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Caregivers of Children with Developmental Disabilities: Exploring Perceptions of Health-Promoting Self-Care

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Abstract

Primary caregivers of children with developmental disabilities encounter unique challenges that can affect their overall health and well-being. This pilot study sought to explore the definitions of and experiences with health-promoting self-care in primary caregivers of children with developmental disabilities. Thirteen primary caregivers of children with developmental disabilities ranging in age from 3 to 21 years participated in a semi-structured interview to explore their health-promoting self-care, their current and future goals for health and wellness, and their interest in use of technology to facilitate self-care. Across participant responses, 10 themes emerged overall. The following number of themes emerged within each general topic area: general assessment of health and well-being (n = 2); personal assessment of self-care behaviors (n = 3); defining features of health and well-being categories (n = 2); top endorsed health-promoting needs (n = 1); and technologies to support self-care (n = 2). Findings demonstrated commonalities across the experiences of caregivers in some domains. However, caregivers also endorsed differing barriers and needs for support across areas affecting personal health and well-being. Results provide support for further investigation into the utility of interventions to promote caregiver self-care for their health and well-being, particularly in the area of social support.

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References

  • Acton, G. J. (2002). Health-promoting self-care in family caregivers. Western Journal of Nursing Research, 24, 73–86.

    Article  PubMed  Google Scholar 

  • Bazzano, A., Wolfe, C., Zylowska, L., Wang, S., Schuster, E., Barrett, C., & Lehrer, D. (2015). Mindfulness based stress reduction (MBSR) for parents and caregivers of individuals with developmental disabilities: a community-based approach. Journal of Child and Family Studies, 24, 298–308.

    Article  Google Scholar 

  • Beach, S. R., Schulz, R., Yee, J. L., & Jackson, S. (2000). Negative and positive health effects of caring for a disabled spouse: longitudinal findings from the caregiver health effects study. Psychology and Aging, 15, 259–271. https://doi.org/10.1037/0882-7974.15.2.259.

    Article  PubMed  Google Scholar 

  • Boyle, C. A., Boulet, S., Schieve, L. A., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., Visser, S., & Kogan, M. D. (2011). Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics, 127(6), 1034–1042.

    PubMed  Google Scholar 

  • Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71, 195–207.

    Article  Google Scholar 

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.

    Article  Google Scholar 

  • Burke, M. M., Lee, C. E., & Rios, K. (2019). A pilot evaluation of an advocacy programme on knowledge, empowerment, family-school partnership, and parent well-being. Journal of Intellectual Disability Research. https://doi.org/10.1111/jir.12613.

  • Cantwell, J., Muldoon, O. T., & Gallagher, S. (2014). Social support and mastery influence the association between stress and poor physical health in parents caring for children with developmental disabilities. Research in Developmental Disabilities, 35, 2215–2223.

    Article  PubMed  Google Scholar 

  • Carroll, D. W. (2013). Families of children with developmental disabilities: Understanding stress and opportunities for growth. Washington, DC: American Psychological Association.

    Book  Google Scholar 

  • Casey, A. E., & Foundation. (2017). Trauma systems therapy for Foster Care (TST-FC) [module four facilitator guide]. Baltimore: Annie E. Casey Foundation Retrieved from http://www.aecf.org/m/resourcedoc/AECF-M4-GeneratingSignalsSafety-TST-FC-2017.pdf.

    Google Scholar 

  • Family Caregiver Alliance (2012). Selected caregiver assessment measures: A resource inventory for practitioners (2nd Ed). Retrieved from https://www.caregiver.org/sites/caregiver.org/files/pdfs/SelCGAssmtMeas_ResInv_FINAL_12.10.12.pdf.

  • Gallagher, S., & Hannigan, A. (2014). Child problem behaviours are associated with obesity in parents caring for children with developmental disabilities. Research in Developmental Disabilities, 36, 358–365.

    Article  Google Scholar 

  • Gallagher, S., & Whiteley, J. (2012). Social support is associated with blood pressure responses in parents caring for children with developmental disabilities. Research in Developmental Disabilities, 33, 2099–2105.

    Article  PubMed  Google Scholar 

  • Gallagher, S., Phillips, A. C., Lee, H., & Carroll, D. (2010). Parental stress is associated with poor sleep quality in parents caring for children with developmental disabilities. Journal of Pediatric Psychology, 35, 728–737.

    Article  PubMed  Google Scholar 

  • Goudie, A., Nacisse, M., Hall, D. E., & Kuo, D. Z. (2014). Financial and psychological stressors associated with caring for children with disability. Family, Systems, and Health, 32, 280–290. https://doi.org/10.1037/fsh0000027.

    Article  Google Scholar 

  • Hemmingsson, H., Stenhammar, A. M., & Paulsson, K. (2009). Sleep problems and the need for parental night-time attention in children with physical disabilities. Child: Care, Health and Development, 35, 89–95.

    Google Scholar 

  • Jeynes, W. H. (2015). A meta-analysis on the factors that best reduce the achievement gap. Education and Urban Society, 47, 523–554.

