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The supportive care needs of parents caring for a child with a rare disease: A scoping review
Lemuel J Pelentsov1, Thomas A Laws1, Adrian J Esterman2
1School of Nursing and Midwifery, Division of Health Sciences, University of South Australia, City East Campus, GPO Box 2471, Adelaide, SA 5001, Australia.
Insights
Parents of children with rare diseases have significant unmet needs, particularly social, informational, and emotional support. Existing frameworks partially address these needs, highlighting the necessity for further research and revised support structures.
Area of Science:
- Pediatric rare diseases
- Caregiver support
- Health psychology
Background:
- Parents of children with rare diseases experience complex and varied unmet needs.
- Limited research comprehensively identifies these supportive care requirements.
- The Supportive Care Needs Framework (SCNF) was utilized as a review structure.
Purpose of the Study:
- To identify the supportive care needs of parents with a child diagnosed with a rare disease.
- To provide a comprehensive overview irrespective of the specific rare condition.
Main Methods:
- A scoping review of 29 studies published between 1990 and 2014.
- Examination of research literature on parental supportive care needs.
- Comparison of identified needs against the seven domains of the SCNF.
Main Results:
- Social needs were most frequently cited (72% of studies), followed by informational (65%) and emotional needs (62%).
- Key parental needs included information on the child's disease, managing emotional stress and guilt, uncertainty about future healthcare, and personal caring responsibilities.
- A general need for increased support was also commonly reported.
Conclusions:
- A significant gap exists in research on the supportive care needs of parents of children with rare diseases.
- The current SCNF incompletely captures the breadth and types of needs experienced by these parents.
- A revised framework is proposed, requiring further empirical research for validation.
Background:
Parents caring for a child with a rare disease report unmet needs, the origins of which are varied and complex. Few studies have systematically attempted to identify the supportive care needs of parents with a child with a rare disease comprehensively. We have used the widely accepted Supportive Care Needs Framework (SCNF) as the structure for this review.
Objective:
The purpose of the current review was to identify the supportive care needs of parents with a child with a rare disease, irrespective of condition.
Methods:
We conducted a scoping study review comprising 29 studies (1990-2014) to identify and examine the research literature related to the supportive care needs of parents, and to compare these needs with the seven domains outlined in the SCNF.
Results:
Most common needs cited were social needs (72% of papers), followed by informational needs (65% of papers) and emotional needs (62% of papers), with the most common parental needs overall being information about their child's disease, emotional stress, guilt and uncertainty about their child's future health care needs, parents own caring responsibilities and the need for more general support.
Conclusion:
A paucity of studies exists that explore the supportive care needs of parents of a child with a rare disease. The SCNF only partially reflects the breadth and type of needs of these parents, and a preliminary revised framework has been suggested. Further research is required in this area, particularly empirical research to amend or confirm the suggested new framework.
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