Compassion or stigma? How adults bereaved by alcohol or drugs experience services.

How to promote compassionate care within public services is a concern in several countries; specifically, some British healthcare scandals highlight poor care for service users who may readily be stigmatised as 'other'. The article therefore aims to understand better the relationship between stigma and compassion. As people bereaved by a drug- or alcohol-related death often experience stigma, the article draws on findings from a major British study, conducted during 2012-2015 by the authors, of people bereaved in this way, in order to see how service provision can be improved. One hundred and six bereaved family members were interviewed in depth about their experiences of loss and support. Thematic analysis developed theoretical understandings of participants' lived experiences. This article analyses our data on how bereaved people experienced stigma and kindness from practitioners of all kinds. We found that stigma can be mitigated by small acts of kindness from those encountered after the death. Stigma entails stereotyping, othering and disgust, each of which has emotional and cognitive aspects; kindness entails identification and fellow feeling; professionalism has classically entailed emotional detachment, but interviewees found cold professionalism as disturbing as explicit disgust. Drawing on theories concerning the end of life, bereavement and emotional labour, the article analyses the relationship between stigma, kindness and professionalism, and identifies some strategies to counter stigmatisation and foster compassion.

Youth social behaviour and network therapy (Y-SBNT): adaptation of a family and social network intervention for young people who misuse alcohol and drugs - a randomised controlled feasibility trial.

BACKGROUND: Family interventions appear to be effective at treating young people's substance misuse. However, implementation of family approaches in UK services is low. This study aimed to demonstrate the feasibility of recruiting young people to an intervention based on an adaptation of adult social behaviour and network therapy. It also sought to involve young people with experience of using substance misuse services in the research process. OBJECTIVES: To demonstrate the feasibility of recruiting young people to family and social network therapy and to explore ways in which young people with experience of using substance misuse services could be involved in a study of this nature. DESIGN: A pragmatic, two-armed, randomised controlled open feasibility trial. SETTING: Two UK-based treatment services for young people with substance use problems, with recruitment taking place from May to November 2014. PARTICIPANTS: Young people aged 12-18 years, newly referred and accepted for structured interventions for drug and/or alcohol problems. INTERVENTIONS: A remote, web-based computer randomisation system allocated young people to adapted youth social behaviour and network therapy (Y-SBNT) or treatment as usual (TAU). Y-SBNT participants were intended to receive up to six 50-minute sessions over a maximum of 12 weeks. TAU participants continued to receive usual care delivered by their service. MAIN OUTCOME MEASURES: Feasibility was measured by recruitment rates, retention in treatment and follow-up completion rates. The main clinical outcome was the proportion of days on which the main problem substance was used in the preceding 90-day period as captured by the Timeline Follow-Back interview at 3 and 12 months. RESULTS: In total, 53 young people were randomised (Y-SBNT, n = 26; TAU, n = 27) against a target of 60 (88.3%). Forty-two young people attended at least one treatment session [Y-SBNT 22/26 (84.6%); TAU 20/27 (74.1%)]; follow-up rates were 77.4% at month 3 and 73.6% at month 12. Data for nine young people were missing at both months 3 and 12, so the main clinical outcome analysis was based on 24 young people (92.3%) in the Y-SBNT group and 20 young people (74.1%) in the TAU group. At month 12, the average proportion of days that the main problem substance was used in the preceding 90 days was higher in the Y-SBNT group than in the TAU group (0.54 vs. 0.41; adjusted mean difference 0.13, 95% confidence interval -0.12 to 0.39; p = 0.30). No adverse events were reported. Seventeen young people with experience of substance misuse services were actively involved throughout the study. They informed key elements of the intervention and research process, ensuring that the intervention was acceptable and relevant to our target groups; contributing to the design of key trial documents, ideas for a new model of public involvement and this report. Two parents were also involved. CONCLUSIONS: The adapted intervention could be delivered in young people's services, and qualitative interviews found that Y-SBNT was acceptable to young people, family members and staff. Engagement of family and network members proved difficult within the intervention and research aspects. The study proved the feasibility of this work in routine services but outcome measurement based on narrow substance use variables may be limited and may fail to capture other important changes in wider areas of functioning for young people. Validation of the EuroQol-5 Dimensions for young people aged 12-18 years should be considered and flexible models for involvement of young people in research are required to achieve inclusive representation throughout all aspects of the research process. Although recommendation of a full trial of the Y-SBNT intervention compared with TAU is not supported, this study can inform future intervention development and UK research within routine addiction services. TRIAL REGISTRATION: Current Controlled Trials ISRCTN93446265. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 15. See the NIHR Journals Library website for further project information.

