Barriers to participation in mental health research: are there specific gender, ethnicity and age related barriers?

Woodall, Anna; Morgan, Craig; Sloan, Claire; Howard, Louise

doi:10.1186/1471-244x-10-103

Cited by 198 publications

(196 citation statements)

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“…In our systematic review we reported that researchers have attempted to identify facilitators and barriers to participation in mental health research through focus groups and surveys with caregivers and patients or have reported on their own perceptions of barriers (Woodall et al, 2010). However, few studies have investigated which factors influence recruitment from the perspective of research participants and, to our knowledge no studies have investigated barriers and facilitators in patients with a first episode of psychosis.…”

Section: Introductionmentioning

confidence: 91%

Barriers to participation in mental health research: Findings from the Genetics and Psychosis (GAP) Study

Woodall

Howard

Morgan

2011

International Review of Psychiatry

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The aim of this study was to investigate why people with a first episode of psychosis choose or decline to participate in mental health research, using a qualitative study design. Participants were recruited via referrals from the Genetics and Psychosis (GAP) study. A total of 26 individuals with a first-episode of psychosis (nine of whom declined participation in the GAP study and 17 who participated) were individually interviewed and asked about their attitudes towards mental health research participation. Thematic analysis of interview transcripts was used to determine dominant themes and sub-themes on what constituted barriers and facilitators to participation. Reasons for research participation identified included a desire to help others, curiosity, and positive experiences with clinicians. Decisions to participate or not were also influenced by practical issues, including the timing of the approach, researchers' communication skills and whether individuals had concerns that it may be potentially harmful to their health. Other barriers to participation included patients' conceptualizations of mental health problems and the influence of other inpatients. Information on barriers and facilitators to recruitment in mental health research could inform recruitment strategies, thereby maximizing recruitment rates and minimizing the risk of selection biases.

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Section: Introductionmentioning

confidence: 91%

Barriers to participation in mental health research: Findings from the Genetics and Psychosis (GAP) Study

Woodall

Howard

Morgan

2011

International Review of Psychiatry

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“…Some patients with a psychotic disorder do not believe they are unwell or require treatment and may therefore not believe in the need for research into the disorder. 31 Other factors associated with research participation such as timing of the approach and communication skills may also explain this variation. 31 We found that individuals of black ethnic group were less likely to give consent, in keeping with previous studies.…”

Section: Main Findingsmentioning

confidence: 99%

“…31 Other factors associated with research participation such as timing of the approach and communication skills may also explain this variation. 31 We found that individuals of black ethnic group were less likely to give consent, in keeping with previous studies. 3 12 32 Conversely, individuals of 'other' ethnic group were also less likely to be approached independent of potential confounders, a finding also reported in other studies.…”

Section: Main Findingsmentioning

confidence: 99%

What proportion of patients with psychosis is willing to take part in research? A mental health electronic case register analysis

et al. 2017

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ObjectiveThe proportion of people with mental health disorders who participate in clinical research studies is much smaller than for those with physical health disorders. It is sometimes assumed that this reflects an unwillingness to volunteer for mental health research studies. We examined this issue in a large sample of patients with psychosis.DesignCross-sectional study.SettingAnonymised electronic mental health record data from the South London and Maudsley NHS Foundation Trust (SLaM).Participants5787 adults diagnosed with a psychotic disorder.ExposureWhether approached prior to 1 September 2014 for consent to be approached about research participation.Main outcome measuresNumber of days spent in a psychiatric hospital, whether admitted to hospital compulsorily, and total score on the Health of the Nation Outcome Scale (HoNOS) between 1 September 2014 and 28 February 2015 with patient factors (age, gender, ethnicity, marital status and diagnosis) and treating clinical service as covariates.Results1187 patients (20.5% of the total sample) had been approached about research participation. Of those who were approached, 773 (65.1%) agreed to be contacted in future by researchers. Patients who had been approached had 2.3 fewer inpatient days (95% CI −4.4 to −0.3, p=0.03), were less likely to have had a compulsory admission (OR 0.65, 95% CI 0.50 to 0.84, p=0.001) and had a better HoNOS score (β coefficient −0.9, 95% CI −1.5 to −0.4, p=0.001) than those who had not. Among patients who were approached, there was no significant difference in clinical outcomes between those agreed to research contact and those who did not.ConclusionsAbout two-thirds of patients with psychotic disorders were willing to be contacted about participation in research. The patients who were approached had better clinical outcomes than those who were not, suggesting that clinicians were more likely to approach patients who were less unwell.

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“…Design issues include the inability of cross-sectional studies to tease out ageing from cohort effects, along with when, where and among whom the study took place. Measurement issues are concerned with how the quality of the data obtained from participants could be affected by age, such as deteriorating memory (Rogler et al 1992), lack of understanding (Wetherell et al 2009) and stigma (Aromaa et al 2011), resulting in unintentional or deliberate under-reporting of mental illness among older adults (Woodal et al 2010). They also concern the suitability of the instrument and outcome measures used across the lifespan (Fuentes & Cox, 1997).…”

Section: Introductionmentioning

confidence: 99%

Mood and anxiety disorders across the adult lifespan: a European perspective

McDowell¹,

Ryan²,

Bunting³

et al. 2013

Psychol. Med.

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BackgroundThe World Mental Health Survey Initiative (WMHSI) has advanced our understanding of mental disorders by providing data suitable for analysis across many countries. However, these data have not yet been fully explored from a cross-national lifespan perspective. In particular, there is a shortage of research on the relationship between mood and anxiety disorders and age across countries. In this study we used multigroup methods to model the distribution of 12-month DSM-IV/CIDI mood and anxiety disorders across the adult lifespan in relation to determinants of mental health in 10 European Union (EU) countries.MethodLogistic regression was used to model the odds of any mood or any anxiety disorder as a function of age, gender, marital status, urbanicity and employment using a multigroup approach (n = 35500). This allowed for the testing of specific lifespan hypotheses across participating countries.ResultsNo simple geographical pattern exists with which to describe the relationship between 12-month prevalence of mood and anxiety disorders and age. Of the adults sampled, very few aged ⩾80 years met DSM-IV diagnostic criteria for these disorders. The associations between these disorders and key sociodemographic variables were relatively homogeneous across countries after adjusting for age.ConclusionsFurther research is required to confirm that there are indeed stages in the lifespan where the reported prevalence of mental disorders is low, such as among younger adults in the East and older adults in the West. This project illustrates the difficulties in conducting research among different age groups simultaneously.

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Barriers to participation in mental health research: are there specific gender, ethnicity and age related barriers?

Cited by 198 publications

References 74 publications

Barriers to participation in mental health research: Findings from the Genetics and Psychosis (GAP) Study

Barriers to participation in mental health research: Findings from the Genetics and Psychosis (GAP) Study

What proportion of patients with psychosis is willing to take part in research? A mental health electronic case register analysis

Mood and anxiety disorders across the adult lifespan: a European perspective

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