A consensus statement on how to conduct inclusive health research.

BACKGROUND: The active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research. METHOD: A total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round. RESULTS: This consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research. CONCLUSIONS: Consensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

Pilot feasibility study examining a structured self-management diabetes education programme, DESMOND-ID, targeting HbA1c in adults with intellectual disabilities.

AIM: To report on the outcomes of a pilot feasibility study of a structured self-management diabetes education programme targeting HbA1c . METHODS: We conducted a two-arm, individually randomized, pilot superiority trial for adults with intellectual disability and Type 2 diabetes mellitus. A total of 66 adults with disabilities across the UK met the eligibility criteria. Of these, 39 agreed to participate and were randomly assigned to either the DESMOND-ID programme (n = 19) or a control group (n = 20). The programme consisted of seven weekly educational sessions. The primary outcome was HbA1c level, and secondary outcomes included BMI, diabetes illness perceptions, severity of diabetes, quality of life, and attendance rates. RESULTS: This study found that the DESMOND-ID programme was feasible to deliver. With reasonable adjustments, the participants could be recruited successfully, and could provide consent, complete the outcome measures, be randomized to the groups and attend most of the sessions, with minimal loss to follow-up. The fixed-effects model, the interaction between occasion (time) and condition, showed statistically significant results (0.05 level) for HbA1c ; however, the CI was large. CONCLUSION: This is the first published study to adapt and pilot a national structured self-management diabetes education programme for adults with intellectual disability. This study shows it is possible to identify, recruit, consent and randomize adults with intellectual disabilities to an intervention or control group. Internationally, the results of this pilot are promising, demonstrating that a multi-session education programme is acceptable and feasible to deliver. Its effectiveness should be further tested in an adequately powered trial.

Improving diabetes care for people with intellectual disabilities: a qualitative study exploring the perceptions and experiences of professionals in diabetes and intellectual disability services.

BACKGROUND: Globally, diabetes is increasing with concerns about the impact on outcomes, including premature death and the costs associated with managing the condition. Research indicates that adults with intellectual disabilities (ID) are two to three times more likely to develop diabetes; however, there has been limited focus on diabetes service utilisation in this population. The aim of this study is to explore the perceptions and experiences of diabetes and ID practitioners. METHODS: A series of 1:1 semi-structured interviews were undertaken in one Scottish health service area. In total, 29 qualitative interviews were conducted: 10 with diabetes practitioners from primary and secondary care, 14 from ID services and 5 from community care services regarding diabetes service provision for this population. Thematic content analysis was undertaken to identify the themes and subthemes. RESULTS: Three main themes were identified: (1) enabling access to services to meet diabetes-related care needs of people with ID; (2) communication and service improvements between staff, patients and across services; and (3) providing person-centred diabetes care and developing adapted resources to increase patient self-care. CONCLUSIONS: The findings of this study have important international implications in how diabetes practitioners plan and deliver services for people with ID and other vulnerable groups with limited cognitive ability and communication skills and difficulties in self-management. The findings highlight that access to diabetes education and adapted resources is needed, and if 'reasonable adjustments' are made to service provision and practice, people with ID can benefit from improved healthcare. Developing joint clinics to share knowledge and resources between diabetes and ID practitioners may improve service delivery and continuity of care, and thereby diminish the costs of not providing quality care.

The relevance of participatory research in developing nursing research and practice.

The need to incorporate the views of patients or service users is at the heart of contemporary healthcare policy. But there is always the risk that researchers and policy makers will merely pay lip service to such an approach or that it will be conducted in a 'top down' manner. Ruth Northway describes how a participative approach can ensure that users are genuinely involved in research into their needs and aims to explore the potential contribution that participatory research can make to nursing, with particular reference to evaluating services. The practical implications that need to be considered by nurses choosing to use participatory methodologies are also explored.

Poverty as a practice issue for learning disability nurses.

