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Pilot Evaluation of a Facebook Group Self-Care Intervention for Primary Caregivers of Children with Developmental Disabilities

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Abstract

The current exploratory study sought to develop and pilot a Facebook-delivered health-promoting self-care intervention for caregivers of children with developmental disabilities (DD). Survey and focus group methods were used to gain information about the participation of caregivers of children with DD in existing Facebook support groups and their experiences related to stress, self-care, and social support that would aid in intervention development. Results were used in concert with existing guidance to determine the content and targets of the intervention. Caregivers were recruited to participate in a Facebook group-delivered intervention focused on broad areas of self-care including physical health, psychological health, social health, and work health. The Facebook group-delivered intervention, designed to target these identified areas using social support, was piloted over an 8-week period with caregivers of children with DD. Across all variables, differences from pretest to posttest were statistically significant, with small to large effect sizes.

Highlights

  • This study adds to the literature on specific challenges faced by primary caregivers of children with DD in supporting their own self-care.

  • This study provides information about a pilot of a Facebook-delivered intervention to support the self-care of primary caregivers of children with DD.

  • Caregivers of children with DD perceived this new intervention as acceptable, feasible, and understandable.

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Acknowledgements

Special thanks are provided to Dr. Melissa Bray and Dr. Mary Beth Bruder for their support and guidance in preparing this work and to Hannah Perry and Alyssa Bunyea for their assistance with data collection.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

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Authors

Corresponding author

Correspondence to Emily A. Iovino.

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Conflict of Interest

The authors declare no competing interests.

Ethical Approval

All procedures performed in this study involving human participants were in accordance with the ethical standards of the University of Connecticut Institutional Review Board and with the ethical principles found in the Belmont Report and codified in “The Common Rule” set out in 45 CFR 46, subpart A, as well as subparts B-D of 45 CFR 46.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

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Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Appendix A. Intervention Plan

Appendix A. Intervention Plan

Week

Topics Covered and Example Posts

1

Self-care education: preparing for self-care through increasing health literacy; setting realistic short-term goals

Example Researcher Post: These are general definitions for the 6 broad self-care areas. These are definitely not all-encompassing but serve as a starting point for you to think about your successes and challenges with self-care! In talking to parents/caregivers, some important areas they felt were not represented in this include finances/money and spirituality. Do you agree, or have other areas in your life that you feel are not represented here?

Example Resource: https://drive.google.com/file/d/1zjr7HwwK_r7-RSF1DSCEBtziW6rT6lgJ/view

2

Identifying current strengths, identifying areas for improvement; introduction to self-care skills

Example Researcher Post: What are your self-care strengths? We all have strengths, and it is important to recognize and celebrate them! Can you use any of your strengths to help combat the barriers you identified?

Example Resource: https://drive.google.com/file/d/17EBNt-BszvTaVTXIbLNzN1NGFkHUb-Oc/view?usp=sharing

3

Self-care for physical health: skills related to exercise, nutrition, and sleep

Example Researcher Post: What do you do to incorporate physical activity into your life?

Example Resource: https://www.cdc.gov/chronicdisease/resources/infographic/physical-activity.htm

4

Stress management and health; introduction to stress, depression, and anxiety

Example Researcher Post: Here are some strategies that you can use to reduce symptoms of stress and anxiety. Do you use any of these or have other strategies you like to use?

Example Resource: https://adaa.org/tips-manage-anxiety-and-stress

5

Mindfulness; relaxation techniques (progressive muscle relaxation, guided imagery, deep breathing); enhancing coping skills

Example Researcher Post: Rutgers University Robert Wood Johnson Medical School published an alphabet of stress management and coping skills that can serve as a menu of actions you can take to better cope with stress.

Example Resource: http://rwjms.rutgers.edu/departments_institutes/cf_center/documents/Alphabet-of-Coping-Skills-Interventions.pdf

6

The importance of a support network; building and repairing relationships; asking for help; using your support network to help achieve your goals

Example Researcher Post: Why is social support so important and how can it benefit you?

Example Resource: https://www.apa.org/helpcenter/emotional-support

7

Work and play: goals and skills to maintain a balance between what you HAVE to do and what you WANT to do

Example Researcher Post: Here is a great article with information about why “play” is important for adults, what it might look like, and how to make time for it. How do you incorporate play into your life?

Example Resource: https://www.brighterpathcounseling.com/importance-of-play-for-adults/

8

Identify long-term goals and objectives; planning for continued support and progress

Example Researcher Post: The Family Caregiver Alliance website has a number of helpful resources for supporting yourself and the person for whom you are providing care. All of the content is not necessarily geared towards parents of children and adolescents, but the National Center on Caregiving has information about supports for caregivers in all 50 states:

Example Resource: https://www.caregiver.org/national-center-caregiving

Adapted from Pender et al. (2015).

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Iovino, E.A., Chafouleas, S.M., Sanetti, L.M.H. et al. Pilot Evaluation of a Facebook Group Self-Care Intervention for Primary Caregivers of Children with Developmental Disabilities. J Child Fam Stud 30, 2468–2480 (2021). https://doi.org/10.1007/s10826-021-02047-6

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  • DOI: https://doi.org/10.1007/s10826-021-02047-6

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