The lived experiences of relatives of autistic adults, and their perceptions of their relationships with autistic adults across multiple age-related transitions and demands: A qualitative interview study with reflexive thematic analysis.

BACKGROUND: There is a need to better understand autism across the life course, including the lives of both autistic people and supporting relatives. As part of a larger mixed methods cohort study involving autistic adults, carers and relatives this sub-study focused on the experiences of relatives alone to learn more about the lives of people from the wider personal networks. Our research questions were: 1. What are the experiences of family members who care for and/or support autistic adults, 2. How can the viewpoints of relatives add to what we know about transitions and challenges experienced by autistic adults, and 3. What strategies/support have been helpful for adults and relatives? METHODS: Relatives of autistic adults were purposively sampled and recruited using the Relatives/Carers cohort from the Adult Autism Spectrum Cohort-UK. 18 participants aged 31-81years who were related to 16 autistic adults aged 18-57years were interviewed for 24-91minutes. Interview transcripts were examined using reflexive thematic analysis. MAIN FINDINGS: Two overarching themes were developed, 'Family support goes a long way in caring for autistic adults' and 'When families turn to society for support' with subthemes. Relatives described benefits they had gained and their admiration for autistic adults. They reflected on how they gave support for independence in various contexts of dependence. They also identified the challenges that both autistic adults and families face navigating support systems (for example for healthcare and employment). An important novel outcome was the advocated value of role-models with lived experience who come from outside of the family. RECOMMENDATIONS: The findings lead to recommendations for: (i) Strategies to reduce the barriers for support that are faced by autistic individuals and relatives during crisis points; (ii) recognition and support for what enables both relatives and autistic adults to function independently (e.g. funded activities, flexible employment); (iii) future planning conversations to include relatives who can enhance knowledge and help plan for future care or support needs for autistic adults and (iv) opportunities for role models (persons with lived experience, autistic adults and relatives) to inspire others and disseminate knowledge. CONCLUSIONS: These findings add valuable insights into the experiences of relatives of autistic adults and challenge the reader to have greater appreciation of the many roles relatives can contribute across time and in a variety of contexts. These perspectives add important information for those working with and planning provision for autistic adults.

"We couldn't think in the box if we tried. We can't even find the damn box": A qualitative study of the lived experiences of autistic adults and relatives of autistic adults.

Autistic children grow to become autistic adults, and autism is increasingly diagnosed in adulthood and later life. This qualitative study aimed to understand experiences of autism throughout adulthood. A national cohort study of autistic adults and relatives of autistic adults (ASC-UK), enabled purposive recruitment of a diverse sample. Semi-structured interviews were conducted with 29 autistic adults (aged 20-71 years), mostly diagnosed in adulthood, and 16 relatives (aged 31-81 years) of autistic adults diagnosed across both childhood and adulthood (including some with learning disability). Interview topics included health, relationships, education, employment, quality of life and everyday experiences. Thematic analysis of the accounts of the autistic adults identified six key themes relating to their experiences: (1) diagnosis as validating yet limiting; (2) supportive and non-supportive social agents; (3) the "invisibility" of the needs of autistic adults; (4) health in the context of autism; (5) staying 'outside' the circle; and (6) multiple lives with autism. Data from relatives about autistic adult experiences gave additional perspectives on these themes. Experiences reported in other studies-of 'difference' from others, challenges of social engagement, and learning to 'conform' to society's expectations-were evident and relevant to male and female autistic adults, across all age groups, and unrelated to stage of life when diagnosed. Some expressed disappointment with their lives, but others were proud of their achievements. Education and employment, whilst challenging for many, were also rewarding for some. Health care and social services were often experienced as inaccessible, inappropriate, or lacking understanding of the individual's needs. We conclude that greater public understanding of autism as experienced in adulthood is needed. Key priorities are improving the availability of 'appropriate' health and social care services for autistic adults and families, and providing practical support to enable enhanced participation in life.

