What helps people to reduce or stop self-harm? A systematic review and meta-synthesis of first-hand accounts.

BACKGROUND: Self-harm is an important public health problem but therapeutic interventions, particularly for people who have a history of multiple repetition, are not always taken up or effective when they are. The aim of this review is to explore first-hand accounts of what helps outside therapy and identify actions and processes, which can support the reduction or cessation of self-harm. METHODS: A systematic review and thematic meta-synthesis of the first-person accounts of what has helped to reduce or stop self-harm reported in primary studies. RESULTS: The meta-synthesis combined 546 participant excerpts from 56 studies. Two over-arching themes were identified: (i) breaking the chain incorporated actions taken to break the link between a person's current psychological or social state and the act of self-harm and (ii) building a new foundation for change captured actions over the longer-term, focusing on practical changes in relationships and in a person's way of life, such as work or living arrangements. CONCLUSIONS: The results emphasize the importance of interpersonal change in reducing or stopping self-harm. While interpersonal factors are acknowledged as important reasons behind self-harm, they are often under-represented in self-management advice and therapeutic interventions that focus on individual psychopathology.

Adolescent self-harm in Ghana: a qualitative interview-based study of first-hand accounts.

BACKGROUND: Recent prevalence studies suggest that self-harm among adolescents in sub-Saharan Africa is as common as it is in high income countries. However, very few qualitative studies exploring first-person accounts of adolescent self-harm are available from sub-Saharan Africa. We sought to explore the experiences and first-person perspectives of Ghanaian adolescents reporting self-harm - for deeper reflections on the interpretive repertoires available in their cultural context for making sense of self-harm in adolescents. METHODS: Guided by a semi-structured interview protocol, we interviewed one-to-one 36 adolescents (24 in-school adolescents and 12 street-connected adolescents) on their experiences of self-harm. We applied experiential thematic analysis to the data. RESULTS: Adolescents' description of the background to their self-harm identified powerlessness in the family context and unwanted adultification in the family as key factors leading up to self-harm among both in-school and street-connected adolescents. Adolescents' explanatory accounts identified the contradictory role of adultification as a protective factor against self-harm among street-connected adolescents. Self-harm among in-school adolescents was identified as a means of "enactment of tabooed emotions and contestations", as a "selfish act and social injury", as "religious transgression", while it was also seen as improving social relations. CONCLUSIONS: The first-person accounts of adolescents in this study implicate familial relational problems and interpersonal difficulties as proximally leading to self-harm in adolescents. Self-harm in adolescents is interpreted as an understandable response, and as a strong communicative signal in response to powerlessness and family relationship difficulties. These findings need to be taken into consideration in the planning of services in Ghana and are likely to be generalisable to many other countries in sub-Saharan Africa.

Prevalence of self-harm among lesbian, gay, bisexual, and transgender adolescents: a comparison of personal and social adversity with a heterosexual sample in Ghana.

OBJECTIVES: We sought to estimate the prevalence of self-reported self-harm among adolescents identifying as lesbian, gay, bisexual, and transgender (LGBT) in Ghana, and compare self-reported personal and social adversities related to self-harm in this group to those in a random sample of heterosexual adolescents from the same locality. RESULTS: A total of 444 adolescents aged 13-21 years, comprising 74 LGBT adolescents and 370 heterosexual adolescents, provided data. The lifetime prevalence estimate of self-harm was higher in the LGBT group (47%) than the heterosexual group (23%). The LGBT group reported a higher rate of self-harm during the previous 12 months (45%), compared to the heterosexual group (18%). LGBT adolescents reported more alcohol and substance use and more personal social adversities, including various forms of victimisation, than heterosexual adolescents. They were no more likely to report difficulty in making and keeping friends or schoolwork problems than were heterosexual adolescents.

Adolescents at risk of self-harm in Ghana: a qualitative interview study exploring the views and experiences of key adult informants.

