Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self‐management of their chronic kidney disease

Abstract Introduction The responsibility for managing a long‐term condition (LTC) such as chronic kidney disease (CKD) typically transfers from parent to child, as children become older. However, children can find it challenging to become independent at managing their LTC, and evidence for how healthcare professionals (HCPs) support transfer of responsibility is limited. This study aimed to explore how young people with CKD assume responsibility for managing their condition and the HCP's role during this process. Methods Sampling, qualitative data collection and analysis were guided by a constructivist grounded theory approach. Individual and dyadic interviews, and focus groups, were conducted with 16 young people aged 13–17 years with CKD, 13 parents and 20 HCPs. Findings A grounded theory, shifting responsibilities, was developed that provides new insights into how young people's, parents' and HCPs' constructions of the transfer of responsibility differed. These diverse constructions contributed to multiple uncertainties around the role of HCPs, when the process started and was completed and whether the endpoint of the process was young people's self‐management or young person–parent shared management. Conclusion Families would benefit from HCP support over a longer timeframe that integrates assuming self‐management responsibility with gaining independence in other areas of their lives and focuses on young people ‘doing’ self‐management. 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
Over the last 50 years, there has been a fourfold increase in the number of families who have a child with a long-term condition (LTC). 1 As LTCs have no cure, they are managed by medication and/ or treatment/therapies; consequently, self-management is a significant component of healthcare. 2 Self-management has been defined in different ways, but is usually viewed as 'the individual's ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition'. 3(p.178) Although children with LTCs are usually dependent on, or share management with their parents, they are expected to assume responsibility for self-management as they mature. 4 Different terms, including, 'shared management' and 'responsibility sharing', are used when describing the transition to self-management, and emphasize the role played by others, including parents and healthcare professionals (HCPs), in supporting the child to assume responsibility. 5 In the United Kingdom (UK), healthcare policy focuses on the transition between child and adult health services as the key period for children to assume self-management responsibility. 6 However, recently developed guidelines that recommend self-management tasks for children aged 0-20 years with LTCs suggest that children are on a trajectory of developing self-management skills from early childhood. 7 This highlights the uncertainty around the optimum time for supporting children to begin assuming responsibility for managing their LTC.
A recent integrative review of the parent-to-child transfer of LTC self-management responsibility found that there was limited evidence around HCPs' roles and ambivalence around what supported children to assume responsibility, and parents to relinquish control. 8 Where the literature did explore HCPs' roles, this was predominantly from the perspectives of children and parents, with a noticeable absence of HCPs' perspectives. Due to this lack of clarity, the review suggested a need for greater understanding of the transfer of responsibility from the perspective of all key stakeholders, including children, parents and HCPs.
Existing research exploring the transfer of responsibility has tended to focus on the most prevalent childhood LTCs such as diabetes and asthma. 8 Due to the uniqueness of treatment regimens, a condition-specific approach is needed when studying how children assume self-management responsibility. 9 Therefore, this study focused on an under-researched LTC, chronic kidney disease (CKD).
CKD is a progressive LTC that can lead to end-stage kidney disease, which is fatal without renal replacement therapies such as dialysis or kidney transplantation. 10 Based on the glomerular filtration rate (i.e., the rate at which kidneys filter waste products), CKD can be classified by Stages 1-5. The higher the stage, the more 'severe' the CKD and therefore the more complex the treatment regimen required. 11 In the UK, children with CKD stages 3-5 are treated by specialist renal multidisciplinary teams (MDTs). 12 Although some self-management tasks are common across all LTCs, children with CKD have conditionspecific challenges including renal diets, fluid restrictions or targets, and dialysis, which can be either in-centre or at home. Many aspects of the treatment regimen are delivered outside of hospital, and as a result, children and parents carry out the majority of management tasks, including activities that are complex and demanding. 10 Supporting children with CKD to assume responsibility for selfmanagement is critical due to the progressive nature of the condition, and because difficulties engaging in self-management can lead to renal failure. 13 However, fewer than 20% of children on dialysis were perceived by HCPs to function autonomously at transfer to adult services, 14 and higher rates of organ failure are evident among adolescents, compared to young children and adults living with a kidney transplant. 15 Therefore, for children with CKD, competent self-management is vital to avoid poor clinical outcomes, and HCPs and parents need effective ways to help children learn selfmanagement as they move towards adulthood. 16 The aim of this study was to address this knowledge gap by (1) exploring young peoples', parents' and HCPs' views on the parent-to-child transfer of self-management responsibility for CKD stages 3-5 and (2) develop a theory to explain the processes that occur during the transfer of responsibility.

