We describe how patient and public involvement (PPI) was integrated into the design of an intervention for a randomised controlled trial (RCT) based within primary care. The RCT, known as the PLEASANT trial, aimed to reduce unscheduled medical contacts in children with asthma associated with start of the new school year in September with a simple postal intervention, highlighting the importance of maintaining asthma medication for helping to prevent increased asthma exacerbations.

PPI is a key feature of UK health research policy, and is often a requirement of funding from the National Institute for Health Research. There are few detailed accounts of PPI in the design and conduct of clinical trials in the PPI literature for researchers to learn from.

We held PPI consultation events to determine whether the proposed intervention for the trial was acceptable to children with asthma and their parents, and to ascertain whether enhancements should be made. Two PPI consultation events were held with children with asthma and their parents, prior to the research commencing. Detailed field notes were taken by the research team at each consultation event.

At the first consultation event, parents and children endorsed the trial’s rationale, made suggestions to the wording of the trial intervention letter, and made recommendations about to whom the letter should be sent out. At the second consultation event, parents discussed the timing of the intervention, commented on the lay summary of the Research Ethics Application, and were invited to join the trial’s steering committee, while the children selected a logo for the study. PPI has resulted in enhancements to the PLEASANT study’s intervention. A further PPI consultation event is scheduled for the end of the trial, in order for children with asthma and their parents to contribute to the trial’s dissemination strategy.

The purpose of this project is to describe the use of the Swedish National Diabetes Register (NDR) in clinical practice in a Swedish county and to specifically monitor the diabetes care routines at two separate primary health-care centres (PHCC) with a special focus on older patients.

According to Swedish law, all health-care units have to maintain a system for quality evaluation and improvement. As the NDR holds the most important quality indicators, implementation of the NDR in primary care was carried out by an implementation project in 2002–2005.

Initially, a digital questionnaire about NDR routines was sent to all PHCC. Statistics about hemoglobin adult 1c (HbA1c) and blood pressure (BP) was presented for the diabetes teams at two centres who were also interviewed. The responses became the basis for a focus group interview with both teams together, with data subject to content analysis.

The study showed that reporting to the NDR has become a compulsory routine in primary care. The diabetes nurse specialist was responsible for the practical management of the register and used the NDR for continuous monitoring of the patients. Most centres used the NDR’s statistics for evaluation and analyses annually. The diabetes nurse adapted the visits to the patient’s wishes and general condition. Only in terms of target values for HbA1c and BP did they accept slightly higher values for the older patients. Since the NDR was implemented, the registration rate has remained at 75% and has not increased. The reason given was that patients with diabetes living in nursing homes are checked up by the municipal nurse who does not use the NDR. However, the risk of omitting older patients in the NDR could be considerably decreased if data could be transferred from the electronic patient record.

To develop a simple cauda equina syndrome (CES) toolkit to facilitate the subjective examination of low back pain patients potentially at risk of CES. To undertake preliminary validation of the content of the toolkit.

CES is a rare condition which can be very challenging to identify in a generalist medical setting.

A three phase iterative design with two stake holder groups; extended scope practitioners experienced in managing CES patients and CES sufferers.

Synthesis of existing CES literature with CES patient data generated from in depth interviews.

Content validation of the draft toolkit with CES patients.

Content validation of the draft toolkit with extended scope physiotherapists.

A three arm toolkit has been developed for use with patients considered by the clinician as at risk of developing CES (eg, worsening low back pain with symptoms/signs of progressive sensory-motor deficit in the lower limbs); patient expertise, clinical expertise, research and pathways. Uniquely, the toolkit drew upon the lived experiences of patients suffering from CES to inform the content.

This paper reports on a project conducted between 2008 and 2011 that was established to allow eight Australian Indigenous men who had been in prison to tell their stories of incarceration.

The Shed in Western Sydney, NSW, Australia, was set up in response to the high male suicide rate in that area, its objective being to support men at risk. Aboriginal men were the most at risk, and they are presently imprisoned at a rate of 13 times more than non-Indigenous men. This small project sought to give voice to the men behind the statistics and point to a significant problem in Australian society.

Interviews were conducted by an Indigenous male, questions covering age at first entering the penal system, number of prison stays, support, and health. This paper is framed around responses to these questions.

All but one of the men were recidivist offenders, and over half were under 15 years of age when first offending. All talked about a lack of support both inside and after leaving prison, and alcohol and depression figured strongly in the accounts. Disadvantage and social exclusion, lack of support such as access to housing and health services, figure significantly in the men’s stories. It is only when social issues are addressed that any gains will be achieved and a cycle of recidivism broken.

The aim was to explore the extent to which a Danish prevention centre catered to marginalised groups within the catchment area. We determined whether the district’s socio-economic vulnerability status and distance from the citizens’ residential sector to the centre influenced referrals of citizens to the centre, their attendance at initial appointment, and completion of planned activities at the centre.

Disparities in access to health care services is one among many aspects of inequality in health. There are multiple determinants within populations (socio-economic status, ethnicity, and education) as well as the health care systems (resource availability and cultural acceptability).

A total of 347 participants referred to the centre during a 10-month period were included. For each of 44 districts within the catchment area, the degree of socio-economic vulnerability was estimated based on the citizens’ educational level, ethnicity, income, and unemployment rate. A socio-economic vulnerability score (SE-score) was calculated. Logistic regression was used to calculate the probability that a person was referred to the centre, attended the initial appointment, and completed the planned activities, depending on sex, age, SE-score of district of residence, and distance to the centre.

