Peer researchers' experiences of a co-produced research project on supported decision-making.

BACKGROUND: Making decisions about your own life is a key aspect of independence, freedom, human rights and social justice. There are disabled people who, without support, would be assessed as incapable of making certain decisions but with the appropriate support are capable of making those decisions and so to not provide that support infringes their rights, undermines their autonomy and reinforces their exclusion from society. However, there is limited research evidence available about disabled people's experiences of the range of approaches provided to support decision-making. This article will explore the experiences of four peer researchers who co-produced a research project on how people have, or have not been, supported to make their own decisions. Two of the peer researchers have experience of mental health problems and two are people with an intellectual disability. The article refers to peer research because its subject matter is the relevant lived experience of people. Peer research is therefore an approach within the broader areas of participatory research and co-production. METHODS: The peer researchers interviewed 21 people with mental health problems and 20 people with an intellectual disability to gain an in-depth understanding of their experiences and preferences for how decision-making should be supported. Peer researcher experiences at each stage of the study from design to analysis were explored using data collected from the peer researchers via blogs written at early stages of the study, discussions at team meetings as the fieldwork progressed and at a final workshop at the end of the study which gave the peer researchers the opportunity to focus on their overall reflections of being a peer researcher. The article also discusses motivations to undertake the peer research role, the process of co-production and the challenges negotiated during the study. RESULTS: The peer researchers reported a number of positive effects of being involved in the research project which included improvements in skills and self-confidence. CONCLUSION: The peer researchers' involvement challenged assumptions about the inability of people with an intellectual disability and/or mental health problems to participate proactively in a research project whilst also highlighting the importance of training for all team members.

Making your own decisions is important. There are disabled people who need support to make some decisions. Supporting disabled people to make decisions is needed so that they are not excluded from society. However, the evidence is limited on disabled people's experiences of how best to support decision-making. This article will explore the experiences of four researchers with mental health problems or an intellectual disability who worked with other researchers to conduct a project on how people have, or have not been, supported to make their own decisions. These researchers are called peer researchers. The peer researchers interviewed 21 people with mental health problems and 20 people with an intellectual disability. These interviews were conducted in order to gain a detailed understanding of the experiences and preferences for how decision-making should be supported. Blogs written by the peer researchers, discussions in team meetings and a workshop at the end of the study enabled the peer researchers to reflect on their experiences. The peer researchers reported a number of positive effects of being involved in the research project which included improvements in skills and self-confidence. The peer researchers' involvement challenged assumptions about the inability of people with an intellectual disability and/or mental health problems to participate in a research project whilst also highlighting the importance of training for all team members.

Key components of supporting and assessing decision making ability.

People's ability to make decisions may be impaired for a wide range of reasons, including by mental health problems and learning disabilities. Individual autonomy, the ability to make decisions about our own lives, is a fundamental tenet of democratic societies. This has been reinforced by laws governing substitute and supported decision making and most significantly by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Article 12 of the UNCRPD requires everyone to have equal recognition before the law and, to achieve this, the necessary support and safeguards must be available. There has been considerable debate about the important theoretical and philosophical issues involved and growing research about the practice complexities of supporting and assessing decision making ability or mental capacity. This article aims to present some of the key components of the support and assessment process to inform further service development and training in this area. The key components were identified as part of a qualitative, participatory research project which explored the decision making experiences of people with mental health problems and/or learning disabilities. The conventional approach to the assessment of capacity is to consider four main components, whether the person is able to: understand, retain, use and weigh, and communicate the information needed to make the decision at that time. The findings from this research study suggest that people generally don't usually talk about their experiences of decision making in terms of these four components and approaches to supporting people to make decisions don't necessarily break the support down to explicitly address the assessment process. However, considering support for all aspects of the functional test may be helpful to ensure it is as comprehensive as possible. The challenges involved in providing effective support and assessing decision making ability are discussed and the article concludes with some of the implications for training, service development and practice.

Service users' experiences and views of support for decision-making.

