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Assessing the supportive care needs of parents with a child with a bleeding disorder using the Parental Needs Scale
Kate Khair1,2, Lemuel Pelentsov3
1Centre for Outcomes and Experience Research in Childhood Health, Illness and Disability (ORCHID), London, UK.
Insights
Parents of children with inherited bleeding disorders report significant emotional and financial burdens, despite satisfaction with specialist care. Regular assessment of parental support needs is crucial for effective clinical management.
Area of Science:
- Pediatric Hematology
- Rare Diseases
- Caregiver Support
Background:
- Limited data exists on support needs for parents of children with rare inherited bleeding disorders, unlike more common conditions like hemophilia.
- Understanding these needs is critical for improving quality of life for affected families.
Purpose of the Study:
- To evaluate the supportive care needs of parents caring for children with various inherited bleeding disorders.
- To identify key areas where parental support is lacking or could be enhanced.
Main Methods:
- A pilot study was conducted at a single center.
- The validated Parental Needs Scale for Rare Diseases was administered to assess support needs.
- 231 parents, including fathers, completed the survey.
Main Results:
- Parents generally understood their child's condition and were satisfied with specialist care but noted gaps in non-specialist settings.
- Over half of parents experienced significant emotional distress related to their child's condition.
- Financial concerns regarding medical care and respite were reported by 42.6%-46.7% of parents.
Conclusions:
- Parents feel confident managing their child's bleeding disorder and are satisfied with current care.
- Emotional, psychological, and financial burdens significantly impact parental coping mechanisms.
- Integrating regular assessment of parental support needs into routine clinical care is recommended.
Introduction:
Inherited bleeding disorders are rare, for some such as haemophilia, there is a growing body of evidence about caregiver burden and associated support needs. Whilst for other disorders, which may be present with less clinically significant bleeding, there is a paucity of data about parents support needs.
Aims:
To evaluate the supportive care needs of parents of children with a range of inherited bleeding disorders.
Methods:
A single-centre pilot study using the validated Parental Needs Scale for Rare Diseases to measure the overall support needs of parents of children with a bleeding disorder.
Results:
231 parents, including 99/231 (42.9%) fathers, completed the survey; half had a bleeding disorder themselves. Parents reported a good understanding of their child's condition, and overall were happy with the care provided by the specialist haemophilia team but reported a lack of knowledge in non-specialist settings. More than half of parents reported experiencing significant emotional issues relating to their child's condition. 42.6%-46.7% reported financial concerns related to paying for medical care and respite, respectively.
Conclusion:
Overall, parents are confident about dealing with their child's bleeding disorder and are satisfied with the level of support and care that they and their child are receiving. The emotional and psychological impacts of having a child with a bleeding disorder remain a significant burden for many parents. The financial costs associated with caring for their child further impact on their ability to cope. Regular assessment of parental support needs should be part of routine clinical care.
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