Using co-design to develop the Adolescent Health Literacy Questionnaire for adolescents in Ireland.

Health literacy measurement studies are important for the success of health promotion efforts targeting adolescents. However, the majority of health literacy measurement tools were originally developed for adult populations and may not be reflective of health literacy in the context of adolescence. The present study sought to co-design a health literacy questionnaire and vignettes for adolescents in Ireland aged 12-18 years. This article describes the qualitative phase of the study. In 2019-2021, eight adolescents from the Irish Heart Foundation's Youth Advisory Panel participated in two concept mapping workshops during which they defined healthy living. Results of the thematic analysis indicated that adolescents defined 'healthy living' as a life that was balanced, prioritizing mental health and sleep. According to their definition, healthy living was comprised of six main constructs, namely, knowledge; sources of quality health information; facilitators and barriers; influence of others; self-efficacy, self-management and resilience; and citizenship and communication. These constructs were used to develop vignettes and items for the Adolescent Health Literacy Questionnaire (AHLQ). These were tested on a sample of 80 adolescents to check whether the respondents understood the items and vignettes as intended. Results of the nine cognitive interviews indicated that the adolescents understood the content of the 10 vignettes and 41 items. While the vignettes and AHLQ were developed with Irish adolescents, the approaches taken can be generalized to adolescents living in other countries. This will allow for the development of tailored and relevant solutions for health literacy development and health promotion for this sub-population.

An evaluation of the skills group component of DBT-A for parent/guardians: a mixed methods study.

OBJECTIVES: Previous research indicates that dialectical behaviour therapy for adolescents (DBT-A) is effective in treating emotionally dysregulated adolescents with self-harm and/or suicidal ideation. As part of the DBT-A programme, parents attend the weekly skills group with their child. However, few studies have evaluated parental outcomes in DBT-A. This multi-site study aims to explore the outcomes and experiences of parents who participated in a 16-week DBT-A programme in Ireland. METHODS: This study was conducted in community-based child and adolescent mental health services (CAMHS) in the national public health system in Ireland. Participants were parent/guardians of adolescents attending a DBT-A programme in their local CAMHS. Participants attended the group skills component of the DBT-A programme. This study utilised a mixed methods approach where both quantitative and qualitative data were collected from participants. Self-report measures of burden, grief and parental stress were completed at pre-intervention, post-intervention and 16-week follow-up. Qualitative written feedback was obtained at post-intervention. The data were analysed using multi-level linear mixed-effects models and content analysis. RESULTS: One hundred participants (76% female) took part in this study. Significant decreases were reported for objective burden, subjective burden, grief and parental stress from pre- to post-intervention (p < 0.01). Participants reported that the skills component of DBT-A was useful in meeting their own needs and the needs of their child. DISCUSSION: DBT-A shows promise for parents as well as their adolescent child. Future studies should evaluate changes to family relationships following completion of the programme and also include controlled comparison groups.

Using Co-Design to Develop a Health Literacy Intervention with Socially Disadvantaged Adolescents.

The aim of this study was to initiate a co-design process with adolescents to inform the development of a targeted health literacy intervention for implementation in designated socioeconomically disadvantaged post-primary schools in Ireland. Purposely developed vignettes were explored in a series of eight workshops that were conducted separately with staff (n = 26) and students (n = 33) across four schools. Data was analysed using content analysis. A number of key health topics were identified as important and influential for the participants in this context: food choices, mental health and wellbeing, physical activity and sedentary behaviour, sleep and substance misuse. Participants also suggested many health-related capacity building actions. Participants recognized that many of these health topics and capacity building actions were intertwined and also highlighted that some of these actions may be more feasible and/or impactful than others. For example, students and school staff both indicated the need to use relevant, applied and engaging approaches to improve health literacy and subsequent health behaviour. The co-design process adopted empowered stakeholders to actively engage in the design and development of future intervention strategies, which may increase the likelihood of acceptability, effectiveness and sustainability of the resulting intervention.

Understanding disadvantaged adolescents' perception of health literacy through a systematic development of peer vignettes.

