Web-based ACT to Support Parents With Children With Chronic and Developmental Conditions
Condition: Burnout Syndrome; Psychological Distress; Depressive Symptoms; Quality of Life
MeSH terms: Depression; Burnout, Psychological
Study type: Interventional

Summary: 
      Parents of children with a chronic disease or functional disabilities have an increased risk
      of stress-related distress and reduced quality of life. Internet-delivered interventions are
      one way to reach out to exhausted parents who may often have challenges in finding time to
      access face-to-face services. We developed a guided web-based Acceptance and Commitment
      Therapy intervention for Finnish parents of children with chronic conditions or functional
      disabilities. Participants (N=100) will be recruited on parent associations' Facebook groups
      and randomly assigned to guided web-based ACT condition and a control condition receiving
      psychoeducation. The guided web-based ACT condition will receive a 10-week web intervention
      including three remote meetings with a psychologist through the telemedicine application
      Doxy.me. Symptoms of burnout (SMBQ), depression (PHQ), health-related quality of life
      (RAND-36), mindfulness (FFMQ), general measure of psychological flexibility (CompACT) as well
      as the wellbeing of their child (KINDL) will be measured before (pre) and after the
      intervention (post), at 7-month (follow-up 1) and 10-month (follow-up 2) after the
      pre-measurement. In this randomized controlled trial we will investigate the outcomes and the
      mechanisms of change of the web-based ACTintervention. In addition, we will examine the
      acceptability of the web-based intervention.
    

Detailed description: 
      Numerous studies have shown that parents of children with long-term and intellectual
      disabilities suffer more often from symptoms such as stress, anxiety and depression symptoms,
      feelings of uncertainty and fear, and loss of quality of life. In Finland, there are
      approximately 17.000 families where the illness or disability of a child under the age of 16
      causes an extra daily burden for parents. Especially mothers of long-term or disabled
      children are vulnerable and have an increased risk of psychological symptoms. Parents of
      children with a chronic disease or functional disability also have an increased risk of
      stress-related distress and reduced quality of life. Prolonged psychological symptoms
      associated with caring for a child with a long-term illness can expose to chronic exhaustion
      and burnout, which can have serious health effects. The birth of a disabled child and the
      illness of a child with long-term illness also increases the risk of divorce in the family.
      Considering the hardship and challenges of this population group, special attention should be
      paid to their rehabilitation and access to services.

      In Finland, for example, the Finnish Social Insurance Institution offers adaptation training
      and family-oriented rehabilitation courses for family caregivers. However, this form of
      support has limited availability and, on the other hand, is of relatively short duration.
      Several studies indicate, however, that the parents' mental health also affects the health
      and development of the child, and especially the long-term stress experienced by the parent
      can be harmful to children. The challenge is to motivate parents to take care of themselves
      and thus to have a better capacity to care for their children in need of special support. The
      majority of parents have a full-time employment, which also poses challenges for the forms of
      support. Therefore, the support of this parent group should focus on treatments that are
      easily available for them.

      Web-based treatments offer one solution for delivering evidence-based psychological
      treatments for this distressed parents, who may often have challenges in finding time to
      access face-to-face services. Web-based interventions have been developed and tested for a
      wide range of health problems, including parental wellbeing. Advantages of web-based
      interventions are that they are not bound to time and place. They are available when most
      needed and enable integration of the intervention in everyday life.

      Acceptance and commitment therapy (ACT) represents the third-wave of Cognitive Behavioral
      Therapies and incorporates mindfulness, experiential acceptance, and valued action (e.g.,
      engagement in meaningful, values-driven activities) to promote psychological flexibility.
      Several studies and meta-analyses have shown that acceptance and commitment therapy has a
      positive effect on a variety of psychological symptoms. Promising results from web-based ACT
      interventions have been obtained for example for the treatment of stress, anxiety, and
      depression. ACT and other mindfulness-based treatments have been shown to improve
      psychological adjustment and to decrease stress in parents of children with developmental
      disabilities including autism and acquired brain injury.

      The aim of the current study is to investigate the effectiveness of a web-based ACT
      intervention on wellbeing of parents with exhaustion and burnout symptoms, and whose children
      have chronic conditions and/or developmental disabilities. Effects will be investigated at
      before (pre) and after the intervention (post), at 7-month (follow-up 1) and 10-month
      (follow-up 2) after the pre-measurement. The research questions are the following:

        1. Does the guided acceptance and commitment-based online intervention decrease the burnout
           and depression symptoms of parents of children with long-term illnesses and improve
           their quality of life, psychological flexibility, mindfulness skills, and cognitive
           strategies?

        2. Which psychological processes (i.e., psychological flexibility, mindfulness skills,
           cognitive strategies) act as mediators of change?

        3. Do the changes in the well-being of the parents improve the quality of life of the
           child?

        4. How do parents experience online intervention and what kind of parent group especially
           will benefit from online support?
    

Intervention name(s): Internet-based ACT intervention; Psychoeducation
Intervention type(s): Behavioral; Behavioral
Intervention description(s): The Internet-based ACT intervention included a 10-week web-based program consisting of five modules with different themes that the participants were instructed to process during the course of two weeks. The program was based on the processes of ACT and included themes such as life values, mindfulness, defusion, self-as-context acceptance and self-compassion. The content of each module consisted of text, video, exercises with audio files, and homework assignments. In addition, the participants filled in a diary with exercises in paper format. The intervention included also three remote meetings (à 45 minutes) via a videoconferencing tool doxy.me conducted by a psychologist. The remote meetings took place at the beginning, after 4 weeks, and at the end of the intervention.; The psychoeducation group received a self-help booklet and a link to a web-based wellness training program. The program included exercises with MP3 audio files. No personal support during the 10-week intervention was provided.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: None (Open Label)
Primary purpose: Treatment
Keywords: Parents, burnout, parental distress, Internet-based, ACT