Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews With Patients With Cancer, Organ Failure, or Frailty and Their Family and Professional Carers

Kendall, Marilyn; Carduff, Emma; Lloyd, Anna; Kimbell, Barbara; Cavers, Debbie; Buckingham, Susan; Boyd, Kirsty; Grant, Liz; Worth, Allison; Pinnock, Hilary; Sheikh, Aziz; Murray, Scott A

doi:10.1016/j.jpainsymman.2015.02.017

Cited by 82 publications

(90 citation statements)

References 26 publications

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“…They also experience progressive psychological, social and existential challenges. Their experience was similar to that previously described in patients with advanced lung and brain cancer (Cavers et al., 2012; Kendall & Murray, 2005) in that there was a clear beginning to the story, and contrasted to narratives of patients with chronic obstructive pulmonary disease and heart failure (Kendall et al., 2015; Murray et al., 2007; Pinnock et al., 2011). An understanding of the difference between public and private accounts which patients tell clinicians, and the importance of current social narratives of cancer, was vital for understanding the results of this study.…”

Section: Discussionmentioning

confidence: 99%

“…It is for this reason that there is a drive to promote secondary analysis of the rich, qualitative data which arise from longitudinal work. The data generated from this study continues to be used in this way (Kendall et al., 2015). …”

Section: Discussionmentioning

confidence: 99%

“…We used serial in‐depth interviews to understand how patient experiences and needs changed as illness progressed (Kendall et al., 2015; Murray et al., 2009). Participants were interviewed over a year; each participating in up to three interviews.…”

Section: Methodsmentioning

confidence: 99%

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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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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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

2017

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“…1,2 In the UK, more people are living longer with multiple long-term conditions and cancer such that illness trajectories are changing. [3][4][5] A proactive approach to care, with early identification of palliative care needs and care planning, has long been advocated, 4,5 and remains at the centre of national strategies in the UK. [6][7][8][9] GPs, along with the wider palliative care and community nursing teams, provide most of the medical care for patients who die in the community at end of life.…”

Section: Introductionmentioning

confidence: 99%

Providing end-of-life care in general practice: findings of a national GP questionnaire survey

et al. 2016

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BackgroundWith increasing numbers of people living with complex life-limiting multimorbidity in the community, consideration must be given to improving the organisation and delivery of highquality palliative and end-of-life care (EOLC). AimTo provide insight into the experience of GPs providing EOLC in the community, particularly the facilitators and barriers to good-quality care. Design and settingA web-based national UK questionnaire survey circulated via the Royal College of General Practitioners, NHS, Marie Curie, and Macmillan networks to GPs. MethodResponses were analysed using descriptive statistics and an inductive thematic analysis. ResultsResponses were received from 516 GPs, who were widely distributed in terms of practice location. Of these, 97% felt that general practice plays a key role in the delivery of care to people approaching the end of life and their families. Four interdependent themes emerged from the data: continuity of care -which can be difficult to achieve because of resource concerns including time, staff numbers, increasing primary care workload, and lack of funding; patient and family factors -with challenges including early identification of palliative care needs and recognition of the end of life, opportunity for care planning discussions, and provision of support for families; medical management -including effective symptomcontrol and access to specialist palliative care services; and expertise and training -the need for training and professional development was recognised to enhance knowledge, skills, and attitudes towards EOLC. ConclusionThe findings reveal enduring priorities for policy, commissioning, practice development, and research in future primary palliative care.

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“…Suffering due to the great discomfort caused by many symptoms can be multiplied by the prospect of the inevitability of death and ideas of what it will be like [4,5]. It is no wonder that studies to evaluate the effects of early implementation of palliative care in the full model of integrating the activities in the field of palliative medicine and oncology have been started [6].…”

Section: Introductionmentioning

confidence: 99%

Late palliative care of patients with lung cancer may have a limited effect on quality of life – a pilot observational study

Nowicki¹,

Farbicka²,

Krajnik³

2016

Arch Med Sci Civil Dis

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A b s t r a c tIntroduction: The aim of the study was to assess the point of life and illness at which patients began to receive palliative care and in what areas of their quality of life effective alleviation of their suffering is possible. Material and methods: The study included 63 patients aged 33-91 years with lung cancer treated in palliative medicine centers in Bydgoszcz in 2012-2013. The assessment of quality of life was performed every three weeks, using the QLQ-C30 and QLQ-LC13 questionnaires. Results: The median time from diagnosis to the start of palliative care was 10 months, and the median palliative care duration for the whole group was 4 weeks. Patients with a survival time less than 6 weeks (n = 42) experienced worse symptoms and limitations in their functioning during the whole period of care until their death compared with those who survived a little longer (6-8 weeks; n = 21). Fatigue, constipation and dyspnea were among the worst symptoms; the latter intensified in the last period before death. The quality of life assessed by patients continuously deteriorated, and in the last days/ weeks before death it was defined as "very bad" by more than 2/3 of patients. Conclusions: Late provision of patients with palliative care can lead to its limited effectiveness in improving the quality of life, which is dependent on symptoms that are experienced by patients and ability to function in the physical, emotional, cognitive, social and societal spheres.

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Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews With Patients With Cancer, Organ Failure, or Frailty and Their Family and Professional Carers

Cited by 82 publications

References 26 publications

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

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

Providing end-of-life care in general practice: findings of a national GP questionnaire survey

Late palliative care of patients with lung cancer may have a limited effect on quality of life – a pilot observational study

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