types of participation in education?\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRQ3. What are important conditions for parent participation?\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cp\u003e\u003cem\u003e2.1 Context of the study\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe aim of this project was to generate knowledge about participation of parents of children with complex care needs in higher education. A participatory action framework was adopted as a core of this study. This means that participation of all relevant stakeholders was stimulated in all phases of the study. Participatory action research is interpretive, with a focus on people\u0026rsquo;s interpretation of activities, and hermeneutic, as it looks at how people make meaning of their experiences [19]. Participatory action research can and has been used to improve standard practices in a variety of professional fields [19,20]. By action and reflection in collaboration with relevant stakeholders, participatory action research seeks to generate knowledge to improve educational practice in line with what is relevant to these stakeholders.\u003c/p\u003e\n\u003cp\u003eThis study is part of a larger project that was initiated by the mother of a child with complex care needs, who is also a researcher in medical education. In the context of this project, the current study was framed as a first step to find out what parent participation can add to the curriculum. This study consisted of two parts: 1) a case study in which parent participation was piloted in a module with over 100 students and evaluated with a survey with open and closed questions, and 2) an interview study to delve deeper into the perspectives of all relevant stakeholders, also the ones who did not participate in the case study. The voices of many stakeholders were heard, in this case: parents, students, teachers, clients, professionals, and educational staff.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eA mixed methods design was chosen to collect quantitative and qualitative data in a convergent parallel design. The case study was evaluated with an online survey with open and closed questions resulting in quantitative (frequencies of answer options) and qualitative data (citations). The interview study resulted in qualitative data (e.g., themes and citations). Data collection for both studies occurred in parallel. Then, data were analyzed simultaneously and independently after completing data collection. Finally, results from both studies were integrated to look for convergence, divergence, and expansion [28].\u003c/p\u003e\n\u003cp\u003eThe current study was conducted in the bachelor program of Pedagogical Sciences [Name of university \u0026ndash; blinded for review]. This bachelor program is embedded in the department of [blinded for review]. In [name country \u0026ndash; blinded for review], pedagogy is a profession in itself. Pedagogues work not only in research and policy functions but also as care professionals in clinical settings. A pedagogue is educated to understand and promote child development from a contextual perspective characterized by collaboration between formal and informal caregivers, such as teachers, caregivers, parents, siblings, family members, and volunteers.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.2 Procedure and Instruments\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.2.1 Case Study\u003c/em\u003e. At the time of this study being conducted, the educational board considered involving parents in courses aimed at teaching conversational skills. One module already used parent participation, this module is the main focus of the case study, as it represents the first experience of parent participation in education. The module \u0026lsquo;Communication Skills\u0026rsquo; is part of the first year of the Bachelor program. The case study was executed in January 2021. A total of six sessions were held using Zoom due to the COVID-19 pandemic, and in the penultimate session we invited parents of children with complex care needs to participate. In total, 13 parents participated in the practicum, each parent was matched with a group of six students. The teacher facilitated the encounter between students and parents in break-out rooms. Students prepared the meeting and made an interview guide, making use of a vignette described by the parents themselves, including pictures. This approach offered students the opportunity to interview parents and practice their communication skills, as well as to expand their knowledge about the lives of families with special needs. After the conversation, the parents provided feedback to the\u0026nbsp;students.\u003c/p\u003e\n\u003cp\u003eAfter completion of the Communication Skills Module, an online evaluation survey was sent to the parents, students, and teachers involved in this module. All participants were informed about the study and gave their consent to use their responses for research. The questionnaire contained eight open and closed questions. The questions focused on two research topics: learning outcomes and types of participation. Examples of the questionnaire for students were \u0026ldquo;On a scale from 1 to 10, have you learned something from the conversation with parents?\u0026rdquo; and \u0026ldquo;What have you learned from the conversation with parents?\u0026rdquo; (open), \u0026ldquo;What competences have you developed further by communicating with parents?\u0026rdquo; (providing them with seven roles based on the CanMEDS competency framework [23], as further explained in this manuscript, \u0026ldquo;Would you like parents to contribute to education more often? (never, sometimes, regularly, in all modules)\u0026rdquo; and \u0026ldquo;What would you like to learn from parents? (open). The questions for parents and teachers were similar.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.2.2 Interview Study\u003c/em\u003e. The interview study was conducted after and separately from the case study and was designed to explore ways to make use of parent participation and the conditions required to do so. Parents of children with complex care needs, students, university staff, clients, and professionals (pedagogues) were invited to participate in the interviews. Participants were identified during informal conversations with experienced experts, researchers and university staff participating in the bachelor program Pedagogical Sciences.