Background
Prostate cancer is the second most diagnosed cancer in men worldwide, and is associated with significant burden on the individual patient and healthcare resources.
The National Institute for Health and Care Excellence (NICE) recommends ‘supportive care’ for men as one way of addressing this burden but there is little available guidance specific to prostate cancer on how to provide such care.
Aim
This study aimed to review and synthesise the available literature using qualitative research methods to examine men’s experiences of support for prostate cancer.
Methods
Seven databases (Embase, PsychInfo, CINAHL, British Nursing Index, IBSS and Sociological Abstracts) were searched for studies using qualitative methods to examine men’s experiences of supportive care for prostate cancer.
Men with a diagnosis of prostate cancer were included; those in end of life care were excluded. Thematic synthesis of the evidence from each paper was conducted.
Results
Twenty studies were included in the synthesis, all published in Anglo-Saxon countries from 2004 to 2013. Twelve themes emerged across the papers, arranged into three groups:
Prostate Cancer Patients’ Experience of Supportive Care:
Some men were proactive in accessing support groups (led by peers or health professionals) while a few described being referred to them by health professionals.
Church communities were noted as introducing men to others with prostate cancer experience. One-to-one peer support (e.g. family, friends) was also commonly cited and highly valued by men.
Some men chose to talk about their experience with only their spouse or a few select individuals as a way of preserving ‘normality’.
Peer support reduced men’s sense of isolation and enabled sharing and exchange of experience, information, and tips. The value of peer support was evident at all stages of disease progression but slightly less so for advanced disease; one study highlighted these men were looking for information rather than emotional support (within a group setting).
Online support was useful to some men, particularly due to the anonymity and the ability to take a passive role and observe others’ discussion without sharing their own experience.
Men had a difficult time talking to health care providers about intimate issues such as sexual function and many reported not being asked by their GP about it at an appropriate time or context.
A lack of continuity of care and perceived lack of empathy among health professionals also prevented men from discussing sensitive issues.
Patients’ Accounts of Unmet Needs:
Men indicated a need for emotional or psychological support from diagnosis through to survivorship, but a perceived lack of understanding of support needs among health professionals Needs included support to deal with treatment side effects, particularly erectile dysfunction and urinary incontinence.
Men reported receiving information about prostate cancer and its treatment from various sources including health professionals and peer networks.
However, content and timing of information delivery from health professionals did not always meet their needs. Information was often perceived to be inadequate and difficult to understand while the timing of information ‘too little too late’ (e.g. information on treatment side effects presented after treatment had begun).
Information on treatment and side effects for men and their partners was also highlighted.
Patients’ Suggestions About How to Improve Supportive Care:
Men indicated a need for information and more time with a specialist cancer nurse (to provide practical, emotional, and psychological support).
Specifically, more relevant information available at or shortly after diagnosis and assistance to interpret the information was suggested.
Increased emotional support was identified as an important area of improvement by many men; in one study, half the men would consider organised counselling if it were an option.
Conclusion
The authors concluded that men most value one-to-one peer support (e.g. a friend or colleague) and partner support. The need for improved access to prostate cancer specialist nurses through the entire care pathway, individually tailored care, and psychosexual support for treatment side effects were highlighted.
