Article2003

Just Getting on with it: Exploring the Service Needs of Mothers Who Care for Young Children with Severe/Profound and Life‐Threatening Intellectual Disability

113 citations0/0 files storedJournal of Applied Research in Intellectual Disabilities

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Family and Disability Support Research Down syndrome and intellectual disability research Family Caregiving in Mental Illness

Abstract

Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life‐limiting conditions. Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements. Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as ‘haphazard’ and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy. Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home‐based respite, which would offer them short breaks to rest or engage in part‐time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

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References

1987How to use qualitative methods in evaluation 1999The good research guide for small-scale social research projects.1990Ordinary families, special children: a systems approach to childhood disability 1994Resources and Strategies: How Parents Cope with the Care of a Disabled Child 1983Influence of selected child characteristics on stress in families of handicapped infants.2002Factors Related to Positive Perceptions in Mothers of Children with Intellectual Disabilities 2000Maternal Employment and Family Responsibilities: the Perspectives of Mothers of Children with Intellectual Disabilities 1992Service needs of families of children with severe physical disability

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