Patients’ experiences of their everyday life 14 months after cytoreductive surgery and hyperthermic intraperitoneal chemotherapy – a qualitative follow‐up study

Swenne, Christine Leo; Jangland, Eva; Arakelian, Erebouni

doi:10.1111/scs.12412

Cited by 8 publications

(6 citation statements)

References 36 publications

(64 reference statements)

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“…The results show how cancer can influence everyday life in different ways after falling ill. This resonates with previous follow-up studies that focus on different cancer types (Isaksson et al, 2016;Salander et al, 2011;Swenne et al, 2017). As the results of the study show, agency in everyday life is not a static phenomenon but instead, is tightly linked to the life situation of the individual.…”

Section: Discussionsupporting

confidence: 89%

“…Previous research has focused on patients' quality of life and everyday life experiences after cancer treatments (e.g., Kerr, Ross, Jaques, & Cunningham-Burley, 2018;Pedresen, Koktved, & Nielsen, 2013;Salander, Bergenheim, & Henriksson, 2000;Sekse, Raaheim, Blaaka, & Gjengedal, 2010). The experience of cancer brings profound changes in bodily and psychosocial functioning into patients' day-to-day lives, and this generates the need for information and support from health care professionals (Pedresen et al, 2013;Sekse et al, 2010;Swenne, Jangland, & Arakelian, 2017). The side effects of treatment are recognized in the busy healthcare system, but schedule pressures and short patient encounters can make it challenging to formulate a clear rehabilitation plan or to take into account the other needs in patients' everyday lives (Pedresen et al, 2013;Swenne et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

“…The experience of cancer brings profound changes in bodily and psychosocial functioning into patients' day-to-day lives, and this generates the need for information and support from health care professionals (Pedresen et al, 2013;Sekse et al, 2010;Swenne, Jangland, & Arakelian, 2017). The side effects of treatment are recognized in the busy healthcare system, but schedule pressures and short patient encounters can make it challenging to formulate a clear rehabilitation plan or to take into account the other needs in patients' everyday lives (Pedresen et al, 2013;Swenne et al, 2017). Because of the controversy over what patients get and what they actually need, it is important to study their everyday lives alongside the medical setting.…”

Section: Introductionmentioning

confidence: 99%

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Stable, fragile and recreated – a qualitative study of agency in everyday life with breast and prostate cancer

Holmberg

2019

International Journal of Qualitative Studies on Health and Well

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Purpose: This study aims to explore how agency is constructed in everyday life with cancer in relation to daily activities and habits. Agency is approached as a key element of daily life existence, and it is constructed in terms of "acting in the world", self-behaviour, changing routines, identity expectations and life course. Methods: The study is based on a social constructionist approach and the data of 32 participants were gathered through a public call for narratives on "everyday life with breast and prostate cancer" in Finland in 2009. The analysis was conducted by utilizing a discursive research approach and coding. Results: Three categories of agency were identified: stable-where agency continues fluently after cancer; fragile-where the ability to take care of daily activities has deteriorated; and recreated-where living with cancer adapts or creates a new basis for daily living. Conclusions: The findings of the study suggest that everyday life activities and habits define and (de)construct agency, and that these constructions are tightly linked to the ill person's overall life situation, physical abilities and cultural context. Having cancer can create new challenges to agency in daily life but does not suppress agency.

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Section: Discussionsupporting

confidence: 89%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Stable, fragile and recreated – a qualitative study of agency in everyday life with breast and prostate cancer

Holmberg

2019

International Journal of Qualitative Studies on Health and Well

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“…The last category, category 6, included tasks that contributed specifically to building new social resources for the patient, searching for and attending patient support groups [ 57 , 59 , 67 , 73 , 99 ], and teaching others about their health [ 2 , 51 , 57 , 71 , 89 ]. Patients actively create new social circles and recruit other people into their lives, whether by joining patient support groups or educating family and friends about their health [ 2 , 51 , 57 , 71 , 89 ].…”