The Recognition-Response Gap in Acute Stroke: Examining the Relationship between Stroke Recognition and Response in a General Population Survey.

BACKGROUND: Benefits of reperfusion therapies in acute ischemic stroke are highly time-dependent. It is crucial that people who witness the onset of symptoms call emergency medical services (EMS) immediately. The aim of this study was to examine whether there is a gap between recognition of stroke and responding correctly by calling EMS using a scenario-based measure. METHODS: Population-based survey of 1406 individuals from Newcastle upon Tyne, UK, examining stroke recognition and response knowledge using 12 scenario-based vignettes. The response rate was 32% out of 5000 contacted individuals. In total, 16,574 responses to scenarios were examined to investigate whether respondents would recognise stroke symptoms and indicate to call EMS immediately. RESULTS: In 16% of cases people recognised stroke but did not correctly respond by indicating to call EMS. In 49% of responses people recognised stroke and would respond correctly, while in 31% of cases people both failed to correctly recognise and failed to identify the correct response to the stroke scenario. In 5% of cases stroke was not identified but a correct response was indicated. When stroke was recognised, in 25% of responses people indicated that they would not call EMS. Recognition self-efficacy and response self-efficacy were associated with correct response. CONCLUSIONS: A recognition-response gap was identified among UK adults in hypothetical scenarios concerning stroke. Both recognition and translation to adequate EMS response should be explicitly addressed in interventions aiming to improve witness response to stroke. Self-efficacy may be a promising target to close the recognition-response gap.

Cluster randomised controlled trial of a theory-based multiple behaviour change intervention aimed at healthcare professionals to improve their management of type 2 diabetes in primary care.

BACKGROUND: National diabetes audits in the UK show room for improvement in the quality of care delivered to people with type 2 diabetes in primary care. Systematic reviews of quality improvement interventions show that such approaches can be effective but there is wide variability between trials and little understanding concerning what explains this variability. A national cohort study of primary care across 99 UK practices identified modifiable predictors of healthcare professionals' prescribing, advising and foot examination. Our objective was to evaluate the effectiveness of an implementation intervention to improve six guideline-recommended health professional behaviours in managing type 2 diabetes in primary care: prescribing for blood pressure and glycaemic control, providing physical activity and nutrition advice and providing updated diabetes education and foot examination. METHODS: Two-armed cluster randomised trial involving 44 general practices. Primary outcomes (at 12 months follow-up): from electronic medical records, the proportion of patients receiving additional prescriptions for blood pressure and insulin initiation for glycaemic control and having a foot examination; and from a patient survey of a random sample of 100 patients per practice, reported receipt of updated diabetes education and physical activity and nutrition advice. RESULTS: The implementation intervention did not lead to statistically significant improvement on any of the six clinical behaviours. 1,138,105 prescriptions were assessed. Intervention (29% to 37% patients) and control arms (31% to 35%) increased insulin initiation relative to baseline but were not statistically significantly different at follow-up (IRR 1.18, 95%CI 0.95-1.48). Intervention (45% to 53%) and control practices (45% to 50%) increased blood pressure prescription from baseline to follow-up but were not statistically significantly different at follow-up (IRR 1.05, 95%CI 0.96 to 1.16). Intervention (75 to 78%) and control practices (74 to 79%) increased foot examination relative to baseline; control practices increased statistically significantly more (OR 0.84, 95%CI 0.75-0.94). Fewer patients in intervention (33%) than control practices (40%) reported receiving updated diabetes education (OR = 0.74, 95%CI 0.57-0.97). No statistically significant differences were observed in patient reports of having had a discussion about nutrition (intervention = 73%; control = 72%; OR = 0.98, 95%CI 0.59-1.64) or physical activity (intervention = 57%; control = 62%; OR = 0.79, 95%CI 0.56-1.11). Development and delivery of the intervention cost £1191 per practice. CONCLUSIONS: There was no measurable benefit to practices' participation in this intervention. Despite widespread use of outreach interventions worldwide, there is a need to better understand which techniques at which intensity are optimally suited to address the multiple clinical behaviours involved in improving care for type 2 diabetes. TRIAL REGISTRATION: ISRCTN, ISRCTN66498413 . Registered April 4, 2013.

