Brief report: assessment of barriers to mental health services among caregivers of children with rare disease

Abstract

Abstract Background Caregivers of children with rare disease experience obstacles to securing medical care including mental health treatment services. The question posed in this study was whether barriers to accessing mental health treatment services reported by caregivers of children with rare disease differed from caregivers of children with common medical and mental health conditions, and children with mental health conditions alone. Method An online survey combining both quantitative and qualitative outcome measures was distributed to caregivers (n = 305) who were biological, step, foster, and adoptive parents of 374 children under 18-years-old residing at home in the United States. Results There were no statistically significant differences among the caregiver groups concerning barriers to accessing mental health services based on quantified measures from the Barriers to Treatment Participation Scale. Statistically significant main and interaction effects were found on three scale items (scheduling appointments, life stress, understanding treatment). Qualitative responses among caregivers of children with rare disease emphasized difficulty finding mental health treatment, lack of competent professionals, financial burden, and problems with insurance coverage. Conclusion Despite non-significant findings, several implications for families of children with rare disease are noted, namely having access to knowledgeable and experienced practitioners, making in-home services available, integrating disciplines at outpatient settings, and overcoming the costs of mental health treatment to the care required for complex medical conditions.

Keywords

• Families
• Mental health services
• Rare disease