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Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents’ and personal assistants’ experiences
Jönköping University, School of Health and Welfare, HHJ. CHILD.
Australian Catholic University, Melbourne.
Jönköping University, School of Health and Welfare, HHJ. CHILD.
2014 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 25, p. 2169-2177Article in journal (Refereed) Published
Abstract [en]

Purpose: Participation throughout one's life plays a significant role for development and emotional well-being. For this reason, there is a need to identify ways to facilitate participation in family activities for children and adolescents with profound intellectual and multiple disabilities (PIMD).

Methods: The study design was qualitative and explorative, based on semi structured interviews with 11 parents and 9 personal assistants of children with PIMD.

Results: The interviews revealed participation-facilitating strategies relating to the children's/adolescent's proximal environment, such as "Availability and acceptability of the activity", "Good knowledge about the child" and a "A positive attitude of people close to the child", as well as strategies related to the children/adolescents themselves: "Sense of belonging", "Possible for the child/adolescent to understand", "Opportunities to influence" and "Feeling of being needed".

Conclusions: Children and adolescents with PIMD are dependent on support obtained through their environment. The identified strategies, individually adapted through awareness and knowledge by the parents and the personal assistants, provide important evidence to assist our understanding in gaining understanding about how to improve participation in family activities of children and adolescents with PIMD.

Implications for Rehabilitation Participation-facilitating strategies related to the child/adolescent and his or her proximal environments are identified to improve participation in children and adolescents with profound intellectual and multiple disabilities (PIMD). Examples of strategies for the child's/adolescents' proximal environment include "good knowledge about the child/adolescent", and, for the child/adolescent, include creating "sense of belonging" and "opportunities to influence". Identifying and making these strategies explicit may assist in enhancing the participation of children and adolescents with PIMD in family activities. People in the child's/adolescent's proximal environment need to set the scene for participation.

Place, publisher, year, edition, pages
2014. Vol. 36, no 25, p. 2169-2177
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hj:diva-23726DOI: 10.3109/09638288.2014.895058ISI: 000346060300008PubMedID: 24588070Scopus ID: 2-s2.0-84916631689Local ID: HHJCHILDISOAI: oai:DiVA.org:hj-23726DiVA, id: diva2:714374
Available from: 2014-04-28 Created: 2014-04-28 Last updated: 2017-12-05Bibliographically approved
In thesis
1. Children with profound intellectual and multiple disabilities and their participation in family activities
Open this publication in new window or tab >>Children with profound intellectual and multiple disabilities and their participation in family activities
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background. Families are essential parts of any community and throughout childhood one’s family serves as the central setting wherein opportunities for participation are offered. There is a lack of knowledge about participation of children with profound intellectual and multiple disabilities (PIMD) in family activities and how improved participation can be reached. Gathering such knowledge could enable an improvement in child functioning and wellbeing and also ease everyday life for families of a child with PIMD.

Aim. The overall aim of this thesis was to explore participation seen as presence and engagement in family activities in children with PIMD and to find strategies that might facilitate this participation.

Material and Methods. The research was cross-sectional and conducted with descriptive, explorative designs. First a quantitative, comparative design was used including questionnaire data from 60 families with a child with PIMD and 107 families with children with typical development (TD) (I, II). Following that, a qualitative, inductive design was used with data from individual interviews with parents of 11 children with PIMD and nine hired external personal assistants (III). Finally a mixed method design was conducted where collected quantitative data was combined with the qualitative data from the previous studies (IV).

Results. It was found that children with PIMD participated less often, compared to children with TD, in a large number of family activities, however they participated more often in four physically less demanding activities. Children with PIMD also participated in a less diverse set of activities. Additionally, they overall had a lower level of engagement in the activities; however, both groups of children showed higher engagement in enjoyable, child-driven activities and lower engagement in routine activities. The motor ability of the child with PIMD was found to be the main child characteristic that affected their presence in the family activities negatively and child cognition was found to be the personal characteristic that affected their engagement in the activities. The child’s presence and engagement were influenced to a lesser extent by family socio-economic factors when compared to families with children with TD. Parents and hired external personal assistants described several strategies to be used to improve participation of the children with PIMD, such as by showing engagement in the activities oneself and by giving the child opportunities to influence the activities. The role of the hired external personal assistant, often considered as a family member for the child, was described as twofold: one supporting or reinforcing role in relation to the child and one balancing role in relation to the parents/the rest of the family, including reducing the experience of being burdened and showing sensitivity to family life and privacy.

Conclusion. A child with PIMD affects the family’s functioning and the family’s functioning affects the child. Child and environmental factors can act as barriers that have the result that children with PIMD may experience fewer and less varied activities that can generate engaged interaction within family activities than children with TD do. Accordingly, an awareness and knowledge of facilitating strategies for improved participation in family activities is imperative. There needs to be someone in the child’s environment who sets the scene/stage and facilitates the activity so as to increase presence and engagement in proximal processes based on the child’s needs. The family, in turn, needs someone who can provide respite to obtain balance in the family system. External personal assistance includes these dual roles and is of importance in families with a child with PIMD.

Place, publisher, year, edition, pages
Jönköping: School of Health Sciences, 2014. p. 95
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 49
Series
Studies from the Swedish Institute for Disability Research, ISSN 1650-1128 ; 61
National Category
Other Health Sciences
Identifiers
urn:nbn:se:hj:diva-23728 (URN)978-91-85835-48-5 (ISBN)
Public defence
2014-05-27, Forum Humanum, HHJ, 13:00 (English)
Opponent
Supervisors
Available from: 2014-04-29 Created: 2014-04-28 Last updated: 2015-12-21Bibliographically approved

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Axelsson, Anna KarinWilder, Jenny

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