| METHODS
Charmaz's 17 constructivist approach to grounded theory was used.
The objective of grounded theory is to construct a theory that is 'grounded' in the data, and explains a social process. 18 Constructivist grounded theory acknowledges that theory developed is based on co-construction, and the researchers' interests and experiences, their relationships with participants and the research context, all influence what is defined as data. 17

| Sampling and recruitment
Purposive sampling was initially used to achieve maximum variation in terms of young people's age, ethnicity, CKD stage, treatment type and self-management needs. HCPs were also purposively sampled based on their discipline. As the study progressed, theoretical sampling was used to generate data to support the construction of robust categories. 17 Within time restrictions, sampling continued until all the categories were theoretically saturated.
Participants were recruited from two UK children's kidney units.
The inclusion criteria were as follows: (1) young people aged 13-18 years with CKD stages 3-5 who were required to undertake selfmanagement, (2) parents/carers of each young person (YP) and (3) HCPs from the respective renal MDT. Potential participants were identified by two local clinicians who worked within each renal MDT.
These clinicians explained the study and obtained verbal consent for RN to provide potential participants with written information. All participants provided written consent/assent. A total of 49 participants participated in the study. The sample comprised of 16 young people, 13 parents (11 mothers, 1 step-father, 1 carer) and 20 HCPs (five renal paediatricians, four nurses, four social workers, three clinical psychologists, three play workers, one dietitian). Table 1 provides information about the participating young people.

| Data collection
Individual interviews are primarily used to generate data in grounded theory studies; however, focus groups are increasingly being used on their own and in combination with interviews. 19 Both interviews (individual and dyadic) and focus groups were used to generate data in this study. Dyadic interviews are useful in examining how family members co-construct an understanding of daily life. 20 Young people and their parents were offered the opportunity to be interviewed together or separately. Focus groups, which generate data through group interaction, were undertaken with HCPs as they had pre- people to assume, and parents to relinquish, this responsibility. As the study progressed, topic guides were revised as part of theoretical sampling.
A total of 21 semi-structured individual interviews were conducted with young people (n = 7), parents (n = 4) and HCPs (n = 10) lasting between 24 and 78 min. Dyadic interviews, lasting between 46 and 93 min, were conducted with nine young person-parent dyads. Thirteen HCPs participated in two focus groups. RN collected all data, although one focus group was cofacilitated by V. S. as it included a larger number of participants.
With participants' consent, interviews and focus groups were audiorecorded, transcribed verbatim and anonymized.

| Data analysis
Analysis was an iterative, inductive process, which meant that data collection and analysis were conducted concurrently. Initial and focused coding was used alongside constant comparison to identify analytical, theoretical categories. 17 Memo-writing and diagramming were critical in establishing each category's properties, visualizing connections between the categories and in theory construction. 22 An additional approach 23 was used to examine how the context of the discussion shaped data generation in the dyadic interviews and focus groups. RN led on analysis, with authors meeting regularly to discuss code/category development and data interpretation. NVivo Plus Version 11 was used to support data analysis and management.

| Rigour
Denzin and Lincoln's 24 criteria of credibility, transferability, dependability and confirmability were used to evaluate the rigour of this study. Recruiting from two sites and using both purposive and theoretical sampling achieved variation in the sample and ensured comprehensiveness and credibility of the data generated. Using

| Ethical issues
Approval was obtained from the UK Health Research Authority and their parents provided consent for their child's participation.

| FINDINGS
A grounded theory, shifting responsibilities, was constructed from the narratives. The theory is comprised of a core category (shifting responsibilities) and two interrelated subcategories (developing independence and making changes). Shifting responsibilities explains the main process that occurs during the parent-to-child transfer of self-

| Shifting responsibilities
Responsibilities moved forwards and backwards along a continuum between parental-led management and young person-led management ( Figure 1). All the participating young people, regardless of the age when they received their diagnosis, initially experienced selfmanagement as being parent-led. Over time, management became increasingly shared and responsibility shifted as the young person took more of the lead in managing their condition. finished. Some parents started to transfer self-management responsibility when their child was relatively young in age, especially if they had been diagnosed with CKD at birth or early childhood. In these situations, many parents appeared to take the 'long view'; they were aware that, in the future, their child would need to develop independence in managing their condition and considered this to be a process occurring over a long period. Both young people and their parents described how they/their child had started to become more involved in self-management activities while at primary school.
In contrast, the timing of HCP involvement tended to occur later, often after the transfer process had already started, and management responsibility had started to shift. HCPs appeared to view young people assuming self-management responsibility as part of the transition between child and adult services: We owe it to the kids because we owe it to transition. We  This quotation also illustrates how, despite their child reaching adulthood and developing self-management independence, many parents perceived that their role as a parent was ongoing. This links to the earlier discussion around when the transfer process ends, and parents' confidence in whether their child would ever be 'fully'

