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19-07-2018 | Caregiving | Article

The experiences of older caregivers of cancer patients following hospital discharge

Journal: Supportive Care in Cancer

Authors: Abby J. Schwartz, Richard F. Riedel, Thomas W. LeBlanc, Devi Desai, Carol Jenkins, Ellen Mahoney, Janice Humphreys, Cristina C. Hendrix

Publisher: Springer Berlin Heidelberg

Abstract

Purpose

This study addressed the experiences of older caregivers of cancer patients in the 2 weeks following a hospital discharge. It sought to understand the challenges they face in providing supportive care to patients at home.

Methods

Qualitative descriptive interviews with a narrative approach were conducted with each caregiver at 1 and 2 weeks following the patient’s discharge from the hospital. A thematic analysis approach was used to identify the themes that emerged from the caregiver interviews.

Results

Caregivers were primarily Caucasian (77%), were mostly 68 years of age or older (62%), and were primarily caring for a spouse (69%). Three key themes emerged from the qualitative analysis: caregiver and patient wellness are connected, caregivers’ struggle with control issues, and challenges in communication with health professionals.

Conclusions

These findings highlight psychosocial changes that caregivers experience over the 2-week time period following hospital discharge. Implications include the need to identify interventions to better prepare caregivers for the post-discharge period.
Literature
1.
National Alliance for Caregiving, AARP Public Policy Institute (2015) 2015 report: caregiving in the U.S. http://​www.​caregiving.​org/​caregiving2015/​. Accessed 18 June 2017
2.
Schulz R, Beach SR (1999) Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA 282(23):2215–2219CrossRef
3.
Perkins M, Howard VJ, Wadley VG, Crowe M, Safford MM, Haley WE, Howard G, Roth DL (2013) Caregiving strain and all-cause mortality: evidence from the REGARDS study. J Gerontol B Psychol Sci Soc Sci 68(4):504–512CrossRef
4.
Pinquart M, Sorensen S (2007) Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci 62(2):P126–P137CrossRef
5.
Ekwall AK, Sivberg B, Hallberg IR (2005) Loneliness as a predictor of quality of life among older caregivers. J Adv Nurs 49(1):23–32CrossRef
6.
Torres SJ, McCabe M, Nowson CA (2010) Depression, nutritional risk and eating behaviour in older caregivers. J Nutr Health Aging 14(6):442–448CrossRef
7.
Wittenberg-Lyles E, Demiris G, Oliver DP, Burchett M (2014) Exploring aging-related stress among older spousal caregivers. J Gerontol Nurs 40(8):13–16CrossRef
8.
Kim Y, Schulz R (2008) Family caregivers’ strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. J Aging Health 20(5):483–503CrossRef
9.
Ugur O, Elcigil A, Arslan D, Sonmez A (2014) Responsibilities and difficulties of caregivers of cancer patients in home care. Asian Pac J Cancer Prev 15(2):725–729CrossRef
10.
Janda M, Eakin EG, Bailey L, Walker D, Troy K (2006) Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14(11):1094–1103CrossRef
11.
Lebel S, Devins GM (2008) Stigma in cancer patients whose behavior may have contributed to their disease. Future Oncol 4(5):717–733CrossRef
12.
Mosher CE, Danoff-Burg S (2007) Death anxiety and cancer-related stigma: a terror management analysis. Death Studies 31(10):885–907CrossRef
13.
Wilson K, Luker KA (2006) At home in hospital? Interaction and stigma in people affected by cancer. Soc Sci Med 62(7):1616–1627CrossRef
14.
Sklenarova H, Krumpelmann A, Haun MW, Friederich HC, Huber J, Thomas M, Winkler EC, Herzog W, Hartmann M (2015) When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer 121(9):1513–1519CrossRef
15.
Given BA, Given CW, Sherwood PR (2012) Family and caregiver needs over the course of the cancer trajectory. J Support Oncol 10(2):57–6416CrossRef
16.
Cornwell P, Dicks B, Fleming J, Haines TP, Olson S (2012) Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: establishing a new reality. Support Care Cancer 20(10):2595–2610CrossRef
17.
Hung H-C, Tsai M-C, Chen S-C, Liao C-T, Chen Y-R, Liu J-F (2013) Change and predictors of social support in caregivers of newly diagnosed oral cavity cancer patients during the first 3 months after discharge. Cancer Nurs 36(6):E17–E24CrossRef
