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

Hansen, Marit Irene Tuen; Haugen, Dagny Faksvåg; Sigurdardottir, Katrin Ruth; Kvikstad, Anne; Mayland, Catriona; Schaufel, Margrethe Aase

doi:10.1186/s12904-020-00609-x

Cited by 10 publications

(12 citation statements)

References 31 publications

(35 reference statements)

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“…The lack of concordance of the perceptions of the relatives about the patients' worries and concerns fits to the study of Oi-Ling et alcaregivers and professionals failed to rate the most distressful symptoms in agreement with the patients [25]. Furthermore, in contrast to other studies which detected important needs for medical information [10,39], patients seem to have their basic information needs covered: only five patients indicated having had little medical information.…”

Section: Discussionsupporting

confidence: 58%

Palliative Oncological Patients with Insomnia: Concerns of the Patients and Their Relatives’ Perception

Guiteras

Abelló

Domingo

et al. 2021

IJERPH

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Insomnia is one of the most frequent symptoms and usually generates significant stress in 60% of patients with advanced cancer. Worries from the patients’ and relatives’ perspective are crucial to improve the patients’ quality of life but have received limited attention. The aims were to identify the concerns of patients with insomnia in the terminal illness stage in a palliative care unit and the relatives’ perception, and to compare both. Here, 63 patients and 53 relatives answered a questionnaire about worries in the personal, spiritual, family-related and economic area, as well as a quality-of-life uniscale. The results showed that the relatives’ most frequent concern was “Having lived life to the fullest” (100%), and the most intense was “The possible suffering during the process” (9.2/10). The patients’ most expressed concern was: “Having unfinished business” (100%), and the most intense was “Suffering during the process” (9.3/10). Quality of life showed an average value of 6.95 out of 10. Relatives only coincided significantly in: “Not knowing what happens after death” (r = 0.600; p = 0.000). These results bring visibility to concerns during the final stage of oncological palliative patients with insomnia from the patients’ and relatives’ perspective. Knowing both is useful for professionals to foster the well-being for a short, yet very important, period for patients, relatives and the caregiving team.

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Section: Discussionsupporting

confidence: 58%

Palliative Oncological Patients with Insomnia: Concerns of the Patients and Their Relatives’ Perception

Guiteras

Abelló

Domingo

et al. 2021

IJERPH

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“…In this study, both patients and caregivers had adequate understanding of the cancer disease in their narrative which implied that healthcare workers provided elaborate information to the extent that every family member involved from the client side were knowledgeable about the disease condition 12 . This was an indication that effective communication between health providers and clients took place.…”

Section: Discussionmentioning

confidence: 99%

“…Studies that have been conducted on QOL among patients living with cancer and their families had reported wide range of perceived factors contributing to the severity of QOL-related health problems 11 . The perceived factors ranged from lack of staff, lack of continuity of care, professional incompetence or disorganized healthcare services contributing to poor QOL as reported in Norway 12 . Other participants complained of inadequate information to patients and family members generating unpredictable and distressing nal illness trajectories 4,10 .…”

Section: Introductionmentioning

confidence: 99%

Perceived health-related quality of life among patients living with cancer at Kamuzu Central Hospital in Malawi

Banda¹,

Bula²,

Tsidya³

et al. 2023

Preprint

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Patients living with cancer and their families experience several challenges that affect their health-related quality of life (HRQOL). Perceived factors affecting quality of life (QOL) among people living with cancer have rarely been studied. We aimed at exploring the factors perceived to be associated with health-related quality of life among people living with cancer attending to a National Cancer Centre at Kamuzu Central Hospital in Malawi. Between May and June 2022, we conducted a qualitative study to assess perceptions and the in-depth lived experiences for people living with cancer, caregivers and healthcare workers at the cancer center on health-related quality of life. We purposively selected and interviewed thirteen participants. Interviews were transcribed, coded using NVivo 12 and analyzed using thematic analysis. Two broad categories of emerging themes of quality of life were identified. These included: (a) individual level factors such as experiences with diagnosis and treatment, changes on physical, psychological and social health, support received, benefits and challenges, (b) facility level factors such as availability of resources, relationship with providers, satisfaction with cancer care, facility organization, facilitators and barriers to improved quality of life. This study has highlighted the importance of physical, psychological, and social factors as key determinants perceived to be affecting health-related quality of life among patients living with cancer and their caregivers at the National Cancer Centre, Kamuzu Central Hospital in Malawi. The QOL challenges experienced by patients and their caregivers, implied that cancer care interventions should consider a holistic approach to cover for all dimensions of life in order to improve health-related quality of life among patients living with cancer.

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“…We found the grateful experiences were often linked to medical staff, reflecting the relatives’ memory of a healing attachment, the difference the “one person” made. The separate analysis of the 104 Norwegian free-texts from the ERANet-LAC study found, first, attentive care promoting dignity of the dying and, second, the need for impeccable organization such as sufficient staffing and competence levels, coordination, and continuity of care [ 41 ]. The two themes were interconnected by the presence of competent and compassionately acting staff managing difficult situations.…”

Section: Discussionmentioning

confidence: 99%

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

Self Cite

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

Cited by 10 publications

References 31 publications

Palliative Oncological Patients with Insomnia: Concerns of the Patients and Their Relatives’ Perception

Palliative Oncological Patients with Insomnia: Concerns of the Patients and Their Relatives’ Perception

Perceived health-related quality of life among patients living with cancer at Kamuzu Central Hospital in Malawi

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

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