The principal aim of this study was to develop, pilot and evaluate an intervention intended to support the development of resilience and self-efficacy in parents of children with disabilities or complex health needs.

Previous research has found that families often experience physical, social and emotional stress in the context of living with and caring for their disabled child. The literature indicates that a key factor in determining how well the parents of these children cope with their situation may be how resilient and self-efficacious they are.

A total of 16 parents of children with complex needs and disabilities were engaged in a series of guided conversations delivered during six contact visits with nurse co-researchers (community children’s nurses who had received an intensive three-day preparation programme). The conversations, which were supported with additional material that was designed specifically for use in the study, were based around four key themes: emotional coping, practical coping, support networks and ‘you and your child’. The impact of the intervention was evaluated using both qualitative and quantitative measures.

When interviewed, parents reported increased self-belief and self-confidence and indicated that they felt better supported and stronger as a result of the intervention. This was consistent with the quantitative evaluation which identified significant improvements on scores for active coping and self-blame on the brief COPE inventory scale and for empathy and understanding and self-acceptance on the TOPSE scale. Scores on the self-report distress thermometer demonstrated a significant reduction in self-reported distress scores at the end of the intervention period.

To synthesize information about management of end of life care in people with dementia using review papers.

There are increasing numbers of people being diagnosed with dementia worldwide, and the needs of people with dementia and their carers at the end of life may be different from those with other chronic diseases. By highlighting the challenges of palliative care in persons with dementia and the ways they are best managed, practitioners in primary care may be able to improve services for this group of people at the end of life.

A search of electronic databases of English language papers published in peer-reviewed journals, 2000–2011 inclusive was undertaken using broad terms related to palliative care and dementia. 6167 papers were identified. Titles and abstracts were read. Papers were included if they were literature reviews of palliative or end of life care for people with dementia/Parkinson's disease/Lewy body dementia/cognitive impairment/Alzheimer's disease or any other cognitive impairment, in any setting (hospital, care home, community) and covering people of all ages. Papers were excluded if they covered palliative care focusing on other conditions, or were about an aspect of dementia care and treatment not related to palliative care.

Our critical synthesis generated five main themes from this review of the reviews: (1) carers’ (family caregivers’) experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia.

This study aims to explore the possible reasons for the lower levels of diagnosis of chronic fatigue syndrome/myalgic encephalitis (CFS/ME) in the black and minority ethnic (BME) population, and the implications for management.

Population studies suggest CFS/ME is more common in people from BME communities compared with the White British population. However, the diagnosis is made less frequently in BME groups.

Semi-structured qualitative interviews were conducted with 35 key stakeholders in NW England. Interviews were analysed using open explorative thematic coding.

There are barriers at every stage to the diagnosis and management of CFS/ME in people from BME groups. This begins with a lack of awareness of CFS/ME among BME respondents. Religious beliefs and the expectation of roles in the family and community mean that some people in BME groups may choose to manage their symptoms outside primary care using alternative therapies, prayer or spiritual healing. When accessing primary care, all participants recognised the possible influence of language barriers in reducing the likelihood of a diagnosis of CFS/ME. Stereotypical beliefs, including labels such as ‘lazy’ or ‘work shy’ were also believed to act as a barrier to diagnosis. Patients highlighted the importance of an on-going relationship with the general practitioner (GP), but perceived a high turnover of GPs in inner city practices, which undermined the holistic approach necessary to achieve a diagnosis.

Training is required for health professionals to challenge inaccurate assumptions about CFS/ME in BME groups. The focus on the individual in UK primary care may not be appropriate for this group due to the role played by the family and community in how symptoms can be presented and managed. Culturally sensitive, educational resources for patients are also needed to explain symptoms and legitimise consultation.

To assess the effectiveness of supported employment interventions for improving competitive employment in populations of people with conditions other than only severe mental illness.

Supported employment interventions have been extensively tested in severe mental illness populations. These approaches may be beneficial outside of these populations.