This article presents the findings from a qualitative, participatory research project which explored how people with intellectual disabilities and/or mental health problems have, or have not been, supported to make their own decisions. The aim of the research is to help inform how supported decision-making, as required by Article 12 of the UN Convention on the Rights of Persons with Disabilities, can be effectively operationalised. The project provides an overview of experiences of support as well as identifying which supports are valued. It was conducted between July 2017 and July 2018 and was a partnership between disabled people, service providers and a University. It involved peer researchers interviewing 41 people with mental health problems and/or intellectual disabilities, in community settings, about their experiences and views of support. The key findings include that decision-making is a central aspect of people's lives. Participants discussed the positive role which decision-making can have but also how it felt when they were not supported to make their own decisions. Participants said that there were three main things that make decision-making harder: the type of decision; the role of other people; and what the outcome might be. Time was consistently identified as a very important factor. In terms of support, people said that they would like: practical support including more accessible information; emotional support including someone to talk to; and sometimes the options to choose from. There was very little mention of existing, more formal processes of support such as advance decisions or care planning. The peer researcher aspect of the project was valued by participants. The main implications of the research are for how support for decision-making should be provided including the need for an individualised approach as the support needed varies across decisions, time and people.

The Belfast Youth Development Study (BYDS): A prospective cohort study of the initiation, persistence and desistance of substance use from adolescence to adulthood in Northern Ireland.

BACKGROUND: Substance misuse persists as a major public health issue worldwide with significant costs for society. The development of interventions requires methodologically sound studies to explore substance misuse causes and consequences. This Cohort description paper outlines the design of the Belfast Youth Development (BYDS), one of the largest cohort studies of its kind in the UK. The study was established to address the need for a long-term prospective cohort study to investigate the initiation, persistence and desistance of substance use, alongside life course processes in adolescence and adulthood. The paper provides an overview of BYDS as a longitudinal data source for investigating substance misuse and outlines the study measures, sample retention and characteristics. We also outline how the BYDS data have been used to date and highlight areas ripe for future work by interested researchers. METHODS: The study began in 2000/1 when participants (n = 3,834) were pupils in their first year of post-primary education (age 10/11 years, school year 8) from over 40 schools in Northern Ireland. Children were followed during the school years: Year 9 (in 2002; aged 12; n = 4,343), Year 10 (in 2003; aged 13; n = 4,522), Year 11 (in 2004; aged 14; n = 3,965) and Year 12 (in 2005; aged 15; n = 3,830) and on two more occasions: 2006/07 (aged 16/17; n = 2,335) and 2010/11 (aged 20/21; n = 2,087). Data were collected on substance use, family, schools, neighbourhoods, offending behaviour and mental health. The most novel aspect of the study was the collection of detailed social network data via friendship nominations allowing the investigation of the spread of substance use via friendship networks. In 2004 (school year 11; respondents aged 14), a sub-sample of participants' parents (n = 1,097) and siblings (n = 211) also completed measures on substance use and family dynamics. RESULTS: The most recent wave (in 2010/2011; respondents aged 20/21 years) indicated lifetime use of alcohol, tobacco and cannabis among the cohort was 94, 70 and 45 per cent, respectively. The paper charts the development of drug use behaviour and some of the key results to date are presented. We have also identified a number of key areas ripe for analysis by interested researchers including sexual health and education. CONCLUSIONS: We have established a cohort with detailed data from adolescence to young adulthood, supplemented with parent and sibling reports and peer network data. The dataset, allowing for investigation of trajectories of adolescent substance use, associated factors and subsequent long-term outcomes, constitutes an important resource for longitudinal substance misuse research. A planned further wave as the cohort enter their late twenties and potential to link to administrative data sources, will further enrich the datasets.

A comparison of earlier and enhanced rehabilitation of mechanically ventilated patients in critical care compared to standard care (REHAB): study protocol for a single-site randomised controlled feasibility trial.