BACKGROUND: Adolescence represents a crucial phase of life where health behaviours, attitudes and social determinants can have lasting impacts on health quality across the life course. Unhealthy behaviour in young people is generally more common in low socioeconomic groups. Nevertheless, all adolescents should have a fair opportunity to attain their full health potential. Health literacy is positioned as a potential mediating factor to improve health, but research regarding health literacy in adolescents and socially disadvantaged populations is limited. As part of Phase one of the Ophelia (OPtimising HEalth LIterAcy) framework, The purpose of this study was to explore the perceptions of socially disadvantaged Irish adolescents in relation to health literacy and related behaviours, and utilise this data to develop relevant vignettes. METHODS: A convergent mixed method design was used to co-create the vignettes. Questionnaires were completed by 962 adolescents (males n = 553, females n = 409, Mean age = 13.97 ± 0.96 years) from five participating disadvantaged schools in Leinster, Ireland. Focus groups were also conducted in each school (n = 31). Results were synthesised using cluster and thematic analysis, to develop nine vignettes that represented typical male and female subgroups across the schools with varying health literacy profiles. These vignettes were then validated through triangular consensus with students, teachers, and researchers. DISCUSSION: The co-creation process was a participatory methodology which promoted the engagement and autonomy of the young people involved in the project. The vignettes themselves provide an authentic and tangible description of the health issues and health literacy profiles of adolescents in this context. Application of these vignettes in workshops involving students and teachers, will enable meaningful engagement in the discussion of health literacy and health-related behaviours in Irish young people, and the potential co-designing of strategies to address health literacy in youth. CONCLUSION: As guided by the Ophelia framework, the use of authentic, interactive and participatory research methods, such as the co-creation of vignettes, is particularly important in groups that are underserved by traditional research methods. The approach used in this study could be adapted to other contexts to represent and understand stakeholders' perceptions of health, with a view to explore, and ultimately improve, health literacy.

Development and validity testing of the Adolescent Health Literacy Questionnaire (AHLQ): Protocol for a mixed methods study within the Irish school setting.

INTRODUCTION: Health literacy research has focused predominantly on the adult population, and much less is understood about this concept from an adolescent perspective. The tools currently available to measure adolescent health literacy have been adapted from adult versions. This limits their applicability to young people because of the developmental characteristics that impact on adolescents' behaviour, including impulse control and judgement skills. This protocol describes the intended development and validity testing of a questionnaire to measure health literacy in adolescents. METHODS AND ANALYSIS: This protocol describes this mixed methods study that has three phases: the first phase will involve grounded research with adolescents using qualitative group interviews, co-design and concept mapping workshops to understand what health and healthy behaviours mean to adolescents and to explore their health literacy needs and the potential domains for the questionnaire. The draft health literacy domains identified will be presented to the youth advisory panel, and the questionnaire will be altered based on their feedback. Cognitive pretesting of the questionnaire items will also be conducted. Phase 2 will involve piloting the questionnaire to a two-stage random sample of young people in five urban and rural schools in Ireland. Test-retest reliability will be conducted using Pearson correlation coefficient. Confirmatory factor analysis will also be conducted to analyse the psychometric properties of the questionnaire. Phase 3 will involve the questionnaire being rolled out to a nationally representative sample of adolescents (n=6052) in Ireland to assess their levels of health literacy. ETHICS AND DISSEMINATION: Ethical approval to conduct this study has been granted from the University College Dublin Human Research Ethics Committee - Sciences (LS-20-08). Informed assent from adolescents and informed consent from parents/guardians will be sought. The findings of this research will be disseminated at national and international conferences, as well as through publication in peer-reviewed journals.

Evaluating the national multisite implementation of dialectical behaviour therapy in a community setting: a mixed methods approach.

