The SPHERE Study: Secondary prevention of heart disease in general practice: protocol of a randomised controlled trial of tailored practice and patient care plans with parallel qualitative, economic and policy analyses. [ISRCTN24081411]

Background: The aim of the SPHERE study is to design, implement and evaluate tailored practice and personal care plans to improve the process of care and objective clinical outcomes for patients with established coronary heart disease (CHD) in general practice across two different health systems on the island of Ireland.CHD is a common cause of death and a significant cause of morbidity in Ireland. Secondary prevention has been recommended as a key strategy for reducing levels of CHD mortality and general practice has been highlighted as an ideal setting for secondary prevention initiatives. Current indications suggest that there is considerable room for improvement in the provision of secondary prevention for patients with established heart disease on the island of Ireland. The review literature recommends structured programmes with continued support and follow-up of patients; the provision of training, tailored to practice needs of access to evidence of effectiveness of secondary prevention; structured recall programmes that also take account of individual practice needs; and patient-centred consultations accompanied by attention to disease management guidelines.

Methods: SPHERE is a cluster randomised controlled trial, with practice-level randomisation to intervention and control groups, recruiting 960 patients from 48 practices in three study centres (Belfast, Dublin and Galway). Primary outcomes are blood pressure, total cholesterol, physical and mental health status (SF-12) and hospital re-admissions. The intervention takes place over two years and data is collected at baseline, one-year and two-year follow-up. Data is obtained from medical charts, consultations with practitioners, and patient postal questionnaires. The SPHERE intervention involves the implementation of a structured systematic programme of care for patients with CHD attending general practice. It is a multi-faceted intervention that has been developed to respond to barriers and solutions to optimal secondary prevention identified in preliminary qualitative research with practitioners and patients. General practitioners and practice nurses attend training sessions in facilitating behaviour change and medication prescribing guidelines for secondary prevention of CHD. Patients are invited to attend regular four-monthly consultations over two years, during which targets and goals for secondary prevention are set and reviewed. The analysis will be strengthened by economic, policy and qualitative components.

Bereavement Assessment Practice in Hospice Settings: Challenges for Palliative Care Social Workers

The management and delivery of bereavement support services in palliative care settings presents practical and ethical challenges. A national survey, conducted in 2007, examined bereavement practice in ten Marie Curie hospices across the United Kingdom. This qualitative study was undertaken using semi-structured telephone interviews with Bereavement Service Leaders located in each hospice. Although findings revealed that bereavement services were in operation and had been reviewed in response to the National Institute for Clinical Excellence Guidance (2004), and all bereaved families were offered support, there was no standardisation of service delivery across sites. Multi-disciplinary team meetings facilitated shared decision-making for bereavement follow-up, and expanded and clarified documentation completed by nursing staff around the time of the patient’s death. However, there was ambiguity regarding professional ‘duty of care’ and agency responses to bereaved individuals who were suicidal. Questions were raised around clinical effectiveness, reliability and professional accountability. The study highlighted ethical issues centred on documentation, user participation and consent, and found staff training was variable across the 10 hospices. The findings have informed the development of a post-bereavement service model which has been subsequently implemented across Marie Curie Cancer Care.

Preconception care for women with diabetes: the midwife's role

Diabetes mellitus is a chronic illness which affects a significant number of childbearing women. Despite the potential for adverse consequences for both maternal and fetal wellbeing, few women with diabetes plan their pregnancies to ensure that they enter pregnancy in optimal health. Furthermore, whilst adverse pregnancy outcomes are well documented for women with type I diabetes, it is now apparent that an increasing number of women with type II diabetes are becoming pregnant with similar adverse associated risk. There is an increasing recognition that significant adverse pregnancy outcomes are determined prior to a woman initiating pregnancy care, many of which could be minimised with the introduction of preconception care. As formalised preconception care clinics remain scant across the United Kingdom, there is an urgent need to increase the opportunities for the provision of preconception care and advice to women with diabetes. Midwives are ideally placed to provide preconception advice to women and could provide the missing link in terms of preconception advice for women with diabetes.

Family Caregivers and Palliative Care: Current Status and Agenda for the Future

The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned. The purpose of this review is to outline a succinct and empirically informed account of family caregiving within the context of palliative care and to propose an agenda for the future. The appraisal is underpinned by several systematic reviews, and other seminal publications from the last decade.

