Tiina Holmberg Bergman

High levels of parental stress and psychological inflexibility are common among caregivers raising children with neurodevelopmental disabilities. Navigator ACT is a group‐based treatment developed to increase psychological flexibility and reduce the impact of stress among parents of children with various disabilities (e.g., autism spectrum disorder, ADHD, intellectual disability, acquired brain injury). This two‐arm randomized controlled trial ( n = 137) was conducted in Sweden within outpatient disability services setting, and pre‐registered in the clinical trials register. To compare conditions, stressed and distressed parents were randomly assigned to either the ACT group ( n = 70) or treatment‐as‐usual (TAU, n = 67). In the ACT group, 83.3% completed the full course of treatment. Mixed‐model linear regression analyses indicated that ACT was significantly more effective than TAU in reducing self‐reported psychological inflexibility ( p < 0.002, d = 0.84) and parenting stress (p < 0.001, d = 0.38). These improvements were maintained at four‐month follow‐up. Parents in the ACT group also reported significantly greater improvements in their children's prosocial behaviors ( p < 0.05, d = 0.46). However, no significant group differences were observed in levels of parental depression, anxiety, mindfulness, or child's difficulties. ACT group treatment demonstrated promising outcomes in reducing psychological inflexibility and parenting stress in a mixed group of parents of children with different neurodevelopmental disabilities, suggesting that parent support interventions do not need to be specific to the child's diagnosis.

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. [Submitted]IV. 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]

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. [Submitted]IV. 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]

Background: Parents of children with neurodevelopmental conditions (NDC) are at risk of experiencing elevated levels of parental stress. Access to robust instruments to assess parental stress is important in both clinical and research contexts. Objective: We aimed to evaluate the psychometric properties of a Swedish version of the Parental Stress Scale (PSS), completed by parents of 3- to 17-year-old children, with and without NDCs. Method: Main analyses were conducted on data from three independent samples: a community sample (n=1018), a treatment-seeking sample of parents of children with various disabilities (n=653), and a sample of parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) who themselves reported varying ADHD symptom severities (n=562). Additional analyses were enabled by the use of data from a complementary test-retest sample (n=337). Results: The internal consistency of the PSS was good (Cronbach’s alpha, α=.87) and its test-retest reliability moderate (ICC=.66). The scale correlated in the expected direction with related constructs (r=.50–.56 in the community sample). An exploratory factor analysis found its internal structure to reflect two aspects of parental stress: Lack of Parental Rewards and Role Satisfaction (factor 1, α=.90) and Parental Stressors and Distress (factor 2, α=.85). The treatment-seeking parents of children with disabilities reported higher parental stress than community reference parents (p<.001; Cohen’s d=1.17). Moreover, we found that parents with high ADHD symptom severity reported higher parental stress than parents with low ADHD symptom severity (p<.001; d=0.39). Conclusion: In summary, we found evidence in support of the reliability and validity of the PSS, which overall was judged to be useful as a measure of parental stress in a Swedish context. In addition, our results underline the importance of considering parental stress and related needs in assessments and intervention planning involving families of children with NDCs.

Parents of children with autism spectrum disorder and other disabilities report high levels of distress, but systematically evaluated interventions are few. This study aimed to evaluate the feasibility of a novel, manualized Acceptance and Commitment Therapy group intervention (Navigator ACT) in a sample of 94 parents of children with disabilities. Feasibility was measured by treatment completion, credibility, and satisfaction, and preliminary outcomes by using self-rating scales administered at the baseline, post-intervention, and follow-up. The results imply the intervention is feasible in the context of Swedish outpatient habilitation services. A preliminary analysis of the outcome measures suggests that parents experienced significant improvements in well-being. The results indicate that the treatment is feasible and should be evaluated in a randomized controlled trial.