Patients’ experiences of ongoing palliative chemotherapy for metastatic colorectal cancer: a qualitative study

Cameron, Jenny; Waterworth, Susan

doi:10.12968/ijpn.2014.20.5.218

Cited by 18 publications

(27 citation statements)

References 28 publications

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“…Moreover, patients might have given socially desirable answers. A previous study, for instance, showed that cancer patients receiving palliative care can be remarkably optimistic in the hospital or in their satisfactory relationship with the nursing staff 29 30. These findings are also in line with our data that show that nearly all patients wanted to be optimistic, although fear [fear of cancer recurrence (FCR)] was sometimes overriding and/or close relatives said something different.…”

Section: Discussionsupporting

confidence: 91%

Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands

et al. 2019

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ObjectiveAdvances in oncology increasingly result in protracted disease trajectories for patients with incurable cancer. In this disease phase, patients are aware of the incurable nature of cancer although they are not yet approaching the last phase of life. We explored the challenges for patients confronted with protracted incurable cancer.DesignEthnographic study (2015–2017) based on conversations with patients, observations at a day-care unit and a selection of information from the medical records of patients who died during the study period.SettingThe day-care unit of a comprehensive cancer centre in the Netherlands.ParticipantsNineteen patients with stage IV breast cancer (in remission, >1 year after diagnosis) and 11 patients with stage IV lung-cancer (in remission, >6 months after diagnosis).ResultsIn patients who had died during the study period, the treatment response often fluctuated between stable, remission and progression throughout the course of the disease. Patients reported that this fluctuation could be overwhelming. However, as patients grew accustomed to having protracted incurable cancer, the distress associated with fluctuations (perceived in scan results) slowly faded. Patients reported that cancer became part of who they were. At the day-care unit, most patients talked about their disease in an optimistic or neutral way and expressed delight in life. They often expressed gratefulness for the possible prolongation of life, expressed hope and tried to stay optimistic. This was frequently reinforced by optimistic doctors and nurses. Relatives, however, could downplay such optimism. Moreover, some patients acknowledged that hope was qualified by their personal challenges regarding their disease.ConclusionsIn situations where tumours remained in remission or were stable for extended periods, patients grew accustomed to having cancer. At the day-care unit, medical professionals typically encouraged an attitude of being hopeful and optimistic, which could be downplayed by relatives. More research is warranted to explore this protracted disease phase and this optimistic view among healthcare professionals.

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Section: Discussionsupporting

confidence: 91%

Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands

et al. 2019

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“…The participants had mixed cancer diagnosis predominantly treated with chemotherapy. Eight of the studies were conducted in Europe—Belgium (n = 1),39 Germany (n = 1),38 Iceland (n = 1),35 Ireland (n = 2),34,36 Spain (n = 1),37 Sweden (n = 1),33 and United Kingdom (n = 1)40—and 1 study was conducted in New Zealand (n = 1) 4…”

Section: Resultsmentioning

confidence: 99%

“…Data from the qualitative studies were collected by semistructured in-depth individual interviews4,33–36 (Table 3). Three quantitative studies37,39,40 used a cross-sectional observational study design with different measurement tools, and 1 study38 used a prospective survey (Table 4).…”

Section: Resultsmentioning

confidence: 99%

The Patient–Healthcare Professional Relationship and Communication in the Oncology Outpatient Setting

et al. 2018

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“…Few of these studies follow participants to death to capture their longitudinal experiences before dying (Browne et al, 2011;Little et al, 1998;Ramfelt, Severinsson, & Lutzen, 2002;Sahay, Gray, & Fitch, 2000;Shaha & Cox, 2003;Sjovall et al, 2011). This has potential implications for the development of interventions to support this group of patients (Cameron & Waterworth, 2014) and is inequitable, as those with advanced disease have the greatest needs and poorer psycho-social outcomes in terms of quality of life, anxiety, depression, social support, physical, functional and emotional wellbeing and satisfaction with medical interventions (Simon, Thompson, Flashman, & Wardle, 2008). This paper reports the longitudinal experiences, perceptions and service use of patients with metastatic colorectal cancer.…”

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confidence: 99%

Living and dying with metastatic bowel cancer: Serial in-depth interviews with patients

2017

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Colorectal cancer is the second highest cause of cancer deaths. There are significant physical and psycho‐social effects on quality of life with advanced disease. Despite this, there are few accounts of the patient experience from advanced illness through to dying. We elicited the longitudinal experiences of living and dying with incurable metastatic colorectal cancer by conducting serial interviews with patients for 12 months or until they died. The interviews were analysed, using a narrative approach, longitudinally as case studies and then together. Thirty‐six interviews with 16 patients were conducted. Patients experience metastatic colorectal cancer in three phases; (1) Diagnosis and initial treatment; (2) Deterioration and social isolation and (3) Death and dying. Many patients initially said they hoped to survive, but, as “private” and in‐depth accounts of the experience emerged in further interviews, so did the understanding that this hope co‐existed with the knowledge that death was near. Palliative chemotherapy and the challenge of accessing private accounts of patient experience can inhibit care planning and prevent patients benefitting from an active holistic palliative care approach earlier in the disease trajectory. This study has immediate clinical relevance for health care professionals in oncology, palliative care and primary care.

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Patients’ experiences of ongoing palliative chemotherapy for metastatic colorectal cancer: a qualitative study

Abstract: The key to improving the care of people with advanced cancer is understanding their experiences of care. Communication between the patient, family, and health-care team ensures assumptions that misinterpret attributes of positivity are not made.

Cited by 18 publications

References 28 publications

Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands

Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands

The Patient–Healthcare Professional Relationship and Communication in the Oncology Outpatient Setting

Living and dying with metastatic bowel cancer: Serial in-depth interviews with patients

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