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Mind the gap: transition to adulthood – youths' with disabilities and their caregivers' perspectives
University West, Department of Social and Behavioural Studies, Division of Social Work and Social Pedagogy. (BUV)
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. , 114 p.
Keyword [en]
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: urn:nbn:se:hv:diva-10779ISBN: 978-91-7619-261-0 (electronic)ISBN: 9789176192610 (print)OAI: oai:DiVA.org:hv-10779DiVA: diva2:1078919
Supervisors
Available from: 2017-03-07 Created: 2017-03-07 Last updated: 2017-03-07Bibliographically approved
List of papers
1. Living in transition: experiences of healthand well-being and the needs of adolescents with cerebral palsy
Open this publication in new window or tab >>Living in transition: experiences of healthand well-being and the needs of adolescents with cerebral palsy
2015 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 41, no 2, 258-65 p.Article 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
John Wiley & Sons, 2015
Keyword
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:nbn:se:hv:diva-9050 (URN)10.1111/cch.12151 (DOI)24798111 (PubMedID)
Available from: 2016-02-09 Created: 2016-02-09 Last updated: 2017-03-07Bibliographically approved
2. Parents’ Experiences of Health and Needs When Supporting Their Adolescents With Cerebral PalsyDuring Transition to Adulthood
Open this publication in new window or tab >>Parents’ Experiences of Health and Needs When Supporting Their Adolescents With Cerebral PalsyDuring Transition to Adulthood
2015 (English)In: Physical & Occupational Therapy in Pediatrics, ISSN 0194-2638, E-ISSN 1541-3144Article in journal (Refereed) Epub ahead of print
Abstract [en]

ABSTRACT. Aims: Parents are the primary support providers for adolescents with disabilities,their health and wellbeing is therefore of great importance when planning foryouths’ transition into adulthood. The aim of this study was to gain a deeper understandingof how parents of adolescents with cerebral palsy (CP) experience their ownhealth and wellbeing and their needs for support during the adolescent’s transition toadulthood. Methods: An inductive qualitative approach was used, including interviewswith 15 mothers and fathers to 10 adolescents with CP aged 17–18 years. Latent contentanalysis was used for analyzing the data. Results: Themain theme “Friction blisters chafingand healing during transition” illustrates the parents’ experiences. Five sub-themesformed the parents’ experiences of concerns along with sorrow and stress in life, worriesabout what was to come, their need for support, strategies for coping, and experiencesof cohesion. Conclusions: Knowledge of parents’ experiences of their health, wellbeing,and needs provide valuable information for the planning of transition for adolescentswith disabilities. Help with parents’ sorrow, stress, and worry in daily life might be facilitatedand parental health safeguarded by a navigator who can both guide and givehands-on support.

Keyword
Adolescents, cerebral palsy, health andwellbeing, parents’ experiences, qualitative interviews, transition
National Category
Nursing
Research subject
Child and Youth studies; NURSING AND PUBLIC HEALTH SCIENCE, Public health science
Identifiers
urn:nbn:se:hv:diva-9052 (URN)10.3109/01942638.2015.1101041 (DOI)
Available from: 2016-02-09 Created: 2016-02-09 Last updated: 2017-03-07Bibliographically approved
3. Immigrant youths with disabilities and caregivers from the Middle-East: Challenges and needs during transition to adulthood
Open this publication in new window or tab >>Immigrant youths with disabilities and caregivers from the Middle-East: Challenges and needs during transition to adulthood
(English)Manuscript (preprint) (Other academic)
Keyword
Immigrants, transition, young adults
National Category
Social Work
Research subject
Child and Youth studies; SOCIAL SCIENCE, Social work
Identifiers
urn:nbn:se:hv:diva-10777 (URN)
Note

Ingår i avhandling

Available from: 2017-03-07 Created: 2017-03-07 Last updated: 2017-03-07Bibliographically approved
4. Identified problems during transition of immigrant youth with disabilities from Middle-Eastern countries: youths' and caregivers' priorities
Open this publication in new window or tab >>Identified problems during transition of immigrant youth with disabilities from Middle-Eastern countries: youths' and caregivers' priorities
(English)Manuscript (preprint) (Other academic)
Keyword
Immigrants, youth, disabilities
National Category
Social Work
Research subject
Child and Youth studies
Identifiers
urn:nbn:se:hv:diva-10778 (URN)
Note

Ingår i avhandling

Available from: 2017-03-07 Created: 2017-03-07 Last updated: 2017-03-07Bibliographically approved

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