| Developing independence
responsible for managing their condition.
HCPs' knowledge and understanding of child and adolescent development shaped their narratives of working with young people.
They recognized that young people were acquiring independence in everyday activities as they became older and described how they discussed these 'normal' processes with families: We talk about circles of responsibility. When they're a baby, the responsibility all lies with mum and dad. As you get bigger you take on more. You get yourself dressed, you feed yourself, and the logical progression is to take more responsibility for your medicines. (HCP8) Despite this recognition, most HCPs viewed self-management as separate to other activities that young people engaged in. By decontextualizing self-management, they rarely appeared to support young people with integrating CKD management with daily activities and routines, including how to manage situations when valued activities, such as socializing with friends, and self-management were in conflict. These tensions around promoting independence while keeping their child safe impacted on parents' motivation to transfer responsibility.
Alongside young people's motivation to assume responsibility, this influenced the initiation and continuation of shifting responsibilities.

| Making changes
Together with developing independence, the subcategory making changes influenced the process of shifting responsibilities (Figure 1).
Young people, parents and HCPs made changes to their actions and interactions to initiate and sustain the transfer of responsibility.
Alongside the ambiguity around when the transfer process started, there was also ambiguity around how to initiate this process, and whether to adopt a 'doing' or 'knowing' approach. Parents' decisions to start transferring responsibility were often based on practicalities, which meant that their initial focus was on their child's ability to undertake a self-management task safely on their own: Despite the perceived benefits, young people's and parents' connections with others with CKD appeared to be limited. Therefore, young people and parents welcomed increased opportunities to meet peers to provide different and additional support to that offered by HCPs.
Following the initiation of shifting responsibilities, the transfer process could be disrupted if young people disengaged from assuming self-management responsibility. When disruption occurred, trust was lost. One young person, who had experienced a rejection episode of her transplanted kidney due to limited engagement in self- MDT. At times, this would reinitiate the transfer of responsibility; however, for some families where trust had been lost, it was unclear whether the transfer process would recommence or whether the process had come to an end.

| DISCUSSION
This study explored the parent-to-child transfer of CKD selfmanagement responsibility. An emergent theory of shifting responsibilities was developed that represents young people's, parents' and This finding is significant and has implications for practice.
In parents' constructions of their parental role, they were responsible for supporting their child to develop independence; therefore, most parents initiated the transfer process. This finding supports previous research that suggested that parents either proactively started transferring responsibility for self-management tasks 26 or initiated the process in response to external events, such as their child starting secondary school. 27  Finally, the findings of this study suggested that there were conflicting understandings around the endpoint of the transfer of responsibility. Young people tended to aim for complete independence in managing their condition. 37,43 Research in type 1 diabetes and cystic fibrosis has conceptualized the transfer process as complete when a young person is independent in self-management, and parents have no involvement. 26,44 In contrast, parents in this study were more ambivalent about the outcome of the transfer process and perceived that they would continue to have some involvement in managing their child's CKD, despite their child having assumed responsibility. Although parent-child shared management tends to be viewed as a 'bridge to full independence', 45 some parents perceived shared management with their child as the endpoint, rather than a transitional stage in the process. 46 As none of the young people in this current study were independently managing their CKD, research with young adults is needed, to extend understanding of how the move into adult services impacts on the transfer of responsibility, the role of parents and the outcome of the transfer process.

| Strengths and limitations of the study
The inclusion of HCPs, alongside young people and parents, and the combination of individual/dyadic interviews and focus groups to generate data assisted with gaining a deeper understanding of the transfer of responsibility. Although dyadic interviews can raise particular ethical and practical challenges, the interactions between young people and parents generated rich data. This suggests that using this method may have facilitated young people's voices 'by providing them with a supportive, comfortable context within which to take part in research'. 47(p.662) Although a diverse sample participated in the study, reliance on clinicians in the two renal teams for approaching potential study participants may have introduced intentional or unintentional selection bias. Study findings were based on the researcher's analysis and interpretation of young people's, parents' and HCPs' accounts. However, reflexivity and regular discussion with the research team and study advisory group, which included parents who had a child with CKD, ensured rigour.

| CONCLUSION
The is the first study to explore the parent-to-child transfer of selfmanagement responsibility for CKD. New knowledge has been generated including a grounded theory, shifting responsibilities, that

SUPPORTING INFORMATION
Additional supporting information can be found online in the Supporting Information section at the end of this article.