Background: The overarching aim of this PhD thesis was to evaluate the feasibility and outcomes of the Navigator ACT intervention for stressed and distressed parents of children with disabilities within the context of outpatient habilitation (disability health care) services. Providing parents a treatment that is feasible, safe, acceptable, and effective is essential for supporting their well-being and caregiving capacity. A further objective was to contribute to research on the assessment and treatment of psychological inflexibility among caregivers.Methods: Data were collected mainly in habilitation services in Stockholm region but also in 15 other regions in Sweden and through web-based surveys. The participants were parents of children receiving services in habilitation clinics. In Study 1, over 2000 parents, both with and without children with disabilities aged 0-18 years, completed the Parental Acceptance and Action Questionnaire which measures parental psychological flexibility, to evaluate the psychometric properties of the main outcome measure used in this project. In Study 2, n = 94 parents of children with neurodevelopmental disabilities participated. We used attendance statistics, and treatment evaluations to examine the feasibility of the Navigator ACT. Five self-rate scales were used to measure, e.g., psychological flexibility, before and after the treatment and at a 4-month follow-up. In Study 3, which was an RCT, the same self-rating scales were used in a sample of n = 137 parents randomized to Navigator ACT (n = 70) or treatment-as-usual (TAU, n = 67). The Navigator ACT group received the treatment immediately, while the TAU group received it in the following term. In Study 4, predictors of attrition and treatment outcomes were examined in n = 529 parents who started the treatment.Results: In Study I, we found support for the construct validity and reliability of PAAQ. In Study 2, we concluded that Navigator ACT is a feasible and well-received treatment within open habilitation services. Parents and group leaders considered the treatment as highly credible. Additionally, we found positive preliminary outcomes in psychological flexibility, anxiety, depression, mindfulness, and child difficulties, mainly with large effect sizes. Changes in parenting stress were significant first at follow-up. In study 3, Navigator ACT outperformed TAU in reducing parental psychological inflexibility and parenting stress and in increasing parent-reported prosocial behaviors of the child with disability. Parents in both the ACT and TAU groups experienced reduced symptoms of depression and anxiety, but the Navigator ACT was not more effective than TAU. In Study 4, we found that the attrition rate of the Navigator ACT was 18.5%, which is comparable to other ACT-based treatments. Most sociodemographic or clinical variables did not predict attrition or treatment outcomes. However, parents with disabilities (mainly ADHD and autism), and parents with three or more children were at higher risk of attrition. Older age and higher educational levels were associated with a lower risk of attrition. High pre-treatment scores on credibility and outcome expectancy, and higher distress (anxiety/depression), predicted better outcomes in psychological flexibility. Although the findings were significant, these variables explained only a small portion of the outcome variance.Conclusions: Navigator ACT is a safe, feasible and promisingly effective option for addressing psychological inflexibility and parenting stress within Swedish habilitation services context. The long-term effects of Navigator ACT warrant further investigation.List of scientific papersI. Holmberg Bergman, T., Sandred, A., Lindström, T., Lappalainen, P., Ghaderi, A., & Hirvikoski, T. (2024). A psychometric Evaluation of the Parental Acceptance and Action Questionnaire (PAAQ) in Parents of Children with and without Disabilities. Journal of Contextual Behavioral Science, 32, 100757. https://doi.org/10.1016/j.jcbs.2024.100757II. Holmberg Bergman, T., Renhorn, E., Berg, B., Lappalainen, P., Ghaderi, A., & Hirvikoski, T. (2022). Acceptance and Commitment Therapy Group Intervention for Parents of Children with Disabilities (Navigator ACT): An Open Feasibility Trial. Journal of Autism and Developmental Disorders, 1-1. https://doi.org/10.1007/s10803-022-05490-6III. Holmberg Bergman, T., Lappalainen, P., Ghaderi, A., Hirvikoski, T. The Effectiveness of Acceptance and Commitment Therapy in Group (Navigator ACT) for Stressed Parents of Children with Disabilities-A Randomized Controlled Trial. SubmittedIV. Holmberg Bergman, T. Lappalainen, P., Renhorn, E., Mahdi, S., Ghaderi, A., Hirvikoski, T. Predictors of Attrition and Treatment Outcome in ACT Group Treatment for Parents of Children with Disabilities. Submitted
Tiina Holmberg Bergman (Thu,) studied this question.