Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews

Murray, Scott A; Kendall, Marilyn; Boyd, Kirsty; Grant, Liz; Highet, Gill; Sheikh, Aziz

doi:10.1136/bmj.c2581

Cited by 126 publications

(136 citation statements)

References 31 publications

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“…9 As with other chronic advancing illnesses (e.g., heart failure), 13 patients in our study described a gradual withdrawal from their social lives. Caregivers be came increasingly busy and isolated, unable to continue with their daily lives.…”

Section: Comparison With Other Studiesmentioning

confidence: 94%

“…9 We defined adjustment as the dynamic process of a person's gradual assimilation to his or her changing circumstances, drawing on a range of cognitive, emotional and social resources to manage this, incorporating psychological distress as a normal part of this process. 5 We defined existential issues as relating to the meaning and purpose of life, recognizing that people may or may not use religious vocabulary to express these ideas.…”

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confidence: 99%

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Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study

Cavers

Hacking

Erridge

et al. 2012

CMAJ

105

106

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Section: Comparison With Other Studiesmentioning

confidence: 94%

mentioning

confidence: 99%

Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study

Cavers

Hacking

Erridge

et al. 2012

CMAJ

105

106

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“…Impact on significant others (family members) has been related to caregiver burden, [57][58][59] depression, 58,60 physical health, 60 stress, 61 distress, 62,63 social functioning, 64 and QoL. 65 A secondary analysis 66 found that carers followed clear patterns of social, psychological, and spiritual well-being and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced.…”

Section: The Impact On Carersmentioning

confidence: 99%

The impact of lung cancer on patients and carers

Ellis¹

2012

Chron Respir Dis

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This article aims to provide a brief review of the literature with regard to the impact of lung cancer on patients and their informal carers. Compared to other types of cancer, the distress associated with lung cancer has been found to be the most intense. Rather than focusing on symptoms in isolation recent emphasis regarding the symptom experience has been on symptoms clusters, as understanding these clusters may improve the management of ongoing and unrelieved symptoms. However, the disparities in methodology are significant barriers to producing comparable results, although recent efforts have been made to address these. Whilst research into symptoms has enormous potential for the management of symptom clusters, it needs to move away from the essentially reductionist stance which currently dominates and broaden its scope to one that acknowledges the complexity of the experience of symptom clusters from the perspective of the patient and their informal carer. Poor management of symptoms complicates patient care and potentially contributes to the heavy burden which often falls on family caregivers, especially as the disease progresses. The majority of studies focus on the experiences of primary care providers, most often the partner/spouse. Such studies have shown that spouses of patients with lung cancer exhibit significant distress and lower levels of quality of life than the general population. Research also indicates that significant others go through a transition process due to changes brought about by the diagnosis of lung cancer and struggle to endure and overcome difficulties and distress. Significant others were seen to suffer during this process of transition and experienced altered relationships. Clinicians working with patients suffering from lung cancer and their carers should intervene to enhance their quality of life from diagnosis, during the disease trajectory and during bereavement. Interventions need to be developed to support both patients and carers.

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“…Other studies have considered transitions from life prolonging to palliative care. 102,103 Our use of qualitative and quantitative methods and inclusion of different constituencies involved in care transitions have provided both a broad overview and rich insights into the influences on patients' experiences. Participants were drawn from three NHS regions of England, and should be representative of a range of health economies and social contexts.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Transitions at the end of life for older adults – patient, carer and professional perspectives: a mixed-methods study

Hanratty

Lowson

Grande

et al. 2014

Health Services and Delivery Research

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BackgroundThe end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.ObjectiveThe aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.SettingEngland.ParticipantsThirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.Design and methodsThis was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.ResultsTransitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.ConclusionsDevelopment of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews

Cited by 126 publications

References 31 publications

Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study

Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study

The impact of lung cancer on patients and carers

Transitions at the end of life for older adults – patient, carer and professional perspectives: a mixed-methods study

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