Differences Between US and UK Adults in Stroke Preparedness: Evidence From Parallel Population-Based Community Surveys.

BACKGROUND AND PURPOSE: Although time-dependent treatment is available, most people delay contacting emergency medical services for stroke. Given differences in the healthcare system and public health campaigns, exploring between-country differences in stroke preparedness may identify novel ways to increase acute stroke treatment. METHODS: A survey was mailed to population-based samples in Ingham County, Michigan, US (n=2500), and Newcastle upon Tyne, UK (n=2500). Surveys included stroke perceptions and stroke/nonstroke scenarios to assess recognition and response to stroke. Between-country differences and associations with stroke preparedness were examined using t tests and linear mixed models. RESULTS: Overall response rate was 27.4%. The mean age of participants was 55 years, and 58% were female. US participants were better in recognizing stroke (70% versus 63%, d=0.27) and were more likely to call emergency medical services (55% versus 52%, d=0.11). After controlling for demographics and comorbidities, US participants remained more likely to recognize stroke but were not more likely to respond appropriately. A greater belief that medical treatment can help with stroke and understanding of stroke was associated with improved stroke recognition and response. CONCLUSIONS: Overall, stroke recognition and response were moderate. US participants were modestly better at recognizing stroke, although there was little difference in response to stroke. Future stroke awareness interventions could focus more on stroke outcome expectations and developing a greater understanding of stroke among the public.

The stroke 'Act FAST' campaign: remembered but not understood?

BACKGROUND: The stroke awareness raising campaign 'Act FAST' (Face, Arms, Speech: Time to call Emergency Medical Services) has been rolled out in multiple waves in England, but impact on stroke recognition and response remains unclear. PURPOSE: The purpose of this study was to test whether providing knowledge of the FAST acronym through a standard Act FAST campaign leaflet increases accurate recognition and response in stroke-based scenario measures. METHODS: This is a population-based, cross-sectional survey of adults in Newcastle upon Tyne, UK, sampled using the electoral register, with individuals randomized to receive a questionnaire and Act FAST leaflet (n = 2500) or a questionnaire only (n = 2500) in 2012. Campaign message retention, stroke recognition, and response measured through 16 scenario-based vignettes were assessed. Data were analyzed in 2013. RESULTS: Questionnaire return rate was 32.3% (n = 1615). No differences were found between the leaflet and no-leaflet groups in return rate or demographics. Participants who received a leaflet showed better campaign recall (75.7% vs. 68.2%, P = 0.003) and recalled more FAST mnemonic elements (66.1% vs. 45.3% elements named correctly, P < 0.001). However, there were no between-group differences for stroke recognition and response to stroke-based scenarios (P > 0.05). CONCLUSIONS: Despite greater levels of recall of specific 'Act FAST' elements among those receiving the Act FAST leaflet, there was no impact on stroke recognition and response measures.

Improving Diabetes care through Examining, Advising, and prescribing (IDEA): protocol for a theory-based cluster randomised controlled trial of a multiple behaviour change intervention aimed at primary healthcare professionals.