People who have a learning disability are vulnerable to poverty. Given that poverty has a negative impact on mental and physical health, this should be an area of concern for learning disability nurses. Historically, however, this is an area of practice which has not received much attention. It is important that learning disability nurses are aware of the impact which poverty can have on the lives of their clients and that they incorporate this understanding into their practice. Interventions which can be implemented at the level of individual clients, groups and society to tackle poverty and its effects are proposed. It is concluded that, at present, little is known about the extent to which such a perspective underpins practice or about the extent to which poverty is addressed in pre- and post- registration educational courses. The need for further research and development is noted.

The health and social care divide: bridging the gap.

It is nearly three years since the full introduction of the reforms advocated in the Caring for People White Paper (DoH 1989) and reports and articles are now being published which comment on the initial effects of these changes, particularly those which have arisen from the health and social care divide created by the reforms. This article examines the nature of this division of responsibility, its implications for patients and for nursing practice. Some positive developments and possible courses of action are also considered.

Disability, nursing research and the importance of reflexivity.

Reflexivity has been viewed as a way of promoting quality within the research process. Its importance is highlighted in both the literature concerning nursing research and that which relates to disability research. However, whilst disabled people comprise a key client group for nurses the need for nurse researchers working in this field to adopt a reflexive approach to their work has not been explored in depth. In this paper the relevance of reflexivity to nursing research is discussed and current debates concerning disability research are explored. It is argued that there are particular reasons why it is necessary for nurse researchers to adopt a reflexive approach when focusing on disability. First, there is a need to examine closely the definitions of disability which underpin our research and practice. Second, it is noted that nurse researchers may be viewed as part of a system which disables people with impairments. Finally, it is important to reflect critically upon whose interests are served by such research. Some strategies for promoting reflexivity are also explored. It is concluded that a failure to address these issues via a process of critical reflection may mean that nursing research is viewed as unhelpful by disabled people. This in turn has implications for nursing practice.

Disability and oppression: some implications for nurses and nursing.

Since the 1970s organizations of disabled people have defined disability as a form of oppression. However, despite nurses (along with other professionals) increasingly being viewed as part of this experience of oppression, British nursing literature has to date largely failed to conceptualize disability in these terms. In this paper the five faces of oppression identified by Young are modified to include discrimination and developed to provide a framework in which evidence of the oppression experienced by disabled people may be analysed. It is argued that if nurses and the nursing profession are to challenge and reduce oppression then this should be via a process of awareness of the nature of disability, reflection on practice and development in partnership. Accordingly, an agenda is identified which has implications for nursing practice, education and research. It is stressed that if nursing is not to be viewed as irrelevant to the needs of disabled people or as part of the process by which they are oppressed then it is vital that this agenda is heeded.

Bone fractures associated with luteinizing hormone-releasing hormone agonists used in the treatment of prostate carcinoma.

BACKGROUND: Luteinizing hormone-releasing hormone agonists (LHRH-a) have become an established treatment for certain patients with prostate carcinoma. LHRH-a are known to decrease bone mineral density. The purpose of this study was to determine the risk of bone fracture in men receiving LHRH-a for prostate carcinoma. METHODS: A retrospective chart review and phone interviews were conducted to determine the incidence of bone fractures occurring in patients receiving LHRH-a for the treatment of prostate carcinoma. Abstracted data included the number of monthly LHRH-a injections, age, clinical stage of disease, sites of metastases, and bone fracture history. RESULTS: Twenty of the 224 patients (9%) treated with LHRH-a for prostate carcinoma between 1988 and 1995 at 3 teaching hospitals had at least 1 bone fracture during treatment with LHRH-a. The duration of treatment to the time of fracture ranged from 1 to 96 months (mean, 22.2 months). Seven fractures (32%) were osteoporotic in nature (i.e., vertebral compression fractures or hip fractures after a fall from standing), whereas 8 fractures (36%) were associated with a significant traumatic event (i.e., a motor vehicle accident, boxing, etc.) and 5 were of mixed etiology. Two of 22 fractures (9%) were pathologic. CONCLUSIONS: This study demonstrated a 9% fracture incidence in a cohort of patients receiving LHRH-a for prostate carcinoma for up to 96 months. The incidence of osteoporotic fractures was 5%.