\u0026nbsp;Furthermore,\u0026nbsp;using the snowball\u0026nbsp;effect, new participants were acquired from the interviewee network. Using information-orientated selection, stakeholders were selected based on the expectation of their information context [21]. The researcher contacted participants by email or phone and\u0026nbsp;provided\u0026nbsp;information about the study and participation. Participants received an information letter and signed the consent form.\u0026nbsp;Semi-structured\u0026nbsp;interviews were held online using Zoom\u0026nbsp;for\u0026nbsp;a period of three months (February - May 2021). A topic list is presented in Table 2. After agreement by participants, recordings and interview notes were made for analysis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e[Insert Table 2]\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.3 Participants\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.3.1 Case Study.\u003c/em\u003e All parents who participated in the module completed the questionnaire (\u003cem\u003en\u003c/em\u003e = 13). Additionally, three out of four teachers and 25 of the 123 students answered the questionnaire. In total, 41 surveys were received for data analysis. Demographic information about the participants is shown in Table 3.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e[Insert Table 3]\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.3.2 Interview Study.\u0026nbsp;\u003c/em\u003eIn total, 23 parents were invited to participate, 14 of whom participated in the interview (including 9 parents who also participated in the case study). Four staff members were invited and three participated. Four students from the curriculum committee were invited and three participated. Two clients were invited to participate as experienced experts. A pedagogue working in the field of people with intellectual disabilities was invited and participated. In total, 23 people were interviewed. Demographic information about the participants is shown in Table 4.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e[Insert Table 4]\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.4 Ethics\u0026nbsp;approval\u0026nbsp;and consent to participate\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis study is conducted in accordance with the guidelines for research with human participants, the Declaration of Helsinki, and the ethical standards of the research institute. Ethical approval for the research was obtained from the Scientific and Ethical Review Board (VCWE-2020-196) of the of the Faculty of Behavioral and Movement Sciences, Vrije Universiteit Amsterdam, The Netherlands. Participation was voluntarily, participants were free to decline to participate for any reason.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.5 Data analysis\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe survey data from the closed questions were summarized, and descriptive statistics were computed. The answers to the open questions were coded in vivo. The interviews were transcribed and analyzed using directed content analysis following the steps for qualitative content analysis of Assarroudi et al. [22]. Two coders independently coded and categorized the data. A discussion was held to reach consensus and the findings were discussed with the entire research team in an iterative process. The interdisciplinary research team included different points of view (nurse, director of education, speech therapist, pedagogue, mother of a child with severe intellectual disabilities). The combination of practical and theoretical knowledge, personal and professional experience, and educational and clinical backgrounds has made the team diverse. This diversity led to the inclusion of various points of view and supported both the theoretical quality and the practical applicability of this study and the reliability and credibility of the results.\u003c/p\u003e\n\u003cp\u003eThe analyses were performed with the help of two frameworks. The first was the Towle taxonomy of patient involvement [16], as mentioned in the introduction. The second was the CanMEDS framework [23], which identifies and describes the different roles of healthcare professionals that are necessary to effectively meet the needs of the people they serve. In [country blinded for review], the national professional association uses the CanMEDS framework to describe the competences of pedagogues working in clinical practice [24]. The core of the model consists of the role of the clinical expert, with six other roles surrounding it: professional, communicator, collaborator, leader, advocate, and scholar.\u003c/p\u003e"},{"header":"3. Results","content":"\u003cp\u003eThis section is structured by means of the three research questions.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e3.1. RQ1. What do students learn from parent\u0026nbsp;\u003c/em\u003eparticipation\u003cem\u003e? What could they learn?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e3.1.1 Case study:\u0026nbsp;\u003c/em\u003e\u003cem\u003eWhat\u003c/em\u003e\u003cem\u003e\u0026nbsp;do students learn?\u0026nbsp;\u003c/em\u003eParticipants seemed unanimous that parental participation is educational. All stakeholders participating in the case study valued parent participation in the Communication Skills module.\u003c/p\u003e\n\u003cp\u003e\u0026ldquo;I think, because it was a real case, more authenticity and engagement [by students] was created.\u0026rdquo; (parent in survey)\u003c/p\u003e\n\u003cp\u003e\u0026ldquo;It [the parent interview] showed me how an interview with a parent can be in a realistic way.\u0026rdquo; (student in survey)\u003c/p\u003e\n\u003cp\u003e\u0026ldquo;That it [the parent interview] is real, makes students prepare more seriously for it.\u0026rdquo; (teacher in survey)\u003c/p\u003e\n\u003cp\u003eIn response to the closed-ended question of whether they preferred parent participation more frequently, 92% of the parents indicated that they wanted to participate in education beyond this module. All teachers were in favor of parent participation, and all participating students would like parents to be involved in another course (0% answered never, 40% answered sometimes, 60% answered regularly and 0% answered in each module).