The systematic development of an innovative DVD to raise awareness of preconception care

The purpose of this article is to describe the design, development and process evaluation of a preconception counselling resource (a DVD) for women with pre-gestational diabetes. DVD design and development centred on two key stakeholders ('DVD user group' and 'professional advisory group') working alongside a professional multimedia company. The DVD user group provided feedback on preferred DVD style, and informed modifications and improvements. The professional advisory group prepared the script, and ensured content and face validity. Evaluation of the DVD's acceptability and usefulness was assessed among women with diabetes via a postal questionnaire. Development phase: the resulting DVD is a 45-minute programme with three parts, featuring eight women with diabetes sharing their views and experiences, alongside an evidence-based commentary. The programme focuses on the importance of preventing an unplanned pregnancy (highlighting contraception) and on essential planning advice. Evaluation phase: 97 women (89 with type 1 and 8 with type 2 diabetes) evaluated the DVD using a rating scale of 0-10. Mean (SD) scores were: 9.1 (1.3) for quality; 9.0 (1.4) for content; 8.8 (1.5) for interest; 8.7 (1.8) for usefulness; 7.8 (2.2) for knowledge acquisition; and 8.0 (2.1) for knowledge confirmation. This combined user and multi-professional advisory group approach has produced an innovative and highly acceptable preconception counselling resource for women with diabetes. The development process and outcome evaluation are an important point of reference for future educational programmes. Future research will evaluate the impact of this preconception counselling resource on pregnancy planning indicators and pregnancy outcome.

Home-based support for palliative care families:challenges and recommendations

Providing adequate supportive services for the families of palliative care patients is a core principle of palliative care. Caring for a patient with terminal illness at home involves a considerable commitment on the part of family caregivers, and attention must be given to the caregiver's needs as well as those of the patient. Although a home death may be preferred by patients and promoted by healthcare agencies as a cost-effective option, it may be an ideal that is not often realised. Enhanced supportive care strategies can ameliorate the challenges facing families of palliative care patients cared for at home. All health professionals need to improve the standard of family-centred palliative care, and more evidence-based approaches are required.

Access and utilisation of maternity care for disabled women who experience domestic abuse: a systematic review

Background: Although disabled women are significantly more likely to experience domestic abuse during pregnancy than non-disabled women, very little is known about how maternity care access and utilisation is affected by the co-existence of disability and domestic abuse. This systematic review of the literature explored how domestic abuse impacts upon disabled women’s access to maternity services.

Methods: Eleven articles were identified through a search of six electronic databases and data were analysed to identify: the factors that facilitate or compromise access to care; the consequences of inadequate care for pregnant women’s health and wellbeing; and the effectiveness of existing strategies for improvement.

Results: Findings indicate that a mental health diagnosis, poor relationships with health professionals and environmental barriers can compromise women’s utilisation of maternity services. Domestic abuse can both compromise, and catalyse, access to services and social support is a positive factor when accessing care. Delayed and inadequate care has adverse effects on women’s physical and psychological health, however further research is required to fully explore the nature and extent of these consequences. Only one study identified strategies currently being used to improve access to services for disabled women experiencing abuse.

Conclusions: Based upon the barriers and facilitators identified within the review, we suggest that future strategies for improvement should focus on: understanding women’s reasons for accessing care; fostering positive relationships; being women-centred; promoting environmental accessibility; and improving the strength of the evidence base.

Measuring horizontal integration among health care providers in the community: An examination of a collaborative process within a palliative care network

In many countries formal or informal palliative care networks (PCNs) have evolved to better integrate community-based services for individuals with a life-limiting illness. We conducted a cross-sectional survey using a customized tool to determine the perceptions of the processes of palliative care delivery reflective of horizontal integration from the perspective of nurses, physicians and allied health professionals working in a PCN, as well as to assess the utility of this tool. The process elements examined were part of a conceptual framework for evaluating integration of a system of care and centred on interprofessional collaboration. We used the Index of Interdisciplinary Collaboration (IIC) as a basis of measurement. The 86 respondents (85% response rate) placed high value on working collaboratively and most reported being part of an interprofessional team. The survey tool showed utility in identifying strengths and gaps in integration across the network and in detecting variability in some factors according to respondent agency affiliation and profession. Specifically, support for interprofessional communication and evaluative activities were viewed as insufficient. Impediments to these aspects of horizontal integration may be reflective of workload constraints, differences in agency operations or an absence of key structural features.