Section: Resultsmentioning

confidence: 99%

Patient Work and Their Contexts: Scoping Review

et al. 2020

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Background Having patients self-manage their health conditions is a widely promoted concept, but many patients struggle to practice it effectively. Moreover, few studies have analyzed the nature of work required from patients and how such work fits into the context of their daily life. Objective This study aimed to review the characteristics of patient work in adult patients. Patient work refers to tasks that health conditions impose on patients (eg, taking medications) within a system of contextual factors. Methods A systematic scoping review was conducted using narrative synthesis. Data were extracted from PubMed, Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO, including studies from August 2013 to August 2018. The included studies focused on adult patients and assessed one or more of the following: (1) physical health–related tasks, (2) cognitive health–related tasks, or (3) contextual factors affecting these tasks. Tasks were categorized according to the themes that emerged: (1) if the task is always visible to others or can be cognitive, (2) if the task must be conducted collaboratively or can be conducted alone, and (3) if the task was done with the purpose of creating resources. Contextual factors were grouped according to the level at which they exert influence (micro, meso, or macro) and where they fit in the patient work system (the macroergonomic layer of physical, social, and organizational factors; the mesoergonomic layer of household and community; and the microergonomic triad of person-task-tools). Results In total, 67 publications were included, with 58 original research articles and 9 review articles. A variety of patient work tasks were observed, ranging from physical and tangible tasks (such as taking medications and visiting health care professionals) to psychological and social tasks (such as creating coping strategies). Patient work was affected by a range of contextual factors on the micro, meso, or macro levels. Our results indicate that most patient work was done alone, in private, and often imposing cognitive burden with low amounts of support. Conclusions This review sought to provide insight into the work burden of health management from a patient perspective and how patient context influences such work. For many patients, health-related work is ever present, invisible, and overwhelming. When researchers and clinicians design and implement patient-facing interventions, it is important to understand how the extra work impacts one’s internal state and coping strategy, how such work fits into daily routines, and if these changes could be maintained in the long term.

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“…Many individuals treated for cancer lack long‐term plans for their life. Undergoing cancer treatment involves a long recovery process, and those who experience late effects after cancer treatment report needing a complex rehabilitation programme (11). Hvidt (3) claims that living postcancer involves a liminal experience of having to navigate in a borderless and unfamiliar territory between a homeworld and an alienworld.…”

Section: Introductionmentioning

confidence: 99%

Homeworld/Alienworld: a qualitative study about existential experiences after cancer treatment

Ueland

Dysvik

Rørtveit

et al. 2020

Scandinavian Caring Sciences

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Background As a group, cancer survivors experience significant vulnerability and existential challenges. The biomedical approach dominating health care is insufficient to meet such existential challenges in an individualistic, holistic way. Objective This study aimed to explore the existential experiences of those treated for different cancers. Methods An exploratory phenomenological–hermeneutical design was used to obtain an understanding of existential experiences after cancer treatment. Data were collected through in‐depth interviews with 21 individuals who represented a purposive sample and were recruited from a cancer organisation. Results Three overriding themes emerged from the phenomenological–hermeneutical analysis are as follows: Experiencing an unfamiliar tiredness; Experiencing not being fully oneself; and Experiencing a feeling of being alone. Conclusions Existential suffering after cancer treatment involves living on the edge of the old homeworld and the experience of a new alienworld. Individuals undergoing such suffering need a transformational process, from the alienworld to the homeworld, which must be supported by the healthcare system. Implications for practice To facilitate the transformational process, healthcare professionals should communicate with patients throughout their cancer journey about how their existential experiences have been integrated into their lifeworld, allowing them to tell their own story from the perspective of lifeworld brokenness.

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Patients’ experiences of their everyday life 14 months after cytoreductive surgery and hyperthermic intraperitoneal chemotherapy – a qualitative follow‐up study

Cited by 8 publications

References 36 publications

Stable, fragile and recreated – a qualitative study of agency in everyday life with breast and prostate cancer

Stable, fragile and recreated – a qualitative study of agency in everyday life with breast and prostate cancer

Patient Work and Their Contexts: Scoping Review

Homeworld/Alienworld: a qualitative study about existential experiences after cancer treatment

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