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Experiences of Australian men diagnosed with advanced prostate cancer: a qualitative study.

ABSTRACT: OBJECTIVE:To explore men's lived experience of advanced prostate cancer (PCa) and preferences for support. DESIGN:Cross-sectional qualitative study applying open-ended surveys and interviews conducted between June and November 2016. Interviews audio-recorded and transcribed verbatim and analysed from an interpretive phenomenological perspective. SETTING:Australia, nation-wide. PARTICIPANTS:39 men diagnosed with advanced PCa (metastatic or castration-resistant biochemical regression) were surveyed with 28 men subsequently completing a semistructured in depth telephone interview. RESULTS:Thematic analysis of interviews identified two organising themes: lived experience and supportive care. Lived experience included six superordinate themes: regret about late diagnosis and treatment decisions, being discounted in the health system, fear/uncertainty about the future, acceptance of their situation, masculinity and treatment effects. Supportive care included five superordinate themes: communication, care coordination, accessible care, shared experience/peer support and involvement of their partner/family. CONCLUSIONS:Life course and the health and social context of PCa influence men's experiences of advanced disease. Multimodal interventions integrating peer support and specialist nurses are needed that more closely articulate with men's expressed needs.

SUBMITTER: Chambers SK

PROVIDER: S-EPMC5855292 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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Experiences of Australian men diagnosed with advanced prostate cancer: a qualitative study.

Chambers Suzanne K SK Hyde Melissa K MK Laurie Kirstyn K Legg Melissa M Frydenberg Mark M Davis Ian D ID Lowe Anthony A Dunn Jeff J

BMJ open 20180217 2

<h4>Objective</h4>To explore men's lived experience of advanced prostate cancer (PCa) and preferences for support.<h4>Design</h4>Cross-sectional qualitative study applying open-ended surveys and interviews conducted between June and November 2016. Interviews audio-recorded and transcribed verbatim and analysed from an interpretive phenomenological perspective.<h4>Setting</h4>Australia, nation-wide.<h4>Participants</h4>39 men diagnosed with advanced PCa (metastatic or castration-resistant biochem ...[more]

PMID: 29455168

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Project description:ObjectivesTo explore the negative recollections of prostate cancer patients regarding the attitudes and language used by the doctors in delivering their diagnoses in Japan, in order to improve patient-centred communication.Design and settingThis is a qualitative secondary analysis of the prostate cancer narrative data from the Database of Individual Patients' Experiences-Japan archives. A thematic analysis was conducted regarding negative recollections of doctors' words/attitudes when delivering a cancer diagnosis. Recruitment was based on maximum variation sampling. Participants were recruited from medical institutions, patient associations and through media advertisements.ParticipantsMen with a diagnosis of prostate cancer (n=51).FindingsOf the 51 participants, 17 had negative recollections of the doctors' words/attitudes during the delivery of the cancer diagnosis. After thematic analysis, 11 categories emerged: 'Surprised by the abrupt disclosure of the diagnosis', 'Displeased by the direct disclosure of the diagnosis to the patient in the absence of family members', 'Unable to accept the doctor's negative words in the explanations', 'Unable to understand the doctor's technical jargon', 'Distrust due to failure in diagnosis based on previous examinations', 'Aggrieved at the doctor's unwillingness to allow questions', 'Dissatisfied with explanations involving facts only', 'Indignant over the unexpected disclosure of life expectancy', 'Unable to accept the doctor's blame for the delay in the initial hospital visit', 'Uncomfortable with the usage of inappropriate metaphors' and 'Pessimistic thoughts despite optimistic explanations'.ConclusionsIt is clear that patients have recollections of a variety of negative experiences regarding the words/attitudes of their doctors at the time they received their prostate cancer diagnosis. Thus, the use of narrative data would facilitate the appropriate application of commonly used guidelines for the delivery of cancer diagnoses tailored to individual patients in clinical practice.

Project description:OBJECTIVE:The aim of this study is to explore the experiences of patients with primary bone cancer. DESIGN:Qualitative study design using semistructured interviews and focus groups. SETTING:Hospitals across the UK and recruitment through UK sarcoma charities and support groups. METHODS:Semistructured telephone/face-to-face interviews and focus groups with a purposive sample of 26 participants. Data were analysed using Framework Analysis. PARTICIPANTS:Patients (n=26) with primary bone cancer aged 13-77 years. The majority were male (69%), white (85%); diagnosed within 4 years (54%); and had lower limb sarcoma (65%). Ten participants had undergone an upper/lower limb amputation (39%). RESULTS:The health-related quality-of-life domains of physical, emotional and social well-being and healthcare professionals' role were the overarching themes of analysis. The physical domain anchored patient experiences. The intensity and length of treatment, the severity of side-effects, the level of disability after surgery and the uncertainty of their prognosis had an impact on patient's self-image, confidence, mood and identity, and caused disruption to various aspects of the patients' social life, including their relationships (emotional and sexual) and participation in work/school and leisure activities. Adaptation was influenced by the way patients dealt with stress and adversity, with some finding a new outlook in life, and others struggling with finding their 'new normal'. Family and friends were the main source of support. Healthcare professional's expertise and support was critical. Rehabilitation services had a considerable role in patient's physical and emotional well-being, but inequitable access to these services was apparent. CONCLUSIONS:This study described the impact of primary bone cancer on patients' well-being and adjustment over time with the identification of influencing factors of better/worse experiences. It showed that impact was felt after end of treatment and affected patients at different life stages. Holistic models of survivorship care are needed.

Dataset Information

Experiences of Australian men diagnosed with advanced prostate cancer: a qualitative study.

Publications

Experiences of Australian men diagnosed with advanced prostate cancer: a qualitative study.

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