We searched PubMed, Embase, CINAHL, PsycInfo, Web of Science, Scopus, JSTOR, PEDro, OTSeeker, and NIOSHTIC for trials including unemployed people with any condition and including severe mental illness if combined with other co-morbidities or other specific circumstances (e.g., homelessness). We excluded trials where inclusion was based on severe mental illness alone. Two reviewers independently assessed risk of bias (RoB v2.0) and four reviewers extracted data. We assessed rates of competitive employment as compared to traditional vocational rehabilitation or waiting list/services as usual.

Ten randomised controlled trials (913 participants) were included. Supported employment was more effective than control interventions for improving competitive employment in seven trials: in people with affective disorders [risk ratio (RR) 10.61 (1.49, 75.38)]; mental disorders and justice involvement [RR 4.44 (1.36,14.46)]; veterans with posttraumatic stress disorder (PTSD) [RR 2.73 (1.64, 4.54)]; formerly incarcerated veterans [RR 2.17 (1.09, 4.33)]; people receiving methadone treatment [RR 11.5 (1.62, 81.8)]; veterans with spinal cord injury at 12 months [RR 2.46 (1.16, 5.22)] and at 24 months [RR 2.81 (1.98, 7.37)]; and young people not in employment, education, or training [RR 5.90 (1.91–18.19)]. Three trials did not show significant benefits from supported employment: populations of workers with musculoskeletal injuries [RR 1.38 (1.00, 1.89)]; substance abuse [RR 1.85 (0.65, 5.41)]; and formerly homeless people with mental illness [RR 1.55 (0.76, 3.15)]. Supported employment interventions may be beneficial to people from more diverse populations than those with severe mental illness alone. Defining competitive employment and increasing (and standardising) measurement of non-vocational outcomes may help to improve research in this area.

Are there differences in diabetes care between rural and non-rural US adults with diabetes?

Rural Healthy People 2010 includes diabetes as a major health priority, suggesting a possible disparity between diabetes care in rural settings as compared to non-rural locales.

This cross-sectional study using population-based survey data sought to determine if there was a difference in the quality of diabetes care between rural and non-rural US adults (⩾18 years). A diabetes care index was computed from five separate dichotomous care-related variables (HbA1c checked, lipids checked, dilated eye exam, feet checked by health care provider, and diabetes education), with adequate care defined as receiving at least four of these interventions. Multivariate methods were used to detect differences in diabetes care received by individuals living in rural compared to non-rural settings.

Multivariate regression analysis revealed that US adults with diabetes living in rural communities were more likely to receive inadequate care than non-rural residents (OR = 1.205; 95% CI 1.201, 1.209). Rural residents were more likely to receive inadequate diabetes care if they were: <40 years of age, male, Caucasian, not a high school graduate, not partnered, without health insurance, inactive or without an identified health care provider. Those deferring medical care because of cost, or who did not have an annual routine physical or had fewer than two diabetes related office visits annually were also at greater risk for suboptimal care. Routine physical checkups and deferring medical care because of cost had a greater impact on diabetes care for rural adults compared to non-rural adults.

The results of this study indicated that rural residents were less likely to receive adequate diabetes care compared to their non-rural counterparts. The findings suggest that efforts to identify and to address this disparity would likely improve the outcomes for diabetic individuals living in rural communities.

This non-randomized pre–post-intervention study investigated the effect of a systemic public health intervention on the length of time between anorexia nervosa symptom onset and contact with the health care system as well as the initiation of treatment.

Although systemic public health interventions have successfully been implemented in physical and mental health fields, their effect on the early treatment of patients with anorexia nervosa remains unclear.

In total, 59 anorexia nervosa patients (mean age=21.5 years, SD=7.2) were recruited before a systemic public health intervention, and 18 patients (mean age=22.2 years, SD=8.9) were recruited afterwards. Using validated self-report measures and a semi-structured interview, the duration of untreated anorexia nervosa and the duration until first contact with the health care system were investigated.

At the beginning of the individual treatment initiation process, participants in both samples most frequently consulted their general practitioner or paediatrician about their eating disorder-related symptoms. Neither the mean duration of untreated anorexia nervosa, that is, the time between illness onset and the initiation of a recommended treatment, nor the duration until first contact with the health care system significantly decreased after the implementation of the systemic public health intervention. The mean duration of untreated anorexia nervosa was 36.5 months (SD=68.2) before the systemic public health intervention and 40.1 months (SD=89.4) after the implementation of the systemic public health intervention. The mean duration until first contact with the health care system was 25.0 months (SD=53.0) before the intervention and 32.8 months (SD=86.5) after the intervention.

