Informal support needs of cancer patients who are living alone: a qualitative insight

Benoot, Charlotte; Deschepper, Reginald; Saelaert, Marlies; Grypdonck, Maria; Bilsen, Johan

doi:10.1002/pon.3766

Cited by 4 publications

(5 citation statements)

References 25 publications

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“…Qualitative researchers who explore individuals’ experiences of illness, death, and dying are exposed to an emotionally stressful work environment (Dickson-Swift, James, Kippen, & Liamputtong, 2008). As a qualitative researcher myself, I (CB) was appointed in 2011 to conduct a research project on the lived experiences of people with cancer who are living alone (Benoot, Bilsen, Grypdonck, & Deschepper, 2014; Benoot, Deschepper, Saelaert, Grypdonck, & Bilsen 2015). After 2 years, having conducted and analyzed 49 interviews among this population, I was confronted with serious emotional distress that kept me from my work for almost 6 months.…”

Section: Introductionmentioning

confidence: 99%

An Auto-Ethnographic Study of the Disembodied Experience of a Novice Researcher Doing Qualitative Cancer Research

Benoot

Bilsen

2015

Qual Health Res

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Qualitative health researchers who explore individuals' experiences of illness are exposed to an emotionally demanding work environment. After doing 49 interviews with cancer patients living alone, I was confronted with serious emotional distress that kept me from my work for almost 6 months. Because there is a need for discussion within academia about the emotional risks encountered by researchers, I used auto-ethnography to explore what I call the "three disembodied experiences" I encountered during the research: disembodiment linked with suppression of emotions, disembodiment linked with distal traumatization, and disembodiment linked with overidentification with the participant. I illustrate these concepts with personal stories of doing research with cancer patients living alone. I conclude that writing down experiences of doing qualitative research in an embodied and reflexive way holds two advantages: It can protect the researcher and enhance the quality of research.

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Section: Introductionmentioning

confidence: 99%

An Auto-Ethnographic Study of the Disembodied Experience of a Novice Researcher Doing Qualitative Cancer Research

Benoot

Bilsen

2015

Qual Health Res

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“…Identificación de posibles usos del concepto -A partir del análisis de los datos, los investigadores identificaron las áreas que abordan el concepto, siendo estas áreas más prácticas, donde existe un contacto directo entre el profesional y el paciente. Entre estas áreas encontramos enfermería (13) , medicina (4,5) , psicología (14,15) , fisioterapia (16) , ciencias farmacéuticas (12,17) , terapia ocupacional (18,19) , ciencias de la salud (20)(21)(22) , educación física (23) y sociología (24,25) . Otras áreas como la ingeniería, a pesar de no trabajar directamente con el paciente, invierten en investigación y en la realización de medios / estrategias adaptativas, capaces de responder a la independencia (26,27) .…”

Section: Resultsunclassified

“…Algunos autores se refieren a la independencia como la capacidad financiera (14) , capacidad para mantener relaciones sociales (29) , habilidad cognitiva (29) , capacidad para resolver problemas (29) y capacidad para tomar decisiones (20) . De ahí la confusión que existe en ambos conceptos.…”

Section: Discussionunclassified

From the concept of Independence to the questioning of its use in practice: scoping review

