The purpose of this report is to describe caregiving by teens for family members with Huntington disease (HD). Thirty-two teens in HD families in the United States and Canada participated in focus groups from 2002 to 2005 in a study to identify concerns and strategies to manage concerns. An unexpected finding was 24 (77%) described caregiving activities. Descriptive analysis of caregiving statements identified themes of Tasks and Responsibilities, Subjective Burden, Caregiving in Context of Personal Risk for HD, and Decisional Responsibility. Teens took an active part in nearly all aspects of care with the exception of contacting health care providers and attending doctors' appointments. Some described emotional distress, and many provided care knowing they had the potential to develop HD. Teens recognized the need for decisions but lacked the authority to make these decisions. Findings may be relevant for other teens who strive to meet caregiver and student roles and developmental tasks.
Arnett, J.J. (2004). Emerging adulthood: The winding road from the late teens through the twenties. New York: Oxford University Press.
2.
Aylward, E.H., Codori, A.M., Barta, P.E., Pearlson, G.D., Harris, G.J., & Brandt, J. (1996). Basal ganglia volume and proximity to onset in presymptomatic Huntington disease. Archives of Neurology, 53, 1293-1296.
3.
Baago, S. (2004). The unrecognized caregiver: Children of dementia . Perspectives, 27(4), 3-4.
4.
Banks, P., Cogan, N., Riddell, S., Deeley, S., Hill, M., & Tisdall, K. (2002). Does the covert nature of caring prohibit the development of effective services for young carers? British Journal of Guidance & Counseling, 30, 229-246.
5.
Batte, S., Watson, A.R., & Amess, K. (2006). The effects of chronic renal failure on siblings . Pediatric Nephrology, 21, 246-250.
6.
Beach, D. (1994). Family care of Alzheimer victims: An analysis of the adolescent experience. Journal of Alzheimer's Care Related Disease Research, 9, 12-19.
7.
Beach, D.L. (1997). Family caregiving: The positive impact on adolescent relationships. The Gerontologist, 37, 233-238.
8.
Becker, S. (2007). Global perspectives on children's unpaid caregiving in the family: Research and policy on "young carers" in the UK, Australia, the USA, and Sub-Saharan Africa. Global Social Policy, 7, 23-48.
9.
Bowers, B.J. (1987). Intergenerational caregiving: Adult caregivers and their aging parents. Advances in Nursing Science, 9(2), 20-5.
10.
Carers Australia (2007, October). Young carers in Australia. Retrieved May 4, 2009 from: http://www.youngcarers.net.au/
11.
Dunkin, J.J., & Anderson-Hanley, C., (1998). Dementia caregiver burden: A review of the literature and guidelines for assessment and intervention . Neurology, 51(1 Suppl. 1), S53-S60.
12.
Forrest Keenan, K., Miedzybrodzka, Z., van Teijlingen, E., McKee, L., & Simpson, S.A. (2007). Young people's experiences of growing up in a family affected by Huntington's disease. Clinical Genetics , 71, 120-129.
13.
Friedrich, R.M., Lively, S., & Rubenstein, L.M. (2008). Siblings' coping strategies and mental health services: A national study of siblings of persons with schizophrenia . Psychiatric Services, 59, 261-267.
14.
Frank, J. (2002) Making it Work: Good Practice with Young Carers and their Families. London, UK: The Children's Society and the Princess Royal Trust for Carers.
15.
Gates, M.F., & Lackey, N.R. (1998). Youngsters caring for adults with cancer. Image: Journal of Nursing Scholarship, 30(1), 11-15.
16.
Godsall, R., Jurkovic, G., Emsoff, J., Anderson, L., & Stanwyk, D. (2004). Why some kids do well in bad situations: Relation of parental alcohol misuse and parentification to child's self concept. Substance Use & Misuse, 39, 789-809.
17.
Gold, J.I., Treadwell, M., Weissman, L., & Vichinsky, E. (2008). An expanded Transactional Stress and Coping Model for siblings of children with sickle cell disease: Family functioning and sibling coping, self-efficacy and perceived social support. Child: Care, Health and Development, 34(4), 491-502.
18.
Holloway, I., & Wheeler, S. (2002). Qualitative research in nursing (2nd ed.). Oxford, UK: Blackwell Publishing.
