Self-Management Support Intervention for Parents of Children with Developmental Disorders: The Role of Gratitude and Hope

Journal of Child and Family Studies https://doi.org/10.1007/s10826-018-01308-1 ORIGINAL PAPER Self-Management Support Intervention for Parents of Children with Developmental Disorders: The Role of Gratitude and Hope Faith Martin 1 ● Wendy Clyne2 Gemma Pearce2 Andy Turner2 ● ● 1234567890();,: 1234567890();,: © The Author(s) 2019 Abstract Objectives Many parents of children with developmental disabilities, including autism spectrum disorders and attention deficit disorders, experience poor well-being and increased anxiety and depression. Very few interventions directly target parents’ needs. The peer-delivered HOPE Programme was designed to address this with six weekly group sessions focusing on self-management skills, including goal setting and expressing gratitude. Methods This pre-post study aimed to examine changes in anxiety, depression, well-being, hope and gratitude, and to explore associations between changes in anxiety and depression and changes in gratitude and hope. Validated measures of depression, anxiety, positive well-being, gratitude and hope were used. Parents of children with a range of developmental disabilities, most commonly autism spectrum disorders, were recruited. Results Of 137 (86.9% female) recruited, 108 parents completed the course and post-course data. Parents’ depression, anxiety, well-being, gratitude and hope all significantly improved between baseline and post-course. Hope and gratitude correlated significantly with depression, anxiety and well-being. Baseline depression, baseline gratitude, post-course hope and gratitude explained 50% of the variance in post-course depression. Reduced work hours, and baseline and post-course hope and gratitude explained 40% of the variance in post-course well-being. Anxiety was not associated to hope nor gratitude at either time point. Conclusions This study provides initial support for feasibility and potential effect of the peer delivered self-management intervention on parental anxiety and depression. Changes in gratitude and hope account for some change in depression, but not anxiety. A randomised controlled trial is needed to establish efficacy and explore mechanisms of change in-depth. Keywords Autism spectrum disorders Parents Self-management Well-being Developmental disability ● ● Research has documented elevated levels of parental stress and distress experienced by parents raising children with developmental disorders (DD) or disabilities, such as autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), or other learning disabilities (Gordon and Hinshaw 2015; Hassall and Rose 2005; Hayes and Watson 2013; Johnston and Mash 2001). There are some specific differences between stressors reported by parents of children with different DD. For example, ADHD has been linked to greater attachment difficulties than ASD (Miranda * Andy Turner 1 Department of Psychology, University of Bath, Bath, UK 2 Centre for Advances in Behavioural Science, Coventry University, Coventry, UK ● ● et al. 2015). However, there are several shared features among the stressors described by parents of children with various DD (Gupta 2007). These parents are typically managing more challenging behavior than parents of children without these conditions (Hall and Graff 2012). They may also be faced with social challenges, such as lower social support (perceived or objectively measured; Heiman and Berger 2008), and stigmatizing attitudes from others owing to their child’s behavior (Kinnear et al. 2016). Whilst many parents cope well with these demands, some experience clinically significant levels of anxiety and/or depression (Falk et al. 2014; Weiss 2002). Given the reciprocal relationship between parental and child distress (Herring et al. 2006), it is important to address parental distress for the parents and wider family. As with all parents, parents of children with ASD and other DD employ a variety of coping strategies, including seeking social support from those in similar situations, Journal of Child and Family Studies using formal support from health and social care services, and engaging in reframing and positive reappraisals (Twoy et al. 2007). To manage stress, some parents seek out peer support groups, for greater emotional support and social resources (Clifford and Minnes 2013). Peer delivered selfmanagement interventions, focusing on improving an “individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition” (Barlow et al. 2002, p. 178), are effective in a range of conditions including improving mental health (Cyhlarova et al. 2015). These approaches may be of use, but have not yet been tried with parents with children with DD. There are few interventions that address parental mental health and well-being for those with children with DD such as ASD (Da Paz and Wallander 2017; Dababnah and Parish 2016). Interventions often focus on improving parenting strategies (Dababnah and Parish 2015) or directly attempting to address child outcomes (Bibby et al. 2002). Whilst these approaches may achieve a positive impact on the family, they do not address parental well-being directly (Dababnah and Parish 2015). It is often assumed that changes in child behaviour will lead to shifts in parental well-being (Karst and Van Hecke 2012). There is a gap in interventions adressing parental mental health and well-being, and few interventions that address social support for these parents (Krakovich et al. 2016). A recent literature review identified only thirteen interventions for mental health of parents/carers of children with ASD, with insufficient evidence to comment on their efficacy for addressing a range of parental well-being outcomes (Da Paz and Wallander 2017). Mindfulness based interventions, emotional writing, and acceptance commitment therapy interventions demonstrated medium effect sizes on parental well-being, including measures of stress and depression. Some of these interventions were self-adminstered, which may not address the sense of isolation and lack of peer support that many parents with children with DD experience (Ekas et al. 2016). Of note was an RCT that used peer mentors and tested a positive psychology based intervention using experiental exercises that included gratitude and optimism over 6 weeks of group sessions (Dykens et al. 2014). Post-intervention distress, depression and anxiety scores were all significantly reduced compared to baseline. It is not clear if this intervention is effective at reducing distress where depression or anxiety are at clinically significant levels. Many of these intervention require highly skilled and trained staff or require intensive training for peer-tutors. For example, the positive psychology based intervention entailed a four month training programme (Dykens et al. 2014). This increases costs and therefore potential barriers to implementat (...truncated)