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Children with profound intellectual and multiple disabilities and their participation in family activities
Jönköping University, School of Health Science, HHJ. CHILD.
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: urn:nbn:se:hj:diva-23728ISBN: 978-91-85835-48-5 (print)OAI: oai:DiVA.org:hj-23728DiVA: diva2:714504
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
List of papers
1. Frequency of Occurrence and Child Presence in Family Activities: A Quantitative, Comparative Study of Children with Profound Intellectual and Multiple Disabilities and Children with Typical Development
Open this publication in new window or tab >>Frequency of Occurrence and Child Presence in Family Activities: A Quantitative, Comparative Study of Children with Profound Intellectual and Multiple Disabilities and Children with Typical Development
2014 (English)In: International Journal of Developmental Disabilities, ISSN 2047-3869, Vol. 60, no 1, 13-25 p.Article in journal (Refereed) Published
Abstract [en]

Objectives: The objective was to investigate the performance aspect of participation, operationalized as the frequency of occurrence of family activities and child presence in these activities for children with profound intellectual and multiple disabilities (PIMD) and children with typical development (TD). The focus was also on how family and child characteristics are related to the frequency of occurrence of family activities. This is part of a larger research project investigating facilitating factors for participation in children with PIMD.

Methods: A descriptive, comparative study was performed using a questionnaire developed for the purpose.

Results: In the families with a child with PIMD, the majority of activities occurred less often than in families with children with TD. In both groups, relationships were found between the frequency of occurrence of family activities and total family income, as well as the educational level of the parents. For children with PIMD, motor ability, cognition, health, and behaviour, were related to frequency of occurrence. Moreover, the presence of the children in the activities differed in the two groups; the children with PIMD were present in the activities less often.

Discussion: Considering a long-term perspective, low occurrence of family activities and child presence may affect child development and everyday functioning. Knowledge about factors related to the occurrence of family activities and child presence in them, as well as an understanding of its causes, can promote the provision of everyday natural learning opportunities for children with PIMD.

Keyword
children, profound intellectual and multiple disabilities, family activities, participation, comparison
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-22831 (URN)10.1179/2047387712Y.0000000008 (DOI)000337099500003 ()2-s2.0-84879181600 (Scopus ID)
Available from: 2013-12-19 Created: 2013-12-19 Last updated: 2016-10-24Bibliographically approved
2. Engagement in family activities: a quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development
Open this publication in new window or tab >>Engagement in family activities: a quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development
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.

Keyword
child disability, comparison, engagement, family activities, participation, profound intellectual and multiple disabilities
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-22830 (URN)10.1111/cch.12044 (DOI)000320389000009 ()
Note

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

Available from: 2013-12-19 Created: 2013-12-19 Last updated: 2017-12-06Bibliographically approved
3. Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents’ and personal assistants’ experiences
Open this publication in new window or tab >>Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents’ and personal assistants’ experiences
2014 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 25, 2169-2177 p.Article 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.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-23726 (URN)10.3109/09638288.2014.895058 (DOI)000346060300008 ()24588070 (PubMedID)2-s2.0-84916631689 (Scopus ID)HHJCHILDIS (Local ID)HHJCHILDIS (Archive number)HHJCHILDIS (OAI)
Available from: 2014-04-28 Created: 2014-04-28 Last updated: 2017-12-05Bibliographically approved
4. The role of the external personal assistant for children with profound intellectual and multiple disabilities working in the children’shome
Open this publication in new window or tab >>The role of the external personal assistant for children with profound intellectual and multiple disabilities working in the children’shome
(English)Manuscript (preprint) (Other academic)
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-23727 (URN)
Available from: 2014-04-28 Created: 2014-04-28 Last updated: 2014-04-29Bibliographically approved

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