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Introduction This study investigates comments that prostate cancer patients spontaneously write in the margins of the Expanded Prostate Cancer Index Short Form (EPIC-26) questionnaire. We aim to show the possible barriers that patients face while answering the survey, and to consider how these barriers may affect the response data generated. We investigate the kind of information patients’ comments on EPIC-26 contain, and patients’ motivations to provide this information. We also study why some EPIC domains spark more comments than others. Method We analyzed 28 pages of transcribed comments and four pages of supplementary letters from our survey participants (n = 496). Using inductive content analysis, we generated 10 categories describing the content of participants’ comments, and four themes demonstrating their motives for commenting. The comments regarding each EPIC domain were quantified to discover any differences between domains. Results The sexual domain of EPIC-26 provoked over half of all comments. Patients without recent sexual activity or desire had difficulties answering sexual function questions 8–10. The lack of instructions on whether to take erectile aid use into account when answering erectile function questions led to a diversity of answering strategies. Patients with urinary catheters could not find suitable answer options for questions 1–4. All domains sparked comments containing additional information about experienced symptoms. Conclusion Patients are mainly willing to report their symptoms, but a lack of suitable answer options causes missing data and differing answering strategies in the sexual and urinary domains of EPIC-26, weakening the quality of the response data received.

BACKGROUND Localised prostate cancer affects patient's quality of life in many ways. The aim of this study was to explore factors related to self-rated health and life satisfaction for patients treated for prostate cancer, and to compare the results of these generic quality-of-life measures to the prostate cancer-specific quality-of-life measure (UCLA Prostate Cancer Index), which focuses on physical functioning. MATERIAL AND METHODS This cross-sectional survey was carried out among 183 men who underwent radical prostatectomy in 2012-2015 at a university hospital in Finland and were seen 1 year postsurgery. Approval from an ethics committee and written consents from participants were received. A questionnaire was used to evaluate patients' perceived quality of life. Logistic regression model, Spearman's correlation, Kruskal-Wallis test and Mann-Whitney U-test were used to analyse factors related to quality of life. RESULTS Of the 183 men in the study, 63% rated their health status as good, and 70% were satisfied with their lives after prostatectomy. Older age and better urinary function were the only factors that explained both better self-rated health and better satisfaction with life. The patients seemed not to interpret problems with sexual function as health-related problems. In our sample, sexual dysfunction was relatively severe, but patients considered them to be less harmful than urinary or bowel symptoms. Interestingly, 24% of the men with low sexual function did not find that dysfunction bothersome. CONCLUSIONS Objectively measured physical functioning is not necessarily in line with patients' experienced satisfaction with life and their self-ratings of health. More longitudinal and qualitative research is needed about the meanings that patients attach to physical treatment side effects and the extent to which they can adapt to them over time. With a bigger sample and longer follow-up time, it would be possible to identify men who particularly benefited from pretreatment counselling.

Työikäisenä muistisairauteen sairastuminen rikkoo oletetun elämänkulun, vaatien sopeutumista ja elämäntarinan uudelleenrakentamista. Tutkimuksessa selvitettiin työikäisenä sairastuneiden ja heidän läheistensä haastatteluiden (n = 26) perusteella, kuinka sairastuneet jäsentävät muistisairauden aiheuttamia elämänmuutoksia sai­rauden alkuvaiheessa ja miten läheisen tarina resonoi sairastuneen tarinan kanssa. Analyysissä havaittiin kolme erilaista tarinatyyppiä. Kaaoksen tarinaa leimasi sairas­tumisen aiheuttama elämän epävarmuus ja organisoimattomuus. Irtautumisen tari­nassa päästettiin irti turhiksi koetuista asioista, kavennettiin elämänpiiriä ja keskityt­tiin hetkessä elämiseen. Aktiivisuuden tarinassa suunniteltiin tulevaisuutta, toimittiin aktiivisesti ja vahvistettiin omaa hyvinvointia sairautta vastustamalla. Läheisten ja sairastuneiden tarinoiden yhtäläisyys vaihteli tarinatyypeittäin. Sairastamisen alkuvai­heen kokemuksia ja tilanteeseen sopeutumista peilataan tutkimuksessa kulttuurisiin sairastamisen mallitarinoihin. Tällöin tarkastellaan, kuinka tarinallisuus on osa sairas­tumisen käynnistämää elämäntarinan uudelleenrakentamisen prosessia. Lisäksi poh­ditaan, miten työikäisenä sairastuneen henkilön hyvinvointia voidaan tukea huomioi­den ihmisten erilainen suhtautuminen sairauteen. Tarvitaan ymmärrystä kulttuurisis­ta sairastamisen mallitarinoista ja muistisairauden vaikutuksista yksilön sekä perheen tilanteeseen, jotta sairastuneita ja heidän läheisiään voidaan nykyistä tehokkaammin tukea sairauteen sopeutumisessa ja sopivan arjen aktiivisuuden ylläpitämisessä.

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.