BACKGROUND: In Ghana, rates of self-harm in young people are as high as they are in high income countries. Self-reported interpersonal, familial and societal stressors form the most important background, and self-harm is seen by young people as a way of responding to that stress. In the present study, we obtained the views of key adult informants about self-harm among adolescents in Ghana - what they thought as possible reasons for self-harm in young people and what actions might be needed at an individual or population level to respond to the problem. METHODS: We interviewed face-to-face 11 adults, using a semi-structured interview guide. We used an experiential thematic analysis technique to analyse the transcribed interviews. RESULTS: The analysis identified five themes: "underestimating the prevalence of self-harm in adolescents", "life on the streets makes self-harm less likely", "self-harm in adolescents is socially and psychologically understandable", "ambivalence about responding to adolescent self-harm", and "few immediate opportunities for self-harm prevention in Ghana". Adolescent self-harm was acknowledged but its scale was underestimated. The participants offered explanations for adolescent self-harm in social and psychological terms that are recognisable from accounts in high income countries. Low rates among street-connected young people were explained by their overarching orientation for survival. Participants agreed that identification was important, but they expressed a sense of inadequacy in identifying and supporting adolescents at risk of self-harm. Again, the participants agreed that self-harm in adolescents should be prevented, but they recognised that relevant policies were not in place or if there were policies they were not implemented - mental health and self-harm were not high on public or political priorities. CONCLUSIONS: The adults we interviewed about young people who self-harm see themselves as having a role in identifying adolescents at risk of self-harm and see the organisations in which they work as having a role in responding to individual young people in need. These are encouraging findings that point to at least one strand of a policy in Ghana for addressing the problem of self-harm in young people.

Self-harm with suicidal and non-suicidal intent in young people in sub-Saharan Africa: a systematic review.

BACKGROUND: Self-harm, whether attributed to suicidal or non-suicidal motives, is associated with several poor outcomes in young people, including eventual suicide. Much of our understanding of self-harm in young people is based on literature from Europe (particularly, the UK), North America, and Australia. We aimed to synthesise the available evidence on prevalence, the commonly reported self-harm methods, correlates, risk and protective factors, and reasons for self-harm, in adolescents (aged 10-25 years) in sub-Saharan Africa. METHOD: We searched MEDLINE, PsycINFO, PubMed, African Journals OnLine, and African Index Medicus for records from 1950 through August 2019, without language restrictions. We supplemented the database searches by searching relevant portals for postgraduate theses, reference harvesting, contacting authors for unpublished studies, and hand searching relevant print sources. We applied narrative synthesis to the evidence. RESULTS: Seventy-four studies from 18 sub-Saharan African countries met the inclusion criteria. The median lifetime prevalence estimate was 10·3% (interquartile range [IQR] 4·6% - 16·1%); median 12-month prevalence estimate was 16·9% (IQR: 11·5% - 25·5%); median 6-month prevalence estimate was 18·2% (IQR: 12·7% - 21·8%); and the median 1-month prevalence estimate was 3·2% (IQR: 2·5-14·8%). Studies from Western sub-Saharan Africa reported the highest 12-month prevalence estimates (median = 24·3%; IQR = 16·9% - 27·9%). Clinical samples commonly reported overdose, whereas self-cutting was most commonly reported in non-clinical samples. Academic failure, sexual, emotional, and physical abuse, romantic relationship problems, family conflict, depression, and previous self-harm were identified as key correlates of self-harm. No study reported protective factors against self-harm. CONCLUSION: Variation in estimates was explained by small sample sizes and variation in definitions and measures used. Exploration of associations, risks and protective factors was based upon concepts and measures derived from high income countries. More detailed and culturally sensitive research is needed to understand the context-specific risks and protective factors for self-harm in adolescents in sub-Saharan Africa.

Implementation of a problem-solving training initiative to reduce self-harm in prisons: a qualitative perspective of prison staff, field researchers and prisoners at risk of self-harm.

BACKGROUND: Social problem-solving is one technique used to help reduce incidence of self-harm. Our study evaluated the feasibility and acceptability of the adaptation and implementation of a brief Problem-Solving Training (PST) intervention to reduce self-harm in prisons. METHODS: The process involved i) adaptation of the training materials using focus groups with prison staff and prisoners, ii) training frontline prison staff to use the skills, and iii) implementation of the skills with prisoners at risk of self-harm. Qualitative interviews were conducted with prison staff, prisoners and field researchers and were analysed using a thematic framework to produce a model of the barriers and facilitators to the process. RESULTS: We conducted 43 interviews across three prison sites. The interviews included 19 prison staff, 18 prisoners and six field researcher meetings. The adaptation to the training and intervention materials were well received. The findings identified the need to support training using a collaborative and flexible approach. Prisoner engagement was affected by their own personal circumstances and by a range of contextual issues relating to the prison environment. Implementation of the skills by prison staff were hindered by resource constraints, the prison environment and staff attitudes. CONCLUSIONS: We found that it was feasible to adapt an existing intervention and contextualise it within the prison environment. Although we could train large numbers of staff it was deemed unfeasible for staff to implement the problem-solving skills to prisoners at risk of self-harm. Prisoners who engaged with the intervention reported a range of benefits. Alternative implementation mechanisms to tackle the contextual barriers proposed by staff and prisoners included delivery of the intervention using an educational setting and/or use of a prisoner peer-led scheme.

Developing and feasibility testing of data collection methods for an economic evaluation of a supported selfmanagement programme for adults with a learning disability and type 2 diabetes.

BACKGROUND: The challenges of conducting research with hard to reach vulnerable groups are particularly pertinent for people with learning disabilities. Data collection methods for previous cost and cost-effectiveness analyses of health and social care interventions targeting people with learning disabilities have relied on health care/health insurance records or data collection forms completed by the service provider rather than by people with learning disabilities themselves. This paper reports on the development and testing of data collection methods for an economic evaluation within a randomised controlled trial (RCT) for a supported self-management programme for people with mild/moderate learning disabilities and type 2 diabetes. METHODS: A case finding study was conducted to identify types of health and social care use and data collection methods employed in previous studies with this population. Based on this evidence, resource use questionnaires for completion by GP staff and interviewer-administered participant questionnaires (covering a wider cost perspective and health-related quality of life) were tested within a feasibility RCT. Interviewer-administered questionnaires included the EQ-5D-3L (the NICE recommended measure for use in economic evaluation). Participants were adults > 18 years with a mild or moderate learning disability and type 2 diabetes, with mental capacity to give consent to research participation. RESULTS: Data collection for questionnaires completed by GP staff requesting data for the last 12 months proved time intensive and difficult. Whilst 82.3% (121/147) of questionnaires were returned, up to 17% of service use items were recorded as unknown. Subsequently, a shorter recall period (4 months) led to a higher return rate but with a higher rate of missing data. Missing data for interviewer-administered participant questionnaires was > 8% but the interviewers reported difficulty with participant recall. Almost 60% (48/80) of participants had difficulty completing the EQ-5D-3L. CONCLUSIONS: Further investigation as to how service use can be recorded is recommended. Concerns about the reliability of identifying service use data directly from participants with a learning disability due to challenges in completion, specifically around recall, remain. The degree of difficulty to complete EQ-5D-3L indicates concerns regarding the appropriateness of using this measure in its current form in research with this population. TRIAL REGISTRATION: Current Controlled Trials ISRCTN41897033 (registered 21 January 2013).

Using photo-elicitation to understand reasons for repeated self-harm: a qualitative study.

BACKGROUND: Reasons for self-harm are not well understood. One of the reasons for this is that first-hand accounts are usually elicited using traditional interview and questionnaire methods. This study aims to explore the acceptability of using an approach (photo-elicitation) that does not rely on solely verbal or written techniques, and to make a preliminary assessment of whether people can usefully employ images to support a discussion about the reasons why they self-harm. METHOD: Interviews with eight participants using photo elicitation, a method in which photographs produced by the participant are used as a stimulus and guide within the interview. RESULTS: Participants responded positively to using images to support a discussion about their self-harm and readily incorporated images in the interview. Four main themes were identified representing negative and positive or adaptive purposes of self-harm: self-harm as a response to distress, self-harm to achieve mastery, self-harm as protective and self-harm as a language or form of communication. CONCLUSIONS: Employing this novel approach was useful in broadening our understanding of self-harm.

A pragmatic randomised controlled trial and economic evaluation of family therapy versus treatment as usual for young people seen after second or subsequent episodes of self-harm: the Self-Harm Intervention - Family Therapy (SHIFT) trial.

