Publications by authors named "Marjaana Jones"

5 Publications

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Perspectives of oncology nurses on peer support for patients with cancer.

Eur J Oncol Nurs 2021 Apr 22;51:101925. Epub 2021 Feb 22.

Faculty of Social Sciences, Nursing Science, Tampere University, Tampere, Finland; TAYS Cancer Center, Tampere University Hospital, Finland.

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.
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http://dx.doi.org/10.1016/j.ejon.2021.101925DOI Listing
April 2021

Personal perspectives on patient and public involvement - stories about becoming and being an expert by experience.

Sociol Health Illn 2020 05 18;42(4):809-824. Epub 2020 Feb 18.

Faculty of Social Sciences, University of Helsinki, Helsinki, Finland.

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.
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http://dx.doi.org/10.1111/1467-9566.13064DOI Listing
May 2020

Alignments and differentiations: People with illness experiences seeking legitimate positions as health service developers and producers.

Health (London) 2020 05 16;24(3):223-240. Epub 2018 Sep 16.

University of Helsinki, Finland.

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.
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http://dx.doi.org/10.1177/1363459318800154DOI Listing
May 2020

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

Health (London) 2020 01 5;24(1):21-37. Epub 2018 Jul 5.

University of Helsinki, Finland.

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 ( = 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.
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http://dx.doi.org/10.1177/1363459318785711DOI Listing
January 2020

"The citizen is stepping into a new role"-Policy interpretations of patient and public involvement in Finland.

Health Soc Care Community 2018 03 20;26(2):e304-e311. Epub 2017 Nov 20.

Faculty of Social Sciences, University of Tampere, Tampere, Finland.

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.
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http://dx.doi.org/10.1111/hsc.12520DOI Listing
March 2018