Mothers are significantly more likely than all other family members to be primary caregivers for children requiring heart transplantation. Poor mental health outcomes are frequently associated with this caregiving role, as a result of the chronic stress they experience. Given that a mother’s ability to successfully cope with the demands of her caregiving role predicts positive social and health outcomes for her child, it is critical that maternal coping is clinically assessed and supported, as the failure to do so has been linked to the development of post-traumatic stress disorder. Mindfulness-Based Stress Reduction (MBSR) is proposed as one intervention that could enhance quality of life, improve distress tolerance and coping as well as reduce social isolation within this highly vulnerable population.
Aims: MBSR is a structured program that incorporates mindful meditation to reduce stress and suffering. This study will provide MBSR through a weekend retreat as an innovative approach to reduce suffering and improve coping through mindfulness skill building and peer support. This pilot study will determine: (1) the implementation effectiveness of the MBSR retreat intervention, and (2) the effectiveness of the MBSR retreat on maternal quality of life, distress tolerance, coping and perceived social support.
Methods: A total of 20 participants will be recruited from the SickKids Labatt Family Heart Centre to attend a 2.5 day MBSR retreat. Participants will include female-identifying caregivers of a paediatric heart transplant recipient who is at minimum four months post-transplant. The retreat will consist of a structured schedule of mindfulness exercises including circle sharing, deep relaxation and mindfulness skills teachings. The competencies developed in these exercises will be incorporated into other activities such as meal times, yoga and walking mediation.
A concurrent nested, mixed-method design will be employed to examine potential changes in coping styles, distress tolerance, quality of life and perceived social support following this intervention. Qualitative data will be collected through the facilitation of semi-structured focus groups held on the last day of the retreat. Quantitative data will be obtained using five standardized instruments completed by participants at three time points (24 hours prior to the retreat, 24 hours after attending the retreat and three months post-retreat). Qualitative and quantitative results will be amalgamated in order to assess the implementation and clinical effectiveness of the MBSR retreat intervention.
Funded by: The SickKids Labatt Family Heart Centre Innovation Fund