\u003c/p\u003e\n\u003cp\u003eParticipants were asked to check the boxes for the seven CanMEDS roles that they believed were impacted during the case study. Participants in all stakeholder groups suggested that learning happened primarily in the area of Communicator, Professional, and Clinical Expert (see Figures 1 and 2). In their explanation, parents, teachers,, and students mentioned that students learned more about the importance of the care provider-client relationship (professional) and the importance of listening/communication skills (communicator) and gained insight into clinical practice (clinical expert).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e[Insert Figure 1]\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e[Insert Figure 2]\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e3.1.2 Interview study: What could students learn?\u0026nbsp;\u003c/em\u003eIn the interview study, all stakeholders were asked what students could learn from parent participation in their education. Their answers were analyzed and related to the CanMEDS roles. Figure 3 shows the most important competences and examples of what these include according to stakeholders.\u003c/p\u003e\n\u003cp\u003eStudents think that through patient contact, they want to, could, and should learn competences that belong to the CanMEDS role of the Professional. Stakeholders underscore that parent participation in education supports a professional attitude, commitment, and professional identity:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think it is very important for students to practice their attitude toward parents. No matter how old a child is, see the parent and child as a person\u0026rdquo; (parent).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAnother important CanMEDS role that is touched upon through parent participation is that of the Communicator. Students can practice a variety of communication aspects with parents, such as empathy and shared decision making, that are relevant for a client-centered approach and the therapeutic relationship:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Listen carefully, listen carefully to us as parents and to our wishes, that\u0026rsquo;s all we need. I remember a care professional\u003c/em\u003e\u003cem\u003e;\u003c/em\u003e\u003cem\u003e\u0026nbsp;she really\u0026nbsp;\u003c/em\u003e\u003cem\u003eputs\u003c/em\u003e\u003cem\u003e\u0026nbsp;me at ease and that gives you confidence in someone like that\u0026rdquo; (parent).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFinally, parents mention the role of Collaborator and refer to competences that support equality and openness to diversity:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;It is nice to be given ideas by professionals, \u0026apos;I\u0026apos;ve come across this or I\u0026apos;ve heard this, maybe that\u0026apos;s something for you\u0026rsquo;. When that happened\u003c/em\u003e\u003cem\u003e,\u003c/em\u003e\u003cem\u003e\u0026nbsp;I always felt \u0026apos;ah yes, I don\u0026apos;t have to do it alone\u0026apos;\u0026rdquo; (parent).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eStudents and university staff, on the other hand, described how parent participation can contribute to the CanMEDS role of Clinical expert:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Parents can share their knowledge about the diagnosis, diverse treatments, and about rules and legislation\u0026rdquo;\u003c/em\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003cem\u003e(student).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;It is important for future pedagogues to have knowledge of diverse care needs and to be open to learning about new developments in the field\u0026rdquo; (staff).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe CanMEDS roles of Leader, Scholar, and Advocate received the least attention from all the stakeholder groups as related to parent participation in education.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e[Insert Figure 3]\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e3.2 RQ2. What do different stakeholders see as possible types of\u0026nbsp;\u003c/em\u003eparticipation\u003cem\u003e\u0026nbsp;in education?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e3.2.1 Case study\u003c/em\u003e. In the survey, participants suggested many types of activities, such as informal conversations, guest lectures, or master classes given by parents. This should bring across life stories of families with children with complex care needs, specific topics such as family struggles, resilience, and current clinical practices. Additionally, teachers noted that parents can teach students specific conversation skills that are important to clients. They mentioned listening and\u0026nbsp;communication\u0026nbsp;skills\u0026nbsp;to build\u0026nbsp;a good practitioner-client relationship in which parents are seen as experts in their children.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e3.2.2 Interview study.\u003c/em\u003e Participants mentioned a wide variety of activities (see Table 5), including level one to level six, on the Towle taxonomy of patient involvement. A majority of ideas fall under level 3, sharing experiences such as vlogs, home visits to families, guest lectures, and informative conversations. At higher levels (4-6), fewer ideas were formulated, but all stakeholder groups mentioned home visits. At level four, participants mentioned that parents can play a role in providing formative feedback, reflection, and evaluation. At level five, parents and university staff mentioned involving parents in the development of parts of the curriculum. At level six, parents suggested\u0026nbsp;participating\u0026nbsp;in a committee that advises the directors of education on the learning objectives of the curriculum.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e[Insert Table 5]\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e3.3 RQ3. What are\u0026nbsp;\u003c/em\u003e\u003cem\u003ethe\u0026nbsp;\u003c/em\u003e\u003cem\u003eimportant conditions for parent participation?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the interview study, parents and university staff highlighted several conditions that they considered necessary for successful parent participation in education. All suggestions were coded and clustered into six themes: integration within the education program, recognition of value, time, collaboration, training, and compensation in money and kind (Figure 4).