Parental Involvement in the Transition from Paediatric to Adult Care for Youth with Chronic Illness: A Scoping Review of the North American Literature

With medical advancements and improvements in medical technology, an increasing number of children with chronic conditions survive into adulthood. There is accordant growing interest toward supporting adolescents throughout the transition from paediatric to adult care. However, there is currently a paucity of research focusing on the role that these patients' parents should play during and after the transition to adult care and if maintained parental involvement is beneficial during this transition within a North American context. Accordingly, this scoping review utilized Arksey and O'Malley's five-step framework to consider parental roles during chronically ill children's transition to adult care. APA PsycInfo, CINAHL, EMBASE, MEDLINE, ProQuest, and Scopus were searched alongside advanced Google searches. Thematic content analysis was conducted on 30 articles meeting the following inclusion criteria: (1) published in English between 2010 and 2022, (2) conducted in Canada or the United States, (3) considered adolescents with chronic conditions transitioning to adult care, (4) family being noted in the title or abstract, and (5) patient populations of study not being defined by delays in cognitive development, nor mental illness. Three themes emerged from the literature: the impacts of maintaining parental involvement during transition to adult care for patients, parents experiencing feeling loss of stability and support surrounding the transition of their child's care, and significant nonmedical life events occurring for youths at the time of transition of care. Parents assuming supportive roles which change alongside their maturing child's needs were reported as being beneficial to young peoples' transition processes, while parents who hover over or micromanage their children during this time were found to hinder successful transitions. Ultimately, the majority of reviewed articles emphasized maintained parental involvement as having a net positive impact on adolescents' transitions to adult care. As such, practice and policies should be structured to engage parents throughout the transition process to best support their chronically ill children during this time of change.

To assess whether: 1) Young adults (18-25 years) with Type 1 diabetes who have high-quality relationships with mothers, have greater perceptions of patient centred care with their physicians 2) PCC is or is not associated with better adherence and glycemic control through diabetes related self efficacy.

Prospective cohort study 247 patients
Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.
Parental involvement during and after transition influencing youths' adherence to their medical care needs.Youth experiencing significant non-medical life changes or events during the time of transition to adult care.Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.Nuances to the positive impacts of maintained parental involvement in transition.Parents unsure how to support their child through transition.Focus groups conducted to assess adolescents', their healthcare professionals', and their parents' worries and perceived needs regarding the transition to adult care.
Direct content analysis of focus group 15 patients 16 parents 13 healthcare professionals Maintained parental involvement during the transition process as having negative implications for youths' successful transition.Parents experiencing a loss of stability during their child's transition to adult care.Parents unsure how to support their child through transition.Parental worries surrounding changing models of care between paediatric and adult settings.Describes the transition to adult care for youth with Type 1 diabetes (T1D).Assesses the connection between self care and glycaemic control as well as if parent relationship variables were associated with patients seeing adult or paediatric physicians for their care.

Prospective cohort study 118 patients
Youth experiencing significant non-medical life changes or events during the time of transition to adult care.Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.
Parental involvement during and after transition influencing youths' adherence to their medical care needs.
Huang et al., Transition to adult care: Systematic assessment of adolescents with chronic illnesses and their medical teams, The Journal of Pediatrics, USA, 2011 Considers the transition to adult care from the perspective of adolescents with chronic diseases as well as from paediatric and adult healthcare providers in terms facilitators and barriers to transition and how Webbased technologies can support this transition.
Content and narrative analysis of focus group interviews 10 patients 24 healthcare professionals Maintained parental involvement during the transition process as having negative implications for youths' successful transition.Parental worries surrounding changing models of care between paediatric and adult settings.
Johnson et al., The relationship of transition readiness, selfefficacy, and adherence to preferred health learning method by youths with chronic conditions, The Journal of Pediatric Nursing, USA, 2015 To assess whether young people who prefer collecting health information about their conditions from their healthcare providers are more likely to have higher transition readiness scores than those who prefer collecting said information from their family, the internet, or peers with the same condition.Investigating the process through which self-management skills are developed for adolescents' with chronic conditions through use of interviews with patients and their parents and the application of Self Determination Theory.

Direct content analysis of interviews 23 sets of patients and parents
Parents experiencing a loss of stability during their child's transition to adult care.Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.Parents functioning as "safety nets" (or equivalent) for youth during transition to adult care.To summarize current literature regarding the transition process, from multiple different stakeholders' perspectives so as to propose implementation recommendations to improve said process.

Review
Parents experiencing a loss of stability during their child's transition to adult care.Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.Parents unsure how to support their child through transition.Nguyen et al., You never transition alone!Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self-management, Child: Care, Health and Development, Canada, 2016 Investigating adolescents with chronic health conditions, their health providers' and their parents' perspectives towards self-management during the transition to adult care.

