Health facilitation in primary care seen from practice and education

'Valuing People: A New Strategy for Learning Disability for the 21st Century' (Department of Health, 2001a,b) aimed to introduce 'health facilitation' to improve the identification of health needs and access to appropriate care for people with learning disabilities. One London Borough took a leading role in implementing this new function, in the form of dedicated, full-time health facilitators. The authors examined the implementation and its impact, employing an innovative collaboration between professionals from practice, education and research. The clinical nurse involved was observed during her first year of health facilitation. The authors evaluated her impact on professionals, people with learning disabilities and the wider system of health. In some areas (for example, information technology) the health facilitator could make little progress in one year. However, she connected with a widening circle of local people and services, for example, in introducing health action plans for adults with a learning disability. Across the Borough some professionals became more aware of specific health issues in their local population.     

Health facilitation for people with learning disabilities

Health facilitation is a concept introduced in the white paper 'Valuing People: A New Strategy for Learning Disability for the 21st Century' (DH, 2001a). A project was set up in the West Midlands regions to look at what Primary Care Trust and specialist learning disability services were planning to do in respect of health facilitation in learning disabilities and to develop a resource tool for use by individuals working in this role. This article reiterates the extent of unmet health need experienced by people with learning disabilities and suggests that everyone involved in a caring role should be responsible for addressing their health needs. Primary and secondary care staff from across the legion were consulted, and a range of educational needs were identified for these professionals. Recommendations were made for health facilitators to support the primary and secondary care teams to enable improved access to mainstream health services for people with learning disabilities. The recommendations can be applied nationally.     

Current perspective regarding adults with intellectual and developmental disabilities accessing computer technology

Purpose: This article was written to summarize current efforts in the research community in regards to assisting adults with severe developmental and intellectual disabilities to access a computer. Method: A literature search was conducted to determine contemporary research that has been conducted to enable computer use in persons with significant developmental disabilities utilizing databases such as ERIC or PubMed. Results: Although various assistive technology devices and interventions have been developed for persons with all types of disabilities, a lack of research into methods to help persons with severe developmental disabilities access a computer is evident. This perpetuates the underutilization of computers in this population such as those attending day programs or residing in residential facilities. Conclusions: Persons with developmental disabilities, particularly adults, are often overlooked and are not thought to be capable of using a personal computer. Though communities have endeavored to further enhance participation by persons with disabilities in many aspects of mainstream society, there is a scarcity of research pertaining to how adults with intellectual disabilities can access a computer, especially those with severe impairments. Once formal schooling is over, there appears to be scant interest in supporting adults using computers.

Implications for Rehabilitation

• Helping a person to access a computer use should be considered to be within the purview of rehabilitation professionals, even when an individual has an intellectual disability.

• Research into methods to enable access to computer technology should incorporate persons with severe intellectual disabilities, including adults.

• Assistive technology devices, including those associated with computer technology should be developed with persons with severe developmental disabilities in mind to facilitate access.

• Rehabilitation professionals such as speech therapists, occupational therapists and physical therapists should work in concert to develop guidelines and protocols founded on research to aid persons with severe and multiple disabilities who want to access a computer.

     

Overview of Health Issues of Older Women with Intellectual Disabilities

Health researchers, educators and providers have begun to address the health needs of women and girls with disabilities in the U.S. Older women with intellectual disabilities, however, remain underrepre-sented in the national health research agenda. As this population becomes more visible and empowered through policies that support greater community integration and longevity, they and their families, professionals and advocates need more accurate information about their health concerns and options. A critical problem is that professionals receive little training regarding the health concerns and experiences of women with intellectual disabilities who are growing older. This paper provides an overview of primary health issues related to aging for women with intellectual disabilities in the following areas: (1) general health, (2) reproductive health, (3) mental health, and (4) access to health services. The paper concludes with a discussion of implications for practice and research, and recommendations for future research and health service provision for women with intellectual disabilities.     

