Abstract
Parents of children with inflammatory bowel disease (IBD) are important members of their healthcare team and influence their child’s adaptation to disease. The primary aim of this research was to test the feasibility and acceptability of a three-session online parent workshop based on acceptance and commitment therapy (ACT) and address concerns about eating well and nutrition in IBD. The secondary aim was to explore the initial effectiveness of this workshop in parent reported psychological flexibility, mindfulness, experiential avoidance, cognitive fusion, valued living, and symptoms of depression, anxiety, and stress. We used a single arm pragmatic prospective study design with parents of children attending the IBD program at a tertiary pediatric healthcare centre in Canada. Mixed methods patient reported outcomes were measured at baseline, immediate post participation, and 3 months post participation in the workshop. Thirty-seven parents enrolled in the study and feasibility and acceptability goals were largely met. Parents qualitatively described changes to their parenting, what aspects of the workshop were most helpful, and targeted feedback on how to improve workshop. Findings suggest that providing parents of children with IBD a brief online ACT workshop including nutrition guidance is feasible and leads to changes in parenting behaviours.
Highlights
The unavoidable physical and emotional discomfort that comes with pediatric inflammatory bowel disease (IBD) can negatively impact all aspects of a young persons’ health-related quality of life (HRQL) [1,2,3,4,5]
Thirty-seven parents were enrolled into the study and 32 participated in an iACTP workshop between November 2019 to July 2020
Based approaches that target parents and include both psychosocial and nutritional components are an example of providing integrated multidisciplinary care in pediatric IBD clinics
Summary
The unavoidable physical and emotional discomfort that comes with pediatric inflammatory bowel disease (IBD) can negatively impact all aspects of a young persons’ health-related quality of life (HRQL) [1,2,3,4,5]. Parents are critical partners in their child’s support network and health care team This is in addition to managing the financial, logistical, emotional, and social demands of parenting in general. Controlling for child age, gender, IBD disease activity, and pain intensity, parent rumination about their child’s pain was uniquely associated with their child’s HRQL. This is over and above the child’s rumination or magnification of their own pain [6]. Parent behaviours have been shown to be an important predictor of a child’s report of pain intensity in IBD samples [8,9,10] These findings highlight the importance of parents’ cognitions and behaviours related to their child’s pain, regardless of their child’s current IBD disease activity. Offering online group-based parent acceptance and commitment therapy (ACT) is one solution to provide parents with coping strategies and social support from others with shared lived experience
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