System disruptions
We are currently experiencing disruptions on the search portals due to high traffic. We are working to resolve the issue, you may temporarily encounter an error message.
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Living in transition: experiences of healthand well-being and the needs of adolescents with cerebral palsy
University West, Department of Social and Behavioural Studies, Division of Social Pedagogy and Sociology. University West, Department of Social and Behavioural Studies, Division of Social Work and Social Pedagogy. Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden. (BUV)ORCID iD: 0000-0002-5435-1637
Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
2015 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 41, no 2, p. 258-65Article in journal (Refereed) Published
Abstract [en]

BACKGROUND:

Transition to adulthood for adolescents in general is a multifaceted process, and for adolescents with cerebral palsy (CP) it also involves transition from child- to adult-oriented support. CP entails a variety and combination of disabilities, which in association with external factors may make the transition to adult health services difficult. The aim of this study was to gain a deeper understanding of how adolescents with CP experience their own health, well-being and need of support during their transition to adulthood.

METHODS:

An inductive qualitative approach was used based on interviews with 12 adolescents with CP aged 17-18 years and living in Sweden. Manifest and latent content analysis was used for the analysis of data.

RESULTS:

The results are described in the main theme 'Living in transition and looking forward to being an adult, but not feeling ready yet and being in need of further support'. Five subthemes highlight the adolescents' experiences of belonging to a family, of the importance of friends and love, of managing daily activities, being surrounded by support and having hopes for the future.

CONCLUSIONS:

Interviews with adolescents with CP provide valuable information for the planning of transition programmes and for the support of adolescents with disabilities who are in the transition to adult living. According to the adolescents in this study, the support should be flexible and not be fixed to biological age. Personal, individualized information and support was desired by the adolescents in order to be able to manage their own transition. One option to facilitate transition is the stepping-stone of being close to parents or staff members during the first phase, after leaving the parental home.