BACKGROUND: Self-harm in adolescents is common and repetition rates high. There is limited evidence of the effectiveness of interventions to reduce self-harm. OBJECTIVES: To assess the clinical effectiveness and cost-effectiveness of family therapy (FT) compared with treatment as usual (TAU). DESIGN: A pragmatic, multicentre, individually randomised controlled trial of FT compared with TAU. Participants and therapists were aware of treatment allocation; researchers were blind to allocation. SETTING: Child and Adolescent Mental Health Services (CAMHS) across three English regions. PARTICIPANTS: Young people aged 11-17 years who had self-harmed at least twice presenting to CAMHS following self-harm. INTERVENTIONS: Eight hundred and thirty-two participants were randomised to manualised FT delivered by trained and supervised family therapists (n = 415) or to usual care offered by local CAMHS following self-harm (n = 417). MAIN OUTCOME MEASURES: Rates of repetition of self-harm leading to hospital attendance 18 months after randomisation. RESULTS: Out of 832 young people, 212 (26.6%) experienced a primary outcome event: 118 out of 415 (28.4%) randomised to FT and 103 out of 417 (24.7%) randomised to TAU. There was no evidence of a statistically significant difference in repetition rates between groups (the hazard ratio for FT compared with TAU was 1.14, 95% confidence interval 0.87 to 1.49; p = 0.3349). FT was not found to be cost-effective when compared with TAU in the base case and most sensitivity analyses. FT was dominated (less effective and more expensive) in the complete case. However, when young people's and caregivers' quality-adjusted life-year gains were combined, FT incurred higher costs and resulted in better health outcomes than TAU within the National Institute for Health and Care Excellence cost-effectiveness range. Significant interactions with treatment, indicating moderation, were detected for the unemotional subscale on the young person-reported Inventory of Callous-Unemotional Traits (p = 0.0104) and the affective involvement subscale on the caregiver-reported McMaster Family Assessment Device (p = 0.0338). Caregivers and young people in the FT arm reported a range of significantly better outcomes on the Strengths and Difficulties Questionnaire. Self-reported suicidal ideation was significantly lower in the FT arm at 12 months but the same in both groups at 18 months. No significant unexpected adverse events or side effects were reported, with similar rates of expected adverse events across trial arms. CONCLUSIONS: For adolescents referred to CAMHS after self-harm, who have self-harmed at least once before, FT confers no benefits over TAU in reducing self-harm repetition rates. There is some evidence to support the effectiveness of FT in reducing self-harm when caregivers reported poor family functioning. When the young person themselves reported difficulty expressing emotion, FT did not seem as effective as TAU. There was no evidence that FT is cost-effective when only the health benefits to participants were considered but there was a suggestion that FT may be cost-effective if health benefits to caregivers are taken into account. FT had a significant, positive impact on general emotional and behavioural problems at 12 and 18 months. LIMITATIONS: There was significant loss to follow-up for secondary outcomes and health economic analyses; the primary outcome misses those who do not attend hospital following self-harm; and the numbers receiving formal FT in the TAU arm were higher than expected. FUTURE WORK: Evaluation of interventions targeted at subgroups of those who self-harm, longer-term follow-up and methods for evaluating health benefits for family groups rather than for individuals. TRIAL REGISTRATION: Current Controlled Trials ISRCTN59793150. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 12. See the NIHR Journals Library website for further project information.

Effectiveness of systemic family therapy versus treatment as usual for young people after self-harm: a pragmatic, phase 3, multicentre, randomised controlled trial.

BACKGROUND: Self-harm in adolescents is common and repetition occurs in a high proportion of these cases. Scarce evidence exists for effectiveness of interventions to reduce self-harm. METHODS: This pragmatic, multicentre, randomised, controlled trial of family therapy versus treatment as usual was done at 40 UK Child and Adolescent Mental Health Services (CAMHS) centres. We recruited young people aged 11-17 years who had self-harmed at least twice and presented to CAMHS after self-harm. Participants were randomly assigned (1:1) to receive manualised family therapy delivered by trained and supervised family therapists or treatment as usual by local CAMHS. Participants and therapists were aware of treatment allocation; researchers were masked. The primary outcome was hospital attendance for repetition of self-harm in the 18 months after group assignment. Primary and safety analyses were done in the intention-to-treat population. The trial is registered at the ISRCTN registry, number ISRCTN59793150. FINDINGS: Between Nov 23, 2009, and Dec 31, 2013, 3554 young people were screened and 832 eligible young people consented to participation and were randomly assigned to receive family therapy (n=415) or treatment as usual (n=417). Primary outcome data were available for 795 (96%) participants. Numbers of hospital attendances for repeat self-harm events were not significantly different between the groups (118 [28%] in the family therapy group vs 103 [25%] in the treatment as usual group; hazard ratio 1·14 [95% CI 0·87-1·49] p=0·33). Similar numbers of adverse events occurred in both groups (787 in the family therapy group vs 847 in the treatment as usual group). INTERPRETATION: For adolescents referred to CAMHS after self-harm, having self-harmed at least once before, our family therapy intervention conferred no benefits over treatment as usual in reducing subsequent hospital attendance for self-harm. Clinicians are therefore still unable to recommend a clear, evidence-based intervention to reduce repeated self-harm in adolescents. FUNDING: National Institute for Health Research Health Technology Assessment programme.

Good practice or positive action? Using Q methodology to identify competing views on improving gender equality in academic medicine.

OBJECTIVES: The number of women entering medicine has increased significantly, yet women are still under-represented at senior levels in academic medicine. To support the gender equality action plan at one School of Medicine, this study sought to (1) identify the range of viewpoints held by staff on how to address gender inequality and (2) identify attitudinal barriers to change. DESIGN: Q methodology. 50 potential interventions representing good practice or positive action, and addressing cultural, organisational and individual barriers to gender equality, were ranked by participants according to their perception of priority. SETTING: The School of Medicine at the University of Leeds, UK. PARTICIPANTS: Fifty-five staff members were purposively sampled to represent gender and academic pay grade. RESULTS: Principal components analysis identified six competing viewpoints on how to address gender inequality. Four viewpoints favoured positive action interventions: (1) support careers of women with childcare commitments, (2) support progression of women into leadership roles rather than focus on women with children, (3) support careers of all women rather than just those aiming for leadership, and (4) drive change via high-level financial and strategic initiatives. Two viewpoints favoured good practice with no specific focus on women by (5) recognising merit irrespective of gender and (6) improving existing career development practice. No viewpoint was strongly associated with gender, pay grade or role; however, latent class analysis identified that female staff were more likely than male to prioritise the setting of equality targets. Attitudinal barriers to the setting of targets and other positive action initiatives were identified, and it was clear that not all staff supported positive action approaches. CONCLUSIONS: The findings and the approach have utility for those involved in gender equality work in other medical and academic institutions. However, the impact of such initiatives needs to be evaluated in the longer term.

Associations between nonauditory hallucinations, dissociation, and childhood adversity in first-episode psychosis.

Although repeated associations have been found between adversity exposure (particularly exposure to childhood sexual abuse), dissociation, and auditory hallucinations in the context of psychosis, there is little comparable research examining hallucinations in other modalities. This study aimed to determine whether cumulative adversity exposure influences the likelihood of experiencing visual, tactile, olfactory, and gustatory hallucinations among psychosis patients and whether measures of dissociation are significantly associated with nonauditory hallucinations when exposure to childhood adversity and psychological distress are adjusted for. Self-report measures and a retrospective case-control design were applied to assess nonauditory hallucinations, dissociation, psychological distress, and childhood adversity exposure in a sample of first-episode psychosis patients reporting nonauditory hallucinations (n = 36) and controls from the same clinical population without nonauditory hallucinations (n = 31). Case participants reported higher levels of dissociation, psychological distress, and exposure to childhood rape than the control group. Dissociation remained significantly associated with nonauditory hallucinations when we adjusted for childhood sexual abuse, other types of childhood adversity, and a combined measure of emotional distress. Indication of a dose-response relationship was detected, in that total number of adversities was significantly associated with reporting more than one modality of nonauditory hallucination. Observed associations between auditory hallucinations and dissociation in psychosis may extend to other hallucination modalities. It is suggested that more research attention be paid to the etiology and impact of nonauditory hallucinations in psychosis samples.

