| Literature DB >> 28901217 |
Ing-Marie Carlsson1, Marjut Blomqvist1, Henrika Jormfeldt1.
Abstract
Undertaking research studies in the field of mental health is essential in mental health nursing. Qualitative research methodologies enable human experiences to become visible and recognize the importance of lived experiences. This paper argues that involving people with schizophrenia in research is critical to promote their health and well-being. The quality of qualitative research needs scrutinizing according to methodological issues such as trustworthiness and ethical standards that are a fundamental part of qualitative research and nursing curricula. The aim of this study was to critically review recent qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions, regarding descriptions of ethical and methodological issues in data collection and analysis. A search for relevant papers was conducted in three electronic databases, in December 2016. Fifteen qualitative interview studies were included and reviewed regarding methodological issues related to ethics, and data collection and analysis. The results revealed insufficient descriptions of methodology regarding ethical considerations and issues related to recruitment and sampling in qualitative interview studies with individuals with severe mental illness, putting trustworthiness at risk despite detailed descriptions of data analysis. Knowledge from the perspective of individuals with their own experience of mental illness is essential. Issues regarding sampling and trustworthiness in qualitative studies involving people with severe mental illness are vital to counteract the stigmatization of mental illness.Entities:
Keywords: Critical review; ethical issues; mental health; schizophrenia; trustworthiness
Mesh:
Year: 2017 PMID: 28901217 PMCID: PMC5654012 DOI: 10.1080/17482631.2017.1368323
Source DB: PubMed Journal: Int J Qual Stud Health Well-being ISSN: 1748-2623
Figure 1.Flowchart of the literature search and selection.
Characteristics of the articles included in the critical review, including issues of data collection, data analysis and ethics.
| Authors (publication year), country | Title | Aim | Method/setting | Sample/recruitment | Data analysis | Ethics | Methodological limitations and strengths |
|---|---|---|---|---|---|---|---|
| Barut, Dietrich, Zanoni, & Ridner (2016), USA | Sense of belonging and hope in the lives of persons with schizophrenia | To explore sense of belonging and hope in the lived experience of people with chronic schizophrenia spectrum disorders | Qualitative analysis; semi-structured interviews. A psychosis unit at the hospital | 20 participants with chronic schizophrenia-spectrum disorder. Purposive sample. The physician gave feedback on the person’s ability to provide informed consent. Those who were determined to have capacity to consent were approached. The study participant received a 25-dollar gift card. One participant became notably anxious during the interview and ended the interview early | Line-by-line analysis using ATLAS. Two of the authors participated during the analysis | Institutional review board approval. Informed consent was signed | The authors discuss that the setting, a psychosis unit at the hospital, could have affected the results |
| Bjørkedal, Torsting, & Møller (2016), Denmark | Rewarding yet demanding: Client perspectives on enabling occupations during early stages of recovery from schizophrenia | To explore how people with schizophrenia experience an occupational therapy intervention designed to enable them to carry out meaningful occupation in the early phases of recovery | Feasibility study of an intervention; qualitative interviews. A large mental health centre | 10 participants diagnosed with schizophrenia spectrum disorders. Convenience sample. Staff approached eligible candidates and then the researcher gave information | Thematic analysis. Three of the authors participated during the analysis in different steps | The Ethics Committee of the Capital Region stated that no approval was necessary. Informed consent was signed. The participants were informed that their participation would be described briefly in their medical records due to the intervention | The authors discuss interpretation bias. The recruitment strategy, sample size and that no record was written about dropouts are discussed. Only those who completed the entire intervention participated in the interview |
| Blixen et al. ( | Barriers to self-management of serious mental illness and diabetes | To asses perceived barriers to self-management among patients with both serious mental illness and diabetes to inform healthcare delivery practice | Phenomenological approach; semi-structured interviews. An urban safety-net care setting | 20 participants with a diagnosis of severe mental illness, from a larger study. Convenience sample | Qualitative content analysis | Approved by the institutional review board of the participating institution. Informed consent was assigned | The authors mention that it is a small convenience sample |
| Burke, Wood, Clark, & Morrison (2016), USA | Experiences of stigma in psychosis: A qualitative analysis of service users’ perspectives | To explore experienced, perceived and internalized/self-stigma | Thematic analysis; semi-structured interviews. People with contact with mental health services were interviewed in their homes | 12 participants diagnosed with schizophrenia, schizoaffective disorder or delusional disorder. Data were collected as part of another study with consecutive sampling | Thematic analysis | Unclear | The authors problematize that the sample was biased towards males and white ethnicity. They also highlight that the results of social exclusion and marginalization are most pertinent for people with severe mental illness |
| de Jager et al. (2016), Australia | Investigating the lived experience of recovery in people who hear voices | To investigate voice hearers’ lived experience of recovery | Narratives; semi-structured interviews | 11 participants completed the Diagnostic Interview for Psychosis to ascertain that they met diagnostic criteria. Recruited from the Hearing Voices Network and Australian Schizophrenia Research Bank. One participant withdrew after being informed that the interview could cause distress. Reimbursement was offered for travel expenses and time spent taking part | Narrative analysis | Ethical approval was obtained from the University of Sydney Human Ethic Committee. Informed consent was assigned | The authors problematize the small sample size and self-selection. Participants were actively involved in the generation of narrative summaries and the narratives were member checked by participants |
| Jones et al. ( | “Did I push myself over the edge?”: Complications of agency in psychosis onset and development | To investigate the subjective experience of agency in the onset and early development of psychosis | Phenomenology; semi-structured interviews; included participatory techniques | 19 participants diagnosed with schizophrenia spectrum and/or bipolar disorder with psychotic features. Recruited through flyers, the internet, community field sites, word of mouth and clinician referral | Grounded theory and qualitative phenomenology | Approved by the primacy investigator’s ethics board. Standard consent process | The authors claim that they did not intend to produce generalizable knowledge |