    Article  Google Scholar 

  • Khanna, R., Jariwala, K., & Bentley, J. (2013). Health utility assessment using EQ-5D among caregivers of children with autism. Value in Health, 16, 778–788.

    Article  PubMed  Google Scholar 

  • Lach, L. M., Kohen, D. E., Garner, R. E., Brehaut, J. C., Miller, A. R., Klassen, A. F., & Rosenbaum, P. L. (2009). The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disability and Rehabilitation, 31, 607–618.

    Article  PubMed  Google Scholar 

  • Lindo, E. J., Kliemann, K. R., Combes, B. H., & Frank, J. (2016). Managing stress levels of parents of children with developmental disabilities: A meta-analytic review of interventions. Family Relations, 65, 207–224.

    Article  Google Scholar 

  • McGill, P., Papachristoforou, E., & Cooper, V. (2006). Support for family carers of children and young people with developmental disabilities and challenging behavior. Child: Care, Health and Development, 32, 159–165.

    Google Scholar 

  • Miodrag, N., & Hodapp, R. M. (2010). Chronic stress and health among parents of children with intellectual and developmental disabilities. Current Opinion in Psychiatry, 23, 407–411.

    Article  PubMed  Google Scholar 

  • Mörelius, E. & Hemmingsson, H. (2013). Parents of children with physical disabilities – perceived health in parents related to the child's sleep problems and need for attention at night. Child: care, health, and development, 40, 412-418. https://doi.org/10.1111/cch.12079

  • Najman, J. M., Williams, G. M., Nikles, J., et al. (2000). Mothers’ mental illness and child behavior problems: Cause-effect association or observation bias? Journal of the American Academy of Child and Adolescent Psychiatry, 39, 592–602.

    Article  PubMed  Google Scholar 

  • National Center on Birth Defects and Developmental Disabilities & CDC. (2017). Specific conditions. Developmental Disabilities Homepage. Retrieved from https://www.cdc.gov/ncbddd/developmentaldisabilities/specificconditions.html

    Google Scholar 

  • Pagoto, S., Waring, M. E., May, C. N., Ding, E. Y., Kunz, W. H., Hayes, R., & Oleski, J. L. (2016). Adapting behavioral interventions for social media delivery. Journal of Medical Internet Research, 18. https://doi.org/10.2196/jmir.5086.

  • Pearson, J. (2016). From parents to teachers: Supporting African American families of students with autism. DADD Express, 27(1), 8.

    Google Scholar 

  • Pearson, J. N., & Meadan, H. (2018). African American parents’ perceptions of diagnosis and services for children with autism. Education and Training in Autism and Developmental Disabilities, 53, 17–32.

    Google Scholar 

  • Pender, N. J., Murdaugh, C. L., & Parsons, M. (2015). Health promotion in nursing practice (7th ed.). Upper Saddle River: Pearson.

    Google Scholar 

  • Pinquart, M., & Sorensen, S. (2007). Correlates of physical health of informal caregivers: A meta-analysis. Journal of Gerontology: Psychological Sciences and Social Sciences, 62, 126–137.

    Article  Google Scholar 

  • Prochaska, J. O., & DiClemente, C. C. (1984). The transtheoretical approach: Crossing traditional boundaries of therapy. Homewood: Dow Jones-Irwin.

    Google Scholar 

  • Prochaska, J. O., DiClemente, C. C., & Norcross, J. C. (1992). In search of how people change. Applications to addictive behaviors. American Psychologist, 47, 1102–1114.

    Article  Google Scholar 

  • Raver, S. A., Michalek, A. P. M., & Gillespie, A. M. (2011). Stressors and life goals of caregivers of individuals with disabilities. Journal of Social Work in Disability and Rehabilitation, 10, 115–128. https://doi.org/10.1080/1536710X.2011.571536.

    Article  PubMed  Google Scholar 

  • Ray, R. A., & Street, A. F. (2006). Caregiver bodywork: Family members’ experiences of caring for a person with motor neurone disease. Issues and Innovations in Nursing Practice, 56, 35–43.

    Google Scholar 

  • Schor, E. L. (2003). Family pediatrics: Report of the task force on the family. Pediatrics, 111, 1541–1571.

    PubMed  Google Scholar 

  • Schulz, R., & Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. The American Journal of Nursing, 108, 23–27. https://doi.org/10.1097/01.NAJ.0000336406.45248.4c.

    Article  PubMed  PubMed Central  Google Scholar 

  • Stringer, H. (2017). Lessons for caregiving. APA Monitor on Psychology February, 2017, 40–45.

    Google Scholar 

  • World Health Organization. (2012). Health education: theoretical concepts, effective strategies and core competencies: A foundation document to guide capacity development of health educators. Regional Office for the Eastern Mediterranean. Cairo: World Health Organization.

    Google Scholar 

  • Zablotsky, B., Black, L. I., Maenner, M. J., Schleve, L. A., & Blumberg, S. J. (2015). Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2015 National Health Interview Survey. National Health Statistics Reports, 87, 1–20.

