Preliminary Findings of Health Promotion Plans among Institutions Caring for Persons with Intellectual Disabilities: A National Survey in Taiwan

Background In encouraging good health for people with intellectual disabilities, health promotion serves as an effective intervention. However, little is known about health promotion strategies for this sector of the population. The objectives of this study were to describe the current profile of health promotion planning among institutions caring for people with intellectual disabilities in Taiwan, and to examine differences among institutions. Method The study employed a cross‐sectional survey of 157 directors of institutions caring for people with intellectual disabilities in Taiwan. A structured questionnaire was posted to obtain information relating to the planning, budget appropriations, and decision‐making processes concerning health promotion at these institutions. Results A total of 120 directors of institutions completed the posted questionnaire. Health promotion plans were operative at 88.4% of the institutions. Among these institutions, 82 settings (76.6%) set aside funding on an annual basis for health promotion programmes for people with intellectual disabilities. With regard to budget spending, most of the respondents did not know exactly what percentage of the annual budget was spent on the health promotion programmes operating in their institutions. The process of health promotion implementation was multidisciplinary and intersectoral in terms of the staff involved. Those institutions that employed skilled nurses were more likely to run health promotion programmes than those institutions without nursing staff. Conclusions Further research should be focused on the efficacy of health promotion programmes for people with intellectual disabilities, and on the creation of supportive environments in institutions for enabling these people to participate in the process of decision‐making on health promotion issues.     

Mainstream In‐Patient Mental Health Care for People with Intellectual Disabilities: Service User,Carer and Provider Experiences

Background Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services. Materials and Methods Face‐to‐face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers. Results Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities. Conclusions While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person‐centred practices and active partnership with intellectual disability services.     

Roles of General Practitioners in the Provision of Health Care Services for People with Intellectual Disabilities: A National Census in Taiwan

Aims The aims of the present study were to explore the perceptions of general practitioners (GPs) in the provision of health care services for people with intellectual disabilities and to analyse GPs’ priorities in the delivery of health care services to this group of people in Taiwan. Methods The study employed a cross‐sectional design and was conducted by a census method, the aim being to collect information from all GPs in Taiwan. A questionnaire was mailed out, between 10 April 2006 and 16 June 2006, and the responses provided by 331 GPs (response rate = 16) were included in the analysis. Results The results showed that most of the respondents did not have sufficient experience to deal with patients with intellectual disabilities and lacked adequate knowledge about intellectual disabilities. Indeed, respondents expressed the need for on‐the‐job training in the field of intellectual disabilities and generally agreed that their role in providing health care services for people with intellectual disabilities was important. However, they were generally not satisfied with the achievements of their role on health care issues. The study highlighted that many issues need to be prioritized for people with intellectual disabilities in relation to policy planning at different health care stages (primary, secondary and tertiary health care). The results also revealed that those senior GPs with considerable experience in treating people with intellectual disabilities were more likely satisfied with their role in providing health care for this group of people. Conclusions It is concluded that Taiwanese health and welfare authorities need to focus more carefully on issues concerning deficiencies in the training of GPs, and to employ appropriate strategies to address health care issues raised in the present study so as to improve the quality of care for people with intellectual disabilities.     

Intellectual Disability and HIV Infection: A Service-related Study of Policies and Staff Attitudes

This paper reports on a study of staff knowledge and attitudes in relation to policies on HIV infection in organisations providing services to people with intellectual disabilities. Staff in three different service providers (NHS, Social Service and private and voluntary organisations) were sent the Staff Attitudes Towards Persons with Learning Disabilities and HIV Infection Scale (LDHIVS; Murray & Minnes, 1994a). The response rate was 54%, (N = 178): 46% of respondents did not know or were unsure of policies concerning clients with HIV infection; 69% of respondents reported that these policies either did not influence their behaviour or that they were unsure if they did. Results also indicated that staff working in a direct-care capacity for the NHS held less positive attitudes towards clients with HIV infection than NHS staff working in a management capacity. The results are discussed with reference to HIV prevention, health promotion and appropriate service support for people with intellectual disabilities.     

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.     

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.     