BACKGROUND: The implementation of evidence-based interventions for borderline personality disorder in community settings is important given that individuals with this diagnosis are often extensive users of both inpatient and outpatient mental health services. Although work in this area is limited, previous studies have identified facilitators and barriers to successful DBT implementation. This study seeks to expand on previous work by evaluating a coordinated implementation of DBT in community settings at a national level. The Consolidated Framework for Implementation Research (CFIR) (Damschroder et al., Implementation Sci. 4:50, 2009) provided structural guidance for this national level coordinated implementation. METHODS: A mixed methods approach was utilised to explore the national multisite implementation of DBT from the perspective of team leaders and therapists who participated in the coordinated training and subsequent implementation of DBT. Qualitative interviews with DBT team leaders (n = 8) explored their experiences of implementing DBT in their local service and was analysed using content analysis. Quantitative surveys from DBT therapists (n = 74) examined their experience of multiple aspects of the implementation process including orienting the system, and preparations and support for implementation. Frequencies of responses were calculated. Written qualitative feedback was analysed using content analysis. RESULTS: Five themes were identified from the interview data: team formation, implementation preparation, client selection, service level challenges and team leader role. Participants identified team size and support for the team leader as key points for consideration in DBT implementation. Key challenges encountered were the lack of system support to facilitate phone coaching and a lack of allocated time to focus on DBT. Implementation facilitators included having dedicated team members and support from management. CONCLUSIONS: The barriers and facilitators identified in this study are broadly similar to those reported in previous research. Barriers and facilitators were identified across several domains of the CFIR and are consistent with a recently published DBT implementation Framework (Toms et al., Borderline Personal Disord Emot Dysregul. 6: 2, 2019). Future research should pay particular attention to the domain of characteristics of individuals involved in DBT implementation. The results highlight the importance of a mandated service plan for the coordinated implementation of an evidence-based treatment in a public health service. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT03180541; Registered June 7th 2017 'retrospectively registered'.

Carers' Motivations for, and Experiences of, Participating in Suicide Research.

(1) Background: First-hand accounts of lived experience of suicide remain rare in the research literature. Increasing interest in the lived experience of suicide is resulting in more opportunities for people to participate in research based on their personal experience. How individuals choose to participate in research, and their experience of doing so, are important considerations in the ethical conduct of research. (2) Methods: To understand the experience of providing care for someone who has previously attempted suicide, a cross-sectional online community survey was conducted. This survey concluded with questions regarding motivation to participate and the experience of doing so. Of the 758 individuals who participated in the survey, 545 provided open-ended text responses to questions regarding motivation and 523 did so for questions regarding the experience of participating. It is these responses that are the focus of this paper. Data were analysed thematically. (3) Results: Motivations to participate were expressed as primarily altruistic in nature, with a future focus on improving the experience of the person who had attempted suicide alongside carers to ease distress. The experience of participating was difficult yet manageable, for all but a few participants. (4) Conclusions: With the increasing interest in first-hand accounts of suicide, how individuals experience participation in research is an important focus that requires further attention.

Dialectical behaviour therapy skills reconsidered: applying skills training to emotionally dysregulated individuals who do not engage in suicidal and self-harming behaviours.

BACKGROUND: Dialectical behaviour therapy (DBT) is an evidence-based intervention for borderline personality disorder (BPD) but is an intensive treatment with significant health service costs. Access to DBT can sometimes be restricted due to limited resources. Positive results have been reported for the use of DBT skills training (DBT-ST), one of the four modes of standard DBT, in the treatment of individuals with BPD who self-harm. This study evaluates DBT-ST for a subgroup of individuals attending community mental health services who may have a diagnosis of BPD (or emerging BPD traits) but who are not actively self-harming. METHODS: Participants in this study were 100 adults attending community mental health services with a diagnosis of BPD, emerging BPD traits or emotion dysregulation who were not actively self-harming. The majority of participants were female (71%), aged 25-34 years (32%), single (48%) and unemployed (34%). Participants partook in a 24-week DBT-ST intervention delivered by DBT therapists. Outcome measures included the Difficulties in Emotion Regulation Scale (DERS), the DBT Ways of Coping Checklist (DBT-WCCL) and the Five Facet Mindfulness Questionnaire (FFMQ). Measures were administered at pre-intervention, at the end of each skills module, and at post-intervention. RESULTS: Significant reductions in emotion dysregulation (DERS) and dysfunctional coping (DBT-WCCL) scores were reported from pre- to post-intervention (p < .001). A significant increase in mindfulness scores (FFMQ) and DBT skill use (DBT-WCCL) was also observed (p < .001). However, the drop-out rate was high (49% at post-intervention). DISCUSSION: The results of this uncontrolled study suggest that a standalone 24-week DBT-ST intervention may have a beneficial impact in terms of a reduction in emotion dysregulation and dysfunctional coping, and an increase in mindfulness and DBT skills use in patients with BPD/ emerging BPD traits who are not currently engaging in self-harm. Adequately powered randomised controlled trials are required to determine treatment efficacy in comparison to standard DBT for this population.