Mental Health Services for Individuals with Intellectual Disabilities in Canada: Findings from a National Survey

Background People with intellectual disabilities are known to have a high prevalence of mental health problems but few studies have considered how such mental health problems are addressed in Canada. The purpose of the present study was to document both the range of mental health services available to individuals with intellectual disabilities across Canada and the perceived service gaps. Material and Methods A 30‐item questionnaire was developed that included questions on mental healthcare services for children, adolescents and adults with intellectual disabilities. This survey was sent to key informants in the 10 Canadian provinces and three territories. Results More than half of the respondents reported that generic mental health providers were poorly equipped to meet the needs of individuals with intellectual disabilities and mental health issues. Certain specialized services (inpatient treatment, emergency room expertise) were reported to exist by less than half of the respondents. Waitlists for specialized services were typically 4 months or longer. Respondents thought that training for staff and professionals was very important. Conclusion Some specialized services for individuals with intellectual disabilities and mental health issues were reported to exist in Canada but the need for more specialized services and further training was identified. Documentation of these service gaps should lead to further efforts in Canada for the improvement in services and developing policy.     

Primary health care provision for adults with a learning disability

BACKGROUND: During the last decade, primary care has been designated as the main provider of health care to people with learning disabilities. Practice nurses based in primary care teams are increasingly the first points of contact with health services. They make an important contribution to promoting good health, with health screening and illness prevention work being a significant part of their role. However, little is known about their views or involvement regarding the provision of primary care for people with learning disabilities. There is therefore a need to explore the nursing perspective, from within primary care, on the current provision of care for people with a learning disability. RESEARCH AIM: To inform the learning disability service of the role of primary care in current service provision for people with learning disabilities. RESEARCH METHOD: A survey of all practice nurses currently employed by Grampian Health Board in Aberdeen was conducted in June 2001. An initial pilot study was conducted in primary care and learning disability services. Data collection took place during June and July 2001. All practice nurses working in the geographical region of Grampian were invited to participate. RESULTS: Communication barriers exist, preventing access to health screening and treatment for some people with learning disabilities. Independent living skills, for example dietary management and budgeting, require additional community support. These conditions pose complex problems for practice nurses and other members of the primary care team. CONCLUSION: This study indicates a need for closer support and partnership with the learning disability service. The factors necessary for providing health care to people with learning disabilities extend beyond the domain of primary care teams. The findings of this survey have important implications for education and support to enable carers and professionals to provide a high standard of care.     

The transition from child to adult health services for young adults with intellectual disabilities: An evaluation of a pilot of an online learning resource for Registered Nurses

AimThis study formed the third phase of a national study on the experience of transition from child to adult health services for young adults with intellectual disabilities. The aim of this phase was to evaluate the accessibility and acceptability of an on-line learning resource for Registered Nurses.BackgroundThe population of young adults with intellectual disabilities and complex needs is increasing. Consequently, more will move from child to adult healthcare, with evidence highlighting that for some their experiences of the transition process is poor. The main study provided contemporary evidence to raise the awareness of Registered Nurses of the needs of young adults with intellectual disabilities and their role in enabling an effective transition from child to adult services.MethodsThe online learning resource was developed and piloted with Registered Nurses involved in the transition from child to adult health services for young adults with intellectual disabilities and complex needs. Data collection involved an online survey and semi-structured interviews.ResultsTwelve Registered Nurses from 2 Scottish NHS Boards completed the questionnaire and 3 participated in a follow-up interview. The findings suggest that the mode of on-line delivery and most of the content of the learning resource were both acceptable and accessible to Registered Nurses across a range of areas of nursing practice. The learning resource was further adapted in response to the participant data.ConclusionThis on-line learning resources offers the potential for Registered Nurses, and potentially other healthcare professionals to undertake evidence-based, structured further education regarding the effective transitions for young adults with intellectual disabilities and their families.Tweetable abstractRegistered Nurses have key contributions to enable the transition from child to adult healthcare for young adults with intellectual disabilities.     

Access to secondary care for people with learning disabilities

A person-centred approach is needed to improve access to secondary health care for people who have learning disabilities. The Department of Health (1995a) drew attention to this issue when it reported that people with learning disabilities sometimes have problems maintaining their health because hospitals fail to work in an interdisciplinary manner with the specialist learning disability services. This article focuses on a case study where the difficulties in operating on a patient with learning disabilities and mental health problems were overcome through a multidisciplinary and patient-centred approach. The case study provides evidence of mainstream health staff and learning disability professionals working together and breaking down barriers to provide a seamless service.     