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e[Insert Figure 4]\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFor both stakeholder groups, time, collaboration, and (financial) compensation were essential conditions. For staff, parent participation also had to fit within the academic framework, while parents stressed the importance of parent participation in education. This value could be expressed by recognizing that this learning experience cannot be found in books and that participation itself can be rewarding for parents who want to add to the education of future care providers. With respect to time, parents acknowledged that the encounter should not be an additional burden. The flexibility of choosing the time and date of participation, timely planning, and a large pool of participating parents were also mentioned. The staff mentioned the importance of cutting out other content to accommodate parent participation. Both groups mentioned the relevance of collaboration between parents and teachers. Parents mentioned being well informed about the learning goals and students\u0026rsquo; knowledge and participation, and the staff mentioned consulting about the program and everyone\u0026apos;s role.\u003c/p\u003e\n\u003cp\u003eInterestingly, both groups mentioned the importance of training and coaching parents to improve their educational and pedagogical skills. They also draw attention to compensating for their effort. This can be financial or with a contract, but parents also mentioned the recognition and real interest of teachers and students and the therapeutic advice provided by students. In this way, according to parents, both parents and students would benefit from the student encounter.\u003c/p\u003e"},{"header":"4. Discussion","content":"\u003cp\u003eThis study showed that parent participation in the bachelor program Pedagogical Sciences was possible, that stakeholders valued the contribution to learning outcomes, and that suggestions and ideas were combined on activities and conditions for the future. Parents, university staff and students were highly motivated to involve parents in education since, according to them, this results in meaningful learning. Parent participation was mainly suggested at levels three and four of the Towle taxonomy. On these two levels, parents are involved in a way that engages and motivates students, and parents feel that they can make a meaningful contribution to the education of future care providers. In particular, competences in the CanMEDS roles of the Professional, the Communicator, and the Clinical expert were suggested to be supported by parent participation. However, for successful parent participation in the long run, conditions at both the organization and the practical level should be supported.\u003c/p\u003e\n\u003cp\u003eWhen examining students\u0026rsquo; learning, there seems to be real promise in using parent participation to stimulate learning in the CanMEDS Professional, Communicator and Clinical expert roles. This finding is consistent with the benefits found in other studies on patient participation in education [5,6]. Future research is needed to investigate whether these student competences sustainably increase and also translate to their professional careers. Participants mentioned a variety of possible types of participation, ranging from level one to level six, on the Towle taxonomy of patient involvement. Most of the ideas referred to opportunities where parents can actively share their experiences, such as vlogs, home visits to families, guest lectures,, and informative conversations. In addition to time and (financial) compensation, the relevant conditions for parent participation were flexibility, collaboration, and the importance of training and coaching for parents. These conditions refer to the relevance of institutional and financial support to support parent participation in the long term [7].\u003c/p\u003e\n\u003cp\u003eParent participation enables students to learn through first-hand experiences, to see and feel the emotions of parents and themselves, to challenge their beliefs and learn about interpersonal relationships [25]. Looking at Dee Fink\u0026rsquo;s taxonomy of significant learning [26] in light of our results, it becomes clear that learning through parent participation relates to two of the six dimensions: the human dimension (e.g., compassion and caring, self-reflection, integrity and honesty) and the dimension of caring (e.g., active listening, mutual understanding, respect for diversity). However, given that all six levels of Fink\u0026rsquo;s taxonomy of significant learning are important for educational programs [27], it is important to realize that parent participation should be implemented with care and a clear vision.\u003c/p\u003e\n\u003cp\u003eThis study is the first step in supporting curriculum developers with ideas about the type of learning activities and the relevance of conditions. The next step is to develop these ideas further in collaboration with all stakeholders to implement parent participation in a comprehensive and sustainable way.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e4.1 Practical implications\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParent participation in education can vary with the level of involvement, similar to client participation. According to the Towle taxonomy of patient involvement [16], suggestions and ideas on how to involve parents are found mainly at levels three and four, sharing experiences and direct teaching and/or evaluation. These are feasible but might be achievable only if parents can have a voice or an ally at higher levels in the organization.\u003c/p\u003e\n\u003cp\u003eThe conditions that stakeholders mentioned for sustainable parent participation can be summarized at the level of curriculum development (academic embedding, collaboration between parents and university staff) and at the level of the institution (recognition of the value, time for preparation, education and support for parents, financial compensation).\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e4.2 Strengths and limitations\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe strengths of this mixed-method exploration study were the participatory design and the integration of a case study, as well as in-depth interviews with a diverse group of stakeholders. This enabled us to ask stakeholders to reflect on a first trial, as well as to broaden their scope to further possibilities and gains.