Supporting the parent‐to‐child transfer of self‐management responsibility for chronic kidney disease: A qualitative study

Abstract Introduction As children with long‐term conditions (LTCs) mature, they are usually expected to assume responsibility from their parents for self‐management of their condition. Little is known about what supports families with this handover of responsibility, including the role of healthcare professionals (HCPs). This study aimed to explore what supports young people with chronic kidney disease (CKD) to assume self‐management responsibility and parents to relinquish control. Methods A qualitative study, using a grounded theory approach was conducted. Individual and dyadic interviews and focus groups were carried out with 16 young people aged 13–17 years old with CKD, 13 parents, and 20 HCPs. Participants were recruited from two UK children's renal units. Findings Building and maintaining trust, fostering positivity, learning from mistakes, forming partnerships and individualized support, facilitated the transfer of self‐management responsibility. However, HCPs' focus on developing partnerships with young people meant some parents felt excluded, highlighting uncertainty around whether support should be child‐ or family‐centred. Although tailored support was identified as critical, aspects of local service provision appeared to impact on HCPs' capacity to implement individualized approaches. Conclusion This study has identified what supports the handover of responsibility, and, importantly, HCPs' current, and potential role in helping young people to assume responsibility for managing their LTC. Further research is needed to explore how HCPs' involvement balances child‐ and family‐centred care, and how HCPs can adopt personalized, strengths‐based approaches to help ensure the support that families receive is tailored to their individual needs. Patient or Public Contribution Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery.


| INTRODUCTION
Self-management has become an increasingly important aspect of health care across all age groups, due to the growing prevalence of long-term conditions (LTCs). 1 Although definitions of selfmanagement vary, Lorig and Holman 2 suggest it involves medical, role and emotional management to enable the individual 'to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition' (p. 178). As children are usually dependent on, or share condition management with their parents, alternative terms such as 'supported self-management' and 'responsibility sharing' have been used in childhood LTCs, 3,4 As children mature, they are expected to assume responsibility from their parents for self-management of their LTC. 5 However, this expectation has been challenged, and studies suggest that for some families, shared parent-child management is preferable to the young person managing their LTC independently. 6,7 Healthcare policy and research focuses on adolescence and the transition between child and adult services as the main developmental phase to acquiring self-management skills. 8,9 Consequently, healthcare professionals (HCPs) tend to view the assumption of self-management responsibility as a process that starts when the young person is around 13 years old and ends with the transfer to adult services. 10 Studies suggest, however, that families can start this process at an earlier developmental stage, 6,11,12 and some guidelines recommend that HCP support to develop self-management skills should start in early childhood. 4 This uncertainty around the optimal time for children to assume responsibility is compounded by studies highlighting adolescents' difficulties engaging in self-management, resulting in adverse consequences for their health. 13 Additionally, the conflation between children's age and competency and the tendency of HCPs to view children as a homogenous group, 14,15 underlines the need for individualized support with the transfer of responsibility.
An integrative review that explored the parent-to-child transfer of self-management responsibility found that this transfer was a complex, individualized process. 16 The review identified how children and parents adopted various strategies to facilitate the transfer of Research around the transfer of self-management responsibility has mostly focused on diabetes and asthma, two of the most prevalent childhood LTCs. 16,17 As LTCs differ in severity and selfmanagement demands can vary, a condition-specific approach can be useful when studying the parent-to-child transfer of responsibility. 18 Therefore, this study focused on chronic kidney disease (CKD), a complex LTC related to irreversible kidney damage, with a wide range of causes and complications. 19 Children with CKD can be classified by stages 1-5, based on the rate at which the kidneys filter waste products; stage 5 indicates end-stage kidney disease, which means renal replacement therapies, such as dialysis or kidney transplantation, are needed. 20 Although CKD shares some self-management tasks with other LTCs, condition-specific demands include renal diets, fluid restrictions or targets and dialysis, either carried out in a hospital or home setting. In the United Kingdom, 13 specialist renal centres manage the care of children with CKD stages 3-5. 21 As the majority of CKD management tasks are undertaken outside of the renal centre (e.g., in the child's home or school), and because CKD is a lifelong condition, child and family assumption of management responsibility is critical.
Studies suggest children, especially during adolescence, experience difficulties engaging in CKD self-management. 22 Adolescents have higher levels of kidney transplant loss compared to younger children and adults 23 and less than 20% of adolescents on dialysis were perceived by HCPs to have assumed self-management responsibility at transfer to adult care. 24 While the literature suggests the parent-to-child transfer of self-management responsibility is an important aspect of children's development, there is limited research on this transfer process involving children with CKD, and, crucially, how the process can be supported. Therefore, this study aimed to address this gap by exploring what supports young people with CKD to assume self-management responsibility and parents to relinquish control.

