Quality of end-of-life care for those who die at home: views and experiences of bereaved relatives and carers

Lees, Carolyn; Mayland, Catriona; West, Angela; Germaine, Alison

doi:10.12968/ijpn.2014.20.2.63

Cited by 13 publications

(19 citation statements)

References 8 publications

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“…The potentially different or conflicting needs of dying people and their family carers are described in the literature,7 32 but our study develops this theme, adding important details to aid crucial understanding of how the home as a setting contributes to conflicting emotions. The satisfaction of the perception of having supported a ‘good death’ appeared to be key in enabling many of the family carers to tolerate significant changes to their own routines and environment while striving to maintain normality for the dying person.…”

Section: Discussionmentioning

confidence: 96%

Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study)

Pottle

Hiscock

Neal

et al. 2017

BMJ Support Palliat Care

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ObjectivesSupporting patients to die in the place of their choosing is an important aspect of end of life care. Our study set out to answer the question: ‘How does the home environment influence perceptions of quality of death, and the experience of caring for the dying at home, for family carers and healthcare professionals (HCPs)?MethodsA qualitative approach, using multiperspective interviews with bereaved family carers (n=15) and a nominated HCP (n=13) ensured depth of insight gained into supporting a home death. The semistructured interviews were audio recorded, transcribed verbatim and analysed using Framework.ResultsWe found that the home environment enabled normality, a sense of control and individualised care which family carers often perceived as contributing towards a good death. However, the home environment created challenges for both family carers and HCPs, due to the differing and at times conflicting needs of the dying person and their family carers.ConclusionsWe have shed light on the complexity of balancing the demands and the satisfaction of caring for someone dying at home. The ability to manage these conflicting needs influenced whether carers perceived the home setting as the best place for the person to have received care in their last days of life.

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Section: Discussionmentioning

confidence: 96%

Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study)

Pottle

Hiscock

Neal

et al. 2017

BMJ Support Palliat Care

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show abstract

“…To improve the care, we need to be able to assess the current quality of care in a reliable manner. One internationally recognized method for evaluating care for dying patients is to ask bereaved relatives through post-bereavement surveys [ 8 , 9 ]. ‘Care Of the Dying Evaluation’ (CODE™) is a recognised, validated post-bereavement questionnaire focused on both quality of patient care and support for the relatives in the patient’s last 2 days of life and the immediate post-bereavement period [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

“…One internationally recognized method for evaluating care for dying patients is to ask bereaved relatives through post-bereavement surveys [ 8 , 9 ]. ‘Care Of the Dying Evaluation’ (CODE™) is a recognised, validated post-bereavement questionnaire focused on both quality of patient care and support for the relatives in the patient’s last 2 days of life and the immediate post-bereavement period [ 8 ]. In addition to questions with pre-determined response categories asking about nursing and medical care, symptom relief, communication, emotional and spiritual support, and circumstances surrounding the death, responders may add free text comments.…”

Section: Introductionmentioning

confidence: 99%

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway

et al. 2020

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Background: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments. Methods: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to nonresponders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation. Results: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/ surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.

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“…This result was mirrored both by the work of Eilegard et al (2013) who found that 99% of their participants stated that the study was valuable and they welcomed the chance to tell their bereavement story, and also by Stiel et al (2015) who found that their participants had a high willingness to participate and stated they benefited from the research discussions, reporting low to moderate levels of burden (Stiel et al, 2015). Lees et al (2014) also reported that a specific finding from their work was that participants positively welcomed the opportunity to talk about their experiences of being alongside a loved one at the end of life.…”

Section: Resultsmentioning

confidence: 90%

A focused mapping review and synthesis of current practice in qualitative end of life research with the bereaved

et al. 2019

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Background. Nursing research is dedicated to improving care, but research into end of life care can be challenging because of a possible reluctance by researchers to invite bereaved people to take part in studies. Aim. To use a focused mapping approach to explore the recruitment to studies of grieving and bereaved people. Discussion. There is no 'gold standard' method of recruitment and no best way to approach participants. The outcome of each method, measured by the percentage of potential participants recruited, appears to be unrelated to the approach used. Conclusion. There is no evidence that participation in research harms those who have recently been bereaved, but there is evidence of benefits from participating. Implications for practice. Researchers should not feel they need to protect the bereaved from participating in research and can invite bereaved individuals to join a study without worrying about causing them harm.

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Quality of end-of-life care for those who die at home: views and experiences of bereaved relatives and carers

Cited by 13 publications

References 8 publications

Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study)

Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study)

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway

A focused mapping review and synthesis of current practice in qualitative end of life research with the bereaved

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