Supporters Need Support: An Exploratory Analysis of Support Marshaling Among Informal Dementia Care Partners

References

• Abrahams, R., Liu, K. P. Y., Bissett, M., Fahey, P., Cheung, K. S. L., Bye R., … Chu, L.-W. (2018). Effectiveness of interventions for co-residing family caregivers of people with dementia: Systematic review and meta-analysis. Australian Occupational Therapy Journal, 65(3), 208–224. doi:10.1111/1440-1630.12464
   PubMed Web of Science ®Google Scholar
• Albrecht, T. L., & Adelman, M. B. (1987). Communicating social support. Newbury Park, CA: Sage.
   Google Scholar
• Alzheimer’s Association. (2022). 2022 Alzheimer’s Disease Facts and Figures. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf
   Google Scholar
• Barbee, A. P., & Cunningham, M. R. (1995). An experimental approach to social support communications: Interactive coping in close relationships. Annals of the International Communication Association, 18(1), 381–413. doi:10.1080/23808985.1995.11678921
   Google Scholar
• Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise & Health, 11(4), 589–597. doi:10.1080/2159676X.2019.1628806
   Web of Science ®Google Scholar
• Bute, J. J., Petronio, S., & Torke, A. M. (2015). Surrogate decision makers and proxy ownership: Challenges of privacy management in health care decision making. Health Communication, 30(8), 799–809. doi:10.1080/10410236.2014.900528
   PubMed Web of Science ®Google Scholar
• Chyu, J., Cantu, P., Mehta, N., & Markides, K. (2022). Caregiving for people with dementia or cognitive impairment during the COVID-19 pandemic: A review. Gerontology and Geriatric Medicine, 8, 1–13. doi:10.1177/23337214221132369
   Web of Science ®Google Scholar
• Cohen, S. A., Nash, C. C., & Greaney, M. L. (2021). Informal caregiving during the COVID-19 pandemic in the US: Background, challenges, and opportunities. American Journal of Health Promotion, 35(7), 1032–1036. doi:10.1177/08901171211030142c
   PubMed Web of Science ®Google Scholar
• Collins, R. N., & Kishita, N. (2019). The effectiveness of mindfulness- and acceptance-based interventions for informal caregivers of people with dementia: A meta-analysis. The Gerontologist, 59(4), e363–e379. doi:10.1093/geront/gny024
   PubMed Web of Science ®Google Scholar
• Connell, C., & Gibson, G. (1997). Racial, ethnic, and cultural differences in Dementia caregiving: Review and analysis. The Gerontologist, 37(3), 355–364. doi:10.1093/geront/37.3.355
   PubMed Web of Science ®Google Scholar
• Cox, C., & Monk, A. (1990). Minority caregivers of dementia victims: A comparison of black and Hispanic families. Journal of Applied Gerontology, 9(3), 340–354. doi:10.1177/073346489000900308
   Google Scholar
• Crowley, J. P. (2016). Marshaling social support. In C. R. Berger, M. E. Roloff, S. R. Wilson, J. P. Dillard, J. Caughlin, & D. Solomon (Eds.), The international encyclopedia of interpersonal communication (pp. 1–6). New York, NY: John Wiley & Sons. doi:10.1002/9781118540190.wbeic200
   Google Scholar
• Crowley, J. P., & Faw, M. H. (2014). Support marshaling for romantic relationships: Empirical validation of a support marshaling typology. Personal Relationships, 21(2), 242–257. doi:10.1111/pere.12029
   Web of Science ®Google Scholar
• Donelan, K., Hill, C. A., Hoffman, C., Scoles, K., Feldman, P. H., Levine, C., & Gould, D. (2002). Challenged to care: Informal caregivers in a changing health system. Health Affairs, 21(4), 222–231. doi:10.1377/hlthaff.21.4.222
   Web of Science ®Google Scholar
• Eggenberger, E., Heimerl, K., & Bennett, M. (2013). Communication skills training in dementia care: A systematic review of effectiveness, training content, and didactic methods in different care settings. International Psychogeriatrics, 25(3), 345–358. doi:10.1017/S1041610212001664
   PubMed Web of Science ®Google Scholar
• Etxeberria, I., Salaberria, K., & Gorostiaga, A. (2021). Online support for family caregivers of people with dementia: A systematic review and meta-analysis of RCTs and quasi-experimental studies. Aging & Mental Health, 25(7), 1165–1180. doi:10.1080/13607863.2020.1758900