\u003c/p\u003e\n\u003cp\u003eAnother strength is that due to the COVID-19 pandemic, we interviewed stakeholders online, which gave more people the opportunity to participate in an interview. Additionally, the well-known frameworks that are frequently used in studies about patient participation were utilized and helpful for categorizing stakeholders\u0026rsquo; ideas in an organized way.\u003c/p\u003e\n\u003cp\u003eA limitation is the small number of students and clients participating in both studies. This limited our view of the student and client perspectives. However, clients are relevant stakeholders because parents\u0026apos; stories may be about them. Therefore, future research may focus even more on the client perspective. An additional limitation can be drawn from the fact that the case study was based on parent participation as teachers (level 3), which might have impacted parents\u0026rsquo; answers in the interview study. A third limitation is the limited number of men included in both studies. The perspectives of fathers and male students may differ from those of women and require further research. Despite the rich data that were collected, we have not performed a detailed thematic analysis. The pragmatic approach adopted meant that practical applicability was the main objective of this study. This could be seen as a limitation and might offer opportunities to ask about more personal experiences, viewpoints, and feelings in a future research project.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e4.3 Conclusion\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis study shows that parents of children with complex care needs can be involved in the education program, and that all stakeholder groups believe this approach is desirable and relevant - as long as participation makes learning meaningful. Listening to authentic stories contributes to students\u0026rsquo; motivation for their future profession and helps them understand how elements of their study can be relevant for later professional practice. Parents felt that their contributions were meaningful and satisfying since the students were interested and highly motivated to listen and learn from them. In general, the findings of this study are practical and can partly inform curriculum makers and university staff today; however, more research is needed to obtain more comprehensive ideas of \u0026ldquo;what\u0026rdquo; and \u0026ldquo;how\u0026rdquo; students should learn to create meaningful learning through parent participation\u0026rdquo;.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgments\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe thank all participants for their valuable contribution to this study.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eExploring the involvement of parents of children with complex care needs in higher education\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eFox J. Perspectives of experts-by-experience: An exploration of lived experience involvement in social work education. 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Operation homefront: Meeting clerkship competencies with home visits to families of children with special needs. Acad Pediatr. 2019;19(2):170-176. https://doi.org/10.1016/j.acap.2018.09.002 \u003c/li\u003e\n\u003cli\u003eDijk SW, Duijzer EJ, Wienold M. Role of active patient involvement in undergraduate medical education: A systematic review. BMJ Open. 2020;10:e037217. https://doi.org/10.1136/bmjopen-2020-037217 \u003c/li\u003e\n\u003cli\u003eEijkelboom C, Brouwers M, Frenkel J, et al. Twelve tips for patient involvement in health professions education. Patient Educ Couns. 2023;106:92\u0026ndash;97. https://doi.org/10.1016/j.pec.2022.09.016 \u003c/li\u003e\n\u003cli\u003eBrooker. Constructing the triangle of care: Power and professionalism in practitioner/parent relationships. Br J Educ Stud. 2010;58(2):181-196. https://doi.org/10.1080/00071001003752203 \u003c/li\u003e\n\u003cli\u003eDe Geeter KI, Poppes P, Vlaskamp C. 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Mac Keith Press. 2020. pp. 105-223. (Clinics in Developmental Medicine).\u003c/li\u003e\n\u003cli\u003eHaine-Schlagel R, Walsh NE. A review of parent participation engagement in child and family mental health treatment. Clin Child Fam Psychol Rev. 2015;18(2):133-150. https://dx.doi.org/10.1007%2Fs10567-015-0182-x \u003c/li\u003e\n\u003cli\u003eHatton K. A critical examination of the knowledge contribution service user and carer involvement brings to social work education. Soc Work Educ. 2017;36(2):154-171. https://doi.org/10.1080/02615479.2016.1254769 \u003c/li\u003e\n\u003cli\u003eGudeva LK, Dimova V, Daskalovska N, Trajkova F. Designing descriptors of learning outcomes for Higher Education qualification. Procedia-Social Behav Sci. 2012;46:1306-1311. https://doi-org/10.1016/j.sbspro.2012.05.292 \u003c/li\u003e\n\u003cli\u003eTowle A, Bainbridge L, Godolphin W, et al. Active patient involvement in the education of health professionals. Med Educ. 2010;44:64\u0026ndash;74. https://doi:10.1111/j.1365-2923.2009.03530.x \u003c/li\u003e\n\u003cli\u003eLindstr\u0026ouml;m C, \u0026Aring;man J, Norberg AL. Increased prevalence of burnout symptoms in parents of chronically ill children. Acta Paediatr. 2010;99(3):427-432. https://doi.org/10.1111/j.1651-2227.2009.01586.x \u003c/li\u003e\n\u003cli\u003ePatty NJS, van Meeteren KM, Willemen AM, Verdonk M, Mol MAE, Ketelaar M, Schuengel C. Understanding burnout among parents of children with complex care needs: A scoping review informed by a stakeholder consultation. 2023. https://psyarxiv.com/754yp/download?format=pdf \u003c/li\u003e\n\u003cli\u003eStringer ET. Action research. 4rd ed. Sage: Thousand Oaks; 2014.\u003c/li\u003e\n\u003cli\u003eEelderink M, Vervoort JM, van Laerhoven F. Using participatory action research to operationalize critical systems thinking in social-ecological systems. Ecol Soc. 2020;25(1). https://doi.org/10.5751/ES-11369-250116 \u003c/li\u003e\n\u003cli\u003eBrinkmann S. Qualitative Interviewing. Oxford: University Press; 2013.\u003c/li\u003e\n\u003cli\u003eAssarroudi A, Heshmati Nabavi F, Armat MR, Ebadi A, Vaismoradi M. Directed qualitative content analysis: the description and elaboration of its underpinning methods and data analysis process. J Res Nurs. 2018;23(1):42\u0026ndash;55. https://doi.org/10.1177/1744987117741667\u003c/li\u003e\n\u003cli\u003eFrank JR, Snell L, Sherbino J. CanMEDS: Physician Competency Framework. Ottawa: Royal Coll Physicians Surg Canada; 2015.\u003c/li\u003e\n\u003cli\u003eNederlandse vereniging van pedagogen en onderwijskundigen (NVO). De orthopedagoog als professional. Beroepscompetentieprofiel basis-orthopedagoog. [Dutch Soc Pedagogues Educ]. 