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Engagement in family activities: a quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development
Jönköping University, School of Health and Welfare, HHJ. CHILD.
Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.ORCID iD: 0000-0001-9597-039X
Jönköping University, School of Health and Welfare, HHJ. CHILD.
2013 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 39, no 4, 523-534 p.Article in journal (Refereed) Published
Abstract [en]

Background

Participation is known to be of great importance for children's development and emotional well-being as well as for their families. In the International Classification of Functioning, Disability and Health – Children and Youth version participation is defined as a person's ‘involvement in a life situation’. Engagement is closely related to involvement and can be seen as expressions of involvement or degree of involvement within a situation. This study focuses on children's engagement in family activities; one group of families with a child with profound intellectual and multiple disabilities (PIMD) and one group of families with children with typical development (TD) were compared.

Methods

A descriptive study using questionnaires. Analyses were mainly performed by using Mann–Whitney U-test and Spearman's rank correlation test.

Results

Engagement in family activities differed in the two groups of children. The children with PIMD had a lower level of engagement in most family activities even though the activities that engaged the children to a higher or lesser extent were the same in both groups. Child engagement was found to correlate with family characteristics mostly in the children with TD and in the children with PIMD only negative correlations occurred. In the children with PIMD child engagement correlated with cognition in a high number of listed family activities and the children had a low engagement in routines in spite of these being frequently occurring activities.

Conclusions

Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning.

Place, publisher, year, edition, pages
2013. Vol. 39, no 4, 523-534 p.
Keyword [en]
child disability, comparison, engagement, family activities, participation, profound intellectual and multiple disabilities
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hj:diva-22830DOI: 10.1111/cch.12044ISI: 000320389000009OAI: oai:DiVA.org:hj-22830DiVA: diva2:681040
Note

Special Issue: Participation of children with disabilities: Measuring subjective and objective outcomes

Available from: 2013-12-19 Created: 2013-12-19 Last updated: 2016-09-21Bibliographically 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. 95 p.
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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