    Google Scholar 

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Funding

This research was supported by funding from the University of Connecticut.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Sandra M. Chafouleas.

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Conflict of interest

The authors declare that they have no conflict of interest.

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, 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 and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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

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Semi-structured Interview Protocol

Semi-structured Interview Protocol

  1. 1.

    Describe your daily experience in caring for a child with a developmental disability. Take me through a typical day caring for your child – identifying any situations that can be particularly easy or challenging, such as morning routine, getting to school, meals, or bedtime.

Interview probes:

  • Make sure full day is mentioned in description.

  • Are there typical activities you can’t do – like going to stores, taking trips?

  1. 2.

    Describe your biggest challenges associated with being a caregiver. For example, are there particular situations, activities, or events that are especially burdensome or stressful?

Interview probes:

  • Could be specific to child or broad concerns (e.g. financial, no one to help me provide care so have to miss work)

  • If child specific, ensure descriptions include appropriate reference to intensity, frequency, and/or duration around events (e.g. how loud/destructive is the tantrum? How often does it occur? How long does it last?).

  • If child specific, attempt to provide some balance positive aspects as well as negative (e.g. are there things that go well? How do these activities differ from challenging routines?)

  1. 3.

    Now I want to talk about your personal health and well-being. Think broadly – including physical, social, emotional, financial… any area that you associate with health and well-being.

    1. a.

      To begin, what do health and well-being mean to you?

Interview probe: make sure response covers both health and well-being aspects

  1. b.

    Tell me what you think are important pieces to self-care for health and well-being.

  1. 4.

    Now that we have defined what you mean by well-being and self-care, I want to ask about your self-care.

    1. a.

      How important is your self-care? For example, how do you prioritize your health-promoting self-care amongst your daily activities?

    2. b.

      Now describe your health-promoting self-care behaviors. Tell me what you believe you do best, … could do better… don’t do well at all.

  2. 5.

    We have identified six areas associated with health and well-being. I am going to list each one - I want you to think about what the term means to you, and tell me how it does/does not relate to your well-being and behaviors you might engage with.

    Interview direction: For each of the following areas, ask the participant to give a definition of what the term means to him/her. Then, have think about their ideal goal in that area and rate how well he/she is doing as compared to their ideal goal.

EAT

Our first term is “eat”. How would you define “eat” in relation to health and well-being?

Describe your ideal health goal related to “eat”.

How would you rate your current self-care in this area? Would it be at goal, almost at goal, or far from goal? Why?

SLEEP

Our second term is “sleep”. How would you define “sleep” in relation to health and well-being?

Describe your ideal health goal related to “sleep”.

How would you rate your current self-care in this area? Would it be at goal, almost at goal, or far from goal? Why?

WORK

Our next term is “work”. How would you define “work” in relation to health and well-being?

Describe your ideal health goal related to “work”.

How would you rate your current self-care in this area? Would it be at goal, almost at goal, or far from goal? Why?

PLAY

Our fourth term is “play”. How would you define “play” in relation to health and well-being?

Describe your ideal health goal related to “play”.

How would you rate your current self-care in this area? Would it be at goal, almost at goal, or far from goal? Why?

LOVE

Our next term is “love”. How would you define “love” in relation to health and well-being?

Describe your ideal health goal related to “love”.

How would you rate your current self-care in this area? Would it be at goal, almost at goal, or far from goal? Why?

LEARN

Our last term is “learn”. How would you define “learn” in relation to health and well-being?

Describe your ideal health goal related to “learn”.

How would you rate your current self-care in this area? Would it be at goal, almost at goal, or far from goal? Why?

  1. 6.

    So we have noted eat, play, work, play, love, and learn. Take a minute to think about health and well-being. Are there other areas that you add, or would you subtract any of the areas we identified?

  2. 7.

    Now I want you to rank order all of the areas we just discussed with regard to concern about your self-care – with one being the most concerning to you, and then six being the least concerning to you personally. As a reminder, the six areas we identified included: eat, sleep, work, play, love, and learn

In addition, you identified: [Fill in any additional responses].

Across all, which do you identify of most concern to your self-care… [and so on until list exhausted.]

  1. 8.

    Now let’s talk about those strategies or resources do you currently use (if any) in promoting your self-care?

    If participant needs examples… talk with friends, support group with others, weight watchers, gym membership, religion, home cooking.

  2. 9.

    Do you use any sort of technology to assist you with self-care and/or monitoring your health behaviors? For example, online programs or websites, activity trackers, health apps…

    Interview probe: If any have been identified, ask which have been most/least successful and why.

  3. 10.

    Do you have interest in increasing use of technology to promote your self-care? Why or why not? And what types – and for which areas of health and well-being?

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Chafouleas, S.M., Iovino, E.A. & Koriakin, T.A. Caregivers of Children with Developmental Disabilities: Exploring Perceptions of Health-Promoting Self-Care. J Dev Phys Disabil 32, 893–913 (2020). https://doi.org/10.1007/s10882-019-09724-x

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