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

Abstract

ObjectiveTo explore men’s lived experience of advanced prostate cancer (PCa) and preferences for support.DesignCross-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.SettingAustralia, nation-wide.Participants39 men diagnosed with advanced PCa (metastatic or castration-resistant biochemical progression) were surveyed with 28 men subsequently completing a semistructured in depth telephone interview.ResultsThematic 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.ConclusionsLife 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.

Patients’ and partners’ views of care and treatment provided for metastatic castrate‐resistant prostate cancer in the UK

“…Three quarters of the patients in EXTREQOL had metastatic bone disease, and pain was a commonly reported presenting symptom recognised by 43% of clinicians (Jenkins et al, ). This is important though not surprising, and it fits with previous evidence showing that men with mCRPC experience poorer QoL and more pain than men at other stages of disease (Chambers et al, ). Patients who managed to have a pain management discussion were in the main satisfied; however, some attributed their pain to their older age, or to conditions other than cancer, for example arthritis, or an activity like gardening.…”

“…A recent qualitative study of Australian men's experiences of advanced prostate cancer documented similar findings of the influence men's age and the expression of masculinities have on responses to and coping with illness. They found a reluctance to seek help which the men ascribed to male values (being strong, capable, independent or stoic) and used avoidant coping, covering up or ignoring side effects or a need for support (Chambers et al, ).…”

“…Many patients did not understand the treatment information, especially how treatments worked, and had difficulty getting answers to questions; equally worrying oncologists and specialist nurses acknowledged an awareness of these shortcomings. A qualitative study of Australian men diagnosed with advanced prostate cancer (Chambers et al, ) also identified difficulties with accessible informational support about the disease and treatment. The study revealed that the partner was the catalyst for seeking information and getting help from the supportive services and that they needed to be involved and supported too.…”

A pilot randomised controlled trial of a multimodal supportive care (ThriverCare) intervention for managing unmet supportive care needs in men with metastatic prostate cancer on hormonal treatment and their partner/caregivers

“…Men affected by metastatic prostate cancer are likely to have a long illness pathway, as well as the individual burden to patients and their partner/caregivers with the associated side-effects, and this represents a burden on healthcare resources internationally (Carter et al, 2011;Chambers et al, 2018;Paterson et al, 2015a;Paterson et al, 2017).…”

Prostate cancer survivorship priorities for men and their partners: Delphi consensus from a nurse specialist cohort

“…The issue of community awareness of prostate cancer and early detection was also nominated and this may reflect the concerns often expressed by community‐based prostate cancer groups about late diagnosis (Dunn et al, ). The involvement of partners in palliative care planning was nominated and likely driven by the high needs of men and their partners in this illness stage (Chambers et al, ; Zajdlewicz, Hyde, Lepore, Gardiner, & Chambers, ). Care coordination as a priority corresponds to the descriptions of a disjointed survivorship experience that was provided by the PCSNs and is an area where there is little research guidance about effective approaches (Crawford‐Williams et al, ).…”