Eturauhassyövän seulonnan hyödyistä ja haitoista on käyty aktiivista keskustelua viime vuosina. Vaikka PSA-testi on laajasti käytössä terveydenhuollossa, väestötason seulontaa ei toistaiseksi suositella, sillä seulonnan haittoja pidetään hyötyjä suurempina. Seulonnan haittoja ovat ylidiagnostiikka ja siitä aiheutuvat ylimääräiset hoidot, jotka voivat heikentää miesten elämänlaatua. Artikkelissa tarkasteltiin paikallista eturauhassyöpää sairastavien miesten näkemyksiä seulonnan tarpeellisuudesta. Tutkimuksen aineisto koostui 28 eturauhassyöpää sairastavan miehen yksilöhaastatteluista. Analyysimenetelmänä käytettiin diskurssianalyysia. Suurin osa haastateltavista suhtautui myönteisesti väestötason seulontaan ja halusi parantaa miesten pääsyä PSA-mittauksiin. Seulonnan tarpeellisuutta perusteltiin argumenteilla, jotka liittyvät varhaisen diagnostiikan hyötyihin – kuten kustannusten säästymiseen ja kuolleisuuden vähentämiseen – tai miesten oikeuksiin ja sukupuolten tasa-arvoon. Tulostemme perusteella miehet ovat tietoisia seulontaan liittyvistä haitoista, mutta siitä huolimatta he ovat seulonnan käynnistämisen kannalla. Seulonta hahmotettiin miesten terveyden edunvalvontaan liittyvänä asiana.

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.

Radical treatments of prostate cancer often lead to a pervasive liminal state that is characterised by multiple uncertainties that relate both to a possible recurrence of cancer and recovery from side effects, such as erectile and urinary dysfunctions. Liminality can make it difficult for cancer patients to narrate their experiences, as their stories lack a definite ending. After interviews with 22 Finnish men who had undergone radical prostatectomy, we analysed how men produce closure in their illness narratives. Focusing on the timelines of control visits or their anticipated recovery from side effects, these interviewees sought provisional certainty within a seemingly chaotic future. By locating erectile dysfunction in the wider context of a life-course and interpreting their fading sexuality as a 'natural' consequence of ageing, these men were adjusting to their post-operative lives. Our study further shows that the inability to adjust personal experiences to positive culturally available storylines that provide a chance for the narrative reconstruction of life, can cause materialised negative consequences, such as relationship breakdowns.

Transfer from a private home to an assisted living facility has been pictured as a major change in an older person's life. Older people themselves tend to perceive the change as something eventual that breaks the bonds and familiarities of previous life. The aim of this article is to shed light on residents’ chances to reach affiliation (as Nussbaum defines it) in their new living surroundings, and thus adjust to that social environment. Based on ethnographical data gathered in a Finnish sheltered home in 2013–14, we studied residents’ affiliations through ruptures, namely residents’ perceived social isolation. Social isolation was found to be connected with two separate social worlds: the one inside the facility and the one outside. Social isolation resulted from different factors connected to the quality of social interaction with co-residents and the staff, daily routines of the institution and residents’ personal life histories. Also, residents’ older friends seemed to avoid visiting care facilities which caused perceived social isolation. This article deepens the insights into the perceived social isolation of assisted living and thus helps care providers to create new strategies to enable due affiliation for their residents.

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.

Purpose: Based on focus groups, we analyse how practical nursing students deal with being as smokers and future healthcare workers. The way they justify their smoking is discussed within a group of peers. Methods: The study has a qualitative design with an inductive approach using focus group interviews (FGIs) for data collection. A total of 29 students were interviewed in five groups of five and one group of four participants. Results: In the analysis, we found four different discursive practices the students utilized for rationalizing their own smoking and coping with the moral dilemma of smoking in a context of health care where smoking is forbidden: (1) students normalized smoking with references to its prevalence within their social circles, (2) the students asserted that their smoking was under control, (3) students considered themselves responsible smokers, and (4) students identified smoking as a part of their identity. Conclusion: Training should support the growth of professional identity and address the smoker’s identity right from the start of education. Smokers need special attention in the formulation of professional identity, however, without being stigmatized any further.

Culturally, institutional care has been seen to strip older people of their status as full adult members of society and turn them into ‘have-nots’ in terms of agency. The substantial emphasis in gerontology of measuring the activity and functional ability of the elderly has unintentionally fostered these stereotypes, as have traditional definitions of agency that emphasise individuals’ choices and capacities. The aim of this paper is to discover what kind of opportunities to feel agentic exist for people who have reduced functional abilities and therefore reside in assisted living. In this paper, agency is approached empirically from the viewpoint of Finnish sheltered housing residents. The data were gathered using participant observation and thematic interviews. This study suggests that even people with substantial declines in their functional abilities may feel more or less agentic depending on their functional and material surroundings and the support they receive from the staff, relatives and other residents. The perception that residents’ agency in assisted living cannot be reduced to measurable activity has methodological implications for gerontological research on agency. Care providers can utilise our findings in reasserting their residents’ quality of life.