The challenges for nurses communicating with and gaining valid consent from adults with intellectual disabilities within the accident and emergency care service

Aim. This paper reports the challenges experienced by nurses within accident and emergency departments in communicating with and gaining valid consent from adults with intellectual disabilities. Background. Consent is both a legal requirement and an ethical principle required to be obtained by health‐care professionals, prior to the start of any examination, treatment and/or care. Central to the process of seeking consent is effective communication. However, evidence shows that people with intellectual disabilities are not viewed by professionals within acute general hospitals as a vital source of information, neither are they often communicated with directly, nor involved in discussions or decisions about their health care and are frequently not directly asked for their consent. Method. A purposive sample of nurses working within the accident and emergency departments of five general hospitals was recruited to participate in this qualitative study. Data were collected from five focus groups. Findings. Effective communication was identified as the most challenging aspect in caring for adults with intellectual disabilities within this environment, having an impact on the assessment of needs, informing patients of their health status and seeking valid consent. Conclusions. Fundamental to the provision of quality care are the concepts communication, choice and control. However, these issues are perceived to be more challenging in the provision of health care to people with intellectual disabilities. Communication and consent, therefore, require further consideration within the educational and clinical areas to strengthen nurses’ competence in caring for people with intellectual disabilities, with an emphasis and understanding that choice and control are key principles for all people, being central aspects to the provision of an inclusive service for people with intellectual disabilities. Relevance to clinical practice. All nurses need to have a greater awareness of learning disability, how to increase opportunities for effective communication and be very familiar with the issue and guidelines relating to consent, to ensure that people with learning disabilities have choice, control and are more active in decision making regarding their health.     

Palliative care provision for people with intellectual disabilities: interviews with specialist palliative care professionals in London

Growing numbers of people with intellectual disabilities (ID) are in need of palliative care, but there is inequity of access to palliative care services for this group. This study investigates the issues and difficulties arising for palliative care staff in providing care for people with ID. Semi-structured interviews were conducted with 32 palliative care professionals in London. Factors affecting palliative care provision for people with ID included social issues (home situation and family issues), emotional and cognitive issues (fear, patient understanding, communication, cooperation and capacity to consent), problems with assessment, and the impact on staff and other patients. An underlying theme was the need to take more time and to build trust. Despite the challenges, many palliative care staff managed the care of people with ID well. The importance of collaboration with carers and ID services is highlighted. Further studies are needed to investigate how widespread the problems are.     

The palliative care needs of people with intellectual disabilities: a literature review

People with intellectual disabilities are among the most disadvantaged groups in society. A literature review was conducted aiming to answer the following question: What are the palliative care needs of people with intellectual disabilities? The literature review covers case histories, morbidity and mortality patterns for people with intellectual disabilities, their healthcare needs and primary care provision, the way they may present symptoms, their conceptualization of illness and death and issues around education and training. While the literature review reveals a lack of empirical data around the palliative care needs of people with intellectual disabilities, a number of potential problem areas are highlighted. These include late presentation of illness, difficulties in assessing symptoms, difficulties in understanding the illness and its implications and ethical issues around decision making and consent to treatment. It is suggested that future studies will need to include the views and experiences of people with intellectual disabilities themselves. Areas for possible future development include symptom assessment, evaluation of current practice and access to services and the development of information and training materials.     

Maximizing community inclusion through mainstream communication services for adults with severe disabilities

Government policies in developed countries have emphasized the importance of community inclusion to improve the health and wellbeing of citizens. In order to achieve this, a reorientation of human services to include all people with disabilities has commenced with specialist disability services providing only limited supports. One vulnerable group of adult citizens are those with severe cognitive impairments. These citizens live either with their family or in small group homes supported by paid staff. Many of these people have little or no functional speech and are at an increased risk of social exclusion. This paper presents a discussion of the relevant literature underpinning the provision of mainstream speech-language pathology services to adults with severe cognitive disabilities. In particular we focus on practice considerations that might assist speech-language pathologists in providing effective and efficient services that support people with severe intellectual disability to live meaningful lives in the community. Five main considerations are discussed: (1) applying a holistic model to communication practice; (2) understanding terminology and the process of assessment; (3) considering the role of communication partners; (4) training communication partners; and (5) using communication supports to assist community inclusion.     

