Unmet supportive care needs in families of children with chronic health conditions: an Australian cross-sectional study

Abstract

Abstract Background The aim of this study was to identify similarities and differences in the unmet supportive care needs (USCN) of families of children with major chronic health conditions (CHCs) using a universal need assessment tool. Methods A cross-sectional online survey involving parents of children with congenital heart disease (CHD), type 1 diabetes mellitus (T1D), cancer, and asthma diagnosed within the last 5 years recruited via social media and support organizations. Thirty-four items assessing the USCN across six domains (care needs, physical and social needs, informational needs, support needs, financial needs, child-related emotional needs) were responded to on a 4-point Likert scale [no need (1) to high need (4)]. Descriptive statistics identified the level of need, and linear regressions identified factors associated with higher need domain scores. Due to small numbers, the asthma group was excluded from comparisons across CHCs. Results One hundred and ninety-four parents completed the survey (CHD: n = 97, T1D: n = 50, cancer: n = 39, and asthma: n = 8). Parents of children with cancer were most likely to report at least one USCN (92%), followed by parents of children with T1D (62%). The five most commonly reported USCN across CHCs were drawn from four domains: child-related emotional, support, care, and financial. Three need items were included in the top five needs for all conditions. A higher USCN was associated with a greater frequency of hospital visits and the absence of parental support. Conclusions Using a universal need assessment tool, this is one of the first studies to characterize USCN in families of children diagnosed with common CHCs. While proportions endorsing different needs varied across conditions, the most endorsed needs were similar across the illness groups. This suggests that support programs or services could be shared across different CHCs.