The supportive care needs of parents with a child with a rare disease : results of an online survey

Background: Parents caring for a child affected by a rare disease have unmet needs, the origins of which are complex and varied. Our aim was to determine the supportive care needs of parents caring for a child with a rare disease. Methods: An online survey was developed consisting of 45 questions (108 items) and separated into six domains. The survey included questions about perceived level of satisfaction with receiving care, experiences and needs of providing daily care, the impacts of disease on relationships, the emotional and psychological burdens of disease, and parents overall satisfaction with the support received. Results: Three-hundred and one parents from Australia and New Zealand completed the survey; 91 % (n = 275/301) were mothers, with 132 distinct rare diseases being reported. Fifty-four percent (n = 140/259) of parents were dissatisfied with health professionals’ level of knowledge and awareness of disease; 71 % (n = 130/183) of parents felt they received less support compared to other parents. Information regarding present (60 %, n = 146/240) and future services (72 %, n = 174/240) available for their child were considered important. Almost half of parents (45 %, n = 106/236) struggled financially, 38 % (n = 99/236) reduced their working hours and 34 % (n = 79/236) ceased paid employment. Forty-two percent (n = 99/223) of parents had no access to a disease specific support group, and 58 % (n = 134/230) stated that their number of friends had reduced since the birth of their child; 75 % (n = 173/230) had no contact with other parents with a child with a similar disease, and 46 % (n = 106/230) reported feeling socially isolated and desperately lonely. Most frequent emotions expressed by parents in the week prior to completing the survey were anxiety and fear (53 %, n = 119/223), anger and frustration (46 %, n = 103/223) and uncertainty (39 %, n = 88/223). Conclusion: This study is the first to develop an online survey specifically for use with parents to investigate their supportive care needs across a large and diverse group of rare diseases. The findings highlight that parents with a child with a rare disease have common unmet needs regardless of what disease their child has. Such information may allow health providers to improve child outcomes through improving parental supportive care

Health-Related Quality of Life in Mothers of Children with Epilepsy: 10 years after diagnosis

PURPOSE: Epilepsy in childhood extends far beyond seizures and affects child and parental well-being. The long-term impact of childhood-onset epilepsy on parental well-being is unknown. This study assessed health-related quality of life (HRQOL) in mothers 10 years after their child\u27s diagnosis of epilepsy. METHODS: Data come from the Health-Related Quality of Life in Children with Epilepsy Study, a multicenter prospective cohort study of children with newly diagnosed epilepsy. Mothers completed a mailed questionnaire at the 10-year follow-up, which included the Short-Form Health Survey (SF-12-v2) to evaluate the physical and mental health components of their HRQOL. Block-wise linear regressions identified child/epilepsy, maternal/family, and maternal psychosocial factors associated with mothers\u27 HRQOL. RESULTS: A total of 159 mothers participated in this study (46% of the sample assessed at baseline). At follow-up, 69% of youth had been seizure free for the past 5 years. Mothers scored similarly to population norms (mean: 50, SD: 10) on the mental health subscale (mean: 49.5, SD: 9.3) and significantly better on the physical health subscale (mean: 53.0, SD: 7.6). Better family resources were associated with higher (better) scores on the physical health subscale (B = 0.20; 95% CI 0.03, 0.36). Better family functioning (B = 0.34; 95% CI 0.06, 0.62), fewer maternal depressive symptoms (B = 0.33; 95% CI 0.20, 0.47), and perception of less stress (B = 0.70; 95% CI 0.52, 0.88) were associated with higher (better) scores on the mental health subscale. CONCLUSION: Ten years after the diagnosis of epilepsy in children, the HRQOL of mothers was similar to reports from women in the general population. This study identified factors contributing to better maternal HRQOL and highlights the importance of family environment over epilepsy-related variables