BACKGROUND: New clinical research findings may require clinicians to change their behaviour to provide high-quality care to people with type 2 diabetes, likely requiring them to change multiple different clinical behaviours. The present study builds on findings from a UK-wide study of theory-based behavioural and organisational factors associated with prescribing, advising, and examining consistent with high-quality diabetes care. AIM: To develop and evaluate the effectiveness and cost of an intervention to improve multiple behaviours in clinicians involved in delivering high-quality care for type 2 diabetes. DESIGN/METHODS: We will conduct a two-armed cluster randomised controlled trial in 44 general practices in the North East of England to evaluate a theory-based behaviour change intervention. We will target improvement in six underperformed clinical behaviours highlighted in quality standards for type 2 diabetes: prescribing for hypertension; prescribing for glycaemic control; providing physical activity advice; providing nutrition advice; providing on-going education; and ensuring that feet have been examined. The primary outcome will be the proportion of patients appropriately prescribed and examined (using anonymised computer records), and advised (using anonymous patient surveys) at 12 months. We will use behaviour change techniques targeting motivational, volitional, and impulsive factors that we have previously demonstrated to be predictive of multiple health professional behaviours involved in high-quality type 2 diabetes care. We will also investigate whether the intervention was delivered as designed (fidelity) by coding audiotaped workshops and interventionist delivery reports, and operated as hypothesised (process evaluation) by analysing responses to theory-based postal questionnaires. In addition, we will conduct post-trial qualitative interviews with practice teams to further inform the process evaluation, and a post-trial economic analysis to estimate the costs of the intervention and cost of service use. DISCUSSION: Consistent with UK Medical Research Council guidance and building on previous development research, this pragmatic cluster randomised trial will evaluate the effectiveness of a theory-based complex intervention focusing on changing multiple clinical behaviours to improve quality of diabetes care. TRIAL REGISTRATION: ISRCTN66498413.

The impact of the UK 'Act FAST' stroke awareness campaign: content analysis of patients, witness and primary care clinicians' perceptions.

BACKGROUND: The English mass media campaign 'Act FAST' aimed to raise stroke awareness and the need to call emergency services at the onset of suspected stroke. We examined the perceived impact and views of the campaign in target populations to identify potential ways to optimise mass-media interventions for stroke. METHODS: Analysis of semi-structured interviews conducted as part of two qualitative studies, which examined factors influencing patient/witness response to acute stroke symptoms (n = 19 stroke patients, n = 26 stroke witnesses) and perceptions about raising stroke awareness in primary care (n = 30 clinicians). Both studies included questions about the 'Act FAST' campaign. Interviews were content analysed to determine campaign awareness, perceived impact on decisions and response to stroke, and views of the campaign. RESULTS: Most participants were aware of the Act FAST campaign. Some patients and witnesses reported that the campaign impacted upon their stroke recognition and response, but the majority reported no impact. Clinicians often perceived campaign success in raising stroke awareness, but few thought it would change response behaviours. Some patients and witnesses, and most primary care clinicians expressed positive views towards the campaign. Some more critical participant comments included perceptions of dramatic, irrelevant, and potentially confusing content, such as a prominent 'fire in the brain' analogy. CONCLUSIONS: Act FAST has had some perceived impact on stroke recognition and response in some stroke patients and witnesses, but the majority reported no campaign impact. Primary care clinicians were positive about the campaign, and believed it had impacted on stroke awareness and recognition but doubted impact on response behaviour. Potential avenues for optimising and complementing mass media campaigns such as 'Act FAST' were identified.

Why people do, or do not, immediately contact emergency medical services following the onset of acute stroke: qualitative interview study.