Primary care providers are crucial to the treatment initiation process and should be involved in future interventions to improve early detection and treatment commencement amongst patients with anorexia nervosa.

This review aims are to (1) identify relevant quantitative research on parental childhood vaccine hesitancy with vaccine uptake and vaccination intention being relevant outcomes and (2) map the gaps in knowledge on vaccine hesitancy to develop suggestions for further research and to guide interventions in this field.

Vaccine hesitancy recognises a continuum between vaccine acceptance and vaccine refusal, de-polarising past anti-vaccine, and pro-vaccine categorisations of individuals and groups. Vaccine hesitancy poses a serious challenge to international efforts to lessen the burden of vaccine-preventable diseases. Potential vaccination barriers must be identified to inform initiatives aimed at increasing vaccine awareness, acceptance, and uptake.

Five databases were searched for peer-reviewed articles published between 1998 and 2020 in the fields of medicine, nursing, public health, biological sciences, and social sciences. Across these datasets, a comprehensive search technique was used to identify multiple variables of public trust, confidence, and hesitancy about vaccines. Using PRISMA guidelines, 34 papers were included so long as they focused on childhood immunisations, employed multivariate analysis, and were published during the time frame. Significant challenges to vaccine uptake or intention were identified in these studies. Barriers to vaccination for the target populations were grouped using conceptual frameworks based on the Protection Motivation Theory and the World Health Organization’s Strategic Advisory Group of Experts on Immunization Working Group model and explored using the 5C psychological antecedents of vaccination.

Although several characteristics were shown to relate to vaccine hesitancy, they do not allow for a thorough classification or proof of their individual and comparative level of influence. Understudied themes were also discovered during the review. Lack of confidence, complacency, constraints, calculation, and collective responsibility have all been highlighted as barriers to vaccination uptake among parents to different degrees.

The aim of this paper is to identify and descriptively map the key characteristics of the model of service delivery in operation, and to explore the user, carer and professional experience of service provision. This included an exploration of congruity and mismatch between the different stakeholder groups.

In the United Kingdom (UK), 15% of the children under five years of age and 20% of the 5 to 15-year age group are reported to have a complex long-term condition, with the likelihood of having a condition increasing according to socio-economic circumstances. An increasing number of young people with complex needs are now surviving into late adolescence and early adulthood. However, service provision for children with complex needs is an area that, nationally, has been underdeveloped.

An exploratory single-site case study was undertaken across one Primary Care Trust in the UK. Documentary and policy review were undertaken along with in-depth qualitative exploration. Eighteen in-depth interviews were undertaken with relevant stakeholders and professionals across the multidisciplinary teams. Families with children between 12 months and 16 years of age who have continuing complex care needs were invited to take part in an interview to give their views about the care they receive. Interviews focused on the family experience and understanding of the child's condition, transition between secondary and primary care, effectiveness of admission and discharge planning and the overall contribution of different professionals. Professionals were also asked about their experiences of delivering care.

This study highlighted issues of communication between professionals and with parents and children as a major factor in determining the quality of service provision. Key aspects relating to the model of service provision, namely, paucity of communication, interagency collaboration and the parent as health worker, are highlighted.

Parents experienced both health and social service communication challenges when seeking care for their child. These challenges can be located within a general systems theory and hierarchy approaches to understand the complexity of service provision.

To explore the experiences and challenges for residential care home staff when managing the healthcare needs of their residents, in particular those living with dementia.

Increasing number of older people, with complex health and social care needs are living in residential care homes. Yet there is limited appreciation of why staff sometimes struggle to manage residents’ healthcare needs, or understanding of their working relationship with district nurses (DNs), whose responsibility it is to provide nursing support.

