How to measure barriers in accessing mental healthcare? Psychometric evaluation of a screening tool in parents of children with intellectual and developmental disabilities

Abstract

Caring for children with special needs can cause an enormous physical and emotional burden, and therefore these parents have an elevated risk to experience mental health problems. The characteristics of current healthcare systems and parents’ responsibilities to care for their children seem to impede their access to mental healthcare. There is so far a lack of instruments to screen for such obstacles. The aim of this study was to develop and validate a scale for measuring barriers to accessing mental healthcare. The Parental Healthcare Barriers Scale (PHBS) was developed on the basis of an extensive literature research, input and discussion from experts and parents with lived experience. A cross-sectional survey was used to collect data from 456 parents of children with intellectual and developmental disabilities (IDD). Physical health, mental health, social support, and parenting were measured for convergent and discriminant validity of the PHBS. The PHBS scale revealed acceptable to good reliability and validity. It consists of four subscales (i.e., support accessibility, personal belief, emotional readiness, and resource availability). The PHBS found parents prioritized their children’s treatments over their own mental health challenges (93.4%), did not have enough time (90.4%), and had financial concerns (85.8%). Parents in rural and remote areas had more limited resources. Findings from our study suggest increasing the public literacy on mental health challenges, introducing evidence-based treatments, increasing the availability of healthcare services for parents, and adjusting current services to their needs.

Risk and protective factors for posttraumatic stress and posttraumatic growth in parents of children with intellectual and developmental disorders

“…The PHBS has 4 subscales, namely personal belief (5 items), support accessibility (3 items), resource availability (4 items), and emotional readiness (3 items), with an additional open-ended question at the end. The PHBS showed good reliability, convergent and discriminant validity, as assessed in a study conducted by us (Xiong, Kaltenbach, et al, 2022 ). The validation of the PHBS and the present study were both in a larger programme designed for parents of children with IDD.…”

“…The Parental Healthcare Barriers Scale (PBHS, Xiong, Kaltenbach, et al, 2022 ) includes 16 items that ask to what extent parents’ looking for and receiving help for their mental health challenges were affected by the listed obstacles. This scale was designed to quantify the barriers faced specifically by parents of children with IDDs and to facilitate efforts for reducing such barriers.…”

“…Ouimette et al ( 2011 ) sampled 490 patients with PTSD and found their PTS was positively correlated with perceived barriers in seeking help. Whether such effect occurs in parent groups was rarely discussed, although it is clear that most parents of children with IDD experienced significant barriers to accessing mental health services, as revealed in a recent study from our team (Xiong, Kaltenbach, Yakovenko, Lebsack, & McGrath, 2022 ). Furthermore, modifiable obstacles affecting PTG have generally not been sufficiently documented.…”