797
Views
4
CrossRef citations to date
0
Altmetric
Articles

Stress, coping, and positive aspects of caregiving among caregivers of children with rare disease

ORCID Icon, , , , &
Pages 216-232 | Received 01 Mar 2021, Accepted 20 Mar 2022, Published online: 27 May 2022

References

  • Bédard, M., Molloy, D. W., Squire, L., Dubois, S., Lever, J. A., & O’Donnell, M. (2001). The Zarit Burden Interview: A new short version and screening version. The Gerontologist, 41(5), 652–657. https://doi.org/10.1093/geront/41.5.652
  • Bermejo-Toro, L., Sánchez-Izquierdo, M., Calvete, E., & Roldán, M. A. (2020). Quality of life, psychological well-being, and resilience in caregivers of people with acquired brain injury (ABI). Brain Injury, 34(4), 480–488. https://doi.org/10.1080/02699052.2020.1725127
  • Carbonneau, H., Caron, C., & Desrosiers, J. (2010). Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia, 9(3), 327–353. https://doi.org/10.1177/1471301210375316
  • Cardinali, P., Migliorini, L., & Rania, N. (2019). The caregiving experiences of fathers and mothers of children with rare diseases in Italy: Challenges and social support perceptions. Frontiers in Psychology, 10, 1780–1714. https://doi.org/10.3389/fpsyg.2019.01780
  • Carpenter, K., Wittkowski, A., Hare, D. J., Medford, E., Rust, S., Jones, S. A., & Smith, D. M. (2018). Parenting a child with Phenylketonuria (PKU): An Interpretative Phenomenological Analysis (IPA) of the experience of parents. Journal of Genetic Counseling, 27(5), 1074–1086. https://doi.org/10.1007/s10897-018-0227-7
  • Carver, C. S. (1997). You want to measure coping but your protocol’s too long: Consider the brief COPE. International Journal of Behavioral Medicine, 4(1), 92–100. https://doi.org/10.1207/s15327558ijbm0401_6
  • Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: A theoretically based approach. Journal of Personality and Social Psychology, 56(2), 267–283. https://doi.org/10.1037/0022-3514.56.2.267
  • Carey, V. J., Lumley, T., and Ripley, B. D. (2012), gee: Generalized Estimation Equation Solver , URL http://CRAN.Rproject.org/package=gee, R package version 4.13-18.
  • Cassidy, T. (2013). Benefit finding through caring: The cancer caregiver experience. Psychology & Health, 28(3), 250–266. https://doi.org/10.1080/08870446.2012.717623
  • Chen, F., & Greenberg, J. S. (2004). A positive aspect of caregiving: The influence of social support on caregiving gains for family members of relatives with schizophrenia. Community Mental Health Journal, 40(5), 423–435. https://doi.org/10.1023/B:COMH.0000040656.89143.82
  • Cohen, C. A., Colantonio, A., & Vernich, L. (2002). Positive aspects of caregiving: Rounding out the caregiver experience. International Journal of Geriatric Psychiatry, 17(2), 184–188. https://doi.org/10.1002/gps.561
  • Cohen, S., & McKay, G. (1984). Social support, stress and the buffering hypothesis: A theoretical analysis. In A. Baum, S. E. Taylor, & J. E. Singer (Eds.), Handbook of psychology and health, (pp. 253–267). Hillsdale, NJ: Erlbaum.
  • Cooper, C., Katona, C., & Livingston, G. (2008). Validity and reliability of the brief cope in carers of people with dementia: The LASER-AD study. Journal of Nervous & Mental Disease, 196(11), 838–843. https://doi.org/10.1097/NMD.0b013e31818b504c
  • Dickson, A., O’Brien, G., Ward, R., Flowers, P., Allan, D., & O’Carroll, R. (2012). Adjustment and coping in spousal caregivers following a traumatic spinal cord injury: An interpretative phenomenological analysis. Journal of Health Psychology, 17(2), 247–257. https://doi.org/10.1177/1359105311411115
  • Fekete, C., Tough, H., Siegrist, J., & Brinkhof, M. W. G. (2017). Health impact of objective burden, subjective burden and positive aspects of caregiving: an observational study among caregivers in Switzerland. BMJ Open, 7(12), e017369. https://doi.org/10.1136/bmjopen-2017-017369