| METHOD
The study used a constructivist grounded theory methodology. 25 Grounded theory is useful in exploratory research, as it aims to construct a theory that offers in-depth understanding and explains the phenomenon being studied. 26

| Sampling and recruitment
Participants were recruited from two UK children's kidney units.
Purposive sampling was initially used as the aim was to achieve maximum variation in relation to (1) young people aged 13-18 years old with CKD stages 3-5 and their parents/carers, and (2) HCPs from a range of disciplines in the renal multidisciplinary team. As the study progressed, theoretical sampling was used to sample young people with CKD stages 3-4, to generate data to elaborate and refine the emerging categories. One clinician from each of the kidney units identified potential participants and gained consent for R. N. to provide them with study information. A total of 49 participants took part in the study comprising 16 young people (Table 1), 13 parent/ carers (11 mothers, 1 step-father, 1 carer) and 20 HCPs (5 renal paediatricians, 4 nurses, 4 social workers, 3 clinical psychologists, 3 play workers, 1 dietitian).

| Data collection
Semi-structured interviews and focus groups were conducted to generate data. Young people and parents were offered the opportunity to be interviewed together or separately, and HCPs participated in either individual interviews or focus groups (Table 2). R. N. conducted all data collection, although the larger focus group (A) was co-facilitated by V. S. Interviews and focus groups took place in person in the family home or hospital setting, or by telephone and were guided by a topic guide. As part of theoretical sampling, topic guides were revised as the study progressed (Supporting Information: 1). Interviews and focus groups were digitally recorded and transcribed verbatim. To address some of the methodological and ethical issues of conducting research with children, task-based methods were used to generate data. 27 For example, in later interviews, participants were asked to consider the suggestions generated during earlier interviews around what supported the transfer of responsibility. Each individual suggestion was written on a piece of card, which was handed to participants, with the request that they consider each suggestion in turn.

| Data analysis
Data collection and analysis were conducted concurrently, using an iterative, inductive process. Initial codes were developed by line-by-line coding, with the aim of identifying actions and processes in the data. Focused coding, in conjunction with constant comparison, involved evaluating the initial codes to identify analytical, and theoretical categories. 25 A supplementary approach was used to analyse how interaction contributed to data generation in the paired interviews and focus groups. 28 NVivo11 was used to code and manage data. To ensure trustworthiness and credibility, reflexivity and regular discussion between authors were incorporated into the analytic process.

| Ethical issues
Participants were provided with age/developmentally appropriate information, and all provided informed assent/consent.

| RESULTS
A grounded theory, shifting responsibilities, was constructed from the data, consisting of a core category (shifting responsibilities) and two connected subcategories (developing independence and making changes). Further details about the grounded theory, core category and subcategories have been reported previously. 12 This paper focuses on a specific aspect of the second subcategory, making changes, to explain how young people's, parents' and HCPs' adjustments to their behaviour and communication supported the parent-to-child transfer of self-management responsibility. This included behaviour and communication that: built and maintained trust; formed partnerships; fostered positivity; supported learning from mistakes, and was responsive to young people's and parents' individual preferences and needs ( Figure 1). A gradual transfer, developing a routine, and connecting with others with CKD were also perceived to support the transfer process and have been described Approaches used to support young people to trust themselves and develop self-confidence, included HCPs and parents acknowledging when young people were managing their condition. This will be discussed in more detail in Section 3.3, fostering positivity.

