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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

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

Results (cont.)

Methods

Objectives

Introduction

Acknowledgments

Design:A pilot study of an adapted MBSR program for parents and caregiverswith pre-/post- and 2-month post-training outcome measures including parentaland general stress (PSS and PSS10), mindfulness (MAAS), self-compassion(SCS), and psychological well-being (PWB)

Program Description:

Community-Based Participatory Research- Parentsinput 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 withsimultaneous in-group English to Spanish translation

- Discussion topics related to caregiving for individuals withdevelopmental disabilities including

- Common stressors of parents and caregivers - Per cept ion ver sus re al it y of car egi vi ng- 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

This project was made possible through funding provided by the Robert EllisSimon Foundation and the Achievable Foundation, as well as in-kind supportprovided by Westside Regional Center.

For more information, please contact Dr. Alicia Bazzano (aliciab@westsiderc.org

)or Dr. Christiane Wolf (christiane@insightla.org).

Parents and caregivers of individuals withdevelopmental disabilities experience considerable

stress, which has been linked to lower quality of life,unhealthy family functioning, negative psychologicalimpacts, and increased parenting strain 1,2,3,4,5,6,7

Few programs have addressed caregiver stress infamilies of individuals with developmental disabilities

We describe the development, delivery, andevaluation of an adapted MBSR program to

parents and caregivers in a community-basedorganization

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 andparenting 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 child s 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 child s difficulties. Journal of Intellectual Disability Research. 2003 May/Jun;47(4/5):385-399.

Conclusions

A community-based MBSR program is a feasible and potentially effectiveintervention for reducing stress and improving psychological well-being forparents and caregivers of individuals with developmental disabilities.

Additional controlled studies are needed to replicate the findings and furtherinvestigate the effect of cultural and socioeconomic factors on the outcomes ofthe intervention.

Results

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 downI 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 dealingwith my child.

I found a way to be centered in the midst of the storm of my sons manychallenging behaviors, such as self-injury, aggression, and lack of communication.

Table 1. Select demographics of MBSR participants from three classes.

Community Level Results:

Parentsparticipation as partners in this research resulted in improved ability toaddress specific needs of parents and caregivers, select appropriate evaluationtools, guide in-class discussions, and interpret and disseminate results.

Table 2. Paired t-test analysis of the effects of MBSR intervention onmindfulness, parental stress, general stress, psychological well-being, andself-compassion.

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)

Figures 1 & 2. Effects of MBSR intervention on mindfulness score andparental stress over time for fall and spring classes.

Table 3. How mindfulness affects parenting stress: a multivariate linearregression model controlling for demographics (N=55).

* = p!.05; **= p!.01

Sample Characteristics N N

Gender Race/Ethnicity

Male 15 Caucasian 21 Female 51 Hispanic 30Relationship Type African American 8 Parent 59 Other 7 Caregiver 7 Education LevelPrimary Diagnosis of Child Completed HS or less 12 Autism 36 S ome college 20 Cerebral Palsy 3 College degree 17 Down Syndrome 2 Graduate school 17Mental Retardation 13 Income Level

Other 7 $100,000 9

Mean (SD)

Age of Par icipan 45.7 (11.1)

MAASPSS

Scale Pre-test (SD) Post-test (SD) t score (p-values)

PSS 46.71 (10.07) 36.36 (9.47) 8.43 (p