2019. Accessed 15 Dec 2023. https://www.nvo.nl/kwaliteit/beroepscompetentieprofielen#beroepscompetentieprofielen-van-orthopedagogen \u003c/li\u003e\n\u003cli\u003eHyland T. The affective domain of education. In: Mindfulness and learning: Celebrating the affective dimension of education, 87-104. 2011. https://doi.org/10.1007/978-94-007-1911-8_7 \u003c/li\u003e\n\u003cli\u003eFink LD. Towards learning-centred education in colleges and universities. New Dir Teach Learn. 2021;7-16. https://doi.org/10.1002/tl.20447 \u003c/li\u003e\n\u003cli\u003eBranzetti J, Gisondi MA, Hopson LR, Regan L. Aiming beyond competent: The application of the taxonomy of significant learning to medical education. Teach Learn Med. 2019;31(4):466-478. https://doi.org/10.1080/10401334.2018.1561368 \u003c/li\u003e\n\u003cli\u003eMoseholm E, Fetters MD. Conceptual models to guide integration during analysis in convergent mixed methods studies. Methodol Innov. 2017;10:1\u0026ndash;11. https://doi-org.vu-nl.idm.oclc.org/10.1177/2059799117703118 \u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003e\u003cstrong\u003eTable 1.\u0026nbsp;\u003c/strong\u003e\u003cem\u003eTowle Taxonomy as described in Towle et al., 2010 [16]\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"624\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 568px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eDegree to which the patient is actively involved in the learning encounter\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 568px;\"\u003e\n \u003cp\u003ePaper-based or electronic case or scenario\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 568px;\"\u003e\n \u003cp\u003eStandardized or volunteer patient in a clinical setting\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 568px;\"\u003e\n \u003cp\u003ePatient shares his or her experience with students within a faculty-directed curriculum\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 568px;\"\u003e\n \u003cp\u003ePatient-teacher(s) are involved in teaching or evaluating students\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 568px;\"\u003e\n \u003cp\u003ePatient-teacher(s) as equal partners in student education, evaluation and curriculum development\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 568px;\"\u003e\n \u003cp\u003ePatient(s) involved at the institutional level in addition to sustained involvement as patient-teacher(s) in education, evaluation and curriculum development for students\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2\u0026nbsp;\u003c/strong\u003e\u003cem\u003eTopic List Interview Study\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eIntroduction\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eIntroduce yourself, goal of interview, consent for audio-recording\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCurrent situation\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eCould you tell me more about your current situation\\\u003c/p\u003e\n \u003cul\u003e\n \u003cli\u003eParents: your family\u003c/li\u003e\n \u003cli\u003eStaff: your work\u003c/li\u003e\n \u003cli\u003eStudents: your education program\u003c/li\u003e\n \u003cli\u003eClients: your care organization\u003c/li\u003e\n \u003cli\u003eProffessionals: your work\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDesirable situation\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eFrom your position, what should students learn during their bachelor program?\u003c/p\u003e\n \u003cp\u003eWhich stakeholders or target groups could play an active role in the education program?\u003c/p\u003e\n \u003cp\u003eDo you think parents of children with complex care needs could play an active role in the education program?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eParent participation in education\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eWhat could students learn from parents of children with complex care needs? (RQ1)\u003c/p\u003e\n \u003cp\u003eFrom your perspective, what type of participation could parents ideally have. What role could they play? (RQ2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePre-conditions (only for parents and staff)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eFrom your perspective, what are relevant pre-conditions for parental participation in the education program? (RQ3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eClosing\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eIs there more you want to add on this topic?\u003c/p\u003e\n \u003cp\u003eThank you and finalizing.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3.\u0026nbsp;\u003c/strong\u003e\u003cem\u003eParticipants of The Case Study\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"647\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eParticipant\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 86px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGender\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 391px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSpecific stakeholder group information\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003eParents\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 86px;\"\u003e\n \u003cp\u003efemale: 10\u003c/p\u003e\n \u003cp\u003emale: 3\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 391px;\"\u003e\n \u003cp\u003eType of disability of child:\u003c/p\u003e\n \u003cp\u003eATR-x syndrome: 4x\u003c/p\u003e\n \u003cp\u003eAutism and additional conditions: 2x\u003c/p\u003e\n \u003cp\u003eSevere intellectual disability: 2x\u003c/p\u003e\n \u003cp\u003eDown syndrome: 1x\u003c/p\u003e\n \u003cp\u003eMeCP2- related developmental disorder: 1x\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eCerebral Palsy and additional conditions: 1x\u003c/p\u003e\n \u003cp\u003eCDKL 5 gene mutation: 1x\u003c/p\u003e\n \u003cp\u003ePhysical disability with mild intellectual disability: 1x\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003eTeachers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 86px;\"\u003e\n \u003cp\u003efemale: 3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 391px;\"\u003e\n \u003cp\u003eYears of teaching experience:\u003c/p\u003e\n \u003cp\u003e1 - 1.5 years\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003eStudents\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e25\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 86px;\"\u003e\n \u003cp\u003efemale: 25\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 391px;\"\u003e\n \u003cp\u003eMean age:\u003c/p\u003e\n \u003cp\u003e19.4 years\u003c/p\u003e\n \u003cp\u003eYear of education: Bachelor year 1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 4.