Interpretive phenomenology of interviews 11 patients 7 parents 7 healthcare professionals
Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.Parental involvement during and after transition influencing youths' adherence to their medical care needs.Parents functioning as "safety nets" (or equivalent) for youth during transition to adult care.Parents unsure how to support their child through transition.Paine et al., Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers, Inflammatory Bowel Diseases, USA, 2014 Identification of key outcomes to assess success of transition to adult care for adolescents with inflammatory bowel disease (IBD) as well as noting barriers and enablers to transition for this population.
Thematic content analysis of interviews 12 healthcare professionals Youth experiencing significant non-medical life changes or events during the time of transition to adult care.Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.Nuances to the positive impacts of maintained parental involvement in transition.
Pierce et al., Health care transition for young adults with Type 1 diabetes: Stakeholder engagement for defining optimal outcomes, Journal of Pediatric Psychology, USA, 2017 Engagement of adolescents with Type 1 diabetes (T1D), parents, paediatric, and adult care providers, and other experts in interviews to guide the development of multiple outcomes to be used for the assessment of successful/unsuccessful health care transitions (HCTs).
Direct content analysis of interviews 10 patients 9 parents 18 healthcare professionals Youth experiencing significant non-medical life changes or events during the time of transition to adult care.Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.

Polfuss et al., Family perspectives of components of a diabetes transition program, Journal of Pediatric Nursing, USA, 2015
Assessment of adolescents with Type 1 diabetes (T1D) and their parents' perspectives of self-efficacy, selfmanagement, knoweldge of diabetes, knowledge and skills needed for the transition to adult care.

Cross-sectional study 45 patient-parent dyads
Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.

Psihogios et al., Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents, Journal of Cancer Survivorship, USA, 2019
Investigating patients' and parents' perceptions towards the value, availability, and goals included in long-term-follow-up care for childhood cancer survivors (CCS).

Direct content analysis of focus group interviews 14 patients 15 parents
Parents experiencing a loss of stability during their child's transition to adult care.Parental worries surrounding changing models of care between paediatric and adult settings.
Schraeder et al., Perspectives from primary health care providers on their roles for supporting adolescents and young adults transitioning from pediatric services, BMC Family Practice, Canada, 2020 To understand family physicians' and other primary health care providers' perspectives towards how their involvement in chronically ill young peoples' transition to adult care either benefits or hinders the process.
Thematic content analysis of interviews 18 healthcare professionals Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.Parental involvement during and after transition influencing youths' adherence to their medical care needs.Parents functioning as "safety nets" (or equivalent) for youth during transition to adult care.
Sibayan., Family relational experiences during major transitions with a chronic illness, [Doctoral Thesis -Walden University], USA, 2018 Investigation of the lived experiences of young adults with chronic conditions and their parents during the transition from paediatric to adult care.

Thematic content analysis of interviews 6 patients 8 parents
Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.
Parents experiencing a loss of stability during their child's transition to adult care.Parental involvement during and after transition influencing youths' adherence to their medical care needs.Parents functioning as "safety nets" (or equivalent) for youth during transition to adult care.Parents unsure how to support their child through transition.Nuances to the positive impacts of maintained parental involvement in transition.Parental worries surrounding changing models of care between paediatric and adult settings.
Baker et al., Structural model of patient-centered communication and diabetes management in early emerging adults at the transfer to adult care, Journal of Behavioral Medicine, USA, 2019 Helgeson et al., Characterizing the transition from paediatric to adult care among emerging adults with Type 1 diabetes, Diabetic Medicine, USA, 2013 Lindsay et al., Enablers and barriers of men with Duchenne muscular dystrophy transitioning from an adult clinic within a pediatric hospital, Disability and Health Journal, Canada, 2017 Identifies barriers and facilitators for patients, care providers, and parents in the successful transition of young men with Duchenne muscular dystrophy (DMD) from paediatric to adult settings of careParents experiencing a loss of stability during their child's transition to adult care.Youth experiencing significant non-medical life changes or events during the time of transition to adult care.Parents unsure how to support their child through transition.Parental worries surrounding changing models of care between paediatric and adult settings.Mackie et al., Transition and transfer from pediatric to adult congenital heart disease in Canada: Call for strategic implementation, Canadian Journal of Cardiology, Canada, 2019 Youth experiencing significant non-medical life changes or events during the time of transition to adult care.Maintained parental support throughout the transition process as having a net positive impact on youths' transition to adult care.Parental involvement during and after transition influencing youths' adherence to their medical care needs.ProQuestDissertations & Theses Global, October 29 th , 2020 Results: 26 Limited to full text, 2010-2020 ProQuest Dissertations & Theses Global, March 3 rd , 2022 Results: 0 Limitted to full text, 2020-2022 Search 2: "Alberta Children's Hospital transition to adult care" Results: 3,580,000 à First page of results considered à Selected: 1 Search 3: Children's Healthcare Canada transition to adult care Results: 44,400,000 à First page considered à Selected: 1