Developing Unique Insights From Narrative Responses to Bereaved Family Surveys

Gray, Caroline; Yefimova, Maria; McCaa, Matthew; Goebel, Joy R.; Shreve, Scott; Lorenz, Karl; Giannitrapani, Karleen F.

doi:10.1016/j.jpainsymman.2020.05.007

Cited by 9 publications

(16 citation statements)

References 28 publications

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“…Opportunities for extended family (i.e. beyond the immediate family members) to have consistent information for clinicians’ coordinated communication [ 28 ] or to be involved in key discussions, e.g. family meetings, were appreciated [ 19 , 25 , 26 ].…”

Section: Resultsmentioning

confidence: 99%

“…While the preference was usually for more information, some caregivers appreciated the health professionals asking them how much they wanted to know [ 15 , 20 ]. It was common for patients and family members to report receiving inadequate or contradictory information, particularly about the patient’s diagnosis and prognosis [ 13 , 14 , 16 – 19 , 22 , 25 – 28 ].…”

Section: Resultsmentioning

confidence: 99%

“…Patients and their family/caregivers frequently mentioned the need for clinicians to alert families about the patient’s final hours [ 28 ], and be open and honest about the patient’s prognosis, with a focus on ensuring the likelihood of death was communicated clearly, without using jargon, euphemisms like ‘not doing well’, or speaking in general terms like ‘needing hospice’ [ 13 , 15 – 17 , 19 , 22 , 23 , 25 , 26 ]. Family members felt that straightforward and realistic information from health professionals was more valuable than encouragement to keep up hope, which caused confusion [ 19 , 26 ].…”

Section: Resultsmentioning

confidence: 99%

“…For instance, some caregivers accepted the patient’s wishes reluctantly, while others gave medical orders against patient’s wishes after losing their capacity to make decisions [ 15 , 17 , 24 ]. And in two studies, family members reported that health professionals did not follow patient’s request to stop treatments [ 28 ], or adhere to advance care directives, with the reasons for this unclear to them [ 23 ].…”

Section: Resultsmentioning

confidence: 99%

“…Two studies showed that staying near the dying person’s hospital was important and reflected good quality of care. While some families appreciated social workers and other staff making arrangements for overnight stays near the hospital [ 27 , 28 ], while others expressed disappointment that they did not have opportunity for proper final goodbyes due to lack of an adjacent hotel [ 27 ].…”

Section: Resultsmentioning

confidence: 99%

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Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review

et al. 2021

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Background Overtreatment in advanced age i.e. aggressive interventions that do not improve survival and are potentially harmful, can impair quality of care near the end of life (EOL). As healthcare provider perspectives on care quality may differ from that of service users, the aim of this study was to explore the views of older patients near EOL or their caregivers about the quality of health care at the EOL based on their lived experience, and to identify healthcare service improvements. Methods Medline and backward citation searches were conducted for qualitative or quantitative studies reported on the views of patients and/or informal caregivers about EOL care quality. Thematic analysis was used to summarise qualitative data (primary analysis); narrative and tabulations were used to summarise quantitative data (secondary analysis). Results Thirty articles met the inclusion criteria. Five main qualitative themes regarding quality care emerged: (1) Effective communication between clinicians and patients/caregivers; (2) Healthcare that values patient preferences and shared decision making; (3) Models of care that support quality of life and death with dignity; (4) Healthcare services that meet patient expectations; and (5) Support for informal caregivers in dealing with EOL challenges. The quantitative articles supported various aspects of the thematic framework. Conclusion The findings of this study show that many of the issues highlighted by patients or bereaved relatives have persisted over the past two decades. There is an urgent need for comprehensive evaluation of care across the healthcare system and targeted redesign of existing EOL care pathways to ensure that care aligns with what patients and informal caregivers consider high-quality patient-centred care at the EOL.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review

et al. 2021

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What do bereaved relatives of cancer patients dying in hospital want to tell us? Analysis of free-text comments from the International Care of the Dying Evaluation (i-CODE) survey: a mixed methods approach

Gerlach

Baus

Gianicolo

et al. 2022

Support Care Cancer

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Purpose We conducted an international survey of bereaved relatives of cancer patients dying in hospitals in seven countries, with the aim to assess and improve the quality of care. The survey used the i-CODE (International Care of the Dying Evaluation) questionnaire. Here, we report findings from the free-text comments submitted with the questionnaires. We explored for topic areas which would potentially be important for improving the quality of care. Further, we examined who reported free-texts and in what way, to reduce bias without ignoring the function the free-texts may have for those contributing. Methods We used a combined qualitative-quantitative approach: logistic regression analysis to study the effect of respondents’ socio-demographic characteristics on the probability of free-texts contributions and thematic analysis to understand the free-text meaning. The primary survey outcomes, (1) how frequently the dying person was treated with dignity and respect and (2) support for the relative, were related to free-text content. Results In total, 914 questionnaires were submitted; 457/914 (50%) contained free-text comments. We found no socio-demographic differences between the respondents providing free-texts and those who did not. We discovered different types of free-texts (“feedback,” “narrative,” “self-revelation”) containing themes of which “continuity of care,” “the one person who can make a difference,” and “the importance of being a companion to the dying” represent care dimensions supplementing the questionnaire items. A free-text type of grateful feedback was associated with well perceived support for the relative. Conclusion Bereaved relatives used the free-texts to report details related to i-CODE items and to dimensions otherwise not represented. They highlighted the importance of the perceived support from human interaction between staff and the dying patient and themselves; and that more than professional competence alone, personal, meaningful interactions have profound importance.

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Family perspectives on end-of-life care after surgery: A qualitative analysis of the veteran affairs bereaved family surveys

Vitous,

Shabet,

Ferguson

et al. 2023

The American Journal of Surgery

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Developing Unique Insights From Narrative Responses to Bereaved Family Surveys

Cited by 9 publications

References 28 publications

Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review

Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review

What do bereaved relatives of cancer patients dying in hospital want to tell us? Analysis of free-text comments from the International Care of the Dying Evaluation (i-CODE) survey: a mixed methods approach

Family perspectives on end-of-life care after surgery: A qualitative analysis of the veteran affairs bereaved family surveys

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