\u0026nbsp;\u003c/strong\u003e\u003cem\u003eParticipants of the Interview Study\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"99%\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eParticipant\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGender\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 367px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSpecific stakeholder group information\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003eParents\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003efemale: 11\u003c/p\u003e\n \u003cp\u003emale: 3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 367px;\"\u003e\n \u003cp\u003eType of disability of child:\u003c/p\u003e\n \u003cp\u003eCDK-5\u003c/p\u003e\n \u003cp\u003eGene defect\u003c/p\u003e\n \u003cp\u003eATRX-syndrome\u003c/p\u003e\n \u003cp\u003eRett-syndrome\u003c/p\u003e\n \u003cp\u003eDown syndrome\u003c/p\u003e\n \u003cp\u003eDisorder on the autism spectrum\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eCerebral palsy\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eSevere physical disability (often in combination with intellectual disability)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003eUniversity staff\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003efemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 367px;\"\u003e\n \u003cp\u003e1 researcher with the expertise of people with \u0026nbsp; \u0026nbsp; intellectual disabilities\u003c/p\u003e\n \u003cp\u003e1 teacher involved in clinical and professional courses\u003c/p\u003e\n \u003cp\u003e1 program director, Pedagogical Sciences\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003eStudents\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003efemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 367px;\"\u003e\n \u003cp\u003eMaster students\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003eClients \u0026gt; 16 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003efemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 367px;\"\u003e\n \u003cp\u003eExperienced experts\u003c/p\u003e\n \u003cp\u003eType of disability: Cerebral palsy\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003eProfessionals\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003efemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 367px;\"\u003e\n \u003cp\u003ePedagogue working in an organization for people with children with complex care needs, with an expertise on practice based \u0026nbsp; \u0026nbsp; learning\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 5\u0026nbsp;\u003c/strong\u003e\u003cem\u003eMeans of Parent\u0026nbsp;\u003c/em\u003eparticipation\u003cem\u003e\u0026nbsp;Sorted by Level of Involvement as Defined in the Towle Taxonomy\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"863\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 178px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTowle taxonomy of patient involvement\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 685px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSummarized and synthesized stakeholder ideas\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 178px;\"\u003e\n \u003cp\u003eDegree to which patient is actively involved in learning encounter\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003eIdeas put forward by parents and people with CNN \u0026gt;16 years\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e(\u003cem\u003en\u003c/em\u003e = 16)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003eIdeas put forward by university staff and care professionals\u003c/p\u003e\n \u003cp\u003e(\u003cem\u003en\u003c/em\u003e = 4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003eIdeas put forward by students\u003c/p\u003e\n \u003cp\u003e(\u003cem\u003en\u003c/em\u003e = 3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 178px;\"\u003e\n \u003cp\u003e1. Paper based or electronic case/scenario\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003e5 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003e0 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003e3 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003eGeneral documentaries\u003c/p\u003e\n \u003cp\u003eBlogs, podcasts\u003c/p\u003e\n \u003cp\u003eInterviews on paper\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003eNone\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003eWatching/discussing videos/documentaries\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 178px;\"\u003e\n \u003cp\u003e2. Standardized or volunteer in a clinical setting\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003e2 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003e1 suggestion\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003e0 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003eRole play\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003eObservation of standardized situations\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003eNone\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 178px;\"\u003e\n \u003cp\u003e3. Share experience within a faculty directed curriculum\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003e23 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003e2 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003e10 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003eVideos/vlogs of home situations\u003c/p\u003e\n \u003cp\u003eReceiving home visits\u003c/p\u003e\n \u003cp\u003eStudent accompanied visit to a professional\u003c/p\u003e\n \u003cp\u003eGiving guest lectures\u003c/p\u003e\n \u003cp\u003eInformative conversations with students (e.g. online chat exchange, speed dating)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003eHome visit observations with reflection in class\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003eGuest lectures by parents/siblings\u003c/p\u003e\n \u003cp\u003eInformative conversations with parents/children/professionals\u003c/p\u003e\n \u003cp\u003eHome visits (observational)\u003c/p\u003e\n \u003cp\u003eObservation of specific therapy situations with parents and professionals\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 178px;\"\u003e\n \u003cp\u003e4. Teaching or evaluating