Self-Esteem and Social Support: Strengthening the Social Relationships of Young People with Spina Bifida - Research Recap

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Research Recap

Self-Esteem and Social Support: Strengthening the Social Relationships of Young People with Spina Bifida

Summary prepared by: Dr. Beverley Antle

Why did we do this study?
The purpose of this research was to learn from young people with spina bifida about the social support they receive, particularly support from their parents. It was a follow-up from an earlier study by Dr. Antle1.

How did we do the research?
Ten young people and their parents, mostly mothers, participated in this study (total participants: 24). There were five boys and five girls who were on average fourteen years of age, and representing a range of physical differences among persons who have spina bifida. The ideas from these young people and their parents were then discussed with a different group of young people with spina bifida and their parents.

What did we find?
PARENTS: AN ESSENTIAL SOURCE OF SUPPORT
Parents provided support in a number of different ways and were attentive to both the practical and
emotional needs of their children. We present to summary of themes under the categories originally presented by LaGreca2.

Tangible Support:
Parents, particularly mothers, monitor how their child is doing and provide cues for their children with respect to self-care, education and socialization. Continence routines and kidney health are a special concern.
Informational Support:
Mothers: Young people were most likely to turn to their mothers for information about their health condition. Doctors were also another source for information for both young people and their parents.
Parent as Health Advocate: Many parents also advocated for the child’s health and treatment, which was often not known by the child.
Companionship Support:
Extended Family as Companions: While all of the children interviewed had friendship connections, it was also clear that parents and extended family were a strong source of companionship.

Esteem-Enhancing Support:
Offering praise: Most parents said it was important to say how proud they were of the child’s accomplishments.
Challenging Them to Try: Many parents highlighted the importance of developing the child’s ability to persist even in difficult situations. Resist the urge to rescue is there!
Encouraging Accomplishments: Many parents expressed that it was important to actually experience accomplishments, such as learning a sport, or participating in a school play.
Treat Them Like Everyone Else: Most parents said it was important to treat all of their children equally. These parents also did extra things to accommodate their child’s special needs.

FRIENDS: A GREAT SOURCE OF SUPPORT WHEN IT IS THERE
While the level of support from parents was very clearly high, support from friends was less consistent.
Tangible Support:
Friends: A Source of Practical Help: Some young people had friends, particularly in their school
context who provided practical assistance.
Informational Support:
It was important to have someone that understood their health condition and treated them “just the
same” anyway.
Companionship Support:
Hanging Out and Talking: Spending time with friends was an important part of their social world.
Esteem-Enhancing Support:
Cheering Up: Some young people identified that talking to their friends was one way that they
would cheer themselves up.
School Peers - Mixed Reactions: While a number of young people had positive experiences with
their peers at school, a few had quite negative experiences with their school peers.

What do these new findings mean?
Parents continue to be an important source of support to young people with spina bifida, even in their teenaged years. This suggests to us that health care professionals will need to recognize the valuable supportive role that parents play and continue to build on this natural source of support. More work is needed to foster a positive climate for peer interactions, particularly in the school setting.

For more information, please contact:
Beverley. J Antle, The Hospital for Sick Children , 555 University Avenue, Toronto, ON M5G 1X8
Email: beverley.antle@sickkids.ca Telephone: 416/813-6788

Who did this study?
Dr. Beverley J. Antle, Ms. Gert Montgomery, at the Bloorview MacMillan Children’s Centre in
Toronto, and Ms. Christine Stapleford while at the Spina Bifida and Hydrocephalus Association of
Ontario.

How was this study funded?
The Spina Bifida and Hydrocephalus Association of Canada and Bloorview MacMillan Children’s
Foundation.

1 Antle, BJ (2004). Seeking strengths in young people with physical disabilities: Examining factors associated with self-worth. Health & Social Work. 29(3) 167-175

2 LaGreca A.M. Peer influences on pediatric chronic illness: An Update. Journal of Pediatric Psychology. 1992;17(6)775-784.

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