   PubMed Web of Science ®Google Scholar
• Faw, M. H. (2014). Young adults’ strategies for managing social support during weight-loss attempts. Qualitative Health Research, 24(2), 267–278. doi:10.1177/1049732313520079
   PubMed Web of Science ®Google Scholar
• Faw, M. H. (2022). Social mobilization. In E. Ho, C. Bylund, & J. van Weert (Eds.), Oxford international encyclopedia of health communication. Oxford, United Kingdom: Oxford University Press. doi:10.1002/9781119678816
   Google Scholar
• Faw, M. H., Matter, M. M., & Luzinski, C. H. (2022). Preliminary evaluation and implications of the SPECAL method as an intervention for informal dementia care partners. Aging & Mental Health, 26(10), 1971–1978. doi:10.1080/13607863.2022.2032598
   PubMed Web of Science ®Google Scholar
• Gaugler, J. E., Kane, R. L., Kane, R. A., & Newcomer, R. (2005). Unmet care needs and key outcomes in cementia. Journal of the American Geriatrics Society, 53(12), 2098–2105. doi:10.1111/j.1532-5415.2005.00495.x
   PubMed Web of Science ®Google Scholar
• Gilligan, M., Suitor, J. J., Rurka, M., & Silverstein, M. (2020). Multigenerational social support in the face of the COVID-19 pandemic. Journal of Family Theory & Review, 12(4), 431–447. doi:10.1111/jftr.12397
   PubMed Web of Science ®Google Scholar
• Greene, R. L., Jackson, J. S., & Neighbors, H. W. (1993). Mental health and help-seeking behavior. In J. S. Jackson, L. M. Chatters, & R. J. Taylor (Eds.), Aging in black America (pp. 185–200). Newbury Park, CA: Sage.
   Google Scholar
• Haley, W. E., Levine, E. G., Brown, S. L., & Bartolucci, A. A. (1987). Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers. Psychology and Aging, 2(4), 323–330. doi:10.1037/0882-7974.2.4.323
   PubMed Web of Science ®Google Scholar
• Haley, W. E., Roth, D. L., Coleton, M. I., Ford, G. R., West, C. A., Colllins, R. P., & Isobe, T. L. (1996). Appraisal, coping, and social support as mediators of well-being in black and white family caregivers of patients with Alzheimer’s disease. Journal of Consulting and Clinical Psychology, 64, 121. doi:10.1037/0022-006X.64.1.121
   PubMed Web of Science ®Google Scholar
• Hugelius, K., Harada, N., & Marutani, M. (2021). Consequences of visiting restrictions during the COVID‐19 pandemic: An integrative review. International Journal of Nursing Studies, 121, 1–10. doi:10.1016/j.ijnurstu.2021.104000
   Web of Science ®Google Scholar
• Jones, S. M., & Wirtz, J. G. (2006). How does the comforting process work? An empirical test of an appraisal-based model of comforting. Human Communication Research, 32(3), 217–243. doi:10.1111/j.1468-2958.2006.00274.x
   Web of Science ®Google Scholar
• Koehly, L. M., Ashida, S., Schafer, E. J., & Ludden, A. (2015). Caregiving networks—using a network approach to identify missed opportunities. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 70(1), 143–154. doi:10.1093/geronb/gbu111
   PubMed Web of Science ®Google Scholar
• MacGeorge, E. L., Feng, B., & Burleson, B. R. (2011). Supportive communication. In M. L. Knapp & J. A. Daly (Eds.), The Sage handbook of interpersonal communication (pp. 317–354). Thousand Oaks, CA: Sage.
   Google Scholar
• Mittelman, M. S., Ferris, S. H., Shulman, E., Steinberg, G., & Levin, B. (1996). A family intervention to delay nursing home placement of patients with Alzheimer disease: A randomized controlled trial. JAMA, 276(21), 1725–1731. doi:10.1001/jama.1996.03540210033030
   PubMed Web of Science ®Google Scholar
• National Alliance for Caregiving & AARP. (2020). Caregiving in the U.S. in 2020: A Focused Look at Family Adult Caregivers of Adults Age 50+. https://www.caregiving.org/wp-content/uploads/2021/05/AARP1340_RR_Caregiving50Plus_508.pdf
   Google Scholar
• Neufeld, A., & Kushner, K. E. (2009). Men family caregivers’ experience of nonsupportive interactions: Context and expectations. Journal of Family Nursing, 15(2), 171–197. doi:10.1177/1074840709331643
   PubMed Web of Science ®Google Scholar
• Parks, M. R. (2007). Personal relationships and personal networks. Oxfordshire, United Kingdom: Routledge.
