Information seeking and avoidance throughout the cancer patient journey: two sides of the same coin? A synthesis of qualitative studies

Germeni, Evi; Schulz, Peter

doi:10.1002/pon.3575

Cited by 37 publications

(33 citation statements)

References 52 publications

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“…Research into coping and/or living with cancer which has taken a qualitative approach supports many of the main findings of this study: that positive experiences are important and strategies for living can be developed[52]; that whilst living with cancer is disruptive it is possible to make sense of the experience and ‘find a path’ which enables coping[53]; that a focus on life priorities and everyday tasks such as work or hobbies can be helpful[13]; the importance of ‘holding on to life’ by enjoying life in the present[14] that people use emotional and problem focused coping strategies, often focused on maintaining normality[19]; and that supportive relationships with and trust in clinicians are important[19, 54, 55]. The narratives commonly included expressions of ‘hope’ which is a factor considered by other work on coping with cancer [56].…”

Section: Discussionmentioning

confidence: 99%

Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

et al. 2017

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ObjectivesTo understand successful strategies used by people to cope well when living with advanced cancer; to explore how professionals can support effective coping strategies; to understand how to support development of effective coping strategies for patients and family carers.DesignQualitative serial (4–12 week intervals) interview study with people with advanced cancer and their informal carers followed by focus groups. The iterative design had a novel focus on positive coping strategies. Interview analysis focused on patients and carers as individuals and pairs, exploring multiple dimensions of their coping experiences. Focus group analysis explored strategies for intervention development.Participants26 people with advanced (stage 3–4) breast, prostate, lung or colorectal cancer, or in receipt of palliative care, and 24 paired nominated informal/family carers.SettingParticipants recruited through outpatient clinics at two tertiary cancer centres in Merseyside and Manchester, UK, between June 2012 and July 2013.Results45 patient and 41 carer interviews were conducted plus 4 focus groups (16 participants). People with advanced cancer and their informal/family carers develop coping strategies which enable effective management of psychological wellbeing. People draw from pre-diagnosis coping strategies, but these develop through responding to the experience of living with advanced cancer. Strategies include being realistic, indulgence, support, and learning from others, which enabled participants to regain a sense of wellbeing after emotional challenge. Learning from peers emerged as particularly important in promoting psychological wellbeing through the development of effective ‘everyday’, non-clinical coping strategies.ConclusionsOur findings challenge current models of providing psychological support for those with advanced cancer which focus on professional intervention. It is important to recognise, enable and support peoples’ own resources and coping strategies. Peer support may have potential, and could be a patient-centred, cost effective way of managing the needs of a growing population of those living with advanced cancer.

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Section: Discussionmentioning

confidence: 99%

Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

et al. 2017

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“…First, inductive studies of what patients and families seek from consultations where stakes are high do not support the overwhelming emphasis on patients as consumers of information or as decision makers. Patients and families have diverse needs that change over time, [55][56][57][58] but findings consistently emphasise their need to feel cared for, to hope for the future and to trust their clinicians' decisions and recommendations. Information is valued where it enables hope and sustains trust, 55,57,[59][60][61][62] so patients need doctors to manage information carefully and often to constrain and pace it.…”

Section: Patients: Vulnerable and Dependentmentioning

confidence: 99%

A new paradigm for clinical communication: critical review of literature in cancer care

Salmon

Young

2016

Med Educ

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ObjectivesTo: (i) identify key assumptions of the scientific ‘paradigm’ that shapes clinical communication research and education in cancer care; (ii) show that, as general rules, these do not match patients’ own priorities for communication; and (iii) suggest how the paradigm might change to reflect evidence better and thereby serve patients better.MethodsA critical review, focusing on cancer care. We identified assumptions about patients’ and clinicians’ roles in recent position and policy statements. We examined these in light of research evidence, focusing on inductive research that has not itself been constrained by those assumptions, and considering the institutionalised interests that the assumptions might serve.ResultsThe current paradigm constructs patients simultaneously as needy (requiring clinicians’ explicit emotional support) and robust (seeking information and autonomy in decision making). Evidence indicates, however, that patients generally value clinicians who emphasise expert clinical care rather than counselling, and who lead decision making. In denoting communication as a technical skill, the paradigm constructs clinicians as technicians; however, communication cannot be reduced to technical skills, and teaching clinicians ‘communication skills’ has not clearly benefited patients. The current paradigm is therefore defined by assumptions that that have not arisen from evidence. A paradigm for clinical communication that makes its starting point the roles that mortal illness gives patients and clinicians would emphasise patients’ vulnerability and clinicians’ goal‐directed expertise. Attachment theory provides a knowledge base to inform both research and education.ConclusionsResearchers will need to be alert to political interests that seek to mould patients into ‘consumers’, and to professional interests that seek to add explicit psychological dimensions to clinicians’ roles. New approaches to education will be needed to support clinicians’ curiosity and goal‐directed judgement in applying this knowledge. The test for the new paradigm will be whether the research and education it promotes benefit patients.

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“…Information given should be comprehensible as it is associated with reduced fear of cancer progression [ 26 ]. In addition, in the study by Germeni and Shulz [ 27 ], cancer patients showed both information seeking and avoidance patterns and the motivating themes behind these two patterns varied from the initial diagnosis to the treatment phase, suggesting a need for phase-specific information provision.…”

Section: Discussionmentioning

confidence: 99%

Tailoring communications to the evolving needs of patients throughout the cancer care trajectory: a qualitative exploration with breast cancer patients

Shim

Park

et al. 2016

BMC Women's Health

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BackgroundDoctor-patient communication is a crucial aspect of patient care. This study explored the communication experience of patients in a cancer consultation over the course of the cancer continuum.MethodsIn-depth interviews with seven breast cancer patients were carried out.ResultsThemes related to communication experiences across the five phases of cancer consultation, from diagnosis to recurrence, were identified. The most salient issue is that patients also perceived cancer as ‘a disease of the mind’, which is not adequately cared for in consultation. This highlights the notion that cancer care providers should provide appropriate care for the psychological dimensions of the cancer experience with an empathic and sincere attitude during consultations. To this end, non-verbal aspects of communication that convey caring, support, and respect seem important. Furthermore, patients perceived that the consultation time was far shorter then they needed and reported that they felt pressured for time. Moreover, the stance taken by patients and the needs and preferences of patients varied across the phases of the cancer trajectory. As patients progressed through the phases of their treatment, they assumed more active roles in the course of their care and the need for more detailed information and questioning increased. Thus, ensuring that patients have opportunities to ask questions in the consultation is important.ConclusionCurrent findings suggest that the efficacy of communication varies depending on which phase patients are in and that effective communication should be tailored to these evolving needs and preferences of breast cancer patients. Also, patients perceived that the consultation did not adequately address their need for information related to their care or their emotional issues associated with the cancer experience. It is therefore important to address their needs by paying particular attention to non-verbal aspects of communication that convey empathy and respect toward patients, as well as allowing patients to ask questions.Electronic supplementary materialThe online version of this article (doi:10.1186/s12905-016-0347-x) contains supplementary material, which is available to authorized users.

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Information seeking and avoidance throughout the cancer patient journey: two sides of the same coin? A synthesis of qualitative studies

Cited by 37 publications

References 52 publications

Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

A new paradigm for clinical communication: critical review of literature in cancer care

Tailoring communications to the evolving needs of patients throughout the cancer care trajectory: a qualitative exploration with breast cancer patients

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