Family interventions for drug and alcohol misuse: is there a best practice?

PURPOSE OF REVIEW: Recent developments in research and practice have highlighted the effectiveness of family interventions in substance misuse treatment. The present paper will critically review studies of family approaches published over the past 12 months, assess the current state of this field and suggest future directions. RECENT FINDINGS: Family interventions lead to positive outcomes for both misusers and family members. Some recent interventions have widened the focus also to include other members of the user's social networks and have focused on a range of treatment goals. SUMMARY: An increasingly robust evidence base supports family-focused and social network-focused interventions in substance misuse treatment. Recent studies have continued to show that family and network approaches either match or improve outcomes when compared with individual interventions. Research needs (and is starting) to consider a broader set of outcomes relevant to family and network interventions, besides simply making an impact on substance use. The major challenge involves implementation of family approaches in routine service provision; interventions with most evidence supporting them are not used routinely in practice. Research studies and policy initiatives need to focus on dissemination of family approaches and their integration into treatment services.

Conspicuous by their abstinence: The limited engagement of heroin users in English and Welsh Drug Recovery Wings.

BACKGROUND: In recent years, an abstinence-focused, 'recovery' agenda has emerged in UK drug policy, largely in response to the perception that many opioid users had been 'parked indefinitely' on opioid substitution therapy (OST). The introduction of ten pilot 'Drug Recovery Wings' (DRWs) in 2011 represents the application of this recovery agenda to prisons. This paper describes the DRWs' operational models, the place of opiate dependent prisoners within them, and the challenges of delivering 'recovery' in prison. METHODS: In 2013, the implementation and operational models of all ten pilot DRWs were rapidly assessed. Up to three days were spent in each DRW, undertaking semi-structured interviews with a sample of 94 DRW staff and 102 DRW residents. Interviews were fully transcribed, and coded using grounded theory. Findings from the nine adult prisons are presented here. RESULTS: Four types of DRW were identified, distinguished by their size and selection criteria. Strikingly, no mid- or large-sized units regularly supported OST recipients through detoxification. Type A were large units whose residents were mostly on OST with long criminal records and few social or personal resources. Detoxification was rare, and medication reduction slow. Type B's mid-sized DRW was developed as a psychosocial support service for OST clients seeking detoxification. However, staff struggled to find such prisoners, and detoxification again proved rare. Type C DRWs focused on abstinence from all drugs, including OST. Though OST clients were not intentionally excluded, very few applied to these wings. Only Type D DRWs, offering intensive treatment on very small wings, regularly recruited OST recipients into abstinence-focused interventions. CONCLUSION: Prison units wishing to support OST recipients in making greater progress towards abstinence may need to be small, intensive and take a stepped approach based on preparatory motivational work and extensive preparation for release. However, concerns about post-release deaths will remain.

Family members of relatives with alcohol, drug and gambling problems: a set of standardized questionnaires for assessing stress, coping and strain.

AIMS: To describe a set of standard questionnaire measures for the assessment of the needs of family members of relatives with alcohol, drug or gambling problems, and to present evidence of their reliability and validity from a series of related studies. DESIGN: Includes cross-sectional and repeated-measurement studies. SETTING AND PARTICIPANTS: Family members affected by and concerned about the problem drinking or drug-taking of close relatives in treatment and non-treatment samples in the United Kingdom (white and Sikh) and Mexico City; family members of untreated heavy drinkers; and family members of problem gamblers. MEASUREMENTS: Four measures derived from a stress-strain-coping-support model of alcohol, drugs and gambling problems and the family: Family Member Impact scale (FMI), Symptom Rating Test (SRT), Coping Questionnaire (CQ), and Hopefulness-Hopelessness scale (HOPE). FMI, SRT and CQ assess stress, strain and coping, respectively. The exact role of HOPE in the model remains to be determined. The support component remains unmeasured. FINDINGS: Results from a number of studies support the internal reliability, discriminant and construct validity and sensitivity to change of the SRT and its two constituent scales (psychological and physical symptoms) and at least two subscales of the CQ (engaged and tolerant-inactive coping). Although showing evidence of satisfactory reliability and some evidence of discriminant validity, further work may be required on the CQ withdrawal coping subscale. Evidence suggests that the FMI is reliable and valid and may have a factor structure that will support future research (distinguishing worrying behaviour from active disturbance). HOPE is a new measure showing promising characteristics. CONCLUSIONS: A set of standard measures is available for helping to assess the needs of concerned and affected family members, derived from an explicit model of the family in relation to excessive drinking, drug taking or gambling. It may have a role to play in correcting the current neglect of the needs of such family members, estimated to be in the region of nearly a million adults in Britain alone.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

Family interventions in the treatment of alcohol and drug problems.