  • Fidika, A., Salewski, C., & Goldbeck, L. (2013). Quality of life among parents of children with phenylketonuria (PKU). Health and Quality of Life Outcomes, 11(1), 54–59. https://doi.org/10.1186/1477-7525-11-54
  • Grover, S., Bhadada, S., Kate, N., Sarkar, S., Bhansali, A., Avasthi, A., Sharma, S., & Goel, R. (2016). Coping and caregiving experience of parents of children and adolescents with type-1 diabetes: An exploratory study. Perspectives in Clinical Research, 7(1), 32–39. https://doi.org/10.4103/2229-3485.173776
  • Kramer, B. J. (1993). Expanding the conceptualization of caregiver coping: The importance of relationship-focused coping strategies. Family Relations, 42(4), 383–391. http://www.jstor.org/stable/585338?seq=1#page_scan_tab_contents
  • Lee, Y., & Choi, S. (2013). Korean American dementia caregivers’ attitudes toward caregiving: the role of social network versus satisfaction with social support. Journal of Applied Gerontology, 32(4), 422–442. https://doi.org/10.1177/0733464811431163
  • Lewis, C., Skirton, H., & Jones, R. (2010). Living without a diagnosis: The parental experience. Genetic Testing and Molecular Biomarkers, 14(6), 807–815. https://doi.org/10.1089/gtmb.2010.0061
  • López, J., López-Arrieta, J., & Crespo, M. (2005). Factors associated with the positive impact of caring for elderly and dependent relatives. Archives of Gerontology and Geriatrics, 41(1), 81–94. https://doi.org/10.1016/j.archger.2004.12.001
  • Lüdecke D (2021). sjPlot: Data Visualization for Statistics in Social Science. R package version 2.8.10, https://CRAN.R-project.org/package=sjPlot.
  • Magliano, L., Patalano, M., Sagliocchi, A., Scutifero, M., Zaccaro, A., D’Angelo, M. G., Civati, F., Brighina, E., Vita, G., Vita, G. L., Messina, S., Sframeli, M., Pane, M., Lombardo, M. E., Scalise, R., D’Amico, A., Colia, G., Catteruccia, M., Balottin, U., … Politano, L. (2014). "I have got something positive out of this situation": psychological benefits of caregiving in relatives of young people with muscular dystrophy. Journal of Neurology, 261(1), 188–195. https://doi.org/10.1007/s00415-013-7176-8
  • Maine DHHS & Children’s Behavioral Health Services. (2011). Children’s habilitation assessment tool (CHAT).
  • Markoulakis, R., Fletcher, P., & Bryden, P. (2012). Seeing the glass half full: Benefits to the lived experiences of female primary caregivers of children with autism. Clinical Nurse Specialist, 26(1), 48–56. https://doi.org/10.1097/NUR.0b013e31823bfb0f
  • McConkie-Rosell, A., Hooper, S. R., Pena, L. D. M., Schoch, K., Spillmann, R. C., Jiang, Y. H., Cope, H., Palmer, C., & Shashi, V. (2018). Psychosocial profiles of parents of children with undiagnosed diseases: Managing well or just managing? Journal of Genetic Counseling, 27(4), 935–946. https://doi.org/10.1007/s10897-017-0193-5
  • Morimoto, H., Furuta, N., Kono, M., & Kabeya, M. (2019). Stress-buffering effect of coping strategies on interrole conflict among family caregivers of people with dementia. Clinical Gerontologist, 42(1), 34–46. https://doi.org/10.1080/07317115.2017.1368764
  • Mosher, C., Adams, R., Helft, P., O’Neil, B., Shahda, S., Rattray, N., & Champion, V. (2017). Positive changes among patients with advanced colorectal cancer and their family caregivers: a qualitative analysis. Psychology & Health, 32(1), 94–109. https://doi.org/10.1080/08870446.2016.1247839
  • National Alliance for Caregiving. (2018). Rare disease caregiving in America (Issue February). https://doi.org/10.1097/01.cot.0000471986.11116.76
  • Parveen, S., & Morrison, V. (2012). Predicting caregiver gains: A longitudinal study. British Journal of Health Psychology, 17(4), 711–723. https://doi.org/10.1111/j.2044-8287.2012.02067.x
  • Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–594. https://doi.org/10.1093/geront/30.5.583
  • Peay, H. L., Meiser, B., Kinnett, K., Furlong, P., Porter, K., & Tibben, A. (2016). Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy. European Journal of Human Genetics, 24(5), 633–637. https://doi.org/10.1038/ejhg.2015.189
