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“I Just Learned by Observation and Trial and Error”: Exploration of Young Caregiver Training and Knowledge in Families Living with Rare Neurological Disorders

  • Melinda S. KavanaughEmail author
  • Chi C. Cho
  • Megan Howard
Original Paper

Abstract

Background

Caregiver skill training and support programs are traditionally offered to adult caregivers, leaving out the over 1 million children and youth who provide care (“young caregivers”). Skill building and support programs are critical to caregiver and patient well-being and can be informed by the knowledge of current caregiver skill and support acquisition.

Objective

Using data from three studies of neurological disorders, this paper provides initial data on how young caregivers acquire caregiver skills and training needed to inform young caregiver programs.

Method

Mixed method data drawn from three studies of young caregivers in neurological disorders, Huntington’s disease (HD) and amyotrophic lateral sclerosis (ALS).

Results

Youth (N = 96), ranged in age from 8 to 20, care for a family member with HD or ALS, and involved in tasks ranging from assistance with walking (76%), toileting (32%) and administering medications (37%). The majority (N = 59; 61%), received no training or guidance. When asked how they knew what to do, six main themes arose: (1) patient tells me what to do, (2) watching and observing, (3) common sense, (4) treating patient like child or self, (5) process of figuring it out, and (6) don’t know.

Conclusion

Young caregivers in neurological disorders engage in numerous caregiving tasks with little formal guidance, despite a desire for training and education by adults and professionals. Reliance on various skill methods and lack of formal guidance, points to the need for health care professionals to develop education and training programs targeting this isolated and underserved population, improving the well-being of both caregiver and care recipient.

Keywords

Young carers Young caregivers ALS Huntington’s disease Family caregiving Caregiver training 

Notes

Acknowledgements

Funding was provided by Amyotrophic Lateral Sclerosis Association and Fahs-Beck Fund for Research and Experimentation.

Compliance with Ethical Standards

Conflict of interest

The authors declares that they have no conflict of interest.