OBJECTIVES: To identify the reasons why individuals contact, or delay contacting, emergency medical services in response to stroke symptoms. DESIGN: Qualitative interview study with a purposive sample of stroke patients and witnesses, selected according to method of accessing medical care and the time taken to do so. Data were analysed using the Framework approach. SETTING: Area covered by three acute stroke units in the north east of England. PARTICIPANTS: Nineteen stroke patients and 26 witnesses who had called for help following the onset of stroke symptoms. RESULTS: Factors influencing who called emergency medical services and when they called included stroke severity, how people made sense of symptoms and their level of motivation to seek help. Fear of the consequences of stroke, including future dependence or disruption to family life, previous negative experience of hospitals, or involving a friend or relations in the decision to access medical services, all resulted in delayed admission. Lack of knowledge of stroke symptoms was also an important determinant. Perceptions of the remit of medical services were a major cause of delays in admission, with many people believing the most appropriate action was to telephone their GP. Variations in the response of primary care teams to acute stroke symptoms were also evident. CONCLUSIONS: The factors influencing help-seeking decisions are complex. There remains a need to improve recognition by patients, witnesses and health care staff of the need to treat stroke as a medical emergency by calling emergency medical services, as well as increasing knowledge of symptoms of stroke among patients and potential witnesses. Fear, denial and reticence to impose on others hinders the process of seeking help and will need addressing specifically with appropriate interventions. Variability in how primary care services respond to stroke needs further investigation to inform interventions to promote best practice. TRIAL REGISTRATION: UK Clinical Research Network UKCRN 6590.

Witness response at acute onset of stroke: a qualitative theory-guided study.

BACKGROUND: Delay in calling emergency medical services following stroke limits access to early treatment that can reduce disability. Emergency medical services contact is mostly initiated by stroke witnesses (often relatives), rather than stroke patients. This study explored appraisal and behavioural factors that are potentially important in influencing witness behaviour in response to stroke. METHODS AND FINDINGS: Semi-structured interviews with 26 stroke witnesses were transcribed and theory-guided content analysed was undertaken based on the Common Sense Self-Regulation Model (appraisal processes) and Theory Domains Framework (behavioural determinants). Response behaviours were often influenced by heuristics-guided appraisal (i.e. mental rules of thumb). Some witnesses described their responses to the situation as 'automatic' and 'instinctive', rather than products of deliberation. Potential behavioural influences included: environmental context and resources (e.g. time of day), social influence (e.g. prompts from patients) and beliefs about consequences (e.g. 999 accesses rapid help). Findings are based on retrospective accounts and need further verification in prospective studies. CONCLUSIONS: Witnesses play a key role in patient access to emergency medical services. Factors that potentially influence witnesses' responses to stroke were identified and could inform behavioural interventions and future research. Interventions might benefit from linking automatic/instinctive threat perceptions with deliberate appraisal of stroke symptoms, prompting action to call emergency medical services.

Situationally-sensitive knowledge translation and relational decision making in hyperacute stroke: a qualitative study.

Stroke is a leading cause of disability. Early treatment of acute ischaemic stroke with rtPA reduces the risk of longer term dependency but carries an increased risk of causing immediate bleeding complications. To understand the challenges of knowledge translation and decision making about treatment with rtPA in hyperacute stroke and hence to inform development of appropriate decision support we interviewed patients, their family and health professionals. The emergency setting and the symptomatic effects of hyper-acute stroke shaped the form, content and manner of knowledge translation to support decision making. Decision making about rtPA in hyperacute stroke presented three conundrums for patients, family and clinicians. 1) How to allow time for reflection in a severely time-limited setting. 2) How to facilitate knowledge translation regarding important treatment risks and benefits when patient and family capacity is blunted by the effects and shock of stroke. 3) How to ensure patient and family views are taken into account when the situation produces reliance on the expertise of clinicians. Strategies adopted to meet these conundrums were fourfold: face to face communication; shaping decisions; incremental provision of information; and communication tailored to the individual patient. Relational forms of interaction were understood to engender trust and allay anxiety. Shaping decisions with patients was understood as an expression of confidence by clinicians that helped alleviate anxiety and offered hope and reassurance to patients and their family experiencing the shock of the stroke event. Neutral presentations of information and treatment options promoted uncertainty and contributed to anxiety. 'Drip feeding' information created moments for reflection: clinicians literally made time. Tailoring information to the particular patient and family situation allowed clinicians to account for social and emotional contexts. The principal responses to the challenges of decision making about rtPA in hyperacute stroke were relational decision support and situationally-sensitive knowledge translation.