Designing for dementia : an assessment of the impact of the physical environment on wayfinding success for residents in long term care settings

It is acknowledged that one of the consequences of the ageing process is cognitive decline, which leads to an increase in the incidence of illnesses such as dementia. This has become ever more relevant due to the projected increase in the ageing demographic. Dementia affects visuo-spatial perception, causing difficulty with wayfinding, even during the early stages of the disease. The literature widely recognises the physical environment’s role in alleviating symptoms of dementia and improving quality of life for residents. It also identifies the lack of available housing options for older people with dementia and consequently the current stock is ill-equipped to provide adequate support.
Recent statistics indicate that 80% of those residing in nursing or residential care homes have some form of dementia or severe memory problems. The shift towards institutional care settings, the need for specialist support and care, places a greater impetus on the need for a person-centred approach to tackle issues related to wayfinding and dementia.
This thesis therefore aims to improve design for dementia in nursing and residential care settings in the context of Northern Ireland. This will be undertaken in order to provide a better understanding of how people with dementia experience the physical environment and to highlight features of the design that assist with wayfinding. Currently there are limited guidelines on design for dementia, meaning that many of these are theoretical, anecdotal and not definitive. Hence a greater verification to address the less recognised design issues is required. This is intended to ultimately improve quality of life, wellbeing, independence and uphold the dignity of people with dementia living in nursing or residential care homes.
The research design uses a mixed methods approach. A thorough preparation and consideration of ethical issues informed the methodology. The various facets were also trialled and piloted to identify any ethical, technological, methodological, data collection and analysis issues. The protocol was then amended to improve or resolve any of the aforementioned issues. Initially a questionnaire based on leading design recommendations was conducted with home managers. Semi-structured interviews were developed from this and conducted with staff and resident’s next of kin. An evidence-based approach was used to design a study which used ethnographic methods, including a wayfinding task. This followed a repeated measures design which would be used to actively engage residents with dementia in the research. Complementary to the wayfinding task, conversational and semi-structured interviews were used to promote dialogue and direct responses with the person with dementia. In addition to this, Space Syntax methodologies were used to examine the physical properties of the architectural layout. This was then cross-examined with interview responses and data from the wayfinding tasks.
A number of plan typologies were identified and were determined as synonymous with decision point types which needed to be made during the walks. The empirical work enabled the synthesis of environmental features which support wayfinding.
Results indicate that particular environmental features are associated with improved performance on the wayfinding tasks. By enhancing design for dementia, through identifying the attributes, challenges with wayfinding may be overcome and the benefits of the physical environment can be seen to promote wellbeing.
The implications of this work mean that the environmental features which have been highlighted from the project can be used to inform guidelines, thus adding to existing knowledge. Future work would involve the dissemination of this information and the potential for it to be made into design standards or regulations which champion design for dementia. These would increase awareness for designers and stakeholders undertaking new projects, extensions or refurbishments.
A person-centred, evidence-based design was emphasised throughout the project which guaranteed an in-depth study. There were limitations due to the available resources, time and funding. Future research would involve testing the identified environmental features within a specific environment to enable measured observation of improvements.

Health professionals' and service users' perspectives of shared care for monitoring wet age-related macular degeneration: a qualitative study alongside the ECHoES trial

Objectives: To explore the views of eye health professionals and service users on shared community and hospital care for wet or neovascular age-related macular degeneration (nAMD).

Method: Using maximum variation sampling, 5 focus groups and 10 interviews were conducted with 23 service users and 24 eye health professionals from across the UK (consisting of 8 optometrists, 6 ophthalmologists, 6 commissioners, 2 public health representatives and 2 clinical eye care advisors to local Clinical Commissioning Groups). Data were transcribed verbatim and analysed thematically using constant comparative techniques derived from grounded theory methodology.

