Evaluating the impact of patient and carer involvement in suicide and self-harm research: A mixed-methods, longitudinal study protocol.
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ABSTRACT: Background
Patient and public involvement (PPI) is becoming more commonplace in mental health research. There are strong moral and ethical arguments for good quality PPI. Few studies have documented and evaluated PPI in self-harm and suicide research. Inconsistent reporting of PPI makes it difficult to discern practices that deliver quality, effective and meaningful involvement. It is important to understand and address emotional support needs of PPI members contributing to sensitive topics such as suicide and self-harm. Therefore, this study will examine the effect of PPI on self-harm and suicide research and explore patients', carers' and researchers' experiences and views in relation to the quality of PPI practice and provision of appropriate support for PPI members.Methods
This protocol outlines the longitudinal, mixed methodological approach that will be taken. Qualitative and quantitative data will be collected via baseline and repeated questionnaires, document review and semi-structured interviews. Both PPI members and researchers will be invited to participate in this study. The two-year data collection period will enable evaluation of PPI throughout the entire research cycle. An integrated approach will be taken to data analysis, using inductive thematic analysis and descriptive and repeated measures analyses, to address specified study aims.Dissemination
Findings from this study will inform practical guidance to support self-harm and suicide researchers in effectively involving people with experiential knowledge in their research. Analyses will offer insight into the effect of PPI throughout the research process and assess changes in PPI members' and researchers' experiences of involvement across a two-year period.
SUBMITTER: Littlewood DL
PROVIDER: S-EPMC8137496 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Healthcare workers want to listen more to patients and their carers in all sorts of areas of healthcare. This can include choosing topics for medical research. We looked at how patients and carers have helped to choose topics for research about type I diabetes. We aimed to find out if, and why, researchers often rejected their choices. We looked at a project which brought together patients, carers and healthcare workers to choose topics for research about type 1 diabetes. The group first asked patients, carers and healthcare workers to suggest ideas for research questions. But the group had to follow rules about what counted as a good research question. Some people's ideas did not count as good research questions, and they were rejected at the start. We looked at who were most likely to have their ideas rejected at the start. We found that patients and carers were most likely to have a suggestion rejected. Then we looked at the rejected questions in detail. They were mostly about curing diabetes, preventing diabetes and understanding how diabetes works. There were also some questions about access to medicines and the quality of care. Researchers should ask patients and carers for help deciding what counts as a good research question from the start of projects like these. We should also think about what might be getting in the way of patients and carers making more of a difference in research.Background Patients and carers are increasingly involved in deciding on topics for medical research. However, so far, it has been difficult to gain an accurate picture of the impact of such involvement because of poor reporting and evaluation in published studies to date. This study aimed to explore how a partnership of patients, carers, healthcare professionals and organisations identified questions for future research and why patients and carers had a limited impact on this process. Methods In the first stage of the partnership process, relevant service users and providers (including patients, carers, healthcare professionals and voluntary organisations) were invited to submit suggested research questions about the treatment of type 1 diabetes, via a national online and paper survey. The partnership followed formal protocols that defined a researchable question. This meant that many respondents' suggested research questions were rejected at the start of the process. We analysed survey submissions to find out which groups of respondents were most likely to have their suggestions rejected and what these suggestions were about. Results Five hundred eighty-three respondents submitted 1143 suggested research questions, of which 249 (21.8 %) were rejected at the first stage. Respondents with lived experience of this long-term condition (patients and carers) were more likely than those without lived experience to submit a research question that would be rejected (35.6 vs. 16.5 %; p?<?0.0005). Among the rejected questions submitted by patients and carers, there were several key themes: questions about cure, cause and prevention, understanding the disease, healthcare policy and economics. Conclusions In this case study, early decisions about what constituted a researchable question restricted patients' and carers' contributions to priority setting. When discussions about a project's remit take place before service users are involved, researchers risk distorting the potential impact of involvement. Impact assessments should consider not only the differences patients and carers make to research but also the differences they could have made in the absence of systemic barriers. We recommend that initiatives aimed at involving patients and carers in identifying research questions involve them as early as possible, including in decisions about how and why suggested research questions are selected or rejected.