Evidence from the scene: paramedic perspectives on involvement in out-of-hospital research.

STUDY OBJECTIVE: In the context of calls to develop better systems for out-of-hospital clinical research, we seek to understand paramedics' perceptions of involvement in research and the barriers and facilitators to that involvement. METHODS: This was a qualitative study using semistructured focus groups with 58 United Kingdom paramedics and interviews with 30 US firefighter-paramedics. The study focused on out-of-hospital research (trials of out-of-hospital treatment for stroke), whereby paramedics identified potential study subjects or obtained consent and administered study treatment in the field. Data were analyzed with a thematic and discourse approach. RESULTS: Three key themes emerged as significant facilitators and barriers to paramedic involvement in research: patient benefit, professional identity and responsibility, and time. Paramedics showed willingness and capacity to engage in research but also some reticence because of the perceived sacrifice of autonomy and challenge to their identity. Paramedics work in a time-sensitive environment and were concerned that research would increase time taken in the field. CONCLUSION: Awareness of these perspectives will help with development of out-of-hospital research protocols and potentially facilitate greater participation.

Older people's experience of proactive welfare rights advice: qualitative study of a South Asian community.

OBJECTIVES: Many older people in the UK require means-tested and health-related benefits to supplement low incomes in retirement and pay for additional resources required to cope with ill-health. Ethnic minority older people have lower uptake of welfare services than white older people. This study investigated routes to the service, barriers to claiming and explored the impact of additional financial resources among ethnic minority elders by evaluating a novel welfare rights advice service which facilitated access to state benefit entitlements. DESIGN: Qualitative study using data from one-to-one interviews with ethnic minority elders from Newcastle upon Tyne, UK analysed using the Framework method. Participants were recruited to this study from among ethnic minority elders attending a full benefits assessment offered by Newcastle Welfare Rights Service. RESULTS: Twenty-two South Asian participants aged between 50 and 81 were interviewed. Nineteen participants were above state retirement age, 15 of whom were on means-tested state benefits. Knowledge of state entitlements was extremely low. Sixteen qualified for non-means-tested health benefits; six qualified for further means-tested state benefits. Additional resources had a considerable impact on participants and their families. Participants could better afford essential items such as food, bills, shoes, clothes and 'one off' payments. Less stress, increased independence and better quality of life were reported. Welfare rights advice also had a positive impact on carers, none of whom knew what they or their relatives were entitled to. CONCLUSIONS: As with older people of all backgrounds, facilitating access to state benefit entitlements with appropriate services is an important way of increasing the resources of ethnic minority older people on low incomes and/or in poor health. Such services can also significantly improve quality of life for carers. As the numbers of ethnic minority older people will rise over the next few decades, it is necessary to meet this need with linguistically and culturally appropriate welfare rights services. To do otherwise will exacerbate existing income and health inequalities.

Randomised controlled trial of welfare rights advice accessed via primary health care: pilot study [ISRCTN61522618].

BACKGROUND: Little research has directly evaluated the impact of increasing financial or material resources on health. One way of assessing this lies with assisting people to obtain full welfare benefit entitlements. In 2000-1, 2.3 million pensioners were living in poverty in the UK and estimates suggest that around one million do not claim the financial support to which they are entitled. The effectiveness of welfare rights advice services delivered via primary health care to promote health and reduce health inequalities is unknown. METHODS: The main objectives of this study were to assess the feasibility and acceptability of a randomised controlled trial of welfare rights advice in a community setting and identify appropriate health and social outcome measures in order to plan a definitive trial. This was a single blind, community-based, pilot randomised controlled trial. 126 men and women aged 60 years and over, recruited from 4 general practices in Newcastle upon Tyne, UK, participated. The intervention comprised a structured welfare rights assessment followed by active assistance with welfare benefit claims over the following 24 months. The control group received the intervention after a six month delay. A range of socio-economic, health, behavioural and psycho-social outcomes were measured. RESULTS: 126 out of 400 people invited agreed to participate and 109 were followed up at 24 months. Both the intervention and research procedures were feasible and acceptable to participants and professionals involved. 68 (58%) of all participants received a welfare benefit award (31 financial, 16 non-financial and 21 both). Median time to receipt of benefits from initial assessment was 14 (range 1 to 78) weeks and median financial award was pounds 55 (Euro 81, dollar 98) per household per week. There was little evidence of health-related differences between groups or over time, which could be due to limitations of the study design. CONCLUSION: Modification of the study design, including selection of study participants, timing of interventions and length of follow up are recommended for a definitive trial. More appropriate health and psycho-social outcome measures relevant to the elderly population should be sought, particularly focussing on those issues highlighted in the accompanying qualitative study.

