An interventional study of Mindfulness Intervention for Parents and Support and Information for Parents in Stress, sponsored by Centre for Addiction and Mental Health. Completed at 1 site in Canada. Per ClinicalTrials.gov, last updated 2016-06-07.
Sponsored by Centre for Addiction and Mental Health · Not applicable, Interventional, and Treatment
The purpose of this study is to evaluate the impact of two community based interventions for parents of adults with intellectual or developmental disabilities (IDD) who are requesting services.
The two interventions will include:
We hypothesize that:
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.
371 studies on the registry are indexed under Intellectual Disability; 104 are open to participants now.
This study's enrollment of 50 is close to the median of 52 across 239 interventional studies indexed under Intellectual Disability.
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The mindfulness intervention program incorporates the same structure as the Support and Information for Parents intervention (orientation session, six 2-hour sessions over 6 weeks, co-facilitated by two leaders) but different content. Instead of presentations by experts and open-ended discussions and peer support, sessions will offer experiential training in meditation practice (sitting meditation, gentle yoga, and walking meditation), as outlined in the MBCT Program (Segal et al., 2012). Each week, parents will be required to practice a mindfulness skill, and also participate in a "mindful parenting" exercise as homework, such as joining their child in an activity of the child's choice.
Behavioral: Mindfulness Intervention for Parents
This 6-week program includes orientation session, six 2-hour sessions, held weekly. Parents will be provided with information on existing services in the region, and strategies to be strong advocates and plan and access services for their child. Each session will include a presentation by an expert, with a question answer period, a break, and facilitated discussion with other parents. The sessions will be co-facilitated by clinicians from the Disability Services Ontario (DSO) and Centre for Addiction and Mental Health (CAMH).
Behavioral: Support and Information for Parents
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Depression Stress Anxiety Scale
The Depression, Anxiety and Stress Scale (DASS; Lovibond \& Lovibond, 1995) is a 21-item scale assessing the severity of a range of symptoms across depression, anxiety, and stress. Parents will be asked to rate each item (statement) on a 4-point Likert scale, with 0 being "did not apply to me at all" and 3 being "applied to me very much, or most of the time." Only two subscales, 7-items each, will be used: depression and stress. The DASS generates a total score for each of the two subscales.
Time frame: 21 weeks following Randomization
Family Empowerment Scale
The Family Empowerment Scale (FES; Koren et al., 1992) is a 34-item measure that assesses feelings of empowerment. The FES is comprised of 3 subscales: Family, Service System and Community/Political and responses are given on a 5-point Likert scale, with 1 being "never" and 5 being "very often." Only two subscales, 12 items each, will be used: Family and Service System.
Time frame: 21 weeks following Randomization
Five Facet Mindfulness Questionnaire-Short Form
The Five Facet Mindfulness Questionnaire- Short Form (FFMQ-SF; Bohlmeijer, et al, 2011) measures day-to-day mindfulness through 24 items on a 5-point Likert scale, with 1 being "never or very rarely true" and 5 being "very often or always true." It is commonly used in mindfulness research studies.
Time frame: 21 weeks following Randomization
Bangor Mindful Parenting Scale
The Bangor Mindful Parenting Scale (BMPS; Jones, et al., in press) is a 15-item measure that assesses mindfulness explicitly in the parenting role and was developed for parents of children with developmental disabilities in the UK. Responses are given on a 4-point Likert scale, with 0 being "never true" and 3 being "always true."
Time frame: 21 weeks following Randomization
Self-Compassion Scale-Short Form
The Self-Compassion Scale-Short Form (SCS-SF, Raes, et al., 2011) is a 12-item questionnaire that measures participant levels of self-compassion. Caregivers will be asked to rate each statement on a 5-point Likert scale, with 1 being "almost never" and 5 being "almost always."
Time frame: 21 weeks following Randomization
Positive Gains Scale
The Positive Gains Scale (PGS; Pit-ten Cate, 2003) is 7-item measure that assesses caregivers' perceptions of positive contributions their child has made to their lives. The measure utilizes a 5-point Likert scale, ranging from 1 being "strongly agree" to 5 being "strongly disagree."
Time frame: 21 weeks following Randomization
Burden Scale
The Caregiver Burden scale measures subjective feelings of caregiver burden using the 9-item burden subscale of the Revised Caregiver Appraisal Scale (Lawton, Kleban, Moss, Rovine \& Glicksman, 2000). Items measure caregiver's perception of the negative impacts caregiving has had on his or her health, well-being, social life and personal relationships. The items utilize a 5-point Likert scale ranging from 5 being "agree a lot" to 1 being "disagree a lot." Total scores range from 9 to 45, with higher scores indicating higher levels of perceived burden.
Time frame: 21 weeks following Randomization
Brief Family Distress Scale
The Brief Family Distress Scale (BFDS; Weiss \& Lunsky, 2011) measures family distress. Parents will be asked to select one of ten statements that best represents where their families are in terms of crisis. Each of the 10 statements corresponds to a number, with 0 being "no stress" and 10 being "crisis." This measure will only be given at baseline to match families on distress.
Time frame: 21 weeks following Randomization
Plan to share: No
The record gives a start of Oct 2013, a primary completion of Jul 2015 and a completion of Jul 2015. It does not say whether these dates are actual or estimated.
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This study is completed, as verified in Jun 2016. You cannot join it, but the record below documents what was studied.
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