How do people experience a family member's high-risk self-harm? An interpretative phenomenological analysis.

Few studies have explored the impact self-harm has on family members, with none specifically focusing on physical and psychosomatic responses following a family member's high-risk self-harm Therefore, this study aims to explore the health impact of experiencing a family member's high-risk self-harm. Participants represented family members of consecutive cases of self-harm, who were recruited from the Suicide Support and Information System - A Case-Control Study (SSIS-ACE). Qualitative interviews were conducted with 9 participants whose family member presented to a large tertiary hospital in Ireland with high-risk self-harm. Interpretative phenomenological analysis was conducted. Qualitative findings indicated 4 superordinate themes in relation to experiences following a family member's presentation to hospital following an episode of high-risk self-harm (1) implications for health and well-being; (2) process of meaning-making; (3) feelings of responsibility and (4) challenges with support network. Participants consistently experienced adverse health impacts including vomiting, hypertension, and depression. The findings imply that caring for their own and their family members' well-being, together with challenges with accessing health services underscores the importance of family members being proactively contacted by healthcare professionals to alleviate these detrimental health effects.

Does an adapted Dialectical Behaviour Therapy skills training programme result in positive outcomes for participants with a dual diagnosis? A mixed methods study.

BACKGROUND: Treating severe emotional dysregulation and co-occurring substance misuse is challenging. Dialectical behaviour therapy (DBT) is a comprehensive and evidence-based treatment for borderline personality disorder (BPD). It has been hypothesised that the skills training, which is a facet of the full DBT programme, might be effective for people with severe emotional dysregulation and other co-occurring conditions, but who do not meet the criteria for BPD. However, there is limited research on standalone DBT skills training for people with substance misuse and emotional dysregulation. METHODS: A mixed methods study employing an explanatory sequential design was conducted where participants with a dual diagnosis (n = 64) were recruited from a community-based public addiction treatment service in Ireland between March 2015 and January 2018. DBT therapists screened potential participants against the study eligibility criteria. Quantitative self-report measures examining emotion regulation, mindfulness, adaptive and maladaptive coping responses including substance misuse, and qualitative feedback from participants were collected. Quantitative data were summarised by their mean and standard deviation and multilevel linear mixed effects models were used to estimate the mean change from baseline to post-intervention and the 6-month follow-up period. Thematic analysis was used to analyse the qualitative data. RESULTS: Quantitative results indicated reductions in binge drinking and use of Class A, B and C drug use from pre-intervention (T1) to the 6-month follow-up (T3). Additionally, significant improvements were noted for mindfulness practice and DBT skills use from T1 to T3 (p < 0.001). There were also significant reductions in dysfunctional coping and emotional dysregulation from T1 to T3 (p < 0.001). Significant differences were identified from pre to post intervention in reported substance use, p = 0.002. However, there were no significant differences between pre-intervention and 6-month follow up reports of substance use or at post-intervention to 6 month follow up. Qualitative findings indicated three superordinate themes in relation to participants' experiences of a DBT skills training programme, adapted from standard DBT: (1) new lease of life; (2) need for continued formal aftercare and (3) programme improvements. Participants described reductions in substance misuse, while having increased confidence to use the DBT skills they had learned in the programme to deal with difficult emotions and life stressors. CONCLUSIONS: This DBT skills training programme, adapted from standard DBT, showed positive results for participants and appears effective in treating people with co-occurring disorders. Qualitative results of this mixed methods study corroborate the quantitative results indicating that the experiences of participants have been positive. The study indicates that a DBT skills programme may provide a useful therapeutic approach to managing co-occurring symptoms.