BACKGROUND: Mortality from critical illness is improving, but survivors suffer from prolonged weakness and psychological and cognitive impairments. Maximising the recovery after critical illness has been highlighted as a research priority, especially in relation to an ageing population who present with higher rates of pre-morbid disability. Small studies have shown that starting rehabilitation early within the intensive care unit (ICU) improves short-term outcomes. Systematic reviews have highlighted the need for robust multicentre randomised controlled trials with longer term follow-up. METHODS: The study design is a randomised controlled study to explore the feasibility of providing earlier and enhanced rehabilitation to mechanically ventilated patients at high risk of ICU-acquired weakness within the ICU. The rehabilitation intervention involves a structured programme, with progression along a functionally based mobility protocol according to set safety criteria. The overall aim of the intervention is to commence mobilisation at an earlier time point in the patient's illness and increase mobility of the patient through their recovery trajectory. Participants will be randomised to enhanced rehabilitation or standard care, with the aim of recruiting at least 100 patients over 16 months. The trial design will assess recruitment and consent rates from eligible patients, compliance with the intervention, and assess a range of possible outcome measures for use in a definitive trial, with follow-up continuing for 12 months post hospital discharge. DISCUSSION: This study will evaluate the feasibility of providing an earlier and enhanced rehabilitation intervention to mechanically ventilated patients in critical care. We will identify strengths and weaknesses of the proposed protocol and the utility and characteristics of the outcome measures. The results from this study will inform the design of a phase III multicentre trial of enhanced rehabilitation for critically ill adults. TRIAL REGISTRATION: ISRCTN90103222, 13/08/2015; retrospectively registered.

Prehospital rapid sequence induction following trauma in the era of regional networks for major trauma.

OBJECTIVE: Rapid sequence induction (RSI) provides prompt airway control during emergency evacuation of trauma patients. Physicians may be tasked to travel with paramedic ambulance crews to the scene of injury when RSI is more likely to be required. This study investigates whether there are any differences in the practice of prehospital RSI during emergency retrievals for trauma since the establishment of the regional Major Trauma Network (MTN) in March 2012. METHODS: A retrospective observational study examined prehospital records for all trauma patients from September 2010 to January 2015 at a Major Trauma Centre in Birmingham, UK. Prehospital physician availability increased from 12 to 24 h after March 2012, and tasking became centralized. Data included demographics, mechanism of injury, crew personnel, and details of RSI. The periods before and after the establishment of the regional MTN were compared. RESULTS: There were 5244 patients: 1432 (27.3%) before and 3812 (72.7%) after March 2012. Of the patients, 67.2% were male. The most common injuries were road traffic collisions (45.0%). Physicians were more likely to be present after (2345 missions, 61.5%) than before (529 missions, 36.9%) March 2012 (P<0.01). RSI was performed 434 (8.3%) times and was more likely during the latter than the former period [359 (9.4%) vs. 75 (5.2%), P<0.01]. Successful tracheal intubation was achieved in 99% of occasions. CONCLUSION: The establishment of regional MTNs enables centrally tasked, 24-h physician availability for emergency trauma patients. There has been an increase in physician presence on emergency missions and increased frequency of RSI for at-risk trauma patients at times when there may previously have been an unmet requirement.

Adolescent Substance Use in the Context of the Family: A Qualitative Study of Young People's Views on Parent-Child Attachments, Parenting Style and Parental Substance Use.

BACKGROUND: Adolescent substance use can place youth at risk of a range of poor outcomes. Few studies have attempted to explore in-depth young people's perceptions of how familial processes and dynamics influence adolescent substance use. OBJECTIVES: This article aimed to explore risk and protective factors for youth substance use within the context of the family with a view to informing family based interventions. METHODS: Nine focus groups supplemented with participatory techniques were facilitated with a purposive sample of sixty-two young people (age 13-17 years) from post-primary schools across Northern Ireland. The data were transcribed verbatim and analyzed using thematic analysis. RESULTS: Three themes emerged from the data: (1) parent-child attachments, (2) parenting style, and (3) parental and sibling substance misuse. Parent-child attachment was identified as an important factor in protecting adolescents from substance use in addition to effective parenting particularly an authoritative style supplemented with parental monitoring and strong parent-child communication to encourage child disclosure. Family substance use was considered to impact on children's substance use if exposed at an early age and the harms associated with parental substance misuse were discussed in detail. Both parent and child gender differences were cross-cutting themes. CONCLUSION: Parenting programmes (tailored to mothers and fathers) may benefit young people via components on authoritative styles, parental monitoring, communication, nurturing attachments and parent-child conflict. Youth living with more complex issues, e.g., parental substance misuse, may benefit from programmes delivered beyond the family environment, e.g., school based settings.