The acceptability and impact of a randomised controlled trial of welfare rights advice accessed via primary health care: qualitative study.

BACKGROUND: Qualitative research is increasingly used alongside randomised controlled trials (RCTs) to study a range of factors including participants' experiences of a trial. The need for a sound evidence base within public health will increase the need for RCTs of non-clinical interventions. Welfare rights advice has been proposed as an intervention with potential to reduce health inequalities. This qualitative study, nested within an RCT of the impact of welfare rights advice, examined the acceptability of the intervention, the acceptability of the research process and the perceived impact of the intervention. METHODS: 25 men and women aged 60 years or over were recruited from four general practices in Newcastle upon Tyne (UK), a sub-sample of those who consented to be contacted (n = 96) during the RCT baseline interview. Semi-structured interviews were undertaken and analysed using the Framework Method. RESULTS: Participants viewed the trial positively although, despite agreeing that the information leaflet was clear, some had agreed to participate without being fully aware of what was involved. Some participants were unaware of the implications of randomisation. Most thought it fair, but a few concerns were raised about the control condition. The intervention was acceptable and made participants feel confident about applying for benefit entitlements. 14 out of 25 participants received some financial award; median weekly income gain was pounds 57 (Euro 84, dollar 101). The perceived impact of additional finances was considerable and included: increased affordability of necessities and occasional expenses; increased capacity to deal with emergencies; and a reduction in stress related to financial worries. Overall, perceived independence and ability to participate in society increased. Most participants perceived benefits to their mental well-being, but no-one reported an improvement in physical health. The RCT showed little or no effect on a wide range of outcome measures. CONCLUSION: Participation in the trial and the intervention was acceptable to participants. Welfare rights advice targeted at people aged 60 years or over and accessed via primary care had a positive impact on quality of life and resulted in increased social participation. The divergence of qualitative and quantitative findings suggests that both methods make important contributions to the evaluation of complex social interventions.

A systematic review of the health, social and financial impacts of welfare rights advice delivered in healthcare settings.

BACKGROUND: Socio-economic variations in health, including variations in health according to wealth and income, have been widely reported. A potential method of improving the health of the most deprived groups is to increase their income. State funded welfare programmes of financial benefits and benefits in kind are common in developed countries. However, there is evidence of widespread under claiming of welfare benefits by those eligible for them. One method of exploring the health effects of income supplementation is, therefore, to measure the health effects of welfare benefit maximisation programmes. We conducted a systematic review of the health, social and financial impacts of welfare rights advice delivered in healthcare settings. METHODS: Published and unpublished literature was accessed through searches of electronic databases, websites and an internet search engine; hand searches of journals; suggestions from experts; and reference lists of relevant publications. Data on the intervention delivered, evaluation performed, and outcome data on health, social and economic measures were abstracted and assessed by pairs of independent reviewers. Results are reported in narrative form. RESULTS: 55 studies were included in the review. Only seven studies included a comparison or control group. There was evidence that welfare rights advice delivered in healthcare settings results in financial benefits. There was little evidence that the advice resulted in measurable health or social benefits. This is primarily due to lack of good quality evidence, rather than evidence of an absence of effect. CONCLUSION: There are good theoretical reasons why income supplementation should improve health, but currently little evidence of adequate robustness and quality to indicate that the impact goes beyond increasing income.