Citizens from locations with a high socio-economic vulnerability had increased probability of being referred by general practitioners, hospitals, and job centres. Citizens living further away from the prevention centre had a reduced probability of being referred by their general practitioners. After referral, there was no difference in probability of attendance or completion as a function of SE-score or distance between the citizens’ district and the centre. In conclusion, the centre is capable of attracting referrals from districts where the need is likely to be relatively high in terms of socio-economic vulnerability, whereas distance reduced the probability of referral. No differences were found in attendance or completion.

To explore the experiences of student and novice health visitors in implementing health visiting policy reform pre- and post-qualification.

In England, public health nursing has been subject to major policy reform. The Health Visitor Implementation Plan (2011) set out a plan to recruit increasing numbers of nurses and midwives to the profession to deliver an expanded and refocussed health visiting service. Exploring this policy change from the viewpoint of those new to health visiting offers a unique perspective into how a specific policy vision is translated into nursing practice.

A descriptive qualitative study in which participants were enrolled on a one-year post-graduate health visiting course at a University in South West of England. Qualitative data were collected pre- and post-qualification. A total of 16 interviews and a focus group were conducted with nine participants between September 2012 and March 2013.

Descriptive data were interpreted using Lipsky’s theoretical framework of street-level bureaucracy. Three themes emerged which relate to this ‘bottom-up’ perspective on policy implementation; readiness to operationalise policy, challenges in delivering the service vision; and using discretion in delivering the vision. Community public health nurses operate as street-level bureaucrats in negotiating the demands of policy and practice, and by this means, attempt to reconcile professional values with institutional constraints. Barriers to policy implementation at a local level mediate the effects of policy reform, ultimately impacting upon outcomes for children and families.

We present the evolution of primary-level HIV and AIDS services, shifting from end of life to chronic care, and draw attention to the opportunities and threats for the future of Zambia’s nascent chronic care system.

Although African governments struggled to provide primary health care services in the context of a global economic crisis, civil society organisations (CSO) started mobilising settlement residents to respond to another crisis: the HIV and AIDS pandemic. These initiatives actively engaged patients, families and settlement residents to provide home-based care to HIV-infected patients. After 30 years, CHBC programmes continue to be appropriate in the context of changing health care needs in the population.

The study took place in 2011 and 2012 and was part of a multi-country study. It used a mixed method approach involving semi-structured interviews, focus group discussions, structured interviews, service observations and a questionnaire survey.

Our research revealed long-standing presence of extensive mutual support amongst residents in many settlements, the invocation of cultural values that emphasise social relationships and organisation of people by CSO in care and support programmes. This laid the foundation for a locally conceived model of chronic care capable of addressing the new care demands arising from the country’s changing burden of disease. However, this capacity has come under threat as the reduction in donor funding to community home-based care programmes and donor and government interventions, which have changed the nature of these programmes in the country. Zambia’s health system risks losing valuable capacity for fulfilling its vision ‘to bring health care as close to the family as possible’ if government strategies do not acknowledge the need for transformational approaches to community participation and continuation of the brokering role by CSO in primary health care.

To provide descriptive figures for infant distress and associated parenting at night in normal London home environments during the first three months of age.

Most western infants develop long night-time sleep periods by four months of age. However, 30% of infants in many countries sleep for short periods and cry out on waking in the night: the most common type of infant sleep behaviour problem. Preventive interventions may help families and improve services. There is evidence that ‘limit-setting’ parenting, which is common in western cultures, supports the development of settled infant night-time behaviour. However, a recent review has challenged this and argued that this form of parenting risks distressing infants. This study describes limit-setting parenting as practiced in London, compares it with ‘infant-cued’ parenting and measures the associated infant distress.

Longitudinal infrared video, diary and questionnaire observations comparing a General-Community (n=101) group and subgroups with a Bed-Sharing (n=19) group on measures of infant and parenting behaviours at night.

General-Community parents took longer to detect and respond to infant waking and signalling, and to begin feeding, compared with the highly infant-cued care provided by Bed-Sharing parents. The average latency in General-Community parents’ responding to infant night-time waking was 3.5 min, during which infants fuss/cried for around 1 min. Compared with Bed-Sharing parenting, General-Community parenting was associated with increased infant distress of around 30 min/night at two weeks, reducing to 12 min/night by three months of age. However, differences in infant distress between General-Community subgroups adopting limit-setting versus infant-cued parenting were not large or statistically significant at any age. The figures provide descriptive evidence about limit-setting parenting which may counter some doubts about this form of parenting and help parents and professionals to make choices.

Pediatric patients seek timely access to subspecialty care within a complex delivery system while facing barriers: distance, economics, and clinician shortages.

We examined stakeholder perceptions about solutions to the access challenge. We engaged over 300 referring primary care pediatricians in the evaluation of Access Clinics at an academic children’s hospital.

Using an anonymous online survey, we asked pediatricians about their and their patients’ experiences and analyzed factors that may influence referrals.

Referring pediatricians reported satisfaction; they provided feedback about their patients’ experiences, physician communication, and referral influences. Distance from the Access Clinic does not correlate with differences in referral volume; living in areas with higher child populations and higher median income is associated with more referrals. Referring pediatricians have strong opinions about referrals, are attuned to patient experiences, and desire bi-directional communication. Multiple factors influence referral to and acceptance of Access Clinics, but external influences have less impact than expected.