Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.”
Aim:
The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support.
Design:
Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation.
Setting/participants:
Carers (n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included.
Results:
14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer–patient relation.
Conclusion:
Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.
StajduharKFunkLToyeCet al. Part 1: home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998–2008). Palliat Med2010; 24(6): 573–593.
2.
FunkLStajduharKToyeCet al. Part 2: home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008). Palliat Med2010; 24(6): 594–607.
3.
SandersonCLobbEAMowllJet al. Signs of post-traumatic stress disorder in caregivers following an expected death: a qualitative study. Palliat Med2013; 27(7): 625–631.
4.
RingdalGIRingdalKJordhøyMSet al. Does social support from family and friends work as a buffer against reactions to stressful life events such as terminal cancer?Palliat Support Care2007; 5(1): 61–69.
5.
NorthouseLLKatapodiMCSongLet al. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin2010; 60(5): 317–339.
6.
PayneS.White paper on improving support for family carers in palliative care: part 2. Eur J Palliat Care2010; 17(6): 286–290.
7.
PayneS.White Paper on improving support for family carers in palliative care: part 1. Eur J Palliat Care2010; 17(5): 238–245.
8.
PalacioCKrikorianALimoneroJT.The influence of psychological factors on the burden of caregivers of patients with advanced cancer: resiliency and caregiver burden. Palliat Support Care2017; 3: 1–9.
9.
FredricksonBL.The role of positive emotions in positive psychology: the broaden-and-build theory of positive emotions. Am Psychol2001; 56: 218–226.
BrenneA-TKnudsenAKBrunelliCet al. The Orkdal model: development, implementation and evaluation of collaboration between specialist and community care within cancer palliative care. J Clin Oncol2014; 32(31 suppl): abstract 73.
16.
CostaVEarleCCEsplenMJet al. The determinants of home and nursing home death: a systematic review and meta-analysis. BMC Palliat Care2016; 15: 8.
17.
Clinical practice guidelines for quality palliative care Pittsburg: national consensus project for quality palliative care, 2004http://www.nationalconsensusproject.org
18.
MalterudK.Qualitative research: standards, challenges, and guidelines. Lancet2001; 358(9280): 483–488.
19.
MalterudK.The art and science of clinical knowledge: evidence beyond measures and numbers. Lancet2001; 358(9279): 397–400.
20.
MalterudK.Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health2012; 40(8): 795–805.
21.
BrobäckGBerteröC.How next of kin experience palliative care of relatives at home. Eur J Cancer Care2003; 12: 339–346.
22.
StajduharKIDaviesB.Variations in and factors influencing family members’ decisions for palliative home care. Palliat Med2005; 19(1): 21–32.
23.
Ward-GriffinC.Negotiating care of frail elders: relationships between community nurses and family caregivers. Can J Nurs Res2001; 33(2): 63–81.
24.
StajduharKI.Examining the perspectives of family members involved in the delivery of palliative care at home. J Palliat Care2003; 19(1): 27–35.
25.
Norwegian Ministry of Health Care Services. The coordination reform (samhandlingsreformen). Oslo: Norwegian Ministry of Health and Care Services, 2012.
26.
AndershedB.Relatives in end-of-life care—part 1: a systematic review of the literature the five last years, January 1999–February 2004. J Clin Nurs2006; 15(9): 1158–1169.
27.
FunkLMAllanDEStajduharKI. Palliative family caregivers’ accounts of health care experiences: the importance of “security.”Palliat Support Care2009; 7(4): 435–447.
28.
BakitasMAElkRAstinMet al. Systematic review of palliative care in the rural setting. Cancer Control2015; 22(4): 450–464.
29.
EwingGGrandeG and National Association for Hospice at Home. Development of a carer support needs assessment tool (CSNAT) for end-of-life care practice at home: a qualitative study. Palliat Med2013; 27(3): 244–256.
30.
OsseBHVernooij-DassenMJSchadéEet al. Problems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nurs2006; 29(5): 378–388.
31.
WilkesLWhiteKO’RiordanL.Empowerment through information: supporting rural families of oncology patients in palliative care. Aust J Rural Health2000; 8: 41–46.
Norwegian Directorate of Health. Veileder om pårørende i helse- og omsorgstjenesten. Pårørendeveileder (Guidelines for family caregiver suport in healthcare), Oslo: Norwegian Directorate of Health, 2017, https://helsedirektoratet.no/retningslinjer/parorendeveileder.
34.
HudsonPRemediosCZordanRet al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med2012; 15(6): 696–702.
35.
MadsenKPoulsenHS.Needs for everyday life support for brain tumour patients’ relatives: systematic literature review. Eur J Cancer Care (Engl)2011; 20(1): 33–43.
36.
NielsenMKNeergaardMAJensenABet al. Predictors of complicated grief and depression in bereaved caregivers: a nationwide prospective cohort study. J Pain Symptom Manage2017; 53(3): 540–550.
37.
SchulzRBoernerKKlingerJet al. Preparedness for death and adjustment to bereavement among caregivers of recently placed nursing home residents. J Palliat Med2015; 18(2): 127–133.
38.
GomesBHigginsonIJ.Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ2006; 332(7540): 515–521.
39.
RingdalGIRingdalKJordhøyMSet al. Health-related quality of life (HRQOL) in family members of cancer victims: results from a longitudinal intervention study in Norway and Sweden. Palliat Med2004; 18(2): 108–120.
40.
RingdalGIJordhøyMSKaasaS.Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. J Pain Symptom Manage2002; 24(1): 53–63.
41.
FerrellBRTemelJSTeminSet al. Integration of palliative care into standard oncology care: American society of clinical oncology clinical practice guideline update. J Clin Oncol2017; 35(1): 96–112.
42.
StajduharKIMartinWLBarwichDet al. Factors influencing family caregivers’ ability to cope with providing end-of-life cancer care at home. Cancer Nurs2008; 31(1): 77–85.
43.
StrangVRKoopPMPedenJ.The experience of respite during home-based family caregiving for persons with advanced cancer. J Palliat Care2002; 18(2): 97–104.