Service Provision for Young People with Intellectual Disabilities and Additional Mental Health Needs: Service‐providers’ Perspectives

Background Very little is known about young people with intellectual disabilities who experience additional mental health problems. The perspective of service providers has been highlighted as one unresearched area. Method Semi‐structured interviews were completed with senior service providers. Aims: (1) to explore experiences of working with young people with intellectual disabilities and additional mental health problems and their families; (2) to examine views on services’ ability to meet the needs of this group. Results Service providers identified a gulf between current policy and the reality for this group, not least in terms of all agencies working in partnership. All agencies described instances when young people in this group fall through gaps between services. Interviewees identified a range of factors that promote good outcomes. Conclusions The results suggest that the focus of current policies to promote joint working needs to be broadened beyond health and social services to ensure much improved links with education providers and the voluntary sector if the needs of this group are to be met.     

Individual Characteristics and Service Expenditure on Challenging Behaviour for Adults with Intellectual Disabilities

Background English policy argues that people with intellectual disabilities should be supported in their local communities. There is considerable evidence that this aspiration is not being achieved. This paper seeks to look at the subsection of people with intellectual disabilities who have expensive care needs because of challenging behaviour, to identify the decision‐making processes that have led to current service provision and expenditure and to suggest improvements. Materials and Methods We carried out a survey within five North London boroughs to investigate the characteristics of a cohort of people with intellectual disabilities and challenging behaviour in high‐cost accommodation (over £70 000/annum). Postal questionnaires and face‐to‐face interviews were conducted with stakeholders with intellectual disabilities and patterns of current costs were estimated from existing data provided by the commissioning authorities in the five boroughs. Results Two hundred and five individuals with intellectual disabilities and challenging behaviour were identified. They were accommodated in placements provided by 97 separate providers, both in and out‐of‐area. Those more likely to be placed out‐of‐area were younger, had multiple health problems, significant challenging behaviour and mental health problems including autistic spectrum disorders. The local community intellectual disabilities teams identified a number of difficulties in meeting the needs of those service users. Conclusions Expenditure on all placements for service users with intellectual disabilities is significant. There is a notable lack of investment in local service development. A coherent approach is required, often across service boundaries. The authors suggest a model for targeted investment aimed at supporting effective local services, and reducing the need for and expense of out‐of‐area placements.     

Palliative care provision for people with intellectual disabilities: a questionnaire survey of specialist palliative care professionals

There is a growing interest in the palliative care needs of people with intellectual disabilities (ID). There are indications that palliative care staff face particular problems providing care to this group, but empirical data about the extent of the problem are lacking. This study aims to gain insight into the current use of palliative care services by people with ID in London, to identify the prevalence and severity of problems faced by palliative care professionals and to identify strategies that will facilitate an improvement in access and delivery of palliative care services to people with ID. A postal questionnaire was developed for this study and returned by 543 professionals working in 53 specialist palliative care services in London (57% response rate). Sixty-seven percent of respondents had supported a patient with ID at some point in their palliative care career. Problems arising from the patient's difficulty in understanding the illness and treatment were reported as the most pertinent. Other prevalent problems included difficulty around communication, assessment and patient fear. Respondents emphasised the need for collaboration with carers and other services. Link worker schemes, training and access to background information were seen as most helpful. The authors conclude that palliative care services appear to be under-used by people with ID. There is a distinct set of problems related to the provision of palliative care for people with ID. Palliative care services should assess the nature and level of their service provision for people with ID. Future research should include epidemiological studies to assess need and include people with ID as informants to evaluate the effectiveness of palliative care provision.     

An Investigation of Nursing Staff Attitudes and Emotional Reactions Towards Patients with Intellectual Disability in a General Hospital Setting

Background It has been suggested that inequalities in health care for people with intellectual disabilities may be partly explained by negative attitudes of health professionals. This study aimed to investigate the attitudes and emotional reactions reported by nursing staff working in general hospitals towards caring for patients with intellectual disabilities. Method Attitudes and emotional reactions were measured using a self‐report, vignette style questionnaire, tested for validity and reliability. Attitudes towards patients with physical disabilities were also assessed to act as a comparison. Results Nursing staff reported less positive attitudes, more negative emotions and fewer positive emotions, in response to caring for a patient with an intellectual disability compared to a patient with a physical disability. Occupational status (registered general nurse, student nurse, nursing assistant) had no effect upon respondents reported attitudes or emotions. Finally, attitudinal and emotional variables were significantly correlated, with positive emotions being associated with more favourable attitudes. Conclusions Although caution needs to be exercised when inferring actual behaviour from attitudes expressed, it is suggested that the presence of less positive attitudes and feelings amongst nursing staff towards patients with intellectual disabilities may affect the quality of care. Recommendations for future research and service development includes: the need to focus upon improving attitudes of nursing staff through training, and increased joint working between acute care services and Community Intellectual Disability Teams.     

