Next of kin of cancer patients – Challenges in the situation and experiences from a next of kin course

Thorsnes, Sigrid Lerstad; Blindheim, Kari; Brataas, Hildfrid V.

doi:10.1016/j.ejon.2014.07.001

Cited by 7 publications

(5 citation statements)

References 39 publications

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“…It is also essential to have a clear distribution of roles and responsibility between HCP and the caregivers [8,[37][38][39][40]. Caregivers are often not used to care for severely ill patients and therefore have no previous knowledge about caring tasks, cancer or end-of-life care, which makes them dependent on HCP and HCS to fulfil the task [39,41]. This is consistent with the findings in our study.…”

Section: Discussionsupporting

confidence: 89%

A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer

et al. 2021

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Background For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers’ feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. Methods A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann’s qualitative method for analysis. Results Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: “Personal factors”, “Healthcare professionals” and “Organization” of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. Conclusion Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.

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Section: Discussionsupporting

confidence: 89%

A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer

et al. 2021

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“…Results of the present study indicate that their renouncement of their own needs and priorities, their leisure activities, and their social lives in favour of the person with MS continues after the initial phase because of the person with MS's occasional falls. Next of kin of people with MS have also previously reported decreased freedom and curtailed independence [4,5,23], as have the next of kin of people with other diseases, such as cancer [27] or muscular dystrophy [28]. The results of present study may not be specific to MS, but could also be relevant to other diseases with increased risk of falls.…”

Section: Discussionsupporting

confidence: 61%

Making it work: experience of living with a person who falls due to multiple sclerosis

Carling

Nilsagård

Forsberg

2018

Disability and Rehabilitation

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Purpose: The purpose of this study was to describe how everyday life is experienced by next of kin sharing residence with a person who falls due to multiple sclerosis (MS). Methods: Twenty face-to-face interviews were analysed using a qualitative content analysis. Results: The overall theme "Making it work" represents the next of kin's struggle to make life work. It comprises three themes: "Taking responsibility", "Making adjustments", and "Standing aside for someone else". The two first themes reflect what relatives do to make the situation work, and the last theme represents what they give up. Conclusion: Next of kin who share residence and everyday life with a person with MS are affected by that person's occasional falls. They often take on the responsibility of preventing such falls and adapt their lives practically and emotionally. However, adaptation is neither always enough or always possible. In these cases, relatives often deprioritize their own needs and free time to make everyday life in the home work. ä IMPLICATIONS FOR REHABILITATIONBy highlighting that next of kin also are affected by the falls of their cohabiting person with multiple sclerosis enhances the importance of fall prevention activities that should include the next of kin. Next of kin to people who occasionally fall due to multiple sclerosis can be in need of both practical and emotional support from the health care system. Enhanced information from the health care system can empower and help them to take care of themselves while managing to live with, care for, and protect the person with multiple sclerosis from falls.

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“…On the one hand, coping is discussed in the context of psycho-oncology. There, it is often divided into problem- and emotional-focused strategies [ 19 , 28 , 29 ]. We decided against this division, as our study was an exploration through the patients’ and the relatives’ perspective rather than through a psychologic perspective.…”

Section: Discussionmentioning

confidence: 99%

Reflection of illness and strategies for handling advanced lung cancer – a qualitative analysis in patients and their relatives

Sparla

Flach-Vorgang

Villalobos

et al. 2017

BMC Health Serv Res

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BackgroundLung cancer patients are often diagnosed in an advanced stage of disease. In a situation of palliative treatment, both patients and their relatives experience existential burden. Evidence suggests that multi-professional teams should deal with them as dyads. However, little is known about differences in their individual situation. The purpose of this study is to explore and compare reflections that arise out of the context of diagnosis and to compare how patients and their relatives try to handle advanced lung cancer.MethodsData was collected by qualitative interviews. A total of 18 participants, 9 patients diagnosed with advanced lung cancer (ICD- 10 C-34, stage IV) starting or receiving palliative treatment and 9 relatives were interviewed. Data was interpreted using qualitative content analysis.ResultsReflection aspects were “thoughts about the cause”, “meaning of belief” and “experience of inequity”. Patients often experienced the diagnosis as inequity and were more receptive for believing in treatment success. The main strategies found were “repression”, “positive attitude”, “strong focus on the present” and “adjustment of life terms”. Patient and relative dyads used the same strategies, but with different emphasis. That life time is limited was more frequently realized by relatives than by patients.ConclusionWhile strategies used by relatives are similar to those of patients’, they are less reflective and more pragmatic in terms of handling daily life and organizing care. The interviewed patients were mostly not able to takeover these tasks. To strong was their belief in treatment success, their repression of the future and the focus on the present. This implicates, that in terms of end-of-life care, relatives are important to reach patients who are often not receptive to this topic.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2110-x) contains supplementary material, which is available to authorized users.

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Next of kin of cancer patients – Challenges in the situation and experiences from a next of kin course

Cited by 7 publications

References 39 publications

A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer

A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer

Making it work: experience of living with a person who falls due to multiple sclerosis

Reflection of illness and strategies for handling advanced lung cancer – a qualitative analysis in patients and their relatives

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