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Project description:Suicide and self-harm clusters exist in various forms, including point, mass, and echo clusters. The early identification of clusters is important to mitigate contagion and allocate timely interventions. A systematic review was conducted to synthesize existing evidence of quantitative analyses of suicide and self-harm clusters. Electronic databases including Medline, Embase, Web of Science, and Scopus were searched from date of inception to December 2020 for studies that statistically analyzed the presence of suicide or self-harm clusters. Extracted data were narratively synthesized due to heterogeneity among the statistical methods applied. Of 7268 identified studies, 79 were eligible for narrative synthesis. Most studies quantitatively verified the presence of suicide and self-harm clusters based on the scale of the data and type of cluster. A Poisson-based scan statistical model was found to be effective in accurately detecting point and echo clusters. Mass clusters are typically detected by a time-series regression model, although limitations exist. Recently, the statistical analysis of suicide and self-harm clusters has progressed due to advances in quantitative methods and geospatial analytical techniques, most notably spatial scanning software. The application of such techniques to real-time surveillance data could effectively detect emerging clusters and provide timely intervention.
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| S-EPMC7451369 | biostudies-literature
Project description:AimsSuicide accounts for 2.2% of all years of life lost worldwide. We aimed to establish whether infectious epidemics are associated with any changes in the incidence of suicide or the period prevalence of self-harm, or thoughts of suicide or self-harm, with a secondary objective of establishing the frequency of these outcomes.MethodsIn this systematic review and meta-analysis, MEDLINE, Embase, PsycINFO and AMED were searched from inception to 9 September 2020. Studies of infectious epidemics reporting outcomes of (a) death by suicide, (b) self-harm or (c) thoughts of suicide or self-harm were identified. A random-effects model meta-analysis for the period prevalence of thoughts of suicide or self-harm was conducted.ResultsIn total, 1354 studies were screened with 57 meeting eligibility criteria, of which 7 described death by suicide, 9 by self-harm, and 45 thoughts of suicide or self-harm. The observation period ranged from 1910 to 2020 and included epidemics of Spanish Flu, severe acute respiratory syndrome, human monkeypox, Ebola virus disease and coronavirus disease 2019 (COVID-19). Regarding death by suicide, data with a clear longitudinal comparison group were available for only two epidemics: SARS in Hong Kong, finding an increase in suicides among the elderly, and COVID-19 in Japan, finding no change in suicides among children and adolescents. In terms of self-harm, five studies examined emergency department attendances in epidemic and non-epidemic periods, of which four found no difference and one showed a reduction during the epidemic. In studies of thoughts of suicide or self-harm, one large survey showed a substantial increase in period prevalence compared to non-epidemic periods, but smaller studies showed no difference. As a secondary objective, a meta-analysis of thoughts of suicide and self-harm found that the pooled prevalence was 8.0% overall (95% confidence interval (CI) 5.2-12.0%; 14 820 of 99 238 cases in 24 studies) over a time period of between seven days and six months. The quality assessment found 42 studies were of high quality, nine of moderate quality and six of high quality.ConclusionsThere is little robust evidence on the association of infectious epidemics with suicide, self-harm and thoughts of suicide or self-harm. There was an increase in suicides among the elderly in Hong Kong during SARS and no change in suicides among young people in Japan during COVID-19, but it is unclear how far these findings may be generalised. The development of up-to-date self-harm and suicide statistics to monitor the effect of the current pandemic is an urgent priority.
| S-EPMC7610720 | biostudies-literature
Project description:ObjectiveTo investigate whether deliberate self harm is associated with contemporary Goth youth subculture.DesignLongitudinal cohort study.SettingSchool and community based study of young people living in the Central Clydeside Conurbation, Scotland.Participants1258 people aged 19, surveyed in 2002-4 and followed-up since age 11 (1994).Main outcome measuresLifetime prevalence of self harm and attempted suicide and their association with Goth youth subculture, before and after adjusting for confounders.ResultsIdentification as belonging to the Goth subculture was strongly associated with lifetime self harm and attempted suicide, with a prevalence of 53% and 47%, respectively among the most highly identified group, and evidence for a dose-response relation. Adjusting for potential confounders did not significantly attenuate this association. Analysis of other youth subcultures showed that this effect was primarily associated with Goth subculture.ConclusionsIdentification as belonging to the Goth subculture was the best predictor of self harm and attempted suicide. Although based on small numbers, additional longitudinal analysis suggests both selection and modelling mechanisms are involved, selection mechanisms possibly being more likely.