References

  1. Andersen, P. M., Borasio, G. D., Dengler, R., Hardiman, O., Kollewe, K., Leigh, P. N., et al. (2005). EFNS task force on management of amyotrophic lateral sclerosis: Guidelines for diagnosing and clinical care of patients and relatives: An evidence-based review with good practice points. European Journal of Neurology, 12, 921–938.CrossRefGoogle Scholar
  2. Aubeeluck, A., & Moskowitz, C. B. (2008). Huntington’s disease. Part 3: Family aspects of HD. British Journal of Nursing, 17(5), 328–331.CrossRefGoogle Scholar
  3. Bauman, L., Foster, G., Johnson-Silver, L., Berman, R., Gamble, I., & Muchaneta, L. (2006). Children caring for their ill parents with HIV/AIDS. Vulnerable Children and Youth Studies, 1(1), 56–70.CrossRefGoogle Scholar
  4. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.CrossRefGoogle Scholar
  5. Chio, A., Gauthier, A., Calvo, A., Ghiglione, P., & Mutani, R. (2005). Caregiver burden and patients’ perception of being a burden in ALS. Neurology, 64, 1780–1782.CrossRefGoogle Scholar
  6. Cohen, D., Greene, J., Toyinbo, P., & Siskowski, C. (2012). Impact of family caregiving by youth on their psychological well-being: A latent trait analysis. The Journal of Behavioral Health Services & Research, 39(3), 245–256.CrossRefGoogle Scholar
  7. Creswell, J. (2007). Qualitative inquiry and research design: Choosing among the five approaches. Thousand Oaks, CA: Sage.Google Scholar
  8. Erikson, E. (1963). Youth: Change and challenge. Garden City: Doubleday.Google Scholar
  9. French, D. P., & Weinman, J. (2008). Current issues and new directions in psychology and health: “Assessing illness perceptions: Beyond the IPQ”. Psychol Health, 23(1), 5–9.CrossRefGoogle Scholar
  10. Gauthier, A., Vignola, A., Calvo, A., Cavallo, E., Moglia, C., Sellitti, L., et al. (2007). A longitudinal study on quality of life and depression in ALS patient–caregiver couples. Neurology, 68(12), 923–926.CrossRefGoogle Scholar
  11. Gerdner, L. A., Hall, G. R., & Buckwalter, K. C. (1996). Caregiver training for people with Alzheimer’s based on a stress threshold model. Image: The Journal of Nursing Scholarship, 28(3), 241–246.  https://doi.org/10.1111/j.1547-5069.1996.tb00358.x.Google Scholar
  12. Goldstein, L., Atkins, L., Landau, S., Brown, R., & Leigh, P. (2006). Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: A longitudinal study. Psychological Medicine, 36, 865–875.CrossRefGoogle Scholar
  13. Hunt, G., Levine, C., & Naiditch, L. (2005). Young carers in the U.S.: Findings from a national survey. Bethesda, MD: National Alliance on Family Caregiving. (in collaboration with the United Hospital Fund).Google Scholar
  14. Huntington’s Disease Society of America (HDSA). (2015). “What is HD?” Retrieved December 15, 2017 from www.hdsa.org/what-is-hd/.
  15. Kalra, L., Evans, A., Perez, I., Melbourn, A., Patel, A., Knapp, M., et al. (2004). Training carers of stroke patients: Randomized controlled trial. BMJ (Clinical Research Ed.), 328(7448), 1099.CrossRefGoogle Scholar
  16. Kavanaugh, M. S. (2014). Children and adolescents providing care to a parent with Huntington’s disease: Disease symptoms, caregiving tasks and young carer well-being. Child & Youth Care Forum, 43(6), 675–690.  https://doi.org/10.1007/s10566-014-9258-x.CrossRefGoogle Scholar
  17. Kavanaugh, M. S. (2016). Characteristics of ALS families and their youth caregivers: Results from a national study. Theme 12 Symptom Management, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(Sup1), 295–310.CrossRefGoogle Scholar
  18. Kavanaugh, M. S., Cho, C., Maeda, H., & Swope, C. (2017). “I am no longer alone”: Evaluation of the first North American camp for youth living in families with Huntington’s disease. Children and Youth Services Review, 79, 325–332.CrossRefGoogle Scholar
  19. Kavanaugh, M. S., Kalipeni, J., & Stamatopoulos, V. (2016). Application of the UN Convention on Rights of the Child to young carers in the United States: US policies in international context. Child Abuse Research: A South African Journal, 17(1), 68–81.Google Scholar
  20. Kavanaugh, M. S., Noh, H., & Studer, L. (2015). “It’d be nice if someone asked me how I was doing. Like’, cause I will have an answer”: Exploring support needs of young carers of a parent with Huntington’s disease. Vulnerable Children and Youth Studies, 10(1), 12–25.CrossRefGoogle Scholar
  21. Mehta, P., Kaye, W., Bryan, L., Larson, T., Copeland, T., Wu, J., et al. (2016). Prevalence of amyotrophic lateral sclerosis—United States, 2012–2013. MMWR Surveillance Summaries, 65(SS-8), 1–12.  https://doi.org/10.15585/mmwr.ss6508a1.CrossRefGoogle Scholar
  22. Mockford, C., Jenkinson, C., & Fitzpatrick, R. (2006). A review: Carers, MND and service provision. Amyotrophic Lateral Sclerosis, 7(3), 132–141.CrossRefGoogle Scholar
  23. Paulsen, J., Ready, R., Hamilton, M., & Cummings, J. (2001). Neuropsychiatric aspects of Huntington’s disease. Journal of Neurological Neurosurgical Psychiatry, 71(3), 310–314.CrossRefGoogle Scholar
  24. Paun, O., Farran, C., Perraud, S., & Loukissa, D. (2004). Successful caregiving of persons with Alzheimer’s disease: skill development over time. Alzheimer’s Care Quarterly, 5(3), 241–252.Google Scholar
  25. Pearlin, L., Mullan, J., Semple, M., & Skaff, M., (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–594.CrossRefGoogle Scholar
  26. Schulz, R. (2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. American Journal of Geriatric Psychiatry, 12(3), 240–249.  https://doi.org/10.1176/appi.ajgp.12.3.240.CrossRefGoogle Scholar
  27. Shah, A. J. & Wadoo, O. (1994). Depression in carers of patients with dementia. Moreton, Wirral: Priory Lodge Education Ltd. Retrieved December 15, 2017 from www.priory.com/psych/carerdep.htm.
  28. Shifren, K. (2008). Early caregiving: Perceived parental relations and current social support. Journal of Adult Development, 15, 160–168.CrossRefGoogle Scholar
  29. Shifren, K., & Chong, A. (2012). Health-related behaviors: A study among former young caregivers. Journal of Adult Development, 19(2), 111–121.CrossRefGoogle Scholar
  30. Siskowski, C. (2006). Young caregivers: Effect of family health situations on school performance. The Journal of School Nursing, 22, 163–169.CrossRefGoogle Scholar
  31. Toseland, R. W., Mccallion, P., Smith, T., & Banks, S. (2004). Supporting caregivers of frail older adults in an HMO setting. American Journal of Orthopsychiatry, 74(3), 349–364.  https://doi.org/10.1037/0002-9432.74.3.349.CrossRefGoogle Scholar
  32. Tramonti, F., Barsanti, I., Bongioanni, P., Bogliolo, C., & Rossi, B. (2014). A permanent emergency: A longitudinal study on families coping with ALS. Families, Systems & Health, 32(3), 271–279.CrossRefGoogle Scholar
  33. Williams, J., Ayres, L., Specht, J., Sparbel, K., & Klimek, M. (2009). Caregiving by teens for family members with Huntington disease. Journal of Family Nursing, 15(3), 273–294.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Melinda S. Kavanaugh
    • 1
    • 2
    Email author
  • Chi C. Cho
    • 2
  • Megan Howard
    • 1
  1. 1.University of Wisconsin-MilwaukeeMilwaukeeUSA
  2. 2.Center in Aging and Translational ResearchUniversity of Wisconsin-MilwaukeeMilwaukeeUSA

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