Results: The needs and preferences of those with nAMD appear to be at odds with the current service being provided. There was enthusiasm among health professionals and service users about the possibility of shared care for nAMD as it was felt to have the potential to relieve hospital eye service burden and represent a more patient-centred option, but there were a number of perceived barriers to implementation. Some service users and ophthalmologists voiced concerns about optometrist competency and the potential for delays with referrals to secondary care if stable nAMD became active again. The health professionals were divided as to whether shared care was financially more efficient than the current model of care. Specialist training for optometrists, under the supervision of ophthalmologists, was deemed to be the most effective method of training and was perceived to have the potential to improve the communication and trust that shared care would require.

Conclusions: While shared care is perceived to represent a promising model of nAMD care, voiced concerns suggest that there would need to be greater collaboration between ophthalmology and optometry, in terms of interprofessional trust and communication.

Supporting an ethnic minority woman's choice for pain relief in labour: a reflection

Despite professional expectations for midwives to provide care to women that is founded in equality and recognises diversity (Nursing and Midwifery Council, 2015), women from ethnic minority populations consistently suggest that they are not heard (Briscoe and Lavender, 2009; Tobin et al, 2014). This article reflects upon a situation where a Portuguese woman with limited English speaking ability was denied access to epidural anaesthesia as the midwife felt that she could not give valid consent to the procedure without the presence of an interpreter. The midwife’s role within this situation will be reflected upon and implications for midwifery practice identified.

Athletic injury care training in high school coaches

The purpose of this qualitative study was to understand the client and occupational therapist experiences of a mental health group. A secondary aim was to explore the extent to which this group seemed to have reflected a client-centred approach. The topic emerged from personal and professional issues related to the therapist as teacher and to inconsistencies in practice with the profession's client-centred philosophy. This philosophy, the study's frame of reference, was established in terms of themes related to the client-therapist relationship and to client values. Typical practice was illustrated through an extensive literature review. Structured didacticexperiential methods aiming toward skill development were predominant. The interpretive sciences and, to a lesser extent, the critical sciences directed the methodology. An ongoing support group at a community mental health clinic was selected as the focus of the study; the occupational therapist leader and three members became the key participants. A series of conversational interviews, the . core method of data collection, was supplemented by observation, document review, further interviews, and fieldnotes. Transcriptions of conversations were returned to participants for verification and for further reflection Analysis primarily consisted of coding and organizing data according to emerging themes. The participants' experiences of group, presented as narrative stories within a group session vignette, were also returned to participants. There was a common understanding of the group's structure and the importance of having "air time" within the group; however, differences in perceptions of such things as the importance of the group in members' lives were noted. All members valued the therapeutic aspects of group, the role of group as weekly activity and, to a lesser extent, the learning that came from group. The researcher's perspective provided a critique of the group experience from a client-centred perspective. Some areas of consistency with client-centred practice were noted (e.g., therapist attitudes); however the group seemed to function far from a client-centred ideal. Members held little authority in a -relationship dominated by the leaders, and leader agendas rather than member values controlled the session. Possible reasons for this discrepancy ranging from past health care encounters through to co-leader discord emerged. The actual and potential significance of this study was discussed according to many areas of implications: to OT practice, especially client-centred group practice, to theory development, to further areas of research and methodology considerations, to people involved in the group and to my personal growth and development.

Bioethics’ Lack in Relation to Person-Centred User-Driven Health Systems Planning: A Call for Change

La tribune de l'éditeur / Editor's Soapbox

Determinants of demand for antenatal care in Colombia

Even though antenatal care is universally regarded as important, determinants of demand for antenatal care have not been widely studied. Evidence concerning which and how socioeconomic conditions influence whether a pregnant woman attends or not at least one antenatal consultation or how these factors affect the absences to antenatal consultations is very limited. In order to generate this evidence, a two-stage analysis was performed with data from the Demographic and Health Survey carried out by Profamilia in Colombia during 2005. The first stage was run as a logit model showing the marginal effects on the probability of attending the first visit and an ordinary least squares model was performed for the second stage. It was found that mothers living in the pacific region as well as young mothers seem to have a lower probability of attending the first visit but these factors are not related to the number of absences to antenatal consultation once the first visit has been achieved. The effect of health insurance was surprising because of the differing effects that the health insurers showed. Some familiar and personal conditions such as willingness to have the last children and number of previous children, demonstrated to be important in the determination of demand. The effect of mother’s educational attainment was proved as important whereas the father’s educational achievement was not. This paper provides some elements for policy making in order to increase the demand inducement of antenatal care, as well as stimulating research on demand for specific issues on health.