students\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003e4 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003e1 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003e1 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003ePracticing interview skills with students (parent feedback)\u003c/p\u003e\n \u003cp\u003eParent feedback after home visits with specific tasks\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003ePerformance of specific tasks by students during home visits\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003eHome visits followed by evaluation/ reflection with parents\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 178px;\"\u003e\n \u003cp\u003e5. Equal partner in student education, evaluation and curriculum development\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003e6 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003e3 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003e0 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003eInput curriculum/ specific practicals (e.g. content, material and evaluation)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003eInput curriculum/ specific practicals (e.g. creation of tasks with specific learning goals)\u003c/p\u003e\n \u003cp\u003e\u0026lsquo;Pool\u0026rsquo; of specifically trained parents\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003eNone\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 178px;\"\u003e\n \u003cp\u003e6. Involvement at the institutional level\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003e1 suggestion\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003e0 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003e0 suggestions\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 209px;\"\u003e\n \u003cp\u003eParticipation in curriculum or evaluation committee\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 204px;\"\u003e\n \u003cp\u003eNone\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 272px;\"\u003e\n \u003cp\u003eNone\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"discover-education","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"diedu","sideBox":"Learn more about [Discover Education](https://www.springer.com/journal/44217)","snPcode":"44217","submissionUrl":"https://submission.nature.com/new-submission/44217/3","title":"Discover Education","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Discover Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"patient participation, parent involvement, active learning, health profession education, complex care needs","lastPublishedDoi":"10.21203/rs.3.rs-4032553/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4032553/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e: Although collaboration between care professionals and parents of children with complex care needs is becoming increasingly important, little is known about how students can be prepared for collaboration with these parents within the academic curriculum. The current study examined participation of parents of children with complex care needs in the curriculum and focused on three questions: 1) How canthese parents be involved? 2) What(could) students learn from it? and 3) Whatimportant conditions are needed for sustainable participation?\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethod\u003c/strong\u003e: An explorative mixed-methods study based on the principles of participatory action research was performed in the Bachelor Pedagogical Sciences. In total, 64 participants (parents, students, academic staff, professionals, and clients) were involved in a case study or interview study. Questionnaire and interview data were coded using the Towle taxonomy for patient involvement and the CanMEDS competency framework.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: All stakeholders agreed that parents should and could be more involved in the education program. 1) Parents could have therole ofeducator at different levels. 2) By listening to parents’ authentic stories, students can develop greater motivation andcompetencies in the roles of \u003cem\u003eprofessional, communicator, \u003c/em\u003eand\u003cem\u003eclinical expert\u003c/em\u003e. 3) In additionto time and (financial) compensation, relevant conditions were flexibility, collaboration, and training for parents.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions\u003c/strong\u003e: Parents of children with complex care needs are willing to participate in higher education. Their role as educational partners can support the development of relevant competences. For long-term success of parent participation, conditions at both the organizational and practical level should be supported.\u003c/p\u003e","manuscriptTitle":"Parents of children with complex care needs as educational partners in higher education? An explorative participatory mixed-methods study.","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-04-04 11:21:41","doi":"10.21203/rs.3.rs-4032553/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-04-09T06:51:53+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-11-28T17:21:37+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"208740291429435447709116437981448027824","date":"2024-11-21T10:03:26+00:00","index":"hide","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-07-05T10:15:07+00:00","index":"","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-05-31T04:17:25+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-05-31T04:16:49+00:00","index":"","fulltext":""},{"type":"submitted","content":"Discover Education","date":"2024-05-24T13:36:21+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"discover-education","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"diedu","sideBox":"Learn more about [Discover Education](https://www.springer.com/journal/44217)","snPcode":"44217","submissionUrl":"https://submission.nature.com/new-submission/44217/3","title":"Discover Education","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Discover Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"d5c72c44-3a33-42d7-8507-78b8abf72ddc","owner":[],"postedDate":"April 4th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-05-05T04:23:18+00:00","versionOfRecord":[],"versionCreatedAt":"2025-04-04 11:21:41","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4032553","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4032553","identity":"rs-4032553","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}