Accessible summaryWhat is known on the subject? According to estimates more than half of adult mental health service users are parents, but their experiences are largely lacking from research literature. Parental mental illness can often be viewed from a risk perspective. Parents with mental illness and their families have unmet support needs. What this paper adds to existing knowledge? Parents with mental illness want acknowledgement that they can be able and responsible. Many parents adopt an expert by experience identity. Fathers can feel their parental role is not recognized and mothers express fears of being judged if they discuss their illness. What are the implications for practice? Adult mental health services need to recognize and support parental role of service users. Joint care planning and family oriented care should be promoted. Professionals should take advantage of the knowledge of these parents and they could be more actively engaged in service development. AbstractIntroduction Parental mental illness is often viewed from a risk perspective. Despite this, being a parent can be both valuable and motivating. Research literature lacks the perspective of mothers and fathers, who have experienced mental illness. Aim This study explores how parents with mental illness construct their identities as mothers and fathers and their experiences with health and social care services. Method Three focus groups with 19 participants were conducted in Finland and Scotland. Methods of discourse analysis have been used in to analyse the interview data. Results Adult service users want their parenting role recognized and supported. Parents have knowledge and skills which can be utilized and many have adopted an expert by experience identity. Discussion Being able to see oneself as a ‘good’ parent can be challenging but important. Parents may require support, but want to be included in the planning of their care. Services could make more use of the knowledge and skills parents and families have, and joint working could lessen parents’ anxieties. Implications for practice Mental health practitioners are in a key position in providing more family centred, resource focused care. Service user expertise should be acknowledged in clinical practice.

The concept of resident-facility fit has largely been used to illustrate whether a residential care facility and a resident are together able to meet requirements set by only the hampering functional abilities of the latter. The purpose of this paper is to study how assisted living residents perceive resident-facility fit. The data were gathered ethnographically from both observations and resident interviews in a sheltered home in Finland during 2013-2014. Perceived resident-facility fit is based on several relational factors that connect to both the residents as individuals and their surroundings. This fit seems also to be partly conditional and indeed depends on residents' trust in having their own potential to act. Good resident-facility fit results in feeling at home in a facility, whereas poor fit can even result in residents' feeling imprisoned. Care providers can thus utilize our results to affirm residents' quality of life in residential facilities.

The purpose of this study was to explore the views of mental health professionals on deinstitutionalization reforms in Russia. Qualitative interviews were conducted with 33 specialists from outpatient mental health clinics. The data were analyzed using thematic analysis. The results revealed that the professionals appeared very restrained in supporting the reforms. They argued for the preservation of the existing mental health care system rather than its transformation. Their lines of argumentation were organized around four key themes as follows: 1) critiques of state policies and a suspicion of reforms, 2) tradition instead of innovation: reclaiming the image of Soviet psychiatry, 3) hospitals as a means of social control, and 4) reform as a threat to the protection of people with mental health problems. The findings suggest that practitioner resistance to deinstitutionalization is a complex phenomenon, demonstrating how various political, economic, social, and cultural factors are intertwined ...

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.

Autonomy is a pervasive concept in Western lifestyles today. However, people in the fourth age are assumed not to be autonomous but dependent on other people. The data of this study consisted of interviews with Finnish community-dwelling 90–91-year-old people. The study aim was to examine how these people see their own autonomy in their everyday lives. The analysis was based on membership categorisation analysis. Our respondents considered their autonomy through three distinct themes. Functional ability was considered in terms of being physically capable of managing daily tasks. Independence in decision making was based on material and financial self-sufficiency and on the respondents' supposition that they were capable of making decisions due to an absence of memory disorders. Additionally, autonomy was considered as contesting norms of age-appropriateness. Among respondents, chronological age seemed to have been replaced by functional and cognitive ability as a definer of categorisations; age-others became ability-others. Our study revealed that the perceptions of autonomy also included gendered features as they were linked with differing gendered ideals, roles and life domains of women and men. The results highlight the internal diversity among the oldest old and challenge the third/fourth age division. Instead, they suggest the existence of a certain ‘grey area’ within old age, and urge an analysis on the subtle meaning making involved in older people's constructions of age-categorisations.

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.

Purpose We explore the motivations of middle-aged consumers of anti-aging products and services in relation to aging, health, and appearance. Admission of use of anti-aging products and services could align a respondent with a stigmatized group, old people, and also connotes a feminine concern with aesthetics. For these reasons, people, particularly men, will be unlikely to report using them for this purpose. Design and methods Semi-structured, in-depth interviews were conducted among 19 men and women aged 42-61 years. Topics included their perceptions of bodily changes and their responses to these. We analyzed data qualitatively. Results Respondents frame their uses of anti-aging products in terms of health and appearance, not anti-aging per se. Both men and women see anti-aging as related to beautiful appearance and thus as a feminized activity. Both are concerned about appearance, but in gendered ways. Overall, respondents conflate bodily appearance, health, and aging in their constructions of anti-aging. Implications This conflation maintains inequality by stigmatizing old age as unhealthy and unseemly. Our results point to the limits of studying the consumption of anti-aging products and services if researchers ask only about anti-aging uses per se. They also point to the ways that discourses of health and appearance naturalize ageism, as they suggest that old age inheres in bodies that "naturally" decline and thus should be excluded.