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Low-carbohydrate diets promote the idea that reducing carbohydrate intake is a key to a healthier life and more natural way to eat. The proponents of these diets form food communities, which share common ideas about food, put forward their own ‘alternative’ expertise and challenge mainstream dietary advice. This study focuses on the perspectives of self-identified followers of low-carbohydrate diets. We explore their rationales for choosing the diet and how they navigate between different sources of dietary information. The data consists of open-ended responses (n=996) to a food survey published in a leading national Finnish newspaper. The responses have been analyzed using thematic narrative analysis. Our results highlight how uncertainties and disappointments can increase the appeal of ‘alternative’ diets and expertise. Low-carbohydrate diets are used as a form of self-care, illness prevention, risk management and weight loss by people with chronic conditions and lingering symptoms. They offer a sense of control, an alternative to medications and bring together communities of like minded people. The stories intertwine with health populist discourses, casting doubt on traditional experts. In a world of complex food systems and conflicting information the diets offer clear explanations. Additionally, the results emphasise the credibility and authority of lived experiences. publishedVersion

Miesten yleisimmän syövän, eturauhassyövän, seulonta ei tällä hetkellä ole osa suomalaista seulontaohjelmaa. Seulonnan laajentamisesta käydään kuitenkin kiivasta keskustelua monessa maassa. Seulonta perustuu verikokeella mitattavaan PSA-arvoon, joka voi indikoida lisätestauksen tarvetta, mutta ei suoraan kerro syövän olemassaolosta. PSA-testituloksilla on kuitenkin lääketieteellinen merkitys diagnosointivaiheessa, hoitojen aikana ja niiden päätyttyä. Terveydenhuollon ammattilaisten lisäksi tuloksilla on oma merkityksensä syöpää sairastavien miesten arjessa, jossa he pyrkivät ennakoimaan sairauden puhkeamista, seuraamaan sen etenemistä ja arvioimaan hoitovastetta. Tässä tutkimuksessa kysymme: 1) Millaisia merkityksiä PSA-testitulokset saavat miesten sairauskertomuksissa? ja 2) Millä tavalla nämä merkitykset vaihtelevat sairauden eri vaiheissa? Aineistomme koostuu eturauhassyövän sairastaneiden miesten yksilöhaastatteluista (n=34). Analyysissä lähestymme haastattelukertomuksia narratiivisen lähestymistavan kautta ja tarkastelemme PSA-arvoille annettuja merkityksiä sekä testitulosten nivoutumista osaksi sairauden ajallista kulkua. Testituloksilla oli odotetusti merkittävä asema omassa kehossa tapahtuvien muutosten seuraamisessa. Tulosten seuraaminen loi kontrollin tunnetta, mutta saattoi myös aiheuttaa epävarmuutta ja ahdistusta. Tuloksia tulkitessaan miesten täytyi myös pohtia, millaiset muutokset olivat ’normaaleja’ ja mitkä puolestaan kertoivat sairauden etenemisestä tai hoitojen toimivuudesta. Testituloksilla oli merkitystä myös miesten välisessä vuorovaikutuksessa niin yhteenkuuluvuuden luojana kuin erottavana tekijänä. Lisäksi PSA-testauksessa käyminen ja omien testiarvojen tuntemus näyttäytyivät vastuullisena terveyskäyttäytymisenä. Tutkimuksen kautta pyrimme laajentamaan keskustelua seulonnoista ja niiden kautta saatavasta numeerisesta tiedosta nostamalla esiin maallikkonäkemyksiä ja tulkintoja. Tulosten pohjalta nousee esiin tarve tukea miehiä testituloksiin liittyvien epävarmuuksien käsittelyssä sekä huomioida kuinka seulontakäytännöillä on myös sosiaalisia ja moraalisia ulottuvuuksia lääketieteellisten ja taloudellisten ulottuvuuksien lisäksi.

The growing prominence of patient and public involvement in health services has led to the increased use of experiential knowledge alongside medical and professional knowledge bases. Third sector organisations, which position themselves as representatives of collective patient groups, have established channels to communicate experiential knowledge to health services. However, organisations may interpret and communicate experiential knowledge in different ways, and due to a lack of inherent authority, it can be dismissed by health professionals. Thus, drawing on individual interviews with organisation representatives, we explore the definitions and uses of as well as the ‘filters’ placed upon experiential knowledge. The analysis suggests that whilst experiential knowledge is seen as all-encompassing, practical and transformative, the organisations need to engage in actions that can tame experiential knowledge and try to balance between ensuring that the critical and authentic elements of experiential knowledge were not lost whilst retaining a position as collaborators in health care development processes.

Purpose To understand the perspectives of oncology nurses on peer support for patients with cancer and the role of oncology nurses in its provision. Method Thematic semi-structured interviews of 10 oncology nurses working in a single university hospital were conducted. The data were analysed using content analysis. Results Oncology nurses thought that peer support promotes the psychosocial wellbeing of patients with cancer by increasing their social contact and strengthening their emotional resources. In their daily work, oncology nurses engaged in several activities that promote the interactions between patients with cancer and informal forms of peer support. However, directing patients with cancer to formal peer support services outside specialised health care was not an established practice. Oncology nurses expressed several concerns about the availability of support and the coping ability of peer supporters and expressed scepticism about the reliability of information shared in peer support groups. Conclusions The awareness of oncology nurses regarding formal peer support services appears rather limited. This knowledge gap should be reduced, such as through closer collaboration between hospitals and third sector cancer organisations, which does not appear effective at present based on the results. In addition, patients with cancer should be systematically informed about peer support.

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.

Involving patients and the public in healthcare decision-making is on the policy agenda in several countries. The aim of our study was to describe and analyse the development of patient and public involvement from a policy perspective. We argue that the language of health policies can influence both the aims and the development of involvement methods. In this study health policy documents, which have guided the development of patient and public involvement in Finland have been analysed using methods of Membership Categorisation Analysis. This has enabled us to explore how health policy documents categorise patients and the wider public in relation to involvement and orientate the involvement activities in which people are able to participate. Different set of abilities, expectations, responsibilities and opportunities is attached to the categories of patient, risk group, service user, customer and expert. Health policy documents often equate involvement with choice making by service users and customers; or as involvement in service development by experts. In both of these cases, involvement is depicted as an individual activity that requires personal responsibility and specialist knowledge. Although involvement opportunities have overall increased, they are primarily available to people that are "participation ready" and able to adopt roles promoted in policies. Health policy documents produce one interpretation of involvement, nevertheless it is important that diverse groups of patients, the public and health professionals participate in the discussion and express their views, which may differ from those of policy makers.