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.
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.
Entities:
Keywords:
Adolescents; cerebral palsy; health and wellbeing; parents’ experiences; qualitative interviews; transition
Authors: Jan Willem Gorter; Darcy Fehlings; Mark A Ferro; Andrea Gonzalez; Amanda D Green; Sarah N Hopmans; Dayle McCauley; Robert J Palisano; Peter Rosenbaum; Brittany Speller Journal: J Clin Med Date: 2022-05-29 Impact factor: 4.964
Authors: Miriam Douma; Charlotte P Bouman; Hedy A van Oers; Heleen Maurice-Stam; Lotte Haverman; Martha A Grootenhuis; Linde Scholten Journal: Matern Child Health J Date: 2020-10