Do You Feel Safe at Home? A Qualitative Study among Home-Dwelling Older Adults with Advanced Incurable Cancer

Grov, Ellen Karine; Ytrehus, Siri

doi:10.3390/healthcare10122384

Cited by 3 publications

(3 citation statements)

References 45 publications

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“…Feeling unprepared for their new role as carers and lacking information and knowledge were some of the greatest obstacles reported by those walking on this lesstravelled road. The feeling of being unprepared for the caregiver role is in line with other studies on end-of-life care and is not limited to rural areas [4,17,51,52]. Not knowing what to expect around the next bend of the road while carrying the heavy load of responsibility is interpreted as a double burden in our meta-ethnography.…”

Section: Discussionsupporting

confidence: 80%

Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

Breivik,

Ervik,

Kitzmüller

2023

Preprint

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Background: As the population ages, more people will be diagnosed with cancer, and they will live longer due to receiving better treatment and optimized palliative care. Family members will be expected to take on more responsibilities related to providing palliative care at home. Several countries have expressed their vision of making home death an option, but such a vision can be more challenging in rural areas. There is a lack of synthesized research providing an in-depth understanding of rural family caregiving for people with cancer at the end of life. Thus, the purpose of this study was to synthesize and reinterpret the findings from qualitative research on rural family caregivers of adult cancer patients in the final stages of life. Methods: We conducted a meta-ethnography following Noblit and Hare’s approach. A systematic literature search of four databases and extensive manual searches were completed in April 2022. The final sample included twelve studies from six different countries published in 2011-2022. Results: Based on the translation and synthesis of the included studies, four themes were developed (1) providing family care at the end of life in rural areas - a challenging endeavour; (2) the heavy responsibility of rural caregiving - a lonesome experience; (3) working on and behind the scenes; and (4) the strong and weak spots of community connectedness in rural areas. An overarching metaphor, namely, “ambivalent and heavy burdened wanderers on a road less travelled”, provides a deeper understanding of the meaning of rural family caregiving at the end of life. Conclusions: This study provides valuable insights into end-of-life cancer care for rural families. It is crucial to prepare family carers for the demanding role of palliative caregiving in rural areas. To address the long distances and poor access related to specialized health care services, outpatient palliative teams tailored to the families’ individual needs should be provided. In addition, more telehealth services, palliative units, or beds in local nursing facilities may reduce the number of exhausting trips that need to be made by caregivers and patients. The further education of health care workers providing palliative care in rural areas is needed. Trial registration: The study was registered in PROSPERO

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Section: Discussionsupporting

confidence: 80%

Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

Breivik,

Ervik,

Kitzmüller

2023

Preprint

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“…A previous study conducted in Hunan Province, China, showed that nurses were concerned about the safety of patients and their own practice during home visits [ 44 ]. Furthermore, some relevant studies had also reported the need to enhance the safety management of home care [ 45 , 46 ]. The six items in the safety practice dimension of this study included risk identification, use of the APP locator system, wearing an alarm device, occurrence of patient accidents, medical staff safety accidents, and requesting support, with the lowest scores for the items using the APP locator system and wearing an alarm device, which was in line with the results of other researchers [ 47 ].…”

Section: Discussionmentioning

confidence: 99%

Home care practice behavior and its influencing factors of primary care providers: a multicenter cross-sectional study in Sichuan Province, China

Zhou,

Liu,

2024

BMC Nurs

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Background Primary care providers play an important role in home health care, and their practice behavior is significant for care quality and patient outcomes. This study aimed to assess the home care practice behavior of Chinese primary care providers and to explore the factors associated with the practice behavior. Methods A multicenter cross-sectional design with a convenience sample was used to survey 863 registered primary care providers from 62 primary health care settings in Sichuan Province, China. Descriptive statistics, t-test or ANOVA for one-way analysis, and Pearson’s correlation analyses were used to compare the differences and examine the relationships between participants’ demographics and experience of home care services and practice behavior. Multiple linear regression models were performed to identify salient variables associated with the practice behavior from among demographic and home care experience. Results The score of home care practice behavior questionnaire was 97.25 ± 21.05. The average scores for the dimensions of home visit preparation, assessment, medical care behavior and safety practice were 3.70 ± 0.95, 3.76 ± 1.02, 3.66 ± 1.03, and 3.20 ± 0.46, respectively. Home care practice behavior was associated with working years, working experience in general hospitals, work area, home care experience such as client types of home care, service frequency and willingness, explaining 21.5% of the total variance. Conclusion Chinese primary care providers had a medium to high level of home care practice behavior but poor implementation of safety practice. The results may provide clues to increased focus and implementation of safety practice, as well as providing targeted measures based on influencing factors.

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“…Such words indicate an affective bond between people and their homes, which relates to both the fundamental character of the home itself and the meaning people assign to it. 15,24 This bond between person and home is a common finding in studies related to the meaning of home. For example, Hilli and Erikson 25 claimed that being home entailed being at home in oneself.…”

Section: Introductionmentioning

confidence: 92%

The feeling of being home when nearing end-of-life—the example of Norway: A discussion paper

Staats

Ervik

Fæø

2023

Nordic Journal of Nursing Research

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Home is regarded as an important and safe place to be when nearing the end of life. However, for some, the home may be a place where people feel anxious and alone. The aim of this discussion paper is to reflect on the contextual and theoretical meaning of home. We will, based on a broader understanding of home, also suggest that home-deaths can take place both in a home-based care context and a facility-based care context, as the meaning of home belongs to the individual. We will end our discussion by concluding that the actions of care and nurses’ attitudes are of vital importance, so that a feeling of home can be created for patients nearing the end of life, irrespective of their context.

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Do You Feel Safe at Home? A Qualitative Study among Home-Dwelling Older Adults with Advanced Incurable Cancer

Cited by 3 publications

References 45 publications

Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

Home care practice behavior and its influencing factors of primary care providers: a multicenter cross-sectional study in Sichuan Province, China

The feeling of being home when nearing end-of-life—the example of Norway: A discussion paper

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