| Forming partnerships
Partnerships between the young person, their parents and HCPs were perceived to support the transfer of self-management. Young people and parents described how 'teamwork', which included undertaking self-management activities together, supported young people to become increasingly involved in managing their CKD. HCPs adopted a range of approaches to encourage partnership including directing communication primarily at young people rather than parents; exploring young people's concerns and their motivation to assume responsibility; joint goal-setting; findings solutions together; acting as an advocate for the young person and helping young people to negotiate with their parents around the transfer of responsibility.
Young people appeared to value being treated as an equal; they described how interactions with HCPs that encouraged partnership, supported their assumption of responsibility: It's a two-way thing. HCPs around how much parents should be included and whether they were a barrier or facilitator to young people taking responsibility for condition management. The few young people who had attended appointments on their own appreciated having the opportunity to focus on issues important to them and talk more openly with HCPs, compared to when their parents were present. Parents, however, appeared more ambivalent about HCPs' decisions to include or exclude them from consultations; while they seemed to accept that HCPs forming a partnership with their child was a necessary stage in their child assuming responsibility, they also struggled with relinquishing control. Some HCPs emphasized the need to partner with the young person-parent dyad and perceived parents' involvement was critical to supporting young people to assume responsibility: It does need to be in tandem because they are closely yesterday. I try to look at the positive stuff, she could be a lot worse than what she is, behaviour wise, but it is a concern to me. (Parent7, 16-year-old girl) HCPs' accounts suggested they were aware of the need to acknowledge a young person's strengths. However, there was a sense this rarely happened, as appointments tended to focus on problems, including the young person's difficulties with assuming responsibility: Sometimes patients do nine tasks out of ten really well, but the focus in clinic will be on the one they're not doing, which is disheartening on the young person, because they probably really tried, and it's the one thing that they've not managed to stay on top of.

| Supporting learning from mistakes
When young people had difficulties with assuming self-management responsibility, learning from mistakes was perceived to be helpful. Although parents were aware of the potential risks of their child making mistakes with self-management, they accepted making mistakes was 'normal' and could provide opportunities for their child to learn: I'd tell parents with teenage children, when they make mistakes, let them see. Let them understand that sometimes they will make mistakes. Don't teach them there's no mistake, no, then you make them so rigid, let them be free with you. Tell them it's a mistake and this is the repercussion, so they know. (Parent3,

15-year-old girl)
As this extract suggests, acknowledging that young people would make self-management mistakes could potentially encourage young people to be 'free' or honest with their parents when they were struggling with self-management. HCPs accounts also indicated how learning from mistakes could facilitate the transfer of responsibility.
Some HCPs described discussing with families how mistakes could provide opportunities for young people to develop an understanding of the consequences of their self-management decisions: Being a teenager is about making mistakes, it's learning from your mistakes. But we don't want them to make mistakes that cause them harm … I talk to the family, I say making mistakes is the learning process, let them make mistakes safely, not letting them make any mistakes is not safe. (HCP8) However, as this quotation highlights, the emphasis was on making mistakes 'safely' due to the awareness that some self-management mistakes could have a significant impact on the young person's health. Although HCPs believed support needed to be individualized, national and local transition guidance around young people moving from paediatric to adult services, underpinned service provision.

| Individualizing support
Consequently, HCP involvement in the transfer of responsibility tended to start when young people were around 13 years old and finished when they transferred to adult services. Some HCPs accounts revealed their frustration that the young person's chronological age, rather than their ability to self-manage, determined when they moved to adult services: HCP8: We are driven by age … that drives when we do transition rather than the patient.

| DISCUSSION
Previous studies have explored the parent-to-child transfer of selfmanagement responsibility, but little is known about what support young people and parents' need as responsibilities shift. 16  Some young people in this study believed they needed to be able to trust themselves to assume self-management responsibility. This suggestion that young people with CKD benefit from developing confidence and belief in their own ability aligns with the concept of self-efficacy. 34 Although the literature proposes that enhancing selfefficacy can facilitate young people assuming responsibility, 18,35,36 there is limited empirical research to support this. Colver et al. 9 suggest HCPs should encourage self-efficacy and recommend further research 'to identify the most effective and efficient ways to promote young people's knowledge and confidence in the management of their LTC' (p. 77). By identifying approaches that can support young people's belief in their self-management ability, such as fostering positivity and connecting with others with CKD, 12  extend the debate around whether HCP involvement should be childor family-centred. 41 Although it has been recommended that triadic collaboration is fostered between young people, parents and HCPs during the transfer of responsibility, 9,42

| Strengths and limitations
Having PPI to advise on the design and conduct of this study was a major strength and impacted on the quality and relevance of its findings. An equal focus on HCPs' perspectives, alongside those of young people and parents, assisted with gaining an in-depth and