Lima¹,

Martins

Ferreira

et al. 2022

Enf Global

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Background: Independence is a widely used concept by the most practical areas of health knowledge, being essential to know its real meaning for subsequent application. Method: Scoping review based on the recommended principles by Joanna Briggs Institute and by the conceptual analysis method from Walker and Avant. Careful research was realized in the databases: Scopus, CINAHL complete, and MEDLINE. Two independent reviewers evaluate the relevance of the articles' understudy, the extraction, and article synthesis.Results: One hundred and two articles were included, after the application of the inclusion criteria. The majority of the authors define independence as the physical capacity for self-care and for the realization of the daily activities. Other authors, confuse independence with autonomy, referring to independence as the cognitive capacity, financial capacity, social capacity, and decision capacity.Conclusions: Independence includes the ability to perform self-care and daily living activities. Introducción: La independencia es un concepto muy utilizado por las áreas más prácticas del conocimiento en salud, siendo fundamental conocer su significado real para su posterior aplicación.Método: Revisión de alcance basada em los princípios recomendados por el Instituto Joanna Briggs y por el método de análisis conceptual de Walker y Avant. Se realizó uma cuidadosa investigación en las bases de datos: Scopus, CINAHL complete y MEDLINE. Dos revisores independientes evalúan la relevancia de los artículos en estudio, la extracción y síntesis del artículo.Resultados: Se incluyeron ciento y dos de los artículos, luego de la aplicación de los criterios de inclusión. La mayoria de los autores definen la independencia como la capacidad física para el autocuidado y para la realización de las actividades diarias. Otros autores confunden independencia com autonomia, refiriéndose a la independencia como capacidad cognitiva, capacidade financiera, capacidad social y capacidad de decisión.Conclusiones: La independencia incluye la capacidad para realizar actividades de autocuidado y de la vida diaria. Antecedentes: Independência é um conceito amplamente utilizado pelas áreas mais práticas do conhecimento em saúde, sendo essencial conhecer o seu real significado para posterior aplicação. Método: Scoping review baseada nos princípios recomendados pela Joanna Briggs Institute e pelo método de análise conceitual de Walker e Avant. Uma pesquisa cuidados foi realizada nas bases de dados: Scopus, CINAHL complete, and MEDLINE. Dois revisores independentes avaliaram a relevância dos artigos em estudo, a extração e síntese dos artigos.Resultados: Cento e dois artigos foram incluídos, após a aplicação dos critérios de inclusão. A maioria dos autores define independência como a capacidade física para o autocuidado e para a realização das atividades de vida diárias. Outros autores confundem independência com autonomia, referindo-se à independência como a capacidade cognitiva, capacidade financeira, capacidade de sociabilizar e capacidade de decisão. Conclusions: Independência inclui a capacidade para o autocuidado e para as atividades de vida diária.

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“…Such individuals were at high risk of not being able to access cancer treatments if alternative support was not identified and may provide one explanation for the reported lower cancer treatment rates in people with dementia [ 5 ]. Existing research on the needs of people living alone with cancer does not consider individuals with extensive self-care needs and focuses on the balance between provision of support and maintenance of independence [ [29] , [30] , [31] , [32] ]. The literature on living alone with dementia acknowledges the challenges individuals may face in caring for their own health and well-being [ 33 ] in accessing required services and support [ 34 ] and the difficulties professionals may face in meeting support needs considered to be outside of their role [ 35 ].…”

Section: Discussionmentioning

confidence: 99%

Enabling people with dementia to access and receive cancer treatment and care: The crucial role of supportive networks

Surr

Kelley

Griffiths

et al. 2020

Journal of Geriatric Oncology

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Objectives Despite cancer and dementia being conditions in which prevalence increases with age, there remains limited research on the cancer treatment and care needs of this population. Our study aimed to address this gap and this paper reports on the role of supportive networks in enabling people with dementia to access cancer treatment and care. Materials and methods An ethnographic study involving seventeen people with cancer and dementia, 22 relatives and nineteen oncology staff. It comprised observations (46 h) of and informal conversations during oncology appointments attended by people with dementia and their relatives and semi-structured interviews ( n = 37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services. Data were analysed using thematic analysis. Results Patients and oncology staff relied on and expected relatives to provide practical and emotional support around cancer treatment and care. Families varied in their ability to provide required support due to extent of the family network, practical issues, knowledge of the patient and their wishes, family conflict and the patient's willingness to accept help. Where no family network was available, support provision was complex and this could compromise access to cancer treatment. Conclusions People with comorbid cancer and dementia rely heavily on a supportive family network to access treatment and care. Oncology services need to assess the supportive networks available to individual patients in developing cancer treatment plans. Urgent consideration needs to be given to how those with no family networks can be appropriately supported.

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Informal support needs of cancer patients who are living alone: a qualitative insight

Cited by 4 publications

References 25 publications

An Auto-Ethnographic Study of the Disembodied Experience of a Novice Researcher Doing Qualitative Cancer Research

An Auto-Ethnographic Study of the Disembodied Experience of a Novice Researcher Doing Qualitative Cancer Research

From the concept of Independence to the questioning of its use in practice: scoping review

Enabling people with dementia to access and receive cancer treatment and care: The crucial role of supportive networks

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