  • Pelentsov, L. J., Laws, T. A., & Esterman, A. J. (2015). The supportive care needs of parents caring for a child with a rare disease: A scoping review. Disability and Health Journal, 8(4), 475–491. https://doi.org/10.1016/j.dhjo.2015.03.009
  • Pendergrass, A., Mittelman, M., Graessel, E., Özbe, D., & Karg, N. (2019). Predictors of the personal benefits and positive aspects of informal caregiving. Aging & Mental Health, 23(11), 1533–1538. https://doi.org/10.1080/13607863.2018.1501662
  • Preacher, K. J., Curran, P. J., & Bauer, D. J. (2006). Computational tools for probing interactions in multiple linear regression, multilevel modeling, and latent curve analysis. Journal of Educational and Behavioral Statistics, 31(4), 437–448. https://doi.org/10.3102/10769986031004437
  • Pruchno, R. A., & Resch, N. L. (1989). Mental health of caregiving spouses: coping as mediator, moderator, or main effect? Psychology and Aging, 4(4), 454–463. https://doi.org/10.1037/0882-7974.4.4.454
  • Quinn, C., & Toms, G. (2019). Influence of positive aspects of dementia caregiving on caregivers’ well-being: A systematic review. The Gerontologist, 59(5), e584–e596. https://doi.org/10.1093/geront/gny168
  • Raina, P., O’Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S., Russell, D., Swinton, M., Zhu, B., & Wood, E. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115(6), e626–e636. https://doi.org/10.1542/peds.2004-1689
  • R Core Team (2021). R: A language and environment for statistical computing. R Foundation for Statistical Computing, Vienna, Austria. https://www.R-project.org/.
  • Roth, D. L., Dilworth-Anderson, P., Huang, J., Gross, A. L., & Gitlin, L. N. (2015). Positive aspects of family caregiving for dementia: Differential item functioning by race. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 70(6), 813–819. https://doi.org/10.1093/geronb/gbv034
  • Senger, B. A., Ward, L. D., Barbosa-Leiker, C., & Bindler, R. C. (2016). The parent experience of caring for a child with mitochondrial disease. Journal of Pediatric Nursing, 31(1), 32–41. https://doi.org/10.1016/j.pedn.2015.08.007
  • Stephenson, E., King, D. B., & DeLongis, A. (2016). Coping process. In Stress: Concepts, cognition, emotion, and behavior (pp. 359–364). Elsevier. https://doi.org/10.1016/B978-0-12-800951-2.00045-5
  • Tarlow, B. J., Wisniewski, S. R., Belle, S. H., Rubert, M., Ory, M. G., & Gallagher-Thompson, D. (2004). Positive aspects of caregiving: Contributions of the REACH project to the development of new measures for Alzheimer’s caregiving. Research on Aging, 26(4), 429–453. https://doi.org/10.1177/0164027504264493
  • Thomas, P. T., Rajaram, P., & Nalini, A. (2014). Psychosocial challenges in family caregiving with children suffering from Duchenne Muscular Dystrophy. Health & Social Work, 39(3), 144–152. https://doi.org/10.1093/hsw/hlu027
  • Willard, V. W., Hostetter, S. A., Hutchinson, K. C., Bonner, M. J., & Hardy, K. K. (2016). Benefit finding in maternal caregivers of pediatric cancer survivors. Journal of Pediatric Oncology Nursing, 33(5), 353–360. https://doi.org/10.1177/1043454215620119
  • Wrosch, C., Amir, E., & Miller, G. E. (2011). Goal adjustment capacities, coping, and subjective well-being: The sample case of caregiving for a family member with mental illness. Journal of Personality and Social Psychology, 100(5), 934–946. https://doi.org/10.1037/a0022873
  • Yanes, T., Humphreys, L., McInerney-Leo, A., & Biesecker, B. (2017). Factors associated with parental adaptation to children with an undiagnosed medical condition. Journal of Genetic Counseling, 26(4), 829–840. https://doi.org/10.1007/s10897-016-0060-9
  • Zhu, Y., Gao, J., Li, X., Yang, Q., Lian, Y., Xiao, H., & Huang, W. (2019). Burden, positive aspects, and predictive variables of caregiving: A study of caregivers of patients with pediatric glaucoma. Journal of Ophthalmology, 2019, 6980208–6980207. https://doi.org/10.1155/2019/6980208

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.