Assessing elements of a family approach to reduce adolescent drinking frequency: parent-adolescent relationship, knowledge management and keeping secrets.

AIMS: To estimate (1) the associations between parent-adolescent relationship, parental knowledge and subsequent adolescent drinking frequency and (2) the influence of alcohol use on parental knowledge. DESIGN: Path analysis of school based cohort study with annual surveys. SETTING: Post-primary schools from urban and intermediate/rural areas in Northern Ireland. PARTICIPANTS: A total of 4937 post-primary school students aged approximately 11 years in 2000 followed until approximately age 16 years in 2005. MEASUREMENTS: Pupil-reported measures of: frequency of alcohol use; parent-child relationship quality; subdimensions of parental monitoring: parental control, parental solicitation, child disclosure and child secrecy. FINDINGS: Higher levels of parental control [ordinal logistic odds ratio (OR) = 0.86, 95% confidence interval (CI) = 0.78, 0.95] and lower levels of child secrecy (OR = 0.83, 95% CI = 0.75, 0.92) were associated subsequently with less frequent alcohol use. Parental solicitation and parent-child relationship quality were not associated with drinking frequency. Weekly alcohol drinking was associated with higher subsequent secrecy (beta -0.42, 95% CI = -0.53, -0.32) and lower parental control (beta -0.15, 95% CI = -0.26, -0.04). Secrecy was more strongly predictive of alcohol use at younger compared with older ages (P = 0.02), and alcohol use was associated less strongly with parental control among families with poorer relationships (P = 0.04). CONCLUSIONS: Adolescent alcohol use appears to increase as parental control decreases and child secrecy increases. Greater parental control is associated with less frequent adolescent drinking subsequently, while parent-child attachment and parental solicitation have little influence on alcohol use.

Adolescent ecstasy use and depression: cause and effect, or two outcomes of home environment?

BACKGROUND: This study assessed the association between adolescent ecstasy use and depressive symptoms in adolescence. METHODS: The Belfast Youth Development Study surveyed a cohort annually from age 11 to 16 years. Gender, Strengths and Difficulties Questionnaire emotional subscale, living arrangements, parental affluence, parent and peer attachment, tobacco, alcohol, cannabis and ecstasy use were investigated as predictors of Short Mood and Feelings Questionnaire (SMFQ) outcome. RESULTS: Of 5371 respondents, 301 (5.6%) had an SMFQ > 15, and 1620 (30.2) had missing data for SMFQ. Around 8% of the cohort had used ecstasy by the end of follow-up. Of the non-drug users, ∼2% showed symptoms of depression, compared with 6% of those who had used alcohol, 6% of cannabis users, 6% of ecstasy users and 7% of frequent ecstasy users. Without adjustment, ecstasy users showed around a 4-fold increased odds of depressive symptoms compared with non-drug users [odds ratio (OR) = 0.26; 95% confidence interval (CI) = 0.10, 0.68]. Further adjustment for living arrangements, peer and parental attachment attenuated the association to under a 3-fold increase (OR = 0.37; 95% CI = 0.15, 0.94). There were no differences by frequency of use. CONCLUSIONS: Ecstasy use during adolescence may be associated with poorer mental health; however, this association can be explained by the confounding social influence of family dynamics. These findings could be used to aid effective evidence-based drug policies, which concentrate criminal justice and public health resources on reducing harm.