| Kidd et al. ( | Locating community among people with schizophrenia living with a diverse urban environment | To provide an in-depth examination of the experiences, beliefs, behaviours and spaces that constitute community participation for a highly diverse group of people with schizophrenia | Longitudinal qualitative ethnographic design; semi-structured interviews were conducted three times over 10 months. Field notes were taken on foot or in transit in the community with participants | 30 participants with schizophrenia or psychosis spectrum mental illness. Purposive sample. Participants were recruited by care providers at hospital, community services and boarding home | Ethnographic method | Ethical approval and issues unclear | The study was conducted in a single urban setting. The participants were engaged in discussions about the emerging categories and themes. Preliminary findings were also reviewed by an advisory group of people with lived mental illness |
| Landon, Shepherd, McGarry, Theadom, & Miller (2016), USA | When it’s quiet, it’s nice: Noise sensitivity in schizophrenia | To explore and document the experiences of noise sensitivity in people with schizophrenia | Semi-structured interview | 7 participants diagnosed with schizophrenia or schizoaffective disorder. Recruited from mental health service providers and associated networks | Thematic analysis | Ethical approval and issues unclear. Participants were invited to bring a support person to the interview but all declined | The authors mention that the sample was small |
| Paul ( | Responses to stigma-related stressors: A qualitative inquiry into the lives of people living with schizophrenia in India | To shed light on conditions and factors that either promote or hinder coping with stigma among people living with schizophrenia | Qualitative interpretive design considering multiple intersectionalities; face-to-face in-depth interviews, using an open-ended interview guide | 20 participants diagnosed with schizophrenia and/or schizophrenia-related disorder. Purposive and snowball sampling strategies were used due to poor social visibility of people living with schizophrenia, and locating and recruiting them was challenging. Participants were recruited from private psychiatric clinics, mental health agencies and schizophrenia support groups | Thematic analysis | Ethical approval was received. Ethical principles were followed | Findings failed to capture experiences of those who received long-term institutionalized care. Interview notes were validated by the participants themselves |
| Rhodes, Parrett, & Mason ( | A qualitative study of refugees with psychotic symptoms | To examine the experiences of refugees with psychotic disorders | Interpretive phenomenological analysis | 7 refugee asylum-seekers diagnosed in a psychiatric setting with psychotic symptoms. Clinicians suggested participants. 14 participants were suggested; 4 declined to participate and 3 did not fulfil the inclusion criteria | Interpretive phenomenological analysis | Ethical approval was granted by the local research committee of the relevant London NHS Mental Health Trust | The authors problematize the small sample size and that six were male |
| Saavedra, Lópes, Gonzáles, & Cubero ( | Does employment promote recovery? Meanings from work experience in people diagnosed with serious mental illness | To explore the meaning attributed to work activity by subjects with serious mental illness, mainly schizophrenia | Phenomenological approach | 21 participants with a diagnosed schizophrenia spectrum disorder. Participants were selected from a larger sample of a study | Social positioning analysis | Ethical approval was given and informed consent was assigned | No limitations are discussed |
| Singh, Jakhaia, Amonashvili, & Winch ( | “Finding a way out”: Case histories of mental health care-seeking and recovery among long-term internally displaced persons in Georgia | To present histories of care-seeking for and recovery from mental illness and psychosocial problems in the context of protracted internal displacement | Case study; semi-structured interviews | 9 participants. Purposive selection from a larger sample. Recruited by clinicians | Grounded theory | Ethical approval is not declared. Ethics section is missing | No limitations are discussed. Credibility was used by member checks with a different subsample |
| Topor, Ljungkvist, & Strandberg ( | The costs of friendship: Severe mental illness poverty and social isolation | To explore the relationships between financial strain and social isolation | Grounded theory. 11 were living in their own apartment and 5 in group homes | 16 participants. Participants were recruited from their municipalities’ specialist team | Thematic analysis | The study was approved by the Regional Ethics Committee in Lund | The authors problematize the sample size |
| van Langen, Beentjes, van Gaal, Nijhuis-van der Sanden, & Goossens (2016), Netherlands | How the illness management and recovery program enhanced recovery of persons with schizophrenia and other psychotic disorders: A qualitative study | To describe how the illness management and recovery programme enhanced recovery of people with schizophrenia and other psychotic disorders, from their own perspective | Descriptive phenomenological approach; one-to-one interviews | 14 participants were asked and 8 participated. Recruited from one outpatient unit for people with a psychiatric diagnosis. Their mental health nurse performed recruitment | Colaizzi’s data analysis method, supported by MAXQDA software. At the end of each interview, findings were summarized and checked with the participant to ensure that the accuracy of the experience was grasped | The study was conducted in accordance with the Declaration of Helsinki. The authors consulted the Dutch Central Committee on Research Involving Human Subjects and concluded that ethical approval was not needed because the participants did not receive treatment and were not asked to behave in a particular way. Informed consent was assigned | Selection bias is highlighted since the trainers selected the potential participants |
| Waite et al. ( | The patient experience of sleep problems and their treatment in the context of current delusions and hallucinations | To explore patients’ accounts of sleep problems and associated psychological treatment | Phenomenological approach; semi-structured interviews | 10 participants with psychosis were recruited from a randomized control study | Interpretive phenomenological analysis | Ethical approval was obtained from an NHS research ethics committee | The participants were a selected group in the context of a research trial |
NHS, National Health Service.