Caregiving burden and special needs of parents in the care of their short-statured children - a qualitative approach

PurposeTo explore caregiving burden, health-related quality of life (HRQOL), stress, and individual resources of parents in the care of children with isolated growth hormone deficiency (IGHD) or idiopathic short stature (ISS). MethodsFocused interview analysis of previously, within the Quality of Life in Short Stature Youth (QoLISSY) project, conducted structured focus group discussions (n=7) with parents (n=33) of children with IGHD/ISS aged 4 to 18 years were performed. Results26 out of the 33 parents reported mental stress due to their child's growth disorder. Social pressure and stigmatization were also mentioned as being demanding. Some parents reported having trouble with human growth hormone (hGH) treatment. Several parents wished for parent support groups with other like-minded parents of short-statured children. ConclusionFor physicians, it is essential to understand the parents' caregiving burden, stress, and individual resources in caring for IGHD/ISS children. If an impaired HRQOL is detected, psychological intervention for these parents may be scheduled, and coping mechanisms may be discussed. Furthermore, it seems essential for parents to be educated by their healthcare provider about the possible side effects of hGH treatment or to know where to find evidence-based information about it.

Automated summary

The purpose of this study was to explore caregiving burden, health-related quality of life (HRQOL), stress, and individual resources of parents caring for children with isolated growth hormone deficiency (IGHD) or idiopathic short stature (ISS). The analysis of structured focus group discussions conducted on 33 parents of IGHD/ISS children aged 4 to 18 years showed that 26 out of the 33 parents reported mental stress due to their child's growth disorder. Social pressure and stigmatization were also mentioned as challenging issues. Some parents also faced difficulties with human growth hormone (hGH) treatment. Several parents expressed a desire for parent support groups. It is important for physicians to understand the caregiving burden, stress, and individual resources of parents of IGHD/ISS children in order to provide appropriate support and intervention.