A Randomized Controlled Trial of a Specialist Liaison Worker Model for Young People with Intellectual Disabilities with Challenging Behaviour and Mental Health Needs

Background Twenty six young people with intellectual disabilities and mental health needs from Pakistani and Bangladeshi communities were recruited as part of a bigger study to examine the effectiveness of a liaison worker in helping young people and their families access appropriate intellectual disabilities and mental health services. Method Twelve young people were randomly allocated to the treatment group, which had the help of the liaison worker, and 14 young people were allocated to the control group without the help of a liaison worker. Baseline measures were undertaken with all the young people and their carers. This was followed by a 9‐month trial, consisting of the liaison worker helping the treatment group to get in touch with and take up appropriate services, mainly in the areas of psychiatric appointments, benefits advice, house adaptations, leisure facilities and support and care for the young person. The control group participants did not have the access to the liaison worker and were accessing services using the normal routine. Assessments were carried out post‐treatment to assess whether the use of a liaison worker had had any effect on outcomes for the two groups. Results Twelve young people completed the study in the treatment group and 14 in the control group. Participants allocated to the specialist liaison worker had statistically significantly more frequent contact with services and with more outcomes, than the control group, and significantly lower scores on the Strengths and Difficulties Questionnaire (SDQ). Conclusion The use of specialist liaison services in ensuring adequate access to services for young people with learning disabilities and mental health needs from the South Asian community proved to be significant and effective compared with young people and their families accessing services on their own.     

Rates of access to assistive equipment and medical rehabilitation services among people with disabilities

Purpose: To determine rates of access to assistive equipment and medical rehabilitation services among people with disabilities in the US, and to determine whether health plan type is associated with rates of access to these health services.

Methods: Results were derived from a nationwide US survey sample of people with cerebral palsy, multiple sclerosis or spinal cord injury. Analyses were restricted to working-age adults ( n =500). Need for, and receipt of (1) assistive equipment in the last 12 months, and (2) rehabilitative services in the last 3 months, was determined.

Results: Over half of the sample indicated a need for assistive equipment in the last 12 months. Nearly a third of those who indicated a need did not receive assistive equipment every time it was needed. Forty per cent of the sample indicated a need for rehabilitative services in the last 3 months, and over half of those indicating a need did not receive rehabilitative services every time they were needed. Access rates did not differ appreciably between respondents covered by managed care and fee-for-service health plans.

Conclusion: Emphasis in healthcare for people with disabilities should shift from traditional acute healthcare models that focus on functional restoration, to preventive services, and maintenance of function, health and independence.     

Are there differences in factors influencing access and continued use of assistive products for people with intellectual disabilities living in group homes?

Abstract

Background: The World Health Organization has launched a program to promote Global Cooperation on Assistive Technology (GATE) to implement those parts of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) referring to assistive technology and products. A particular vulnerable group deeply affected by health inequity affecting access to assistive products are people with intellectual disabilities.

Objective: The objective of this study is to understand the barriers and facilitators to effectively access and continuously use essential assistive products for people with intellectual disabilities.

Materials and methods: Face-to-face interviews with 15 adults with a mild to profound intellectual disability and 15 providers of assistive products were conducted to gain insights about current use, needs, knowledge, awareness, access, customization, funding, follow-up, social inclusion, stigma and policies around assistive products and intellectual disability. The technique of constant comparative analysis was used to analyze the data.

Results and conclusion: An overview of factors is presented that fit within seven domains for access and eight domains for continuous use of assistive products for people with intellectual disabilities. It illustrates that access and continuous use are influenced by different barriers and facilitators. These different influences should be taken into account in country policies and frameworks that seek to implement the UNCRPD through assistive technology.

• Implications for rehabilitation

• Proactive assessment for assistive products by health professionals is rare and the vast majority of people with intellectual disabilities depend on carers to signal the need .

• A lack of education for carers around available assistive products and the benefits of assistive products for people with intellectual disabilities may lead to an underutilization for this group.

• The paternalistic attitude of care providers towards people with intellectual disabilities limits access and use to certain (high-tech) assistive products.

• The segmented and disjointed aspect of public funding to support assistive products found in this study is a key issue for policymakers who aspire to adhere to implementing the UNCRPD equally in all areas of their country.

     

Understanding the consequences of access barriers to health care: experiences of adults with disabilities

Purpose : The study explores: (1) the scope and nature of the consequences that adults with disabilities perceive as the result of inappropriate access to health care services; (2) the variability of these consequences by demographic attributes such as disability type, gender, and health insurance type; and (3) the inter-relatedness and multidimensionality of these consequences.

Methods : Qualitative, semi-structured, in-depth interviews were administered over the telephone to 30 participants with spinal cord injury, cerebral palsy, or multiple sclerosis as part of a nation-wide study on access and utilisation in the USA. Interviews were transcribed and coded for analysis using the qualitative analysis program, NVivo.