Life adversity in depressed and non-depressed older adults: A cross-sectional comparison of the brief LTE-Q questionnaire and life events and difficulties interview as part of the CASPER study.

BACKGROUND: There is a paucity of research on the nature of life adversity in depressed and non-depressed older adults. Early life events work used in-depth interviews; however, larger epidemiological trials investigate life adversity using brief questionnaires. This study investigates the type of life adversity experienced in later life and its association with depression and compares adversity captured using a brief (LTE-Q) and in-depth (LEDS) measure. METHODS: 960 participants over 65 years were recruited in UK primary care to complete the PHQ-9 and LTE-Q. A sub-sample (n=19) completed the LEDS and a question exploring the subjective experience of the LTE-Q and LEDS. RESULTS: Important life adversity was reported on the LTE-Q in 48% of the sample. In the LTE-Q sample the prevalence of depression (PHQ-9≥10) was 12%. Exposure to recent adversity was associated with doubling of the odds of depression. The LTE-Q only captured a proportion of adversity measured by the LEDS (42% vs 84%). Both measures showed health, bereavement and relationship events were most common. LIMITATIONS: The cross-sectional design limits the extent to which inferences can be drawn around the direction of causality between adversity and depression. Recall in older adults is questionable. CONCLUSIONS: UK older adults face adversity in areas of health, bereavement and relationships which are associated with depression. This has clinical relevance for psychological interventions for older adults to consider social context and social support. It helps identify the strengths and weaknesses of a brief adversity measure in large scale research. Further research is needed to explore the mechanisms of onset and direction of causality.

Non-suicidal reasons for self-harm: A systematic review of self-reported accounts.

BACKGROUND: Self-harm is a major public health problem yet current healthcare provision is widely regarded as inadequate. One of the barriers to effective healthcare is the lack of a clear understanding of the functions self-harm may serve for the individual. The aim of this review is to identify first-hand accounts of the reasons for self-harm from the individual's perspective. METHOD: A systematic review of the literature reporting first-hand accounts of the reasons for self-harm other than intent to die. A thematic analysis and 'best fit' framework synthesis was undertaken to classify the responses. RESULTS: The most widely researched non-suicidal reasons for self-harm were dealing with distress and exerting interpersonal influence. However, many first-hand accounts included reasons such as self-validation, and self-harm to achieve a personal sense of mastery, which suggests individuals thought there were positive or adaptive functions of the act not based only on its social effects. LIMITATIONS: Associations with different sub-population characteristics or with the method of harm were not available from most studies included in the analysis. CONCLUSIONS: Our review identified a number of themes that are relatively neglected in discussions about self-harm, which we summarised as self-harm as a positiveexperience and defining the self. These self-reported "positive" reasons may be important in understanding and responding especially to repeated acts of self-harm.

Using the structure of social networks to map inter-agency relationships in public health services.

This article investigates network governance in the context of health and wellbeing services in England, focussing on relationships between managers in a range of services. There are three aims, namely to investigate, (i) the configurations of networks, (ii) the stability of network relationships over time and, (iii) the balance between formal and informal ties that underpin inter-agency relationships. Latent position cluster network models were used to characterise relationships. Managers were asked two questions, both designed to characterise informal relationships. The resulting networks differed substantially from one another in membership. Managers described networks of relationships that spanned organisational boundaries, and that changed substantially over time. The findings suggest that inter-agency co-ordination depends more on informal than on formal relationships.

Supported self-management for adults with type 2 diabetes and a learning disability (OK-Diabetes): study protocol for a randomised controlled feasibility trial.

