A community-based MBSR program for parents and caregivers of individuals with developmental disabilities

Alicia T. Bazzano, MD, MPH1,3; Christiane Wolf, MD2; Lidia Zylowska, MD4; Steven Wang, MPH, MPP1; Christopher Barrett, MA3; Erica Schuster, BA1; Romeo Sanchez, PhD5; Danise Lehrer, LAc, LCSW1
1Westside

Regional Center, 2InsightLA, 3Health Services, UCLA, 4Mindfulness Awareness Research Center, UCLA, 5Information Sciences Institute, USC

Introduction
! Parents and caregivers of individuals with developmental disabilities experience considerable stress, which has been linked to lower quality of life, unhealthy family functioning, negative psychological impacts, and increased parenting strain 1,2,3,4,5,6,7 ! Few programs have addressed caregiver stress in families of individuals with developmental disabilities ! We describe the development, delivery, and evaluation of an adapted MBSR program to parents and caregivers in a community-based organization
Sample Characteristics Gender Male Female Relationship Type Parent Caregiver Primary Diagnosis of Child Autism Cerebral Palsy Down Syndrome Mental Retardation Other Primary Language English Spanish Age of Participant

Results
Table 1. Select demographics of MBSR participants from three classes.
N 15 51 59 7 36 3 2 13 7 44 22 Mean (SD) 45.7 (11.1) Race/Ethnicity Caucasian Hispanic African American Other Education Level Completed HS or less Some college College degree Graduate school Income Level <$25,000 $25,000-50,000 $50,001-100,000 > $100,000 N 21 30 8 7 12 20 17 17 19 16 19 9

Results (cont.)
Figures 1 & 2. Effects of MBSR intervention on mindfulness score and parental stress over time for fall and spring classes.

PSS MAAS

Objectives
! Designing an adapted MBSR program for parents and caregivers ! Assessing the effects of MBSR program on general and parenting stress, mindfulness, self-compassion, and psychological well-being immediately following the 8-week training and 2 months following the intervention

Table 3. How mindfulness affects parenting stress: a multivariate linear regression model controlling for demographics (N=55).
Model 1 B (SE) -5.0 (6.1) -3.0 (1.3)* 0.2 (3.2) referent group -0.2 (0.1) 5.7 (3.0) referent group referent group 2.4 (3.8) 4.1 (4.2) 1.3 (4.5) 0.158

Methods
Design: A pilot study of an adapted MBSR program for parents and caregivers with pre-/post- and 2-month post-training outcome measures including parental and general stress (PSS and PSS10), mindfulness (MAAS), self-compassion (SCS), and psychological well-being (PWB) Program Description: ! Community-Based Participatory Research - Parents input in planning the study, adapting the curriculum, recruiting participants, determining outcome measures, implementing the program, and reviewing results ! Recruitment - Engagement of parent leaders and active support groups - Newsletter articles targeting families and caregivers - 1-hour introductory mindfulness sessions ! 8-week adapted MBSR program - 2-hour classes and half-day retreat - 30-minute daily CD-guided practice - Morning and evening classes - Free CD players - Free childcare/respite for parents - Free taxi vouchers - English and Spanish instruction and materials with simultaneous in-group English to Spanish translation - Discussion topics related to caregiving for individuals with developmental disabilities including
- Common stressors of parents and caregivers - Perception versus reality of caregiving - Acceptance of role as caregiver - Acceptance of childs developmental disability - Mourning loss of idealized child - Fear for childs future - Mindfulness practice with child - Feeling compassion for self as caregiver

Select Quotes From Program Participants What of lasting value/importance did you gain from the program? ! A new way of looking at life and dealing with stress. A way to calm myself down I have been feeling much better and calmer with my son. ! Balance, calmness, and peace of mind for the family and the rest of my life. ! I learned to STOPStop, Take a breath, Observe, and Proceedwhen dealing with my child. ! I found a way to be centered in the midst of the storm of my sons many challenging behaviors, such as self-injury, aggression, and lack of communication. Table 2. Paired t-test analysis of the effects of MBSR intervention on mindfulness, parental stress, general stress, psychological well-being, and self-compassion.
Scale PSS PSS10 MAAS PWB SCS Pre-test (SD) 46.71 (10.07) 22.65 (6.27) 3.67 (1.00) 230.26 (31.50) 2.89 (0.68) Post-test (SD) 36.36 (9.47) 14.96 (6.57) 4.21 (0.87) 252.12 (33.94) 3.48 (0.65) t score (p-values) 8.43 (p<0.01) 8.18 (p<0.01) -4.43 (p<0.01) -6.58 (p<0.01) -8.85 (p<0.01)

(constant) Change in MAAS score Language of Program English Spanish Age at baseline Gender Male Female Parent Education Level High school degree or less Some College College degree Graduate school Adjusted R-square
* = p!.05; **= p!.01

Community Level Results: Parents participation as partners in this research resulted in improved ability to address specific needs of parents and caregivers, select appropriate evaluation tools, guide in-class discussions, and interpret and disseminate results.

PSS = Parental Stress Scale (n=58), PSS10 = Perceived Stress Scale 10-item (n=64), MAAS = Mindful Attention Awareness Scale (n=64), PWB = Psychological Well-Being scale (n=65), SCS = Self-Compassion Scale (n=65)

Acknowledgments
This project was made possible through funding provided by the Robert Ellis Simon Foundation and the Achievable Foundation, as well as in-kind support provided by Westside Regional Center. For more information, please contact Dr. Alicia Bazzano (aliciab@westsiderc.org) or Dr. Christiane Wolf (christiane@insightla.org).

Conclusions
A community-based MBSR program is a feasible and potentially effective intervention for reducing stress and improving psychological well-being for parents and caregivers of individuals with developmental disabilities. Additional controlled studies are needed to replicate the findings and further investigate the effect of cultural and socioeconomic factors on the outcomes of the intervention.

1. Mugno D, Ruta L, DArrigo VG, Mazzone L. Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes. 2007;5(22). 2. Dyson LL. Fathers and mothers of school-age children with developmental disabilities: parental stress, family functioning, and social support. American Journal on Mental Retardation. 1997 November;102:267-279. 3. Schieve LA, Blumberg SJ, Rice C, Visser SN, Boyle C. The relationship between autism and parenting stress. Pediatrics. 2007;119:S114-S121. 4. McKinney B, Peterson RA. Predictors of stress in parents of developmentally disabled children. Journal of Pediatric Psychology. 1987;12(1):133-150. 5. Emerson E. Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the childs difficulties. Journal of Intellectual Disability Research. 2003 May/June;47(4/5):385-399. 6. McKinney B, Peterson RA. Predictors of stress in parents of developmentally disabled children. Journal of Pediatric Psychology. 1987;12(1):133-150. 7. Emerson E. Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the childs difficulties. Journal of Intellectual Disability Research. 2003 May/Jun;47(4/5):385-399.