Results : Consequences were grouped into one of five categories: social, psychological, physical, economic and independence issues. Responses differed slightly with regard to disability type, gender and health insurance type. There was substantial overlap among consequence categories. For most respondents, negative consequences were not limited to just one area--frequently, one consequence triggered others.

Conclusions : Health insurers and providers need a better understanding of the multiple consequences of access barriers. Based on this knowledge, detrimental and costly effects of inappropriate service delivery could be more effectively prevented. Implications for health care services and policy are discussed.     

Ethical challenges in home mechanical ventilation: a secondary analysis

The aim of this study was to explore the ethical challenges in home mechanical ventilation based on a secondary analysis of qualitative empirical data. The data included perceptions of healthcare professionals in hospitals and community health services and family members of children and adults using home mechanical ventilation. The findings show that a number of ethical challenges, or dilemmas, arise at all levels in the course of treatment: deciding who should be offered home mechanical ventilation, respect for patient and family wishes, quality of life, dignity and equal access to home mechanical ventilation. Other challenges were the impacts home mechanical ventilation had on the patient, the family, the healthcare services and the allocation of resources. A better and broader understanding of these issues is crucial in order to improve the quality of care for both patient and family and assist healthcare professionals involved in home mechanical ventilation to make decisions for the good of the patient and his or her family.     

Perspectives of women with disabilities on reaching those who are hard to reach.

Healthcare needs of women with disabilities are often neglected, even for women who are well connected to the community and to the healthcare system. So-called "hard-to-reach" women, whose degree of disability impedes use of community resources, have even greater difficulty obtaining health care. The purpose of this study was to gain insight into the perceptions of women with mobility and sensory limitations about several healthcare issues that may affect them: barriers to obtaining care, sources of information about health issues, ways to improve access to care, and ways to help hard-to-reach women overcome barriers to health care and health information. Researchers conducted six focus groups, comprising 43 women with limitations of mobility, hearing, or vision. To validate the women's input, researchers conducted two additional focus groups: the first comprised female physicians with special interest in the health care of women with disabilities, and the second included professional administrative staff of agencies that provide services for people with disabilities. In several cases, members of the physician and agency focus groups were themselves women with disabilities. In addition, 16 women with disabilities participated in an online survey; their responses were used to validate the findings of the face-to-face focus groups. Transcribed data were content analyzed and 10 themes identified. Seven of those themes are discussed in this article: communication barriers; lack of knowledge and awareness among healthcare providers; access issues; working the system; system issues; outreach to healthcare providers; and reaching hard-to-reach women. The findings of this study can provide direction to development of more effective outreach to hard-to-reach women with disabilities, resulting in better integration of healthcare services for this population.     

Disability in post-earthquake Haiti: prevalence and inequality in access to services

Abstract

Purpose: To assess the prevalence of disability and service needs in post-earthquake Haiti, and to compare the inclusion and living conditions of people with disabilities to those without disabilities. Methods: A population-based prevalence survey of disability was undertaken in 2012 in Port-au-Prince region, which was at the centre of the earthquake in 2010. Sixty clusters of 50 people aged 5?+?years were selected with probability proportionate to size sampling and screened for disability (Washington Group short set questionnaire). A case-control study was undertaken, nested within the survey, matching cases to controls by age, gender and cluster. There was additional case finding to identify further children with disabilities. Information was collected on: socioeconomic status, education, livelihood, health, activities, participation and barriers. Results: The prevalence of disability was 4.1% (3.4–4.7%) across 3132 eligible individuals. The earthquake was the second leading cause of disability. Disability was more common with increasing age, but unrelated to poverty. Large gaps existed in access of services for people with disabilities. Adults with disabilities were less likely to be literate or work and more likely to visit health services than adults without disabilities. Children with disabilities were less likely to be currently enrolled at school compared to controls. Children and adults with disabilities reported more activity limitations and participation restriction. Conclusion: Further focus is needed to improve inclusion of people with disabilities in post-earthquake Haiti to ensure that their rights are fulfilled.

• Implications for Rehabilitation

• Almost one in six households in this region of Haiti included a person with a disability, and the earthquake was the second leading cause of disability.

• Fewer than half of people who reported needing medical rehabilitation had received this service.

• The leading reported barriers to the uptake of health services included financial constraints (50%) and difficulties with transport (40%).

