Effectiveness of a web-based Acceptance and Commitment Therapy intervention for wellbeing of parents whose children have chronic conditions: A randomized controlled trial

Highlights

• Parents of children with chronic conditions can benefit from an ACT web intervention.

• The web-based ACT intervention decreased symptoms of burnout and depression.

• The intervention improved skills of mindfulness and cognitive defusion.

• Improvement was maintained at 4-month follow-up.

Introduction

Parents of children with a chronic condition or functional disability have an increased risk of stress-related problems and reduced quality of life (Anclair, Hoven, Lannering, & Boman, 2009; Boman, Viksten, Kogner, & Samuelsson, 2004; Lindström, Åman, & Norberg, 2010a; Whalen, Odgers, Reed, & Henker, 2011). The child's chronic condition or functional disability can increase parents' worries and stress in everyday life. This can lead into chronic stress reaction and burnout syndrome (Appels & Schouten, 1991; Melamed, Kushnir, & Shirom, 1992; Toker, Shirom, Shapira, Berliner, & Melamed, 2005). Moreover, several studies have reported other psychological problems such as elevated levels of depressive and anxiety symptoms among parents of children with chronic conditions (Chronis et al., 2003). Such mental health problems can negatively impact parental practices and family functioning (Elgar, McGrath, Waschbusch, Stewart, & Curtis, 2004; Kim-Cohen, Moffitt, Taylor, Pawlby, & Caspi, 2005; Witt & DeLeire, 2009). Therefore, parents of children with a chronic condition could benefit from treatments that provide them tools to handle difficult inner experiences that are evoked when facing challenges and hardships related to parenting a child with a chronic condition.

Web-based treatments offer a solution for delivering evidence-based psychological treatments for this group, 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 (Cuijpers, Van Straten, & Andersson, 2008), including parental wellbeing (Hall & Bierman, 2015). Advantages of web-based interventions are that they are not bound by time and place. They are available when most needed and enable flexible integration of the intervention into everyday life. For this very reason, online delivery modalities may be an ideal vehicle for sustainable treatment delivery to support wellbeing of parents whose children need extra care and assistance and who thus may have reduced capacity to access traditional forms of support.

One treatment approach that is widely applied to web-based programs is Acceptance and Commitment Therapy (ACT) (Brinkborg, Michanek, Hesser, & Berglund, 2011; Lappalainen et al., 2014; Levin, Haeger, Pierce, & Twohig, 2017). ACT incorporates non-judgmental attention to moment to moment experience, experiential acceptance of psychological events, such as difficult emotions, cognitions, and memories, and engagement in meaningful, value-driven activities. Promising results of web-based ACT interventions have been found, for example, for stress (Brinkborg et al., 2011), anxiety (Levin et al., 2017), chronic pain (Buhrman et al., 2013), and depression (Lappalainen et al., 2014; Lappalainen, Langrial, Oinas-Kukkonen, Tolvanen, & Lappalainen, 2015; Levin, Pistorello, Seeley, & Hayes, 2014).

To our knowledge, ACT-based web interventions for parents have just recently started to be investigated (Whittingham, Sheffield, & Boyd, 2016), and no studies have yet investigated the effectiveness of these interventions. However, parenting and parental stress have been identified as an important focus of ACT (Blackledge & Hayes, 2006; Coyne, McHugh, & Martinez, 2011) and other mindfulness-based treatments (Anclair, Lappalainen, Muotka, & Hiltunen, 2018; Neece, 2014). For example, studies that have investigated mindfulness-based programs for parents of children with autism spectrum disorder have found that these programs reduce parental stress, anxiety, and depression, as well as improve sleep, global health, wellbeing, and life satisfaction (e.g., (Dykens, Fisher, Taylor, Lambert, & Miodrag, 2014; Ferraioli & Harris, 2013; Neece, 2014). An ACT-integrated parenting intervention for families of children with cerebral palsy showed increased child functioning and quality of life and decreased parental psychological symptoms (Whittingham, Sanders, McKinlay, & Boyd, 2015). Another pilot study investigated the effects of an ACT intervention combined with problem solving skills training for parents of children diagnosed with a life-threatening illness, and the results showed significant reductions in post-traumatic stress symptoms and improvements in parental psychological flexibility and mindfulness (Burke et al., 2014). These findings indicate that ACT-based approaches are suitable for supporting the wellbeing of parents of children with chronic conditions.

The clinical target of ACT – psychological flexibility, defined as the ability to persist or change one's own behavior in the service of chosen values, while being aware of the situational context and the own present-moment experience (Hayes, Luoma, Bond, Masuda, & Lillis, 2006) – seems to fit well for the demands of parenting. Psychological flexibility has been linked to psychological symptoms, parental burden, and stress for low income families, parents of preterm infants, and children with various disabilities (Evans, Whittingham, & Boyd, 2012; Lloyd & Hastings, 2008; Weiss, Cappadocia, MacMullin, Viecili, & Lunsky, 2012; Whittingham, Wee, Sanders, & Boyd, 2013). Furthermore, parental psychological flexibility appears to mediate the relationship between problem behaviors in children and mental health problems in parents of children with autism spectrum disorders (Weiss et al., 2012). In addition, a 2-day ACT workshop for parents of children with autism spectrum disorders reduced distress of parents, with indications that improvement in psychological flexibility acted as a process of change (Blackledge & Hayes, 2006). Consequently, targeting psychological flexibility may be an important focus for intervention in parents experiencing distress.

The aim of the current study was to examine the effect of a web-based ACT intervention on burnout and psychological symptoms and processes in parents of children with chronic conditions. Effects were investigated during the intervention and at a 4-month follow-up. More precisely;

• The primary aim was to examine the effect of a web-based ACT intervention vs. control (waitlist) on burnout and psychological symptoms of depression, anxiety and stress.

• A secondary aim was to examine the effect of the intervention on psychological processes that are targeted in ACT, i.e., psychological flexibility including experiential avoidance (EA), mindfulness skills, and cognitive fusion.