Alcohol and drug problems affect not only those using these substances but also family members of the substance user. In this review evidence of the negative impacts substance misuse may have upon families are examined, following which family-focused interventions are reviewed. Several family-focused interventions have been developed. They can be broadly grouped into three types: (1) working with family members to promote the entry and engagement of substance misusers into treatment; (2) joint involvement of family members and substance misusing relatives in the treatment of the latter; and (3) interventions responding to the needs of the family members in their own right. The evidence base for each of the three types is reviewed. Despite methodological weaknesses in this area, a number of conclusions can be advanced that support wider use of family focused interventions in routine practice. Future research needs to focus on (1) pragmatic trials that are more representative of routine clinical settings; (2) cost-effectiveness analyses, in terms of treatment costs and the impact of interventions on costs to society; (3) explore treatment process; and (4) make use of qualitative methods. In addition, there is a need to define more clearly the conceptual underpinnings of the family intervention under study.

A randomised controlled feasibility trial of family and social network intervention for young people who misuse alcohol and drugs: study protocol (Y-SBNT).

BACKGROUND: A growing body of research has identified family interventions to be effective in treating young people's substance use problems. However, despite this evidence, take-up of family-based approaches in the UK has been low. Key factors for this appear to include the resource-intensive nature of most family interventions which challenges implementation and delivery in many service settings and the cultural adaptation of approaches developed in the USA to a UK setting. This study aims to demonstrate the feasibility of recruiting young people to a specifically developed family- and wider social network-based intervention by testing an adapted version of adult social behaviour and network therapy (SBNT). METHODS: A pragmatic, randomised controlled, open feasibility trial delivered in two services for young people in the UK. Potential participants are aged 12-18 years referred for drug or alcohol problems to either service. The main purpose of this study is to demonstrate the feasibility of recruiting young people to a specifically developed family and social network-based intervention. The feasibility and acceptability of this intervention will be measured by recruitment rates, treatment retention, follow-up rates and qualitative interviews. The feasibility of training staff from existing services to deliver this intervention will be explored. Using this opportunity to compare the effectiveness of the intervention against treatment as usual, Timeline Follow-Back interviews will document the proportion of days on which the main problem substance was used in the preceding 90-day period at each assessment point. The economic component will examine the feasibility of conducting a full incremental cost-effectiveness analysis of the two treatments. The study will also explore and develop models of patient and public involvement which support the involvement of young people in a study of this nature. DISCUSSION: An earlier phase of work adapted social behaviour and network therapy (adult approach) to produce a purpose-designed youth version supported by a therapy manual and associated resources. This was achieved by consultation with young people with experience of services and professionals working in services for young people. This feasibility trial alongside ongoing consultations with young people will offer a meaningful understanding of processes of delivery and implementation. TRIAL REGISTRATION: ISRCTN93446265; Date ISRCTN assigned 31/05/2013.

Addiction in the family is a major but neglected contributor to the global burden of adult ill-health.

This paper offers a conceptual overview of a neglected field. Evidence is presented to suggest that, globally, addiction is sufficiently stressful to cause pain and suffering to a large but uncounted number of adult affected family members (AFMs), possibly in the region of 100 million worldwide. A non-pathological stress-strain-coping-support model of the experience of AFMs is presented. The model is based on research in a number of different sociocultural groups in Mexico, England, Australia and Italy and aims to be sensitive to the circumstances of AFMs in low and middle income countries and in minority ethnic and indigenous groups as well to those of majorities in wealthier nations. It highlights the social and economic stressors of many kinds which AFMs face, their lack of information and social support, dilemmas about how to cope, and resulting high risk for ill-health. The public sector and personal costs are likely to be high. Attention is drawn to the relative lack of forms of help designed for AFMs in their own right. A 5-Step form of help aiming to fill that gap is briefly described. Family members affected by addiction have for too long been a group without a collective voice; research and action using the model and method described can make a contribution to changing that state of affairs.

The relative efficacy of two levels of a primary care intervention for family members affected by the addiction problem of a close relative: a randomized trial.