This PhD study, in a metropolitan area in the United Kingdom, was conducted by an experienced DN and involved three phases. This paper focuses on the first two phases. Phase 1 data included: semi-structured interviews (n=8), reflective field notes based on non-participant observation, documentary analysis of policies, procedures and assessment tools and other contextual data from one care home (case study site). The practitioner researcher reflected on the findings from the case study, in relation to her own knowledge and experience as a DN, focusing in particular on findings that were familiar, or which surprised. In Phase 2 she fed these findings back to other care homes (n=11) to check whether the findings from the single case study were unique or resonated with others. She gathered their feedback through semi-structured interviews with senior care staff (n=14). Data were analysed using thematic data analysis.

Findings highlight the complexity facing residential care homes: high levels of healthcare needs amongst residents, the demands of caring for residents living with dementia, variations in the knowledge and skill set of care staff, inequity in the level of healthcare support, the challenges of building a good relationship with DNs, and funding pressures facing care homes.

Any, or all of these factors can prevent care home staff from managing the healthcare needs of their residents.

The chronic care model (CCM) has been widely used in a variety of health care settings to guide system improvement for chronic illness care, including diabetes care. However, the evidence base for the specific components of the model has not been systematically reviewed. This review aimed at examining the extent to which interventions featuring the CCM components improve diabetes care and determining the relative effectiveness of different CCM components.

We systematically searched MEDLINE (1966 to December 2004), the Cochrane Effective Practice and Organisation of Care and the Cochrane Controlled Trials Register to identify interventions featuring one or more system components of the CCM for diabetes care. Outcome measures included HbA1c, blood pressure and blood lipid control. We used random-effects meta-analysis and meta-regression for quantitative synthesis of data.

In all, 69 studies (43 randomized controlled trials and 26 controlled before–after studies) met inclusion criteria and were included in this review. Overall, included studies reported a mean reduction of 0.46% (95% CI 0.38, 0.54) in HbA1c, mean reduction of 2.2 (95% CI 0.9, 3.5) mmHg in systolic blood pressure, mean reduction of 1.3 (95% CI 0.6, 2.1) mmHg in diastolic blood pressure and mean reduction of 0.24 (95% CI 0.06, 0.41) mmol/L in total cholesterol. For specific CCM components, interventions that addressed delivery system design reported the largest improvements in patient outcomes, followed by those employing a self-management support component. Interventions involving decision support or clinical information systems reported relatively smaller effect sizes.

Interventions featuring CCM components for diabetes care produced small-to-moderate improvements in a range of patient intermediate outcomes. The findings support the concept of the CCM in which the state of development of various aspects of primary care service systems defined in this model appear to be important factors in the quality of care provided to people with diabetes.

To describe the natural history of acute upper respiratory tract infections (AURIs) in primary-school children, by recording their daily symptoms.

AURIs in children are one of the most common reasons for people seeking advice from general practitioners (GPs); however, little is known about the natural history of AURIs in terms of the length and severity of symptoms, because the majority of illnesses are contracted at home.

After an initial pilot study to test the feasibility of parents recording symptoms in a diary based on the Canadian Acute Respiratory Illness and Flu Scale (CARIFS), a random selection of primary schools operating in the region was carried out in order to minimise selection bias. Meetings were arranged at the 20 schools to obtain written consent from parents and to give out diaries with a stamped addressed envelope. The diaries recorded daily symptom severity for one episode of AURI, and the data were analysed using SPSS programmes.

Diaries were returned from 223 children, of whom 146 had had an AURI. The average age was eight years, and there were almost equal numbers of boys and girls. The most frequent symptoms were runny nose, cough, feeling unwell and sore throat. There was a biphasic distribution with systemic symptoms in the first three days characterised by fever, poor sleep, irritability, not playing and headache. By day four, symptoms localising the infection to the upper respiratory tract appeared with runny nose, cough, sore throat and poor appetite; these continued into the second and occasionally third week. Most symptoms lasted for 5–11 days, with a median length for all symptoms of seven days. Symptoms defined by parents tended to be scored less for severity than symptoms defined by children.

To improve engagement of Health Visitors and Community Practitioners delivering the Healthy Child Programme with fathers. To evaluate a one-day, father-focused workshop with a supporting handbook for Practitioners. To identify institutional and organisational barriers to engagement with fathers.