   Google Scholar
• Peisah, C., Brodaty, H., & Quadrio, C. (2006). Family conflict in dementia: Prodigal sons and black sheep. International Journal of Geriatric Psychiatry, 21(5), 485–492. doi:10.1002/gps.1501
   PubMed Web of Science ®Google Scholar
• Ponnala, S., Block, L., Lingg, A. J., Kind, A. J., & Werner, N. E. (2020). Conceptualizing caregiving activities for persons with dementia (PwD) through a patient work lens. Applied Ergonomics, 85, 1–8. doi:10.1016/j.apergo.2020.103070
   Web of Science ®Google Scholar
• Rapp, S. R., Shumaker, S., Schmidt, S., Naughton, M., & Anderson, R. (1998). Social resourcefulness: Its relationship to social support and wellbeing among caregivers of dementia victims. Aging & Mental Health, 2(1), 40–48. doi:10.1080/13607869856920
   Web of Science ®Google Scholar
• Ray, C. D., Harvey, J., Floyd, K., Bonito, J. A., & Reblin, M. (2021). Mixed messages: II. Outcomes associated with the proportion and placement of negative statements in supportive messages. Health Communication, 36(7), 856–865. doi:10.1080/10410236.2020.1719322
   PubMed Web of Science ®Google Scholar
• Ruisoto, P., Contador, I., Fernandez-Calvo, B., Serra, L., Jenaro, C., Flores, N. … Rivera-Navarro, J. (2020). Mediating effect of social support on the relationship between resilience and burden in caregivers of people with dementia. Archives of Gerontology and Geriatrics, 86, 103952. doi:10.1016/j.archger.2019.103952
   PubMed Web of Science ®Google Scholar
• Rurka, M., Suitor, J. J., Gilligan, M., & Carr, D. S. (2021). The caregiver identity in context: Consequences of identity threat from siblings. Journals of Gerontology B, 76(8), 1593–1604. doi:10.1093/geronb/gbaa099
   PubMed Web of Science ®Google Scholar
• Schulz, R., & Martire, L. M. (2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. The American Journal of Geriatric Psychiatry, 12(3), 240–249. doi:10.1097/00019442-200405000-00002
   PubMed Web of Science ®Google Scholar
• Silva, A. L., Teixeira, H. J., Cardoso Teixeira, M. J., & Freitas, S. (2013). The needs of informal caregivers of elderly people living at home: An integrative review. Scandinavian Journal of Caring Sciences, 27(4), 792–803. doi:10.1111/scs.12019
   PubMed Web of Science ®Google Scholar
• Tang, C., Chen, Y., Cheng, K., Ngo, V., & Mattison, J. E. (2018). Awareness and handoffs in home care: Coordination among informal caregivers. Behaviour & Information Technology, 37(1), 66–86. doi:10.1080/0144929X.2017.1405073
   Web of Science ®Google Scholar
• Tatangelo, G., McCabe, M., Macleod, A., & Konis, A. (2017). I just can’t please them all and stay sane: Adult child caregivers’ experiences of family dynamics in care-giving for a parent with dementia in Australia. Health and Social Care in the Community, 26(3), e370–e377. doi:10.1111/hsc.12534
   Web of Science ®Google Scholar
• Teahan, A., Lafferty, A., McAuliffe, E., Phelan, A., O’Sullivan, L., O’Shea D., … Fealy, G. (2020). Psychosocial interventions for family carers of people with dementia: A systematic review and meta-analysis. Journal of Aging and Health, 32(9), 1198–1213. doi:10.1177/0898264319899793
   PubMed Web of Science ®Google Scholar
• Tracy, S. J. (2018). A phronetic iterative approach to data analysis in qualitative research. Journal of Qualitative Research, 19(2), 61–76. doi:10.1002/9781118901731.iecrm0187
   Google Scholar
• Wilson, R., Rochon, E., Mihailidis, A., & Leonard, C. (2012). Examining success of communication strategies used by formal caregivers assisting individuals with Alzheimer’s disease during an activity of daily living. Journal of Speech, Language, & Hearing Research, 55(2), 328–341. doi:10.1044/1092-4388(2011/10-0206)
   PubMed Web of Science ®Google Scholar
• Yaffe, K., Fox, P., Newcomer, R., Sands, L., Lindquist, K., Dane, K., & Covinsky, K. E. (2002). Patient and caregiver characteristics and nursing home placement in patients with dementia. JAMA, 287(16), 2090–2097. doi:10.1001/jama.287.16.2090
   PubMed Web of Science ®Google Scholar