OBJECTIVES: A randomized trial to compare two levels of an intervention (full versus brief) for use by primary health-care professionals with family members affected by the problematic drug or alcohol use of a close relative. DESIGN: A prospective cluster randomized comparative trial of the two interventions. SETTING: A total of 136 primary care practices in two study areas within the West Midlands and the South West regions of England. PARTICIPANTS: A total of 143 family members affected by the alcohol or drug problem of a relative were recruited into the study by primary health-care professionals. All recruited family members were seen on at least one occasion by the professional delivering the intervention and 129 (90 %) were followed-up at 12 weeks. MAIN OUTCOME MEASURES: Two validated and standardized self-completion questionnaires measuring physical and psychological symptoms of stress (Symptom Rating Test) and behavioural coping (Coping Questionnaire) experienced by the family members. It was predicted that the full intervention would show increased reduction in both symptoms and coping when compared to the brief intervention. RESULTS: The primary analysis adjusted for clustering, baseline symptoms and stratifying variables (location and professional group) showed that there were no significant differences between the two trial arms. The symptom score at follow-up was 0.23 [95% confidence interval (CI): -3.65, +4.06] higher in the full intervention arm than in the brief intervention arm, and the coping score at follow-up was 0.12 (95% CI: -5.12, +5.36) higher in the full intervention arm than in the brief intervention arm. CONCLUSIONS: A well-constructed self-help manual delivered by a primary care professional may be as effective for family members as several face-to-face sessions with the professional.

Alcohol, drugs and the family: results from a long-running research programme within the UK.

This article will outline the main strands of the UK-based Alcohol, Drugs and the Family (ADF) research programme. This programme has examined the impact of substance misuse problems on children, spouses, and families, both in the UK and elsewhere, especially in urban Mexico City and in Australia amongst both urban and rural Aborigine populations. This article will outline the main theoretical perspective that we have developed from this work (the stress-strain-coping-support model). It will outline some of the key findings of this programme, and address some of the key universals that we have observed across various cultures. It will end by describing current research, including the testing of brief interventions being delivered through primary care to family members to enable them to cope better with the problems which family substance misuse causes.

The experiences of postnatal depression in women from black and minority ethnic communities in Wiltshire, UK.

OBJECTIVES: To describe the experiences of women suffering from postnatal depression in black and minority ethnic communities in Wiltshire, UK. DESIGN: Semi-structured interviews and focus groups with women across Wiltshire with current and past experience of postnatal depression. EPDS data are also reported. Qualitative data (via telephone and face-to-face interviews) were also collected from GPs and health visitors who worked with these women. RESULTS: Qualitative analysis identified four main themes that were part of the experience of postnatal depression for the women and the primary health care professionals in contact with them--issues specific to pregnancy and birth (including postnatal depression), issues specific to primary health care, issues relating to culture, and 'other' issues. This latter theme describes the multitude of problems that many of the women endured, e.g. family/marital problems, violence, drinking alcohol, bereavement, financial difficulties, unemployment, accommodation and (racial) harassment. CONCLUSIONS: All the women had problematic lives, affected by a multitude of factors, and raised a number of serious concerns that related to health and social care. This has implications for practice and service provision, as demonstrated by the data from GPs and health visitors, in, for example, the provision of advice and information (and in different languages), training, improved communication and inter-agency working, in this area (where the research was conducted) and elsewhere in England. More research is needed to further explore the needs of women from minority ethnic groups, taking issues of, for example, cultural specificity and urbanity/rurality into account. Further research also needs to investigate ways of offering help and support to this patient group.

Admissions to hospital for deliberate self-harm in England 1995-2000: an analysis of hospital episode statistics.

BACKGROUND: Rates of deliberate self-harm (DSH) were increasing in the United Kingdom during the 1980s and early 1990s, particularly among young adult males. Self-poisoning with paracetamol was the most common means, with overdoses of anti-depressants becoming more frequent. Changes to paracetamol pack size regulations in 1997 have been followed by a reduction in overdoses, and there has been more prescription of anti-depressants less likely to necessitate hospitalization if overdosed. Improved liaison psychiatry services and increased levels of employment are among the factors that would suggest an impact on hospital admissions for self-harm. This study analysed DSH admissions to hospitals in England from 1995/96 to 1999/2000 to examine changes. METHODS: A retrospective analysis of the Hospital Episode Statistics database was carried out. RESULTS: Hospital admissions for DSH rose to 153 per 100000 in 1997/98, then declined to 143 per 100000 in 1999/2000. Paracetamol overdoses decreased from 77 to 67 per 100000. The use of anti-depressants or tranquillizers grew from 56 to 75 per 100000 during the 5 years. Self-injury, narcotics overdoses and the use of alcohol continued to increase over time. CONCLUSIONS: Yearly increases in admissions for DSH to hospitals in England reversed in 1998/99 and stabilized in 1999/ 2000. These changes were most noticeable for the 16-24 years age group. The use of paracetamol decreased, whereas other means of self-harm increased. Regional differences and the relationship between rates of DSH in the community and hospital should be explored further.