The UK government policy encourages health professionals to engage with fathers. This derives from robust evidence that fathers’ early involvement with their children impacts positively on emotional, behavioural and educational development. Yet, there is little evidence that the importance of engaging fathers is reflected in Health Visitor training or that primary-care services are wholly embracing father-inclusive practice. The Fatherhood Institute (FI), a UK charity, has developed a workshop for Practitioners delivering the Healthy Child Programme.

A ‘before and after’ evaluation study, comprising a survey followed by telephone interviews, evaluated the impact of the FI workshop on Health Visitors’ and Community Practitioners’ knowledge, attitudes and behaviour in practice. A total of 134 Health Visitors and Community Practitioners from eight NHS Trusts in England attended the workshop from November 2011 to January 2014 at 12 sites. A specially constructed survey, incorporating a validated questionnaire, was administered before the workshop, immediately afterwards and three months later. Telephone interviews further explored participants’ responses.

Analysis of the questionnaire data showed that the workshop and handbook improved participants’ knowledge, attitudes and behaviour in practice. This was sustained over a three-month period. In telephone interviews, most participants said that the workshop had raised their awareness of engaging fathers and offered them helpful strategies. However, they also spoke of barriers to engagement with fathers. NHS Trusts need to review the training and education of Health Visitors and Community Practitioners and take a more strategic approach towards father-inclusive practice and extend services to meet the needs of fathers.

To outline the pathways a cohort of first attendees to our headache clinics had taken over the years in search of explanations and treatment for their headaches. To establish a greater awareness of the shortcomings and failures in their medical journey in the hope that better headache management will emerge in primary care.

At first attendance in primary care most headache sufferers will not receive a firm diagnosis. Treatments provided are often ineffective and so many patients embark on a somewhat random self-made journey searching for a remedy. If they reach a Headache Clinic the most common diagnoses are ‘chronic migraine’ and ‘medication overuse headache’. They are either no better or worse than when their headaches first started despite their efforts.

We undertook a prospective questionnaire-based study of over 200 patients on first attendance at each of our headache clinics, three based in District General Hospitals and one in a tertiary referral centre. We documented the patients’ headache characteristics, the ‘burden’ of their headaches, functional handicap and the financial costs incurred seeking help before referral. We also documented what our patients understood about their headache disorder and the treatments previously tried.

Most patients had not been given a formal diagnosis in primary care and many remained unconvinced of the benign nature of their headache problem and wanted further investigations. A few had sought help from headache charities. Many had unrealistic attitudes to their problem and medication overuse was rife. A few patients had been offered triptans in primary care. Key deficiencies in the primary care management of these patients included failure to provide a formal headache diagnosis, inadequate understanding of the nature and mechanism of headaches and failure to follow a resilient management strategy. We provide a more effective management pathway in primary care.

Waterpipe tobacco smoking (WTS), known in the United Kingdom as shisha, is popular among adolescents worldwide. Some electronic cigarettes are marketed in the United Kingdom as ‘electronic shisha’ (e-shisha). This study aimed to understand how WTS users view e-shisha and whether it could be used as a harm-reduction or cessation aid.

In-depth face-to-face interviews were conducted with 16 young adults recruited by snowball sampling in London, UK. Recurrent themes were derived iteratively through thematic analysis.

WTS is a socially acceptable activity, carried out at home or in a café. Peer influence and flavour play a key role in its use. Participants were aware of some health risks of WTS, although many accepted this risk and reported a need for more health-related WTS information. Although participants were familiar with e-shisha, there was no evidence of its use as a harm-reduction or cessation product. E-shisha tasted different to flavoured waterpipe tobacco and removed the positive social attributes typically ascribed to WTS. Waterpipe users felt e-shisha may encourage non-users to initiate cigarettes or WTS.

Opinions of reduced risk in using WTS may be due to the lack of available information, misconceptions and its easy accessibility. E-shisha does not appear to play a role in WTS harm reduction or cessation. On-going research efforts should test educational interventions addressing the adverse health impacts of WTS in this population group.