19.
Horwitz, A., & Reinhard, S. (1995). Ethnic differences in caregiving duties and burdens among parents and siblings of persons with severe mental illness. Journal of Health and Social Behavior, 36, 38-50.
20.
Jacobson, S., & Wood, F. (2004). Contributions of children to the care of adults with diabetes. The Diabetes Educator, 30, 820-826.
21.
Kelley, L.S. (2005). Minor children and adult care exchanges with community-dwelling frail elders in a St. Lucian village. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 60, S62-S73.
22.
Kilmer, R.P., Cook, J.R., Taylor, C., Kane, S., & Clark, L.Y. (2008). Siblings of children with severed emotional disturbances: Risks, resources, and adaptation. American Journal of Orthopsychiatry , 78, 1-10.
23.
Kleiber, C., Montgomery, L.A., & Craft-Rosenberg, M. (1995). Information needs of the siblings of critically ill children. Child Health Care , 24, 47-60.
24.
Knafl, K.A., & Webster, D.C. (1988.) Managing and Analyzing Qualitative Data: A Description of Tasks, Techniques, and Materials. Western Journal of Nursing Research, 10(2), 195-218.
25.
Mahoney, D.F. (2003). Vigilance: Evolution and definition for caregivers of family members with Alzheimer's disease. Journal of Gerontological Nursing, 29(8), 24-30.
26.
McDaniel, S.H., Rolland, J.S., Feetham, S.L., & Miller, S.M. (2006). "It runs in the family": Family systems concepts and genetically linked disorders. In S. M. Miller, S. H. McDaniel, J. S. Rolland, & S. L. Feetham (Eds.), Individuals, families, and the new era of genetics (pp. 118-138). New York: W. W. Norton.
27.
Morse, J.M., & Field, P.A. (1995). Qualitative methods for health professionals (2nd ed.). Thousand Oaks, CA: Sage.
28.
Moscarillo, T., Holt, H., Perman, M., Goldberg, S., Cortellini, L., Stoler, J.M., et al. (2007). Knowledge of and attitudes about Alzheimer disease genetics: Report of a pilot survey and two focus groups. Community Genetics, 10, 97-102.
29.
National Alliance for Caregiving. (2005). Young caregivers in the U.S. Report of Findings. Bethesda, MD: Author.
30.
Newman, B.M., & Newman, P.R. (2006). Development through life: A psychosocial approach (9th ed.). Belmont, CA: Thomson Wadsworth.
31.
Ohaeri, J.U. (2003). The burden of caregiving in families with a mental illness: A review of 2002. Current Opinion in Psychiatry, 16, 457-465.
32.
Paulsen, J.S., & Conybeare, R.A. (2005). Cognitive changes in Huntington's disease. Advances in Neurology, 96, 209-225.
33.
Paulsen, J., Hayden, M., Stout, J.C., Langbehn, D.R., Aylward, E., Ross, C.A., et al. (2006). Preparing for preventive clinical trials: The PREDICT-HD study. Archives of Neurology, 63, 883-890.
34.
Paulsen, J.S., Nehl, C., Hoth, K.F., Kanz, J.E., Benjamin, M., Conybeare, R., et al. (2005). Depression and stages of Huntington's disease . Journal of Neuropsychiatry & Clinical Neuroscience , 17, 496-502.
35.
Paulsen, J.S., Magnotta, V.A., Mikos, A.E., Paulson, H.L., Penziner, E., Andreasen, N.C., et al. (2006). Brain structure in preclinical Huntington's disease. Biological Psychiatry, 59(1), 57-63.
36.
Penziner, E., Williams, J.K., Erwin, C., Wallis, A., Bombard, Y., Beglinger, L., et al. (2007). Perceptions of genetic discrimination among persons who have undergone predictive testing for Huntington disease. American Journal of Medical Genetics Part B Neuropsychiatric Genetics , 147, 320-325.
37.
Pillemer, K., Suitor, J.H., & Wethington, E. (2003). Integrating theory, basic research, and intervention: Two case studies from caregiving research. The Gerontologist, 43(Special Issue 1), 19-28.