Place, publisher, year, edition, pages
2015. Vol. 41, no 2, p. 258-65
Keywords [en]
adolescents; cerebral palsy; emerging adulthood; focus group interviews; health; transition
National Category
Nursing
Research subject
Child and Youth studies; SOCIAL SCIENCE, Social work; NURSING AND PUBLIC HEALTH SCIENCE, Public health science
Identifiers
URN: urn:nbn:se:hv:diva-9050DOI: 10.1111/cch.12151PubMedID: 24798111OAI: oai:DiVA.org:hv-9050DiVA, id: diva2:901925
Available from: 2016-02-09 Created: 2016-02-09 Last updated: 2021-03-10Bibliographically approved
In thesis
1. Mind the gap: transition to adulthood – youths' with disabilities and their caregivers' perspectives
Open this publication in new window or tab >>Mind the gap: transition to adulthood – youths' with disabilities and their caregivers' perspectives
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Transition to adulthood, referring to the process of moving from childhood to adulthood, can be a complex period for youths with disabilities who might need special support transitioning into an independent life as adults. Caregivers are significant persons for the youths, which is why their own health and wellbeing is important. Therefore the overall aim of this thesis was to gain a deeper understanding of health and wellbeing, challenges, preferences and needs during the transition from childhood to adulthood in youths with disabilities and their caregivers. The thesis is comprised of two studies, study A focusing on the perspectives of youths with CP (Paper I) and of their caregivers (Paper II) and Study B focusing on the perspectives of immigrant youths with disabilities and caregivers from Middle Eastern countries residing in Sweden (Paper III and IV). Study A had a qualitative approach and involved focus groups and individual interviews with 12 male and female youths, 17-18 years of age, with CP and various physical and cognitive levels of disabilities (Paper I), as well as 15 mothers and fathers (Paper II). The interviews were analysed using qualitative content analysis. In Study B, a combination of qualitative and quantitative methods was used. Based on structured and semi-structured questionnaires in combination with open ended questions interviews were conducted in Swedish or Arabic with 17 male and female youths, 13-24 years of age with various disabilities and 10 mothers, five fathers and one sibling. The families were all immigrants with Middle Eastern origin and most of them had lived in Sweden for more than five years. The questionnaires Family Need Survey (FNS), Rotterdam Transition Profile (RTP) and Canadian Occupational Performance Measure (COPM) were all translated and adapted to Swedish except for COPM where there already was a Swedish version. The results were analysed using mainly descriptive statistics and based on the framework of International Classification of Functioning, Disability and Health – Children & Youth Version (ICF-CY). The findings from study A showed that the experiences of youths and caregivers mostly concerned mental health and wellbeing described as both positive and negative experiences. Their family life was experienced as important, secure and convenient, which made the youths feel safe and gave parents a sense of meaningfulness. Youths described participation, socialising and love as being important, but also challenging and worrying. Caregivers experienced sorrow and anger and together with demanding logistics, planning and worrying, their health was affected negatively during their children's transition to adulthood. The findings from study B showed that youths were dependent on their caregivers for transportations, participating in leisure activities and socialising with friends. They were also dependent on their caregivers for the demanding of support and health care. The youths had few or no experiences of intimate relationships but felt that they were expected to get married in the future which worried them and their caregivers. Caregivers were uncomfortable with using the term intellectual disability. Caregivers needed help to understand their child's condition and to explain the child's condition to their wives/husbands. A significant difference was found in what problems youths identified with and what their caregivers identified as their youth's problems. The youths experienced problems with handling finances, transportations and seeking employment or daily activities whilst their caregiver thought their youth's primary problems involved self-care. The overall finding showed that to strengthen health and wellbeing in youths with disabilities and their caregivers and to meet challenges, preferences and needs during transition from childhood to adulthood both youths and caregivers need information and support. Both youths and caregivers expressed a desire for individualised support given by one person who could facilitate the transition period by coordinating information and give support based on individual preferences and needs. During the recruiting process in both studies, great challenges were experienced in finding participants. Collaboration with professionals in schools and leisure activities was found to be the most effective way to get in contact with immigrant youths and thereby also their caregivers. The findings from this thesis may enable professionals to develop and improve best practice guidelines for support, habilitation and health care in youths' transition. To facilitate for the youth to transfer from services with a family-centred approach to person-centred adult services, their autonomy must be strengthened by involving them in their own transition planning early on. Immigrant youths need special information and support about love and the freedom of choice to get married. The COPM and RTP are suggested to be used as tools in person-centred transition planning given they are used customized and applied with cultural sensibility. To enable those with communication limitations to give their independent voice the use of communication tools is necessary. Furthermore, the transition to person-centred adult support and health care should be flexible and not determined by biological age. However, youths need support by their caregivers who in turn might both need, and want, support for themselves and occasionally hands-on support. Guidance by a specially designated navigator aimed to support the whole family would be an option to meet individual needs. The information and support should be culturally sensitive with respect to various linguistic and cultural experiences. To close the gaps between systems of care collaboration was discussed to be necessary to facilitate the transition between support and health care for children and youths as well as services for adults. The use of ICF-CY as a framework for understanding needs and the standardised terminology in ICF-CY in documentation can facilitate this collaboration.

Place, publisher, year, edition, pages
Lund: Lunds University, Faculty of Medicine, 2016. p. 114
Keywords
Disability, youth, caregiver, transition to adulthood, immigrant, preferences, needs
National Category
Social Work
Research subject
Child and Youth studies; SOCIAL SCIENCE, Social work
Identifiers
urn:nbn:se:hv:diva-10779 (URN)978-91-7619-261-0 (ISBN)9789176192610 (ISBN)
Supervisors
Available from: 2017-03-07 Created: 2017-03-07 Last updated: 2023-04-05Bibliographically approved

Open Access in DiVA

No full text in DiVA

Other links

Publisher's full textPubMed

Authority records

Björquist, Elisabet

Search in DiVA

By author/editor
Björquist, Elisabet
By organisation
Division of Social Pedagogy and SociologyDivision of Social Work and Social Pedagogy
In the same journal
Child Care Health and Development
Nursing

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 642 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf