Navigator ACT for Parents of Children with Disabilities
While there are many joys, parenting a child with a disability also presents unique challenges. Many parents of children with disabilities experience high levels of parenting stress which can contribute to poorer mental health. Currently, there is a lack of evidence-based treatments focusing specifically on parenting stress and mental health in the context of challenging parenting situations.
Acceptance and Commitment Therapy (ACT) has scientific support as a treatment for various conditions, such as stress and depression. Internationally, ACT has been tested as support for parents in several studies, with findings recently summarized in two meta-analyses. In Sweden, we have developed Navigator ACT, a tailored ACT intervention for parents of children with disabilities. The aim of the treatment is to promote psychological well-being and a flexible approach to parenting. Parents practice strategies like mindful parenting, acceptance, rest, recovery, and small changes to make the stress and challenges of parenting a child with a disability more manageable. Navigator ACT is delivered in groups at clinics (habilitation centers) or individually online (I-Navigator ACT). Trained Navigator ACT practitioners guide parents through the treatment.
The Navigator ACT program is currently being evaluated in a research project in collaboration between KIND, Karolinska Institutet, and Habilitation and Health, Region Stockholm.
The project currently consists of three components:
- Navigator ACT in groups
- Long-Term Follow-Up and the Role of Genetic Profiles
- I-Navigator ACT – Internet-Based Individual Treatment
Navigator ACT in Groups
The group-based Navigator ACT intervention consists of five group sessions and a follow-up session. Each session focuses on a specific theme designed to enhance parents' psychological well-being and flexibility. Parents are given the opportunity to share their experiences with others in similar situations.
The key finding so far is that Navigator ACT is a feasible and well-received intervention within Swedish habilitation services. Preliminary results indicate reductions in stress, depression, and anxiety among parents after participating in Navigator ACT, as well as increased psychological well-being, acceptance, and satisfaction in parenting.
The study summarizing results from the first 94 parents who participated:
Acceptance and Commitment Therapy Group Intervention for Parents of Children with Disabilities (Navigator ACT): An Open Feasibility Trial.
Holmberg Bergman T, Renhorn E, Berg B, Lappalainen P, Ghaderi A, Hirvikoski T
J Autism Dev Disord 2023 May;53(5):1834-1849
Psychometric evaluation
Parental Acceptance and Action Questionnaire (PAAQ) measures psychological flexibility in parenting. ACT aims to reduce behavioral rigidity and avoidance, which are associated with mental health challenges, while increasing psychological flexibility. PAAQ has been used as a measurement tool in all studies within the project. More information about the psychometric evaluation of this scale:
Psychometric Properties of the Parental Stress Scale in Swedish Parents of Children with and without Neurodevelopmental Conditions.
Lindström T, Bergman TH, Annerstedt M, Forster M, Bölte S, Hirvikoski T
Scand J Child Adolesc Psychiatr Psychol 2024 Jan;12(1):10-22
We also examined treatment effects of the Navigator ACT by comparing with treatment-as-usual (TAU) in a randomized controlled trial. Several habilitation centers in Sweden contributed to this study. Navigator ACT was found to be more effective than treatment as usual (TAU) in improving psychological flexibility and reducing parenting stress. Navigator ACT for parents proved also effective in a transdiagnostic group setting. In addition, children's (parent-reported) prosocial behaviors improved when parents participated in ACT. This study is under review.
Currently, we are investigating factors that predict treatment outcomes and dropout rates. The goal is to identify which parents benefit most from group-based Navigator ACT and who may require different or additional support during treatment.
We have also compared Swedish and Italian ACT protocols and group leader training programs for parents of children with neurodevelopmental disorders in a review article.
To learn more about ACT for parents, see our overview article published in collaboration with Italian colleagues in 2020.
Are you interested in taking part in a Navigator ACT group?
If you are interested in joining a Navigator ACT group, multiple clinics within Habilitation and Health, Region Stockholm, as well as habilitation services in other Swedish regions, offer Navigator ACT as part of routine care.
Long-Term Follow-Up and the Role of Genetic Profiles
Between 2021 and 2023, we contacted previous Navigator ACT participants to invite them to a long-term follow-up study examining the lasting benefits of the treatment. We are also investigating whether participants' genetic profiles influence treatment participation and outcomes. To this end, we ask participants to provide a saliva sample for genetic analysis. Participation in this component, as in all others, was voluntary. In the future, we hope to tailor interventions more effectively to each parent’s unique profile and circumstances. These studies are currently being summarized.
I-Navigator ACT – Internet-Based Individual Treatment
In 2020, we developed I-Navigator ACT, a web-based version of the treatment. It is delivered through the national platform for internet-based interventions, Support and Treatment (accessible via the 1177 e-health services). Participants in I-Navigator ACT engage in weekly written communication with an experienced habilitation professional.
This project involves habilitation services in Stockholm and three other Swedish regions.
Contributors from KIND
Tiina Holmberg Bergman (PhD candidate, Navigator ACT Group Research Coordinator)
Elina Renhorn (I-Navigator ACT Coordinator)
Kristiina Tammimies and Tatja Hirvikoski (Associate Professors)
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