How suicide-bereaved family members experience the inquest process: a qualitative study using thematic analysis.

PURPOSE: Suicide bereavement confers unique risk and distress. In several countries, bereaved family members are called on to attend an inquest, an official public inquiry into deaths caused by external factors. The current study aimed to explore how suicide-bereaved family members (n = 18) experienced the inquest process, through qualitative semi-structured interviews. METHOD: Participants were identified via coroner's records and had previously taken part in a case-control study. RESULTS: Qualitative findings indicated four overall themes with respect to family members' experiences of the inquest process: "inquest as fearfully unknown", "structural processes of the inquest", "enduring public and private pain to obtain answers" and "gaining answers and making sense". Most family members experienced distress and fear as a result of several elements of the inquest process. Some participants had positive experiences but these did not outweigh the distress experienced by the majority of family members regarding their overall experience of the inquest process. CONCLUSIONS: Key recommendations include informing family members of the main aspects and purpose of the inquest process beforehand, adapting the process to maximise the privacy and comfort of the bereaved relatives, and restricting graphic evidence being heard, where possible, to minimise distress experienced by family members.

Media reporting of suicide and adherence to media guidelines.

BACKGROUND: International research consistently shows evidence for an association between sensationalised and detailed media reporting, and suicidal behaviour. AIM: This study examined the quality of media reporting of suicide and adherence to media guidelines in Ireland. METHODS: In accordance with the criteria outlined in the media guidelines for reporting suicide, 243 media articles were screened and analysed for quality of reporting of two high-profile cases of suicide and two cases of suicide that became high profile following a period of intense media coverage that occurred between September 2009 and December 2012. RESULTS: A minority of articles breached the media guidelines in relation to sensationalised language (11.8%), placement of reports on the front page of the newspaper (9.5%), publishing of inappropriate photographs (4.2%) and mention of location of suicide (2.4%), while no articles disclosed the contents of a suicide note. However, in the majority of articles analysed, journalists did not refer to appropriate support services for people vulnerable to, and at risk of suicide (75.8%) or mention wider issues that are related to suicidal behaviour (53.8%). Overemphasis of community grief (48.3%) was also common. Nearly all articles (99.2%) breached at least one guideline and 58.9% of articles breached three or more guidelines. CONCLUSION: Overall, adherence to media guidelines on reporting suicide in Ireland improved in certain key areas from September 2009 until December 2012. Nonetheless, important challenges remain. Increased monitoring by media monitoring agencies, regulators and government departments is required. Implementation should be conducted using a pro-active approach and form part of the curriculum of journalists and editors. The inclusion of guidelines for the reporting of suicidal behaviour in press codes of conduct for journalists warrants consideration.

What are the physical and psychological health effects of suicide bereavement on family members? An observational and interview mixed-methods study in Ireland.

OBJECTIVES: Research focussing on the impact of suicide bereavement on family members' physical and psychological health is scarce. The aim of this study was to examine how family members have been physically and psychologically affected following suicide bereavement. A secondary objective of the study was to describe the needs of family members bereaved by suicide. DESIGN: A mixed-methods study was conducted, using qualitative semistructured interviews and additional quantitative self-report measures of depression, anxiety and stress (DASS-21). SETTING: Consecutive suicide cases and next-of-kin were identified by examining coroner's records in Cork City and County, Ireland from October 2014 to May 2016. PARTICIPANTS: Eighteen family members bereaved by suicide took part in a qualitative interview. They were recruited from the Suicide Support and Information System: A Case-Control Study (SSIS-ACE), where family members bereaved by suicide (n=33) completed structured measures of their well-being. RESULTS: Qualitative findings indicated three superordinate themes in relation to experiences following suicide bereavement: (1) co-occurrence of grief and health reactions; (2) disparity in supports after suicide and (3) reconstructing life after deceased's suicide. Initial feelings of guilt, blame, shame and anger often manifested in enduring physical, psychological and psychosomatic difficulties. Support needs were diverse and were often related to the availability or absence of informal support by family or friends. Quantitative results indicated that the proportion of respondents above the DASS-21 cut-offs respectively were 24% for depression, 18% for anxiety and 27% for stress. CONCLUSIONS: Healthcare professionals' awareness of the adverse physical and psychosomatic health difficulties experienced by family members bereaved by suicide is essential. Proactively facilitating support for this group could help to reduce the negative health sequelae. The effects of suicide bereavement are wide-ranging, including high levels of stress, depression, anxiety and physical health difficulties.

