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Research Article

Social support experiences when growing up with a parent with Huntington’s disease

ORCID Icon, ORCID Icon &
Pages 655-675 | Received 17 Feb 2022, Accepted 17 Jul 2022, Published online: 29 Jul 2022

References

  • Andrews, B., Brewin, C. R., & Rose, S. (2003). Gender, social support, and PTSD in victims of violent crime. Journal of Traumatic Stress, 16(4), 421–427. doi:10.1023/A:1024478305142
  • Arnberg, F. K., Hultman, C. M., Michel, P. O., & Lundin, T. (2013). Fifteen years after a ferry disaster: Clinical interviews and survivors’ self-assessment of their experience. European Journal of Psychotraumatology, 4(1), 1–9. doi:10.3402/ejpt.v4i0.20650
  • Becker, S., Dearden, C., & Aldridge, J. (2000). Young carers in the UK: research, policy and practice. Research, Policy and Planning, 8(2), 13–22.
  • Bolger, N., & Amarel, D. (2007). Effects of social support visibility on adjustment to stress: Experimental evidence. Journal of Personality and Social Psychology, 92(3), 458–475. doi: 10.1037/0022-3514.92.3.458
  • Bowlby, J. (1979). The Bowlby-Ainsworth attachment theory. Behavioral and Brain Sciences, 2(4), 637–638. doi:10.1017/S0140525X00064955
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. doi:10.1191/1478088706qp063oa
  • Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. doi:10.1080/2159676X.2019.1628806
  • Chikhradze, N., Knecht, C., & Metzing, S. (2017). Young carers: Growing up with chronic illness in the family – A systematic review 2007–2017. Journal of Compassionate Health Care, 4(1), 1–16. doi:10.1186/s40639-017-0041-3
  • Ciriegio, A. E., Pfalzer, A. C., Hale, L., McDonell, K. E., Claassen, D. O., & Compas, B. E. (2020). Investigating the interplay of working memory, affective symptoms, and coping with stress in offspring of parents with huntington’s disease. Neuropsychology, 34(7), 791–778. doi:10.1037/neu0000692
  • del-Pino-Casado, R., Frías-Osuna, A., Palomino-Moral, P. A., Ruzafa-Martínez, M., & Ramos-Morcillo, A. J. (2018). Social support and subjective burden in caregivers of adults and older adults: A meta-analysis. PLoS One, 13(1), 1–18. doi:10.1371/journal.pone.0189874
  • Eddy, C. M., & Rickards, H. E. (2015). Theory of mind can be impaired prior to motor onset in huntington’s disease. Neuropsychology, 29(5), 792–798. doi:10.1037/neu0000190
  • Forrest Keenan, K., McKee, L., & Miedzybrodzka, Z. (2015). Help or hindrance: Young people's experiences of predictive testing for Huntington's disease. Clinical Genetics, 87(6), 563–569. doi:10.1111/cge.12439
  • Forrest Keenan, K., Miedzybrodzka, Z., Van Teijlingen, E., McKee, L., & Simpson, S. (2007). Young people’s experiences of growing up in a family affected by Huntington’s disease. Clinical Genetics, 71(2), 120–129. doi:10.1111/j.1399-0004.2006.00702.x
  • Forrest Keenan, K., Simpson, S. A., Wilson, B. J., Van Teijlingen, E. R., McKee, L., Haites, N., & Matthews, E. (2003). To tell or not to tell: Barriers and facilitators in family communication about genetic risk. Clinical Genetics, 64(4), 317–326. doi:10.1034/j.1399-0004.2003.00142.x
  • Hill, C. E., Thompson, B. J., Hess, S. A., Knox, S., Williams, E. N., & Ladany, N. (2005). Consensual qualitative research: An update. Journal of Counseling Psychology, 52(2), 196–205. doi:10.1037/0022-0167.52.2.196
  • Hill, C. E., Thompson, B. J., & Williams, E. N. (1997). A guide to conducting consensual qualitative research. The Counseling Psychologist, 25(4), 517–572. doi:10.1177/0011000097254001
  • Hughes, K., Bellis, M. A., Hardcastle, K. A., Sethi, D., Butchart, A., Mikton, C., Jones, L., & Dunne, M. P. (2017). The effect of multiple adverse childhood experiences on health: A systematic review and meta-analysis. The Lancet Public Health, 2(8), 356–366. doi:10.1016/S2468-2667(17)30118-4
  • Kaniasty, K., & Norris, F. H. (2008). Longitudinal linkages between perceived social support and posttraumatic stress symptoms: Sequential roles of social causation and social selection. Journal of Traumatic Stress, 21(3), 274–281. doi:10.1002/jts.20334
  • 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. doi:10.1007/s10566-014-9258-x
