Forskning
Udskriv Udskriv
Switch language
Region Hovedstaden - en del af Københavns Universitetshospital
E-pub ahead of print

Navigating being a young adult with cerebral palsy: a qualitative study

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

Harvard

APA

CBE

MLA

Vancouver

Author

Bibtex

@article{9c273ed3286e45daa660a3122b819079,
title = "Navigating being a young adult with cerebral palsy: a qualitative study",
abstract = "Objectives Young adults with cerebral palsy (CP) face potential challenges. The transition to young adulthood is characterized by significant changes in roles and responsibilities. Furthermore, young adults with chronic conditions face a transfer from pediatric care to adult healthcare. This study explores how living with CP affects young adults in general, and specifically which psychosocial, medical and healthcare needs are particularly important during this phase of life. Methods A qualitative study with data from individual, semi-structured, in-depth interviews with six young adults with CP (ages 21-31 years) were transcribed verbatim and analyzed. The participants were selected to provide a maximum variation in age, gender, Gross Motor Function Classification System score and educational background. A descriptive thematic analysis was used to explore patterns and identify themes. Results Three themes were identified: {"}Being a Young Adult{"}, {"}Development in Physical Disability and New Challenges in Adulthood{"} and {"}Navigating the Healthcare System{"}. The three themes emerged from 15 sub-themes. Our findings emphasized that young adults with CP faced psychosocial challenges in social relationships, participation in education and work settings and striving towards independence. The transition to young adulthood led to a series of new challenges that the young adults were not prepared for. Medical challenges included managing CP-related physical and cognitive symptoms and navigating adult health care services, where new physicians with insufficient knowledge regarding CP were encountered. Conclusion The young adults with CP were not prepared for the challenges and changes they faced during their transition into adulthood. They felt that they had been abandoned by the healthcare system and lacked a medical home. Better transitional care is urgently needed to prepare them for the challenges in young adulthood.",
keywords = "cerebral palsy, chronic disease, healthcare, transitional care, young adult",
author = "Gitte Normann and {Arntz Boisen}, Kirsten and Peter Uldall and Anne Br{\o}dsgaard",
year = "2020",
month = "9",
day = "5",
doi = "10.1515/ijamh-2020-0039",
language = "English",
journal = "International Journal of Adolescent Medicine and Health",
issn = "0334-0139",
publisher = "Walterde Gruyter GmbH & Co. KG",

}

RIS

TY - JOUR

T1 - Navigating being a young adult with cerebral palsy

T2 - a qualitative study

AU - Normann, Gitte

AU - Arntz Boisen, Kirsten

AU - Uldall, Peter

AU - Brødsgaard, Anne

PY - 2020/9/5

Y1 - 2020/9/5

N2 - Objectives Young adults with cerebral palsy (CP) face potential challenges. The transition to young adulthood is characterized by significant changes in roles and responsibilities. Furthermore, young adults with chronic conditions face a transfer from pediatric care to adult healthcare. This study explores how living with CP affects young adults in general, and specifically which psychosocial, medical and healthcare needs are particularly important during this phase of life. Methods A qualitative study with data from individual, semi-structured, in-depth interviews with six young adults with CP (ages 21-31 years) were transcribed verbatim and analyzed. The participants were selected to provide a maximum variation in age, gender, Gross Motor Function Classification System score and educational background. A descriptive thematic analysis was used to explore patterns and identify themes. Results Three themes were identified: "Being a Young Adult", "Development in Physical Disability and New Challenges in Adulthood" and "Navigating the Healthcare System". The three themes emerged from 15 sub-themes. Our findings emphasized that young adults with CP faced psychosocial challenges in social relationships, participation in education and work settings and striving towards independence. The transition to young adulthood led to a series of new challenges that the young adults were not prepared for. Medical challenges included managing CP-related physical and cognitive symptoms and navigating adult health care services, where new physicians with insufficient knowledge regarding CP were encountered. Conclusion The young adults with CP were not prepared for the challenges and changes they faced during their transition into adulthood. They felt that they had been abandoned by the healthcare system and lacked a medical home. Better transitional care is urgently needed to prepare them for the challenges in young adulthood.

AB - Objectives Young adults with cerebral palsy (CP) face potential challenges. The transition to young adulthood is characterized by significant changes in roles and responsibilities. Furthermore, young adults with chronic conditions face a transfer from pediatric care to adult healthcare. This study explores how living with CP affects young adults in general, and specifically which psychosocial, medical and healthcare needs are particularly important during this phase of life. Methods A qualitative study with data from individual, semi-structured, in-depth interviews with six young adults with CP (ages 21-31 years) were transcribed verbatim and analyzed. The participants were selected to provide a maximum variation in age, gender, Gross Motor Function Classification System score and educational background. A descriptive thematic analysis was used to explore patterns and identify themes. Results Three themes were identified: "Being a Young Adult", "Development in Physical Disability and New Challenges in Adulthood" and "Navigating the Healthcare System". The three themes emerged from 15 sub-themes. Our findings emphasized that young adults with CP faced psychosocial challenges in social relationships, participation in education and work settings and striving towards independence. The transition to young adulthood led to a series of new challenges that the young adults were not prepared for. Medical challenges included managing CP-related physical and cognitive symptoms and navigating adult health care services, where new physicians with insufficient knowledge regarding CP were encountered. Conclusion The young adults with CP were not prepared for the challenges and changes they faced during their transition into adulthood. They felt that they had been abandoned by the healthcare system and lacked a medical home. Better transitional care is urgently needed to prepare them for the challenges in young adulthood.

KW - cerebral palsy

KW - chronic disease

KW - healthcare

KW - transitional care

KW - young adult

U2 - 10.1515/ijamh-2020-0039

DO - 10.1515/ijamh-2020-0039

M3 - Journal article

JO - International Journal of Adolescent Medicine and Health

JF - International Journal of Adolescent Medicine and Health

SN - 0334-0139

ER -

ID: 60791447