Palliative care for disadvantaged groups: people with intellectual disabilities

Abstract

People with intellectual disabilities are among the most socially excluded and vulnerable groups in Ireland today. They are at increased risk of early death and they receive poorer health care than the general population. The World Health Organization has pointed out that inequalities in service provision to this group extend to the delivery of palliative care. The population of people with intellectual disabilities is an ageing one, and its changing demographics challenge services that were originally developed for children and young adults and that focused on enabling their clients to lead full and productive lives. Conditions such as cancer, cardiovascular and respiratory disease are now leading causes of death, and this has important implications for service planning. Although the population is relatively small, its needs demand high priorities in the healthcare services. This is because many people with intellectual disabilities need support throughout their lives and have longer and more intense involvement with services than the vast majority of citizens. People with intellectual disabilities are people first, and should be recognised as individuals, rather than on the basis of definitions. However, there is reason to assess their palliative care needs as a client group. This is because people with intellectual disabilities not only have the universal palliative care needs of the general population, but also have additional and special needs. This paper reviews the palliative care needs of people with intellectual disabilities, dealing with such issues as symptomatology, communication and family dynamics. It draws attention to the gaps that currently exist in end-of-life care services for adults with intellectual disabilities and concludes that a partnership approach between the intellectual disability and palliative care services will be needed in order to provide effective patient-centred and family-oriented care.     

Investigating Organizational Culture: A Comparison of a ‘High’‐ and a ‘Low’‐Performing Residential Unit for People with Intellectual Disabilities

Background This pilot study investigates organizational culture in small community‐based residential services for people with intellectual disabilities, one of the under‐researched determinants of staff behaviour and performance. Staff performance is of primary importance in the provision of quality services. Materials and methods Two matched residential units were assessed using COMPASS: A Multi‐Perspective Evaluation of Quality in Home Life, and identified as ‘high’ and ‘low’ performing. The organizational culture of the units was assessed using the Organizational Culture Inventory in order to investigate any associations. Results The unit with better quality outcomes demonstrated a more positive organizational culture overall, with statistically significant lower scores on three negatively influential cultural styles, namely, oppositional, competitive and perfectionistic. Conclusions There may well be a meaningful relationship between organizational culture and quality outcomes, although the nature of this relationship is far from clear. The continuation of investigations into organizational culture is encouraged.     

Quality of Life Outcomes for People with Intellectual Disabilities Living in Staffed Community Housing Services: a Stratified Random Sample of Statutory,Voluntary and Private Agency Provision

Background Small scale, community‐based, staffed housing is a significant form of residential provision for people with intellectual disabilities. Such services are provided by health and local authorities, and voluntary and private agencies, yet little is known about how provision varies between provider sectors. Methods This study compared sectors in terms of the processes operating within residential services, and objectively and subjectively assessed quality of life (QOL) resident outcomes. Measures of setting structure and processes and resident outcomes were undertaken on a stratified random sample of 47 small scale, community‐based residential settings which accommodated a total of 154 people with intellectual disabilities. Results In general, provider agencies did not differ in terms of the characteristics of the residents they served, the structure of settings, the processes underlying service operation or resident outcomes. However, across agencies there was considerable variation in residents' life conditions when they were measured objectively. Better outcome tended to be significantly correlated with the ability of residents. This was not the case with results on subjective measures (which were also higher than those on objective measures). Conclusions The results reinforce the need to design services which effectively support people across the ability spectrum. Also, an argument is made for the continued utility of objective measurement in the assessment of service quality.     

健康扶贫背景下残疾人就诊行为研究

目的 研究健康扶贫背景下残疾人就诊行为。方法 利用全国健康扶贫动态管理系统数据,描述统计法分析残疾人的就诊行为。结果 “三个一批”行动计划以慢病签约服务为主;残疾人每年就诊次数逐渐增加、县域内就诊比例增加、住院比例下降,就诊医院以二级医院、乡镇卫生医院和社区卫生服务中心为主,医疗支出较高,这些现象在不同残疾状况间存在差别。结论 健康扶贫以来,残疾人就诊行为明显改善,未来应巩固健康扶贫成果,加大残疾人慢病预防,进一步提高残疾人医疗服务可及性和医疗保障水平。