Physical and psychosomatic health outcomes in people bereaved by suicide compared to people bereaved by other modes of death: a systematic review.

BACKGROUND: Little research has been conducted into the physical health implications of suicide bereavement compared to other causes of death. There is some evidence that suicide bereaved parents have higher morbidity, particularly in terms of chronic illness. This systematic review aims to examine the physical and psychosomatic morbidities of people bereaved by a family member's suicide and compare them with family members bereaved by other modes of death. METHODS: MEDLINE, EMBASE, CINAHL, and PsycINFO were searched from 1985 to February 2016. The search was re-run in March 2017. Peer-reviewed English language articles comparing suicide-bereaved family members to non-suicide bereaved family members on measures of physical or psychosomatic health were eligible for inclusion. Cohort, cross-sectional, case-control and cohort-based register studies were eligible for inclusion. A modified version of the Newcastle Ottawa Scale was used for quality assessment. Results were synthesised using narrative synthesis. RESULTS: The literature search located 24 studies which met the inclusion criteria. Seven studies found statistically significant associations between physical health and suicide bereavement. Five of the studies found that suicide-bereaved family members were more likely to experience pain, more physical illnesses and poorer general health. They were also at increased risk of cardiovascular disease, hypertension, diabetes and chronic obstructive pulmonary disease. In contrast, another study in Denmark found that those bereaved by suicide had a lower risk of a number of physical health disorders, including cancers, diabetes, cardiovascular and chronic lower respiratory tract disorders compared to those bereaved by other causes of death. Additionally, a further study conducted in the United States found that suicide-bereaved children visited a GP less frequently than non-suicide bereaved children. CONCLUSIONS: Review findings are relevant for clinicians working with people bereaved by suicide as they highlight that such clients are at increased risk of several adverse physical health outcomes. Future research should examine health risk behaviours of suicide-bereaved and non-suicide bereaved family members as they may confound the association between exposure and outcome. TRIAL REGISTRATIONS: The review protocol has been registered on PROSPERO, registration number CRD42016030007 .

What are the physical and psychological health effects of suicide bereavement on family members? Protocol for an observational and interview mixed-methods study in Ireland.

INTRODUCTION: Research indicates that experiencing the suicide of a relative can have a significant impact on family members' emotional health. However, research incorporating the impact of suicide bereavement on family members' physical health is sparse. This paper details the protocol for a mixed-methods study of suicide-bereaved family members. The study will primarily examine the physical and mental health needs of those bereaved by suicide. A secondary objective of the study is to describe the support service needs of family members bereaved by suicide. METHODS AND ANALYSIS: A mixed-methods approach, using semistructured interviews and self-report questionnaires, will be used. Interviews will be conducted with a group of 15-20 relatives who experienced suicide bereavement. This protocol will follow the COREQ checklist criteria for the reporting of qualitative research interviews. Thematic analysis will be used to examine experiences and impact of bereavement on psychological and physical health. Self-report quantitative data on well-being will be analysed using descriptive statistics. ETHICS AND DISSEMINATION: Ethical approval to conduct this study has been granted from the Clinical Research Ethics Committee of the Cork Teaching Hospitals. Pseudonyms will be given to participants to protect anonymity. It will be explained to participants that participation in the study is voluntary and they have to right to withdraw at any time. The findings of this research will be disseminated to regional, national and international audiences through publication in peer-reviewed international journals and presentations at scientific conferences. This research also forms part of a PhD thesis.