Rolland, J.S., & Williams, J.K. (2006). Toward a psychosocial model for the new era of genetics. In S. M. Miller, S. H. McDaniel, J. S. Rolland, & S. L. Feetham (Eds.), Individuals, families, and the new era of genetics (pp. 36-78). New York: W. W. Norton.
40.
Rosenblatt, A., Ranen, N., Nance, M., & Paulsen, J.S. (1999). A physician's guide to the management of Huntington's disease (2nd ed.). New York: Huntington's Disease Society of America.
41.
Rotherham-Borus, M., Lester, P., Linn, Y., Beckwith, L., Song, J., Leonard, N., et al. (2006). Intergenerational benefits of family-based HIV interventions. Journal of Consulting and Clinical Psychology , 74, 622-627.
42.
Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing & Health, 23, 334-340.
43.
Selwood, A., Johnston, K., Katona, C., Lyketsos, C., & Livingston, G. (2007). Systematic review of the effects of psychological interventions on family caregivers of people with dementia. Journal of Affective Disorders, 101(1-3), 75-89.
44.
Sislowski, D. (2006). Young caregivers: Effect of family health situations on school performance. Journal of School Nursing, 22(3), 163-169.
45.
Sparbel, K.J.H., Williams, J.K., Driessnack, M., Schutte, D.L., Tripp-Reimer, T., McGonigal-Kenney, et al. ( 2008). Teens' experiences living with Huntington Disease. Journal of Genetic Counseling, 17, 327-335.
46.
Swanson, E., Jensen, D.P., Specht, J., Johnson, M.L., Maas, M., & Saylor, D. (1997). Caregiving: Concept analysis and outcomes. Scholarly Inquiry for Nursing Practice, 11, 65-76.
47.
Thompson, C., Spilsbury, K., Hall, J., Birks, Y., Barnes, C., & Adamson, J. (2007). Systematic review of information and support interventions for caregivers of people with dementia. BMC Geriatrics, 7, 18-50.
48.
Valiakalayil, A., Paulson, L., & Tibbo, P. (2004). Burden in adolescent children of parents with schizophrenia: The Edmonton project. Social Psychiatry and Psychiatric Epidemiology, 39, 528-535.
49.
Van der Meer, L., Timman, R., Trijsburg, W., Duisterhof, M., Erman, R., Elderen, T., et al. (2006). Attachment in families with Huntington disease: A paradigm in clinical genetics. Patient Education and Counseling, 63, 246-254.
50.
Vamos, M., Hambridge, J., Edwards, M., & Conaghan, J. (2007). The impact of Huntington's disease on family life . Psychosomatics, 48, 400-404.
51.
Walsh, F. (2006). Strengthening family resilience (2nd ed.). New York: Guilford.
52.
Williams J.K., & Ayres, L. (2007). I'm like you: Establishing, confirming and contesting common ground in focus groups with Huntington disease caregivers. Journal of Research in Nursing, 12, 655-664.
53.
Williams, J.K., Barnette, J.J., Reed, D., Sousa, V.D., Schutte, D.L., McGonigal-Kenney, M., et al. (2008). Development of the Huntington disease family concerns and strategies survey from focus group data. Manuscript submitted for publication.
54.
Williams, J.K., Hamilton, R.J., Nehl, C., McGonigal-Kenney, M., Schutte, D.L., Sparbel, K.J.H., et al. (2007). "No one else sees the difference": Family members' perceptions of changes in persons with preclinical Huntington disease . American Journal of Medical Genetics Part B, 144B, 636-641.
55.
Williams, J.K., Paulsen, J.S., Schutte, D.L., & Tripp-Reimer, T. (2001). Family health after predictive HD testing (Grant NR07970). Retrieved April 21, 2009, from http://crisp.cit.nih.gov
56.
Williams, J.K., Skirton, H., Paulsen, J.S., Tripp-Reimer, T., Jarmon, L., McGonigal-Kenney, M., et al. (2009) The emotional experiences of family carers in Huntington disease. Journal of Advanced Nursing, 65, 789-798.
57.
Woodgate, R.L. (2006). Siblings' experiences with childhood cancer. Cancer Nursing, 29, 406-414.
58.
Young Carers. (2007, November). Retrieved April 21, 2009, from http://www.healthyb.dal.ca/young.html