Using quantitative and qualitative data in health services research - what happens when mixed method findings conflict? [ISRCTN61522618].

BACKGROUND: In this methodological paper we document the interpretation of a mixed methods study and outline an approach to dealing with apparent discrepancies between qualitative and quantitative research data in a pilot study evaluating whether welfare rights advice has an impact on health and social outcomes among a population aged 60 and over. METHODS: Quantitative and qualitative data were collected contemporaneously. Quantitative data were collected from 126 men and women aged over 60 within a randomised controlled trial. Participants received a full welfare benefits assessment which successfully identified additional financial and non-financial resources for 60% of them. A range of demographic, health and social outcome measures were assessed at baseline, 6, 12 and 24 month follow up. Qualitative data were collected from a sub-sample of 25 participants purposively selected to take part in individual interviews to examine the perceived impact of welfare rights advice. RESULTS: Separate analysis of the quantitative and qualitative data revealed discrepant findings. The quantitative data showed little evidence of significant differences of a size that would be of practical or clinical interest, suggesting that the intervention had no impact on these outcome measures. The qualitative data suggested wide-ranging impacts, indicating that the intervention had a positive effect. Six ways of further exploring these data were considered: (i) treating the methods as fundamentally different; (ii) exploring the methodological rigour of each component; (iii) exploring dataset comparability; (iv) collecting further data and making further comparisons; (v) exploring the process of the intervention; and (vi) exploring whether the outcomes of the two components match. CONCLUSION: The study demonstrates how using mixed methods can lead to different and sometimes conflicting accounts and, using this six step approach, how such discrepancies can be harnessed to interrogate each dataset more fully. Not only does this enhance the robustness of the study, it may lead to different conclusions from those that would have been drawn through relying on one method alone and demonstrates the value of collecting both types of data within a single study. More widespread use of mixed methods in trials of complex interventions is likely to enhance the overall quality of the evidence base.

Does an early increased-intensity interdisciplinary upper limb therapy programme following acute stroke improve outcome?

OBJECTIVE: To determine whether an early increased-intensity upper limb therapy programme following acute stroke improves outcome. DESIGN: A randomized controlled trial. SETTING: A stroke unit which provides acute care and rehabilitation for all stroke admissions. SUBJECTS: One hundred and twenty-three patients who had had a stroke causing upper limb impairment within the previous 10 days. INTERVENTION: The intervention group received stroke unit care plus enhanced upper limb rehabilitation provided jointly by a physiotherapist and occupational therapist, commencing within 10 days of stroke, and available up to 30 minutes/day, five days/week for six weeks. The control group received stroke unit care. MAIN OUTCOME MEASURES: The primary outcome measure was the Action Research Arm Test (ARAT) three months after stroke. SECONDARY OUTCOME MEASURES: Motricity Index; Frenchay Arm Test; upper limb pain; Barthel ADL Index; Nottingham E-ADL Scale; and costs to health and social services at three and six months after stroke. RESULTS: There were no differences in outcomes between the intervention and control groups three and six months after stroke. During the intervention period the intervention group received a median of 29 minutes of enhanced upper limb therapy per working day as inpatients. The total amount of inpatient physiotherapy and occupational therapy received by the intervention group was a median of 52 minutes per working day during the intervention period and 38 minutes per working day for the control group (p = 0.001). There were no differences in service costs. CONCLUSIONS: An early increased-intensity interdisciplinary upper limb therapy programme jointly provided by a physiotherapist and occupational therapist did not improve outcome after stroke. The actual difference in the amount of therapy received by intervention and control groups was less than planned due to a competitive therapy bias.