Parents’ Experiences of Health and Needs When Supporting Their Adolescents With Cerebral Palsy During Transition to Adulthood

ABSTRACT

Aims: Parents are the primary support providers for adolescents with disabilities, their health and wellbeing is therefore of great importance when planning for youths’ transition into adulthood. The aim of this study was to gain a deeper understanding of how parents of adolescents with cerebral palsy (CP) experience their own health and wellbeing and their needs for support during the adolescent's transition to adulthood. Methods: An inductive qualitative approach was used, including interviews with 15 mothers and fathers to 10 adolescents with CP aged 17–18 years. Latent content analysis was used for analyzing the data. Results: The main theme “Friction blisters chafing and healing during transition” illustrates the parents' experiences. Five sub-themes formed the parents’ experiences of concerns along with sorrow and stress in life, worries about what was to come, their need for support, strategies for coping, and experiences of cohesion. Conclusions: Knowledge of parents’ experiences of their health, wellbeing, and needs provide valuable information for the planning of transition for adolescents with disabilities. Help with parents’ sorrow, stress, and worry in daily life might be facilitated and parental health safeguarded by a navigator who can both guide and give hands-on support.

KEYWORDS.:

• Adolescents
• cerebral palsy
• health and wellbeing
• parents’ experiences
• qualitative interviews
• transition

ACKNOWLEDGMENTS

Special thanks to the parents who participated in the study and to the administrative staff who administered the requests for participation. The authors would like to thank Katarina Lauruschkus, PhD student, for assisting in several of the focus groups.

Declaration of interest: The authors report no conflicts of interest. The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The authors alone are responsible for the content and writing of the article.

FUNDING

Support for the study was provided by Swedish Research Council and the Research Platform for Disability Studies in Habilitation, Region Skane.

ABOUT THE AUTHORS

E. Björquist is affiliated with the Faculty of Medicine, Department of Health Sciences, Lund University, Sweden. She is a PhD candidate in disability studies with a focus on rehabilitation. This article is part of her PhD thesis. Associate Professor E. Nordmark is affiliated with the Faculty of Medicine, Department of Health Sciences, Lund University, Sweden. She is an associate professor in pediatric physiotherapy. Professor I. Hallström is affiliated with the Faculty of Medicine, Department of Health Sciences, Lund University, Sweden. She is a professor in pediatric nursing.