| S-EPMC1458563 | biostudies-literature
Project description:Common infectious agents, such as Toxoplasma gondii (T. gondii) and several human herpes viruses, have been linked to increased risk of self-harm. The aim of this study was to investigate the associations between self-harm and seropositivity to T. gondii, Epstein-Barr virus (EBV), Herpes Simplex virus Type 1 (HSV-1), and Cytomegalovirus (CMV). IgM and IgG antibodies to these infections were measured in the Health 2000 project nationally representative of the whole Finnish adult population, and 6250 participants, age 30 and over, were followed for 15 years via registers. In addition, lifetime suicidal ideation and suicide attempts based on medical records and interview were assessed within a subsample of 694 participants screened to a substudy for possible psychotic symptoms or as controls. Among the 6250 participants, 14 individuals died of suicide and an additional 4 individuals had a diagnosis of intentional self-harm during follow-up. Serological evidence of lifetime or acute infections was not found to be associated with these suicidal outcomes. However, in the subsample, those seropositive for CMV had fewer suicide attempts compared to those seronegative, adjusting for gender, age, educational level, childhood family size, regional residence, CRP, and screen status (OR for multiple attempts = 0.40, 95% confidence interval 0.20‒0.83, p = 0.014). To conclude, common infections were not associated with risk of death by suicide or with self-harm diagnoses at a 15-year follow-up in the general population sample. Our finding of an increased number of suicide attempts among persons seronegative for CMV calls for further research.
| S-EPMC7474710 | biostudies-literature
Project description:BackgroundChild Health research is reported to be at worryingly low level by the Royal College of Paediatrics and Child Health. Recent survey showed that 54.5% of paediatric consultants in the United Kingdom do not do any research at all. We conducted a mixed methods study to understand barriers and facilitators for research involvement among paediatric trainees who are going to fill these consultant posts in the future.MethodsA questionnaire based on a validated index for research and development was completed by 136 paediatric trainees within a region in the North of England (Yorkshire and Humber). Twelve semi-structured interviews were conducted with stratified purposive sampling. Descriptive statistics and Chi-Square test for independence were used for quantitative analysis. Thematic content analysis was done for interviews based on analysis method framework.Results136 out of 396 trainees responded to the survey. There was a significant relationship between confidence in using research in practice and ability to understand research terminology. This was not related to research experience or training. Males were significantly more likely to have presented a research paper, know how research influences practice and have more confidence in using research in practice than females. There was no significant relationship between gender and research training or highest qualification. Time constraints and lack of academic culture were the most frequently mentioned barriers in the survey. Over-arching themes identified from the interviews were related to lack of academic culture, opportunities provided in current training scheme and constraints related to time availability along with workforce management.ConclusionPaediatric research requires a supportive academic culture with more flexibility in training scheme and immediate attention to a pressing staffing crisis.
| S-EPMC6044020 | biostudies-literature
Project description:BackgroundDeliberate self-harm (DSH) along with old age, physical disability, and low socioeconomic status are well-known contributors to suicide-related deaths. In recent years, South Korea has the highest suicide death rate among all Organization for Economic Co-operation and Development countries. Owing to the difficulty of accessing data of individuals with DSH behavior who died by suicide, the factors associated with suicide death in these high-risk individuals have not been sufficiently explored. There have been conflicting findings with regard to the relationship between previous psychiatric visits and suicidal death.ObjectiveWe aimed to address the following 3 questions: Are there considerable differences in demographics, socioeconomic status, and clinical features in individuals who received psychiatric diagnosis (either before DSH or after DSH event) and those who did not? Does receiving a psychiatric diagnosis from the Department of Psychiatry, as opposed to other departments, affect survival? and Which factors related to DSH contribute to deaths by suicide?MethodsWe used the Korean National Health Insurance Service Database to design a cohort of 5640 individuals (3067/5640, 54.38% women) who visited the hospital for DSH (International Classification of Diseases codes X60-X84) between 2002 and 2020. We analyzed whether there were significant differences among subgroups of individuals with DSH behavior based on psychiatric diagnosis status (whether they had received a psychiatric diagnosis, either before or after the DSH event) and the department from which they had received the psychiatric diagnosis. Another main outcome of the study was death by suicide. Cox regression models yielded hazard ratios (HRs) for suicide risk. Patterns were plotted using Kaplan-Meier survival curves.ResultsThere were significant differences in all factors including demographic, health-related, socioeconomic, and survival variables among the groups that were classified according to psychiatric diagnosis status (P<.001). The group that did not receive a psychiatric diagnosis had the lowest survival rate (867/1064, 81.48%). Analysis drawn using different departments from where the individual had received a psychiatric diagnosis showed statistically significant differences in all features of interest (P<.001). The group that had received psychiatric diagnoses from the Department of Psychiatry had the highest survival rate (888/951, 93.4%). These findings were confirmed using the Kaplan-Meier survival curves (P<.001). The severity of DSH (HR 4.31, 95% CI 3.55-5.26) was the most significant contributor to suicide death, followed by psychiatric diagnosis status (HR 1.84, 95% CI 1.47-2.30).ConclusionsReceiving psychiatric assessment from a health care professional, especially a psychiatrist, reduces suicide death in individuals who had deliberately harmed themselves before. The key characteristics of individuals with DSH behavior who die by suicide are male sex, middle age, comorbid physical disabilities, and higher socioeconomic status.
