Expertise, advocacy and activism: A qualitative study on the activities of prostate cancer peer support workers

Abstract

Peer support workers are now working with patients in a variety of settings, coming into close contact and even work alongside health professionals. Despite the potentially influential position peer support workers hold in relation to those engaged in support activities, their role, duties and their relationship to peers and health professionals lack clarity and is often defined by other actors. This study explores how peer support workers interpret and define the activities, responsibilities and knowledge associated with their work. Using methods of membership categorisation analysis, we analysed interview materials generated by conducting individual semi-structured interviews during the autumn of 2016 with prostate cancer peer support workers ( n = 11) who currently volunteer as support workers in Finland. Although the peer support workers acknowledged the psychosocial aspects of the work, we argue that their interpretations extend far beyond this and encompass expertise, advocacy and activism as central features of their work. These can be used to strengthen their position as credible commentators and educators on issues relating to cancer and men's health; raise awareness and represent the 'patient's voice' and attempt to influence both policy and clinical practice. These findings suggest that by categorising their work activities in different ways, voluntary sector actors such as peer support workers can attempt to portray themselves as legitimate authorities on a range of issues and influence decision-making ranging from individual level treatment decisions all the way to health policy.

Development of cancer support services for patients and their close ones from the Cancer Society of Finland’s perspective

“…The CSF trains its peers, but this is not always sufficient to convince professionals in the public sector of their qualifications. According to Jones and Pietilä (2018), peer supporters know the requirements for their tasks. Cancer patient advocacy aims to strengthen the roles of cancer patients and caregivers together with third-sector organizations and to provide information about the gaps in the system of care (Schear et al, 2015).…”

Miesten terveyden edunvalvontaa terveyspolitiikan kentällä: potilaiden perusteluja eturauhassyövän seulonnan tarpeellisuudesta

“…Perustelut noudattavat suurelta osin tietynlaista edunvalvontapolitiikan logiikkaa, jossa seulontojen järjestäminen nähdään keinona lisätä tietoisuutta eturauhassyövästä ja puolustaa oman potilasryhmän asemaa terveyspolitiikan priorisoinneissa (30,31). Edunvalvontaa tehdään suhteessa muihin potilasryhmiin, erityisesti naisiin, mutta vastapuolena kuvattiin terveydenhuoltojärjestelmää ja tämän edustajina lääkäreitä, jotka useissa kohdin esitettiin välinpitämättöminä ja potilaan etua ymmärtämättöminä.…”

Syöpäpotilaiden psykososiaalinen tuki ja terveydenhuollon yhteistyö järjestöjen kanssa - erikoissairaanhoidon henkilöstön näkökulma

“…(26.) Aiem mista tutkimuksista (27,28) käy ilmi, että myös järjestöissä toimivat vertaistukihenkilöt ovat tietoisia erikoistumisen vaateesta ja tuovat esiin osaamistaan erikoistumisen näkökulmasta.…”