Abstract
ObjectivesParents of children with a chronic illness (CI) are at risk for psychosocial problems. The aim of this study was to refine an existing face-to-face intervention into an online psychosocial group intervention for parents by (1) exploring which themes are important, (2) determine what type of intervention parents would like and (3) assess parents’ practical preferences.MethodsParents of children with a CI (0–18 years) were invited to complete an online questionnaire. To acquire more in-depth information, focus groups and telephone interviews were conducted. Descriptive statistics were used.Results272 parents (mean age = 43.1 years, 85% female) participated. Three focus groups (15 parents) and seven telephone interviews were conducted. Most important themes were: the CI of the child, family functioning, taking care of yourself, relationships with others and practical support. Parents preferred a group with parents of children in the same age category. At first, parents preferred face-to-face contact. After an explanation and demonstration of an online intervention, parents became more positive about online support, mostly because they could participate from home.Conclusions for PracticeParents have a need for psychosocial support focusing on different themes. Professionals should explain and demonstrate an online intervention to parents. Based on these results, Op Koers Online for parents was developed. An RCT to assess feasibility and effectiveness of the intervention is currently running.
Highlights
What this study adds?: Based on parental support needs and the themes parents considered as important to address in an intervention, an innovative parent-focused intervention Op Koers Online for parents was developed
Because the intervention has a generic approach, parents of children with rare illnesses have the opportunity to participate in a group intervention
More than half of the parents (55%) has had prior psychosocial support from one or more of the following professionals: psychologist (35%), a social worker (19%) and/or a child life specialist (10%)
Summary
Parents of children with a chronic illness (CI) are at risk for psychosocial problems. Parents are confronted with stressors about their child’s health including practical stressors (e.g. managing daily medical routine) and emotional challenges (e.g. worrying) (Cousino and Hazen 2013; Pinquart 2018) These parents are at risk for psychosocial problems (van Oers et al 2014) and elevated levels of distress (Coughlin and Sethares 2017; Haverman et al 2013), which can have a negative impact on parents’ coping with illness-related stressors, emotional availability for their children and their ability to manage the child’s illness effectively (Cousino and Hazen 2013). Those interventions are often primarily focused on teaching the parents to support their child managing the illness (Eccleston et al 2015; Morawska et al 2015)
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