18.
Lambert VA, Lambert CE (2012) Qualitative descriptive research: an acceptable design. Pac Rim Int J Nurs Res 16(4):255–256
19.
Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 23(4):334–340CrossRef
20.
Neergaard MA, Olesen F, Andersen RS, Sondergaard J (2009) Qualitative description—the poor cousin of health research? BMC Med Res Methodol 9(1):52CrossRef
21.
Lincoln YS, Guba EG (1985) Naturalistic inquiry. Sage Publications, Newbury ParkCrossRef
22.
Colorafi KJ, Evans B (2016) Qualitative descriptive methods in health science research. HERD 9(4):16–25CrossRef
23.
Sullivan-Bolyai S, Bova C, Harper D (2005) Developing and refining interventions in persons with health disparities: the use of qualitative description. Nurs Outlook 53(3):127–133CrossRef
24.
Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101CrossRef
25.
Nowell LS, Norris JM, White DE, Moules NJ (2017) Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Methods 16(1):1–13CrossRef
26.
Saldaña J (2012) The coding manual for qualitative researchers. Sage Publications, Thousand Oaks
27.
NVivo qualitative data analysis Software; QSR International Pty Ltd. Version 10
28.
Birks M, Chapman Y, Francis K (2008) Memoing in qualitative research: probing data and processes. J Res Nurs 13(1):68–75CrossRef
29.
Litzelman K, Green PA, Yabroff KR (2016) Cancer and quality of life in spousal dyads: spillover in couples with and without cancer-related health problems. Support Care Cancer 24(2):763–771CrossRef
30.
Segrin C, Badger TA (2014) Psychological and physical distress are interdependent in breast cancer survivors and their partners. Psychol Health Med 19(6):716–723CrossRef
31.
Andrew NE, Kilkenny MF, Naylor R, Purvis T, Cadilhac DA (2015) The relationship between caregiver impacts and the unmet needs of survivors of stroke. Patient Prefer Adherence 9:1065–1073CrossRef
32.
Ejem DB, Drentea P, Clay OJ (2015) The effects of caregiver emotional stress on the depressive symptomatology of the care recipient. Aging Ment Health 19(1):55–62CrossRef
33.
Hagedoorn M, Sanderman R, Bolks HN, Tuinstra J, Coyne JC (2008) Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. Psychol Bull 134(1):1–30CrossRef
34.
Kurtz ME, Kurtz CJ, Given CW, Given BA (2004) Depression and physical health among family caregivers of geriatric patients with cancer—a longitudinal view. Med Sci Monit 10(8):CR447–CR456PubMed
35.
Northouse LL, Katapodi MC, Schafenacker AM, Weiss D (2012) The impact of caregiving on the psychological well-being of family caregivers and cancer patients. Semin Oncol Nurs 28(4):236–245CrossRef
36.
Ferrell B, Wittenberg E (2017) A review of family caregiving intervention trials in oncology. CA Cancer J Clin 67(4):318–325CrossRef
37.
Girgis A, Lambert SD, McElduff P, Bonevski B, Lecathelinais C, Boyes A, Stacey F (2013) Some things change, some things stay the same: a longitudinal analysis of cancer caregivers’ unmet supportive care needs. Psycho-Oncology 22(7):1557–1564CrossRef
38.
Kim Y, Carver CS, Shaffer KM, Gansler T, Cannady RS (2015) Cancer caregiving predicts physical impairments: roles of earlier caregiving stress and being a spousal caregiver. Cancer 121(2):302–310CrossRef
39.
Ussher JM, Wong TWK, Perz J (2011) A qualitative analysis of changes in relationship dynamics and roles between people with cancer and their primary informal carer. Health 15(6):650–667CrossRef
40.
Chiu C, Feuz MA, McMahan RD, Miao Y, Sudore RL (2016) “Doctor, make my decisions”: decision control preferences, advance care planning, and satisfaction with communication among diverse older adults. J Pain Symptom Manag 51(1):33–40CrossRef
41.
Koops van ‘t Jagt R, de Winter AF, Reijneveld SA, Hoeks JCJ, Jansen CJM (2016) Development of a communication intervention for older adults with limited health literacy: photo stories to support doctor–patient communication. J Health Commun 21(sup2):69–82CrossRef
42.
Wolff JL, Clayman ML, Rabins P, Cook M, Roter DL (2015) An exploration of patient and family engagement in routine primary care visits. Health Expect 18(2):188–198CrossRef