Bereaved family members' perspectives on suffering among older rural cancer patients in palliative home nursing care: A qualitative study

Abstract

Little is known about experiences with receiving home nursing care when old, living in a rural area, and suffering from end-stage cancer. The aim of this study was thus to investigate bereaved family members' perceptions of suffering by their older relatives when receiving palliative home nursing care. Qualitative semi-structured interviews were conducted with 10 family members, in Norway during autumn 2015, and directed content analysis guided by Katie Eriksson's theoretical framework on human suffering was performed upon the data. The two main categories identified reflected expressions of both suffering and well-being. Expressions of suffering were related to illness, to care and to life and supported the theory. Expressions of well-being were related to other people (e.g. familiar people and nurses), to home and to activity. The results indicate a need to review and possibly expand the perspective of what should motivate care. Nursing and palliative care that become purely disease and symptom-focused may end up with giving up and divert the attention to social and cultural factors that may contribute to well-being when cure is not the goal.

Transition experiences during courses of incurable cancer from the perspective of bereaved spouses

“…Furthermore, a study by Røen et al (2018) showed that significant others transition into new roles and it is important for them to create personal relationships where they experience being seen as individual persons by healthcare professionals. However, a study by Devik et al (2017) identified that healthcare professionals' way of caring for their loved one could cause suffering among significant others. E.g.…”

A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member

“…Cancer can evoke strong emotional reactions both in patients and family members (Peter L. Hudson, Thomas, Trauer, Remedios, & Clarke, 2011;Northouse, 2012;Zwahlen, Hagenbuch, Jenewein, Carley, & Buchi, 2011). Although a review reports that elderly cancer patients admit to less emotional stress than younger patients , emotional stress has also been reported in elderly cancer patients (Devik, Hellzen, & Enmarker, 2017;Esbensen et al, 2008;Jo, Brazil, Lohfeld, & Willison, 2007). Patients and family members are reciprocally affected by each other's emotional stress (Hagedoorn, Sanderman, Bolks, Tuinstra, & Coyne, 2008;Lo et al, 2013;Mystakidou et al, 2013).…”

Perspectiva de la familia / cuidador sobre el dolor crónico en pacientes con cuidados paliativos

“…Estudo realizado na Noruega com familiares de paciente em cuidados paliativos e que investigou o sofrimento destes familiares quando da prestação dos cuidados, aponta que o sofrimento familiar é um reflexo do sofrimento do doente, e isso traz para o cuidador uma desordem de sentimentos no acompanhamento de seu familiar, pois há uma identificação na relação angustiante, o que é sentido intensamente por ambos 13 . Nesse conflito de sentimentos os familiares vivenciam uma carga emocional muito pesada, por necessitar manter o equilíbrio para continuar prestando o cuidado ao seu ente querido mesmo diante da inexorabilidade da morte.…”