BACKGROUND: Individuals with a learning disability (LD) are at higher risk of developing type 2 diabetes, but LD is not straightforward to define or identify, especially at the milder end of the spectrum, which makes case finding difficult. While supported self-management of health problems is now established, current material is largely educational and didactic with little that facilitates behavioural change. The interaction between the person with diabetes and others supporting their care is also largely unknown. For these reasons, there is considerable work needed to prepare for a definitive trial. The aim of this paper is to publish the abridged protocol of this preparatory work. METHODS/DESIGN: Phase I is a prospective case-finding study (target n = 120 to 350) to identify and characterise potential participants, while developing a standardised supported self-management intervention. Phase II is a randomised feasibility trial (target n = 80) with blinded outcome assessment. Patients identified in Phase I will be interviewed and consented prior to being randomised to (1) standard treatment, or (2) supported self-management. Both arms will also be provided with an 'easy read' accessible information resource on managing type 2 diabetes. The intervention will be standardised but delivered flexibly depending on patient need, including components for the participant, a supporter, and shared activities. Outcomes will be (i) robust estimates of eligibility, consent and recruitment rates with refined recruitment procedures; (ii) characterisation of the eligible population; (iii) a standardised intervention with associated written materials, (iv) adherence and negative outcomes measures; (v) preliminary estimates of adherence, acceptability, follow-up and missing data rates, along with refined procedures; and (vi) description of standard treatment. DISCUSSION: Our study will provide important information on the nature of type 2 diabetes in adults with LD living in the community, on the challenges of identifying those with milder LD, and on the possibilities of evaluating a standardised intervention to improve self-management in this population. TRIAL REGISTRATION: Current Controlled Trials ISRCTN41897033 (registered 21 January 2013).

Measuring patient-perceived continuity of care for patients with long-term conditions in primary care.

BACKGROUND: Continuity of care is widely acknowledged as important for patients with multi-morbidity but simple, service-orientated indices cannot capture the full impact of continuity in complex care delivery systems. The patient's perspective is important to assess outcomes fully and this is challenging because generic measures of patient-perceived continuity are lacking. We investigate the Chao Perception of Continuity (Chao PC) scale to determine its suitability as a measure of continuity of care for patients with a long-term condition (stroke), and co-morbidity, in a primary care setting. DESIGN AND SETTING: A questionnaire study embedded in a prospective observational cohort study of outcomes for patients following acute stroke. PARTICIPANTS: 168 community dwelling patients (58% male) mean age 68 years a minimum one year post-stroke. Functional status: Barthel Index mean =16. INTERVENTION: A 23-item questionnaire, the Chao Perception of Continuity (Chao PC) scale, sent by post to their place of residence or administered face to face as part of the final cohort study assessment. RESULTS: 310 patients were invited to participate; 168 (54%) completed a questionnaire. All 23 questionnaire items were entered into a Principal Component Analysis. Emergent factors from the exploratory analysis were (1) inter-personal trust (relational continuity); (2) interpersonal knowledge and information (informational and relational continuity) and (3) the process of care (managerial continuity). The strongest of these was inter-personal trust. CONCLUSION: The context-specific items in the Chao PC scale are difficult for respondents to interpret in a United Kingdom Primary Care setting resulting in missing data and low response rates. The Chao-PC therefore cannot be recommended for wider application as a general measure of continuity of care without significant modification. Our findings reflect the acknowledged dimensions of continuity and support the concept of continuity of care as a multi-dimensional construct. We demonstrate the overlapping boundaries across the dimensions in the factor structure derived. Trust and interpersonal knowledge are clearly identified as valuable components of any patient-perceived measure of continuity of care.

Patients understanding of depression associated with chronic physical illness: a qualitative study.

BACKGROUND: Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. We explored patient beliefs about the nature of depression associated with physical illness. METHODS: A qualitative interview study of patients registered with general practices in Leeds, UK. We invited patients with coronary heart disease or diabetes from primary care to participate in semi-structured interviews exploring their beliefs and experiences. We analysed transcripts using a thematic approach, extended to consider narratives as important contextual elements. RESULTS: We interviewed 26 patients, including 17 with personal experience of depression. We developed six themes: recognising a problem, complex causality, the role of the primary care, responsibility, resilience, and the role of their life story. Participants did not consistently talk about depression as an illness-like disorder. They described a change in their sense of self against the background of their life stories. Participants were unsure about seeking help from general practitioners (GPs) and felt a personal responsibility to overcome depression themselves. Chronic illness, as opposed to other life pressures, was seen as a justifiable cause of depression. CONCLUSIONS: People with chronic illness do not necessarily regard depression as an easily defined illness, especially outside of the context of their life stories. Efforts to engage patients with chronic illness in the detection and management of depression may need further tailoring to accommodate beliefs about how people view themselves, responsibility and negative views of treatment.