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Patient and public involvement activities bring 'lay participants' and their accounts of lived experiences to the centre of health service development and delivery. For individuals, these accounts can provide an important resource, offering a sense of control and an opportunity to re-frame past events. Furthermore, as involvement activities and the use of personal accounts have become more prominent, it is timely to examine the involvement process from the perspective of the 'lay participants'. Hence, the aim of this study is to explore how people become involved and how they construct the accounts of their lived experience. We analyse the stories of people with lived mental illness or caring experiences, who have become experts by experience (n = 13). We argue that becoming an expert by experience can help to re-contextualise past experiences and support the re-discovery of skills and expertise, leading experts by experience to construct both professionalised and politicised identities. The process has the potential to enforce narratives that portray illness experiences as motivators for social action and change. Additionally, we claim that the stories experts by experience share with health services and the public are not 'lay accounts' or ad hoc tales, but accounts constructed to serve specific purposes.

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.

Vertaisarvioitu. English summary Psykososiaalinen tuki ei ole vakiintunut osaksi syöpäpotilaan hoitoa useista terveyspoliittisista linjauksista huolimatta. Tutkimuksessa analysoidaan, kenen tehtäväksi erikoissairaanhoidon syövänhoidossa toimivat terveydenhuollon ammattilaiset hahmottavat psykososiaalisen tuen antamisen, kuinka potilaiden tukemista tulisi heidän mukaansa kehittää sekä millaiseksi he ymmärtävät järjestöjen roolin tuen antajina. Aineisto kerättiin asiantuntijahaastatteluin syövänhoidossa työskenteleviltä terveydenhuollon ammattilaisilta (n=20). Aineiston analyysi toteutettiin aineistolähtöisellä sisällönanalyysillä. Syövänhoidossa työskentelevät terveydenhuollon ammattilaiset pitivät psykososiaalisen tuen antamista tärkeänä, mutta tuen antamisen katsottiin vaativan erityistä ammattitaitoa ja nykyistä enemmän resursseja. Haastateltavien mielestä yliopistosairaalassa on vaadittavat tukipalvelut, mutta sairaalan sisällä työnjakoa ja tuen systemaattista tarjoamista tulisi kehittää. He toivoivat sairaalaan lisää henkilökuntaa, jonka työhön tuen tarjoaminen kuuluisi. Tällöin potilaiden tuen tarpeen kartoittaminen olisi automaattisesti osa diagnoosivaiheen hoitoa. Haastateltavat kuvasivat järjestöjen tarjoamaa tukea lisänä yliopistosairaalan tukipalveluihin. He korostivat, että järjestöjen tarjoaman tuen piiriin hakeutumisen tulisi perustua potilaan vapaaehtoisuuteen ja aktiivisuuteen. Haastatteluissa tuli esiin epäilyksiä järjestöyhteistyön tiivistämistä kohtaan. Tutkimuksen tuottamaa tietoa voidaan hyödyntää kehitettäessä syöpäpotilaan kokonaisvaltaista hoitoa. Terveydenhuollon ja järjestöjen välisten raja-aitojen madaltamiseksi tarvitaan lisää tietoa järjestöjen tarjoamista tukipalveluista. Erikoissairaanhoidon henkilöstölle tarvitaan selkeämpiä ohjeita potilaiden ohjaamisesta järjestöiden palveluiden piiriin. Näiden kahden tahon välistä koulutusta syöpäpotilaan psykososiaaliseen tukemiseen liittyen tulisi lisätä. Jatkossa järjestöissä työskentelevän henkilöstön näkemyksiä erikoissairaanhoidon ja järjestöjen välisestä yhteistyöstä sekä syöpäpotilaiden psykososiaalisesta tuesta tulisi kartoittaa.

Health policies and strategies promote the involvement of people with illness experiences in service development and production, integrating them into settings that have traditionally been domains of health professionals. In this study, we focus on the perspectives of people with personal illness experiences and explore how they justify involvement, position themselves as legitimate actors and forge collaborative relationships with health professionals. We have used discourse analysis in analysing individual interviews conducted with peer support workers and experts by experience (n = 17) who currently work in Finnish health services. The interviewees utilised discourses of empowerment, efficiency and patient-centeredness, aligning themselves with the justifications constructed by patient movements additionally to those found in current health policies. Both groups wanted to retain critical distance from professionals in order to voice criticisms of current care practices, yet they also frequently aligned themselves with professionals in order to gain legitimacy for their involvement. They adopted professional traits that moved them further from being lay participants sharing personal experiences and adopted an expert position. Although national-level policies provided backing and legitimacy for involvement, the lack of local-level guidance could hinder the practical implementation and make involvement largely dependent of professionals’ discretion.