  • 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. doi:10.1080/17450128.2014.980370
  • Kjoelaas, S., Jensen, T. K., & Feragen, K. B. (2021). I knew it wasn’t normal, I just didn’t know what to do about it’: Adversity and caregiver support when growing up in a family with Huntington’s disease. Psychology & Health, 37(2), 1–19. doi:10.1080/08870446.2021.1907387
  • Lewit-Mendes, M. F., Lowe, G. C., Lewis, S., Corben, L. A., & Delatycki, M. B. (2018). Young people living at risk of Huntington’s disease: The lived experience. Journal of Huntington’s Disease, 7(4), 391–402. doi:10.3233/JHD-180308
  • Maisel, N. C., & Gable, S. L. (2009). The paradox of received social support: The importance of responsiveness. Psychological Science, 20(8), 928–932. doi:10.1111/j.1467-9280.2009.02388.x
  • Mand, Cara M, Gillam, Lynn, Duncan, Rony E., & Delatycki, Martin B. (2015). “I’m scared of being like mum”: The Experience of Adolescents Living in Families with Huntington Disease. Journal of Huntington's Disease, 4(3), 209–217. http://dx.doi.org/10.3233/JHD-150148
  • McColgan, P., & Tabrizi, S. J. (2018). Huntington's disease: A clinical review. European Journal of Neurology, 25(1), 24–34. doi:10.1111/ene.13413
  • Pakenham, K. I., Chiu, J., Bursnall, S., & Cannon, T. (2007). Relations between social support, appraisal and coping and both positive and negative outcomes in young carers. Journal of Health Psychology, 12(1), 89–102. doi:10.1177/1359105307071743
  • Rueger, S. Y., Malecki, C. K., Pyun, Y., Aycock, C., & Coyle, S. (2016). A meta-analytic review of the association between perceived social support and depression in childhood and adolescence. Psychological Bulletin, 142(10), 1017-1067. doi:10.1037/bul0000058
  • Shonkoff, J. P., Garner, A. S., Siegel, B. S., Dobbins, M. I., Earls, M. F., McGuinn, L., Pascoe, J., Wood, D. L., & Wegner, L. M. (2012). The lifelong effects of early childhood adversity and toxic stress. Pediatrics, 129(1), 232–246. doi:10.1542/peds.2011-2663
  • Stuttgen, K., McCague, A., Bollinger, J., Dvoskin, R., & Mathews, D. (2021). Whether, when, and how to communicate genetic risk to minors:‘I wanted more information but I think they were scared I couldn’t handle it’. Journal of Genetic Counseling, 30(1), 237–245. doi:10.1002/jgc4.1314
  • Taylor, S. E. (2011). “Social support: A review”. In Friedman, M. S. (Ed.). The handbook of health psychology (pp. 189–214). New York, NY: Oxford University Press. Retrieved from: https://taylorlab.psych.ucla.edu/wp-content/uploads/sites/5/2014/11/2011_Social-support_A-review.pdf
  • Thoits, P. A. (2011). Mechanisms linking social ties and support to physical and mental health. Journal of Health and Social Behavior, 52(2), 145–161. doi:10.1177/0022146510395592
  • Thompson, R. A., Flood, M. F., & Goodvin, R.. (2015). Social support and developmental psychopathology. In D. Cicchetti & D.J. Cohen (Eds.), Developmental psychopathology, risk disorder and adaptation (pp. 1–37). Hoboken, New Jersey: John Wiley & Sons, Inc.
  • Thoresen, S., Jensen, T. K., Wentzel-Larsen, T., & Dyb, G. (2014). Social support barriers and mental health in terrorist attack survivors. Journal of Affective Disorders, 156, 187–193. doi:10.1016/j.jad.2013.12.014
  • Tillerås, K. H., Kjoelaas, S. H., Dramstad, E., Feragen, K. B., & von der Lippe, C. (2020). Psychological reactions to predictive genetic testing for Huntington’s disease: A qualitative study. Journal of Genetic Counseling, 29(6), 1093–1105. doi:10.1002/jgc4.1245
  • Vamos, M., Hambridge, J., Edwards, M., & Conaghan, J. (2007). The impact of Huntington's disease on family life. Psychosomatics, 48(5), 400–404. doi:10.1176/appi.psy.48.5.400
  • Van der Meer, L., Timman, R., Trijsburg, W., Duisterhof, M., Erdman, R., Van Elderen, T., & Tibben, A. (2006). Attachment in families with Huntington's disease: A paradigm in clinical genetics. Patient Education and Counseling, 63(1–2), 246–254. doi:10.1016/j.pec.2005.11.019
  • van der Meer, L., van Duijn, E., Wolterbeek, R., & Tibben, A. (2012). Adverse childhood experiences of persons at risk for Huntington's disease or BRCA1/2 hereditary breast/ovarian cancer. Clinical Genetics, 81(1), 18–23. doi:10.1111/j.1399-0004.2011.01778.x