• People with disabilities did not participate equally in education or employment and had poorer access to health care.

     

Integrating 'mental illness' and 'motherhood': the positive use of surveillance by health professionals. A qualitative study

BACKGROUND: Sociologists have long recognised the social control functions of different social institutions. Nurses, however, often appear more comfortable with formulating their roles in altruistic terms. OBJECTIVES: In this paper, we examine the relevance of Foucauldian concepts, in particular that of surveillance, to an understanding the relationship between healthcare professionals (especially nurses) and their patients. DESIGN: We use the concept of 'interactional frames' to analyse data from qualitative interviews with mothers who have a mental illness. SETTINGS: The research, from which the data in this paper were taken, was carried out in a largely urban area of south-east Wales, in the UK, during 2001 and 2002. PARTICIPANTS: The participants were 11 women, each with one or more children, all of whom were under the care of their local Community Mental Health Team. METHODS: The paper draws on findings from a wider study of the influence of child-care responsibilities on access to services for women with mental health problems. Data were generated through individual, semi-structured interviews, carried out and transcribed by one of the authors (BD). RESULTS: Women produced accounts of their mothering practices which acknowledged the norms of 'good' mothering. They spoke about the need for 'impression management' in their clinical encounters, both those in which they were the patient and those undertaken on behalf of their children. The data showed health professionals moving between frames in which the woman was a mother and in which she was a person with a mental illness, and integrating the two frames to the woman's benefit. CONCLUSIONS: Women who are mothers and who are also users of mental health services face particular challenges in managing the contradictory aspects of their dual identity. Health professionals can use their disciplinary power in a positive way, to help women in this task.     

A guide to the use and care of vascular access devices in the palliative care setting

There has been a steady increase in the number and range of vascular access devices used in all areas of health care. With this increase there comes a requirement that health professionals dealing with these devices be aware of the range available, indications for use, and the most up to date guidance on the care and maintenance procedures. Care of the device is paramount to preventing complications. This article provides an overview of the types of venous access devices that may be encountered when a patient is transferred to palliative care services, as well as of the procedures for routine maintenance.     

Reducing disparities in the access and use of Internet health information. a discussion paper

Internet health information is rated highly by users and is used to compensate for gaps in health information provided by health professionals. Greater understanding of health issues and changes to personal health management has been reported as a consequence of Internet use. However, there are significant disparities in the access and use of Internet health information linked to income, education and ethnicity. In this paper a case is presented that on-line health information particularly benefits the already privileged in terms of health care; well-educated people with access to economic resources. Several intervention points are suggested to improve Internet health information accessibility and use for all population groups. Interventions at an institutional level include improving equity of Internet access through the provision of free services at strategic sites and improving the readability and cultural acceptability of health information. Individually focused interventions involve skill development to enable effective navigation of Internet sites, identification of patient and families' information needs and support to develop evaluation skills. The effectiveness of these interventions in reducing disparities is reliant on nurses and other health professionals' expertise in accessing, evaluating and using Internet health information in their clinical practise. On-line health information is a powerful medium for quick and dynamic knowledge distribution. The challenge for nurses and other health professionals is directing that knowledge to the groups most disadvantaged in the current health care systems, with an agenda of reducing inequalities in access to health information.     

Getting Beyond the Plateau: Bridging the Gap Between Rehabilitation and Community-Based Exercise

Rehabilitation specialists have a unique opportunity to serve as the drivers of change in promoting the use of exercise facilities by people with newly acquired disabilities. Identifying programs that are effective and sustainable for extending recovery in a community-based exercise facility after rehabilitation may reduce the risk of secondary health complications and optimize health and function. This article describes an approach for closing the gap between inpatient and outpatient rehabilitation and the use of community-based exercise facilities by people with disabilities. Extending recovery from rehabilitation to community-based exercise requires a transitional setting (eg, hospital-based fitness facilities and specialized fitness centers and programs for people with disabilities) that provides greater support and supervision in teaching individuals with disabilities (and, when necessary, their caregivers) how to exercise safely and effectively and access the programs, equipment, and services available in these facilities. With the shortened amount of rehabilitation time that many patients are given after acquiring a disability or being treated for a new health condition, community-based exercise facilities and the fitness professionals who are employed in them must become part of the rehabilitation continuum and obtain additional training to better serve the needs of people with newly acquired disabilities who are leaving rehabilitation.