Working with parents of children with complex mental health issues to improve care: A qualitative inquiry

Abstract

The study objective was to explore the experiences of parents of children (6–17 years) with complex mental healthcare needs in accessing healthcare services in Alberta, Canada. Parents were interviewed using a semi-structured guide with open-ended and probing questions. Interviews were audio recorded and transcribed verbatim. Thematic analysis revealed three main themes: (1) Fragmented healthcare services profoundly impacted participants’ experience of mental health care due to (a) a lack of a collaborative approach across disciplines in the healthcare system; (b) unavailability of information related to mental health care and (c) a lack of patient-centred care. (2) Navigating the complex healthcare system was difficult due to fragmented services and was hindered by gaps in accessing and receiving care, lack of continuity of care and lack of resources. (3) Distressed parents discussed the emotional challenges, financial burdens, self-advocacy and stigma they experienced in navigating the system. Parents offered insights into potential solutions to these gaps. Parents recommended the creation of a one-stop shop service with a team approach led by a navigator to facilitate and support navigations across healthcare services that work collaboratively across disciplines among healthcare services and across sectors inclusive of social services, education, policing and community programmes.

Parents' priorities and preferences for treatment of children with ADHD: Qualitative inquiry in the MADDY study

“…The lived experiences described by our study participants align with findings from similar studies of the experiences and perspectives of parents of children with mental health issues (Laugesen & Groenkjaer, 2015; Leung et al, 2021). That is, parents encountered difficulties accessing and receiving care and described a lack of coordinated care across healthcare, school and social services.…”

“…That is, parents encountered difficulties accessing and receiving care and described a lack of coordinated care across healthcare, school and social services. This resulted in parents experiencing distress themselves because of the daily emotional challenges, financial burdens, stigma and need to advocate on behalf their child and family (Laugesen & Groenkjaer, 2015; Leung et al, 2021). Our findings confirmed these challenges experienced by parents and can be used to guide advocacy efforts to improve supports for parents of children with mental health issues, such as ADHD.…”

Accessing mental health services for a child living with anxiety: Parents’ lived experience and recommendations

“…Two of these studies were conducted in the U.K [ 41 , 42 ], one in Australia [ 12 ], and two in Canada [ 44 , 45 ]. Leung et al [ 44 ] recently explored the experience of parents accessing mental services for their child (6 to 17 years) with complex mental healthcare needs residing in primarily urban centres in Alberta, Canada.…”

“…Two of these studies were conducted in the U.K [ 41 , 42 ], one in Australia [ 12 ], and two in Canada [ 44 , 45 ]. Leung et al [ 44 ] recently explored the experience of parents accessing mental services for their child (6 to 17 years) with complex mental healthcare needs residing in primarily urban centres in Alberta, Canada. Using a thematic analysis approach, the authors documented that parents’ experience of access was impacted by fragmented healthcare services that lacked collaboration across disciplines, a patient-centred care approach, and information about available services.…”

“…While the studies conducted in Canada documented parents’ experiences of accessing services for children living with complex mental healthcare needs [ 44 ] and emotional and behavioural disorders, all of which included children with anxiety disorders [ 45 ], to our knowledge, no study has specifically focused on parents of children living with an anxiety disorder. Lacking is also a comprehensive understanding of the lived experience of parents who access mental health services for their child with anxiety.…”