| S-EPMC10134021 | biostudies-literature
Project description:BackgroundLongitudinal evidence for sociodemographic and clinic factors deviating risk for suicide and repetition following SH (self-harm) varied greatly.MethodsA comprehensive search of PubMed, Web of Science, EMBASE, and PsycINFO was conducted from January 1st, 2010 to April 5th, 2022. Longitudinal studies focusing on examining associating factors for suicide and repetition following SH were included. PROSPERO registration CRD42021248695.FindingsThe present meta-analysis synthesized data from 62 studies published from Jan. 1st, 2010. The associating factors of SH repetition included female gender (RR, 95%CI: 1.11, 1.04-1.18, I2=82.8%), the elderly (compared with adolescents and young adults, RR, 95%CI: 0.67, 0.52-0.87, I2=86.3%), multiple episodes of SH (RR, 95%CI: 1.97, 1.51-2.57, I2=94.3%), diagnosis (RR, 95%CI: 1.60, 1.27-2.02, I2=92.7%) and treatment (RR, 95%CI: 1.59, 1.40-1.80, I2=93.3%) of psychiatric disorder. Male gender (RR, 95%CI: 2.03, 1.80-2.28, I2=83.8%), middle-aged adults (compared with adolescents and young adults, RR, 95%CI: 2.40, 1.87-3.08, I2=74.4%), the elderly (compared with adolescents and young adults, RR, 95%CI: 4.38, 2.98-6.44, I2=76.8%), physical illness (RR, 95%CI: 1.95, 1.56-2.43, I2=0), multiple episodes of SH (RR, 95%CI: 2.02, 1.58-2.58, I2=87.4%), diagnosis (RR, 95%CI: 2.13, 1.67-2.71, I2=90.9%) and treatment (RR, 95%CI: 1.36, 1.16-1.58, I2=58.6%) of psychiatric disorder were associated with increased risk of suicide following SH.InterpretationDue to the substantial heterogeneity for clinic factors of suicide and repetition following SH, these results need to be interpreted with caution. Clinics should pay more attention to the cases with SH repetition, especially with poor physical and psychiatric conditions.FundingThis work was supported by National Natural Science Foundation of China (NSFC) [No: 82103954; 30972527; 81573233].
| S-EPMC9126760 | biostudies-literature
Project description:BackgroundResearch into the association between childhood sexual abuse (CSA) and self-harm repetition is limited.AimsWe aimed to examine the association between self-harm repetition, mental health conditions, suicidal intent and CSA experiences among people who frequently self-harm.MethodA mixed-methods study was conducted including consecutive patients aged ≥18 years, with five or more self-harm presentations, in three Irish hospitals. Information was extracted from psychiatric records and patients were invited to participate in a semi-structured interview. Data was collected and analysed with a mixed-methods, convergent parallel design. In tandem, the association between CSA and self-harm repetition, suicidal intent and mental health conditions was examined with logistic regression models and independent sample t-test, with psychiatric records data. Thematic analysis was conducted with interview data, to explore CSA experiences and self-harm repetition.ResultsBetween March 2016 and July 2019, information was obtained on 188 consecutive participants, with 36 participants completing an interview. CSA was recorded in 42% of the total sample and 72.2% of those interviewed. CSA was positively associated with self-harm repetition (odds ratio 6.26, 95% CI 3.94-9.94, P = 0.00). Three themes emerged when exploring participants' CSA experiences: CSA as a precipitating factor for self-harm, secrecy of CSA accentuating shame, and loss experiences linked to CSA and self-harm.ConclusionsCSA was frequently reported among people who frequently self-harm, and associated with self-harm repetition. Identification of patients at risk of repetition is key for suicide prevention. This is an at-risk group with particular characteristics that must be considered; comprehensive patient histories can help inform and tailor treatment pathways.
| S-EPMC8281309 | biostudies-literature