Parent Supports Intervention Project

Parents report many positive dimensions of raising a child with IDD, yet at the same time, being a parent to an individual with IDD is associated with increased stress and poorer psychological wellbeing. Through the MAPS (see www.mapsresearch.ca) program, we have been studying the experience of parents of adults with IDD to better understand what contributes to their difficulties, and factors associated with their wellbeing. This research, combined with our recent systematic review on the experience of parents needing services, highlights the need for psychological supports to empower parents and to enhance their ability to care for their children. With the appropriate psychological supports, parents may be able to support their sons/daughters for longer. It is crucial that we invest in researching interventions and promising practices that may enhance the capacity of parents. However, limited research has considered what types of support make a difference in parental well-being.

Parent empowerment, mindfulness and psychological acceptance are key psychological variables related to positive parent outcomes, including the ability to more effectively care for others. Parent empowerment refers to active attempts to change situations through the application of knowledge and skill. Empowerment is possible when parents feel more familiar with services, and more able to advocate and plan for their child. Person directed planning, orientation to services, practical tips and planning are all helpful for empowerment. Psychological acceptance is a process that involves embracing current difficulties without actively attempting to directly change them, thus facilitating positive action in line with an individual's or family's values. Such acceptance can be particularly helpful for parents when stressful events cannot be immediately resolved or addressed.

Mindfulness is related to psychological acceptance, and is defined as the awareness that emerges through paying attention, on purpose, in the present moment, nonjudgementally to the unfolding of experience moment by moment. These latter processes may help parents preserve their emotional energy and reduce those thoughts, attitudes and judgments that can interfere with addressing their needs and the needs of their child. In this way, we expect that increasing psychological acceptance and mindfulness will facilitate parental and family empowerment. Mindfulness is an innovative support that shows particular promise because it may serve to strengthen parent capacity to care in times of stress, may fundamentally alter how parents spend time with their children, and it may help to make parents more effective advocates for their children. There is an emerging evidence base demonstrating the benefits of mindfulness and acceptance based interventions for a host of medical and psychological issues. Recent attention has been paid to teaching mindfulness to caregivers to help them with caregiving. Studies have included caregivers of patients with cancer, adults with dementia, youth with behavioural difficulties, and most recently, children with IDD.

Preliminary research from the UK and the US has demonstrated the benefits that mindfulness based interventions have on parent ability to care for their young children and youth with IDD. Singh and colleagues published case series teaching parents of children with IDD the philosophy and practice of mindfulness. These papers demonstrated that with 12 training sessions, parents reported decreases in child behaviour problems and increased parenting satisfaction. Blackledge and Hayes applied Acceptance and Commitment Therapy to a group of 20 parents of youth with autism and demonstrated significant improvement in general distress, depression, and maternal acceptance immediately following the therapy as well as 3 months later.

Most recently, Dykens and colleagues demonstrated improved mood and reductions in in a cohort of 287 parents of children with IDD participating in Mindfulness Based Stress Reduction in Tennessee, compared to parents participating in a Positive Psychology Support Program. Neece and colleagues reported similar improvements in a group of 100 parents with preschool age children with IDD in California. Most impressive in both studies was the high attendance rate of parents, attributed in part to onsite childcare. A similar group, using a modification of Mindfulness Based Cognitive Therapy (MBCT), developed by team member Zindel Segal and colleagues is currently being evaluated in Wales by team member Richard Hastings and colleagues.

We will evaluate the impact of two community based interventions for parents of adults with IDD who are requesting services. The first intervention is considered current best practice (active control), which will offer parents support and information about services to enhance parent empowerment ("support and information for parents"). This will be compared to an intervention that will target both parent empowerment and psychological acceptance/mindfulness by blending parent support with mindfulness training ("mindfulness intervention for parents"). The idea of adding a psychological intervention to a more practical intervention has been explored in mindfulness research previously and also in the parent training literature more generally. We will compare this intervention to an "active control" so that we can determine the unique contribution of the mindfulness component of the intervention.

Inclusion criteria

• Parent applied to Disability Services Ontario (DSO) Toronto Region for services for their adult child
• Adult child determined eligible for services but not yet completed the standardized assessment of need
• Child age 17.5 and up and living at home
• Parent proficient in English

Exclusion criteria

• Parent has not applied for DSO Toronto Region for services for their adult child
• Adult child determined ineligible for services
• Child age under 17.5 or not living at home
• Parent not proficient in English