Service user involvement enhanced the research quality in a study using interpretative phenomenological analysis – the power of multiple perspectives

Mjøsund, Nina Helen; Eriksson, Monica; Espnes, Geir Arild; Haaland‐Øverby, Mette; Jensen, Sven Liang; Norheim, Irene; Kjus, Solveig Helene Høymork; Portaasen, Inger-Lill; Vinje, Hege Forbech

doi:10.1111/jan.13093

Cited by 61 publications

(82 citation statements)

References 56 publications

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“…), ensuring ethics in research, new angles in data analysis (Mjosund et al . ), and upscaled relevancy to end‐users (Clark et al . ; Faulkner ; Michalak et al .…”

Section: Discussionmentioning

confidence: 99%

How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers

Happell

Gordon

Bocking

et al. 2018

Int J Mental Health Nurs

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Coproduction of research between consumers of mental health services and nonconsumer mental health researchers is increasing. There is some research available describing consumer perspectives of this experience. However, there is a notable lack of research on other (nonconsumer) researcher experiences of and views about consumer involvement in coproduced research. A qualitative exploratory study was undertaken to examine perspectives of mental health researchers about consumer involvement in research. In-depth individual interviews were undertaken with 11 nonconsumer mental health researchers in Australia and New Zealand. Interview transcripts were analysed to identify major themes. There were three interacting themes: the salience of experiential difference, expanded learning, and enhanced research. The dynamic between different perspectives and learning had the effect of enhancing research across the spectrum of study phases and in ensuring research was of value to different groups. The findings emphasize the important contribution consumer researchers can make to mental health research by bringing their unique perspective and enhancing an environment of mutual learning. Findings also point to the need for foregrounding the numerous benefits of joint research between consumer and other researchers to enhance and improve clinical practice and the development of policy.

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“…), ensuring ethics in research, new angles in data analysis (Mjosund et al . ), and upscaled relevancy to end‐users (Clark et al . ; Faulkner ; Michalak et al .…”

Section: Discussionmentioning

confidence: 99%

How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers

Happell

Gordon

Bocking

et al. 2018

Int J Mental Health Nurs

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“…Service user representatives were also included due to the recognized importance of their involvement for enhancing the quality of results from qualitative research (Mjøsund et al, 2017), as well as the findings from health research in general (Bee, Brooks, Fraser, & Lovell, 2015;Shippee et al, 2015). These included the Motor Neurone Disease Association, MND Scotland, the British Dietetic Association, the UK Motor Neuron Disease Clinical Studies Group, and the Sheffield Motor Neuron Disorders Research Advisory Group.…”

Section: Sampling and Recruitmentmentioning

confidence: 99%

Health care professionals’ views on psychological factors affecting nutritional behaviour in people with motor neuron disease: A thematic analysis

Zarotti

Coates

McGeachan

et al. 2019

British J Health Psychol

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Sheffield Teaching Hospitals NHS Foundation Trust, UKMotor neuron disease (MND), also known as amyotrophic lateral sclerosis, is a neurodegenerative disorder that causes progressive muscle paralysis and typically leads to death within 3 years. As no cure is currently available, symptomatic management is the mainstay of treatment. An important part of this is optimizing nutritional intake with evidence that this may positively affect survival and quality of life. Health care professionals (HCPs) play a pivotal role in nutritional management of people with MND (pwMND) but, to date, their views on the psychological barriers faced by pwMND have not been explored. Such an exploration may identify ways in which the delivery of nutritional care for pwMND can be optimized. Methods. Five qualitative focus groups were carried out across the United Kingdom in June 2018 with 51 participants, including 47 HCPs involved with MND care and four service user representatives. Data were analysed through thematic analysis.Results. Four overarching themes were identified: psychological adjustment and patient engagement; nutrition and the need for control; knowledge of nutrition and the complexity of MND; and the psychosocial nature of eating.Conclusions. The findings suggest that the nutritional management of pwMND should be mindful of factors such as the impact of distress at the time of diagnosis, the availability of clear information on nutrition and MND, as well as the importance of illness perceptions and coping strategies. Moreover, tailored psychological interventions should be considered to mitigate the impact on MND on the experience of eating.

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“…People with lived experience of “mental illness” and mental health services (herein referred to as consumers) have considerable expertise to contribute to reforming mental health research agendas and designs to better meet their needs, values and purposes (Byrne, Stratford, & Davidson, ; Happell et al, ). Existing literature clearly illustrates a wide range of benefits of consumer involvement in research, including ensuring research agendas address service gaps; diversifying perspectives on the meaning of qualitative data; identifying ethical concerns; facilitating recruitment of consumers in research; and leading theoretical and cross‐disciplinary work (Ennis & Wykes, ; Michalak et al, ; Mjosund et al, ; Rose, Carr, & Beresford, ). Despite these benefits, presumptions that consumers can or will not be part of research teams are widespread (Happell, Gordon, et al, ; Vollm, Foster, Bates, & Huband, ).…”

Section: Introductionmentioning

confidence: 99%

Very useful, but do carefully: Mental health researcher views on establishing a Mental Health Expert Consumer Researcher Group

Scholz

Platania‐Phung

Gordon

et al. 2019

Psychiatric Ment Health Nurs

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Accessible summary What is known on the subject? Contemporary mental health policy stipulates consumer participation in all aspects of mental health services including service evaluation and other forms of mental health research. Research is identified as underpinning quality mental health services, and therefore, consumers researchers could enhance the mental health sector by contributing to the quality, credibility and relevance of mental health research. What this paper adds to existing knowledge? Non‐consumer researchers generally supported the concept of a consumer expert reference group for researchers at the individual and institutional level. A consumer expert reference group should reflect diversity and offer expertise relevant to the topic of research and may represent one way to normalize partnerships with consumer researchers and realize the benefits they can bring to research. What are the implications for practice? Quality mental health services are underpinned by robust research evidence. It is crucial that consumers are active participants in research activity. The availability of a consumer expert reference group could facilitate collaborations between consumer and non‐consumer researchers and contribute to a stronger consumer focus embedded in mental health research. AbstractIntroductionContemporary mental health policy identifies consumers as active participants in all aspects of mental health services from design to evaluation. Consumer researchers should be actively involved in mental health research and contribute to quality service delivery.AimTo gain a snapshot of mental health researcher views on strategies for increasing research by or with consumers in mental health through the establishment of an Expert Consumer Researcher Group (ECRG).MethodsCross‐sectional survey of 41 non‐consumer mental health researchers from Australia or New Zealand.ResultsThe introduction of an ECRG was considered an effective strategy for linking consumer and non‐consumer researchers and providing specialist advice on research design and methodology. The most suitable location for this group was identified as within consumer advocacy agencies (71%), universities (66%) or research funding bodies (66%). Participants rated their likelihood of seeking advice from the ECRG as high.DiscussionResearch participants supported the value of an ECRG. They emphasized the importance of ensuring the group reflected a diversity of views and offered specialized expertise related to the specific topic. The ECRG could benefit both individual researchers and larger research organizations.Implications for practiceAn ECRG could facilitate collaborations with consumer researchers and in turn enhance the quality of mental health research.

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Service user involvement enhanced the research quality in a study using interpretative phenomenological analysis – the power of multiple perspectives

Cited by 61 publications

References 56 publications

How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers

How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers

Health care professionals’ views on psychological factors affecting nutritional behaviour in people with motor neuron disease: A thematic analysis

Very useful, but do carefully: Mental health researcher views on establishing a Mental Health Expert Consumer Researcher Group

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