Attitudes towards people with physical or intellectual disabilities: nursing students and non‐nursing peers

Title. Attitudes towards people with physical or intellectual disabilities: nursing students and non‐nursing peers. Aim. This paper is a report of a study of the attitudes of Dutch nursing students towards people with physical or intellectual disabilities. Background. Attitudes of healthcare professionals are a major factor in the rehabilitation and self‐acceptance of persons with disabilities. Consequently, it is important that nurses develop or maintain positive attitudes towards people with disabilities during their education. However, more knowledge is needed about current attitudes of nursing students and factors influencing these attitudes. Methods. A sample of Dutch nursing students (n = 81) and an age‐matched group of non‐nursing peers (n = 48) completed standardized scales measuring attitudes about physically or intellectually disabled people. Data were collected in 2006. Findings. Nursing students were more positive towards physically disabled people than their peers, and more strongly endorsed empowerment and similarity of intellectually disabled people. These attitudinal differences generally remained statistically significant after multivariate adjustment for demographic variables and experience and contact with individuals with disabilities. An important independent determinant of a positive attitude towards physically disabled people in the total sample was having a relative or friend with a physical disability. This association, however, was not apparent in attitudes towards intellectually disabled persons. Conclusion. Educational interventions aimed at improving attitudes towards people with disabilities should include focus on forms of contact beyond the context of formal care relationships.     

The stigma of disability: Croatian experiences

Purpose: The aim of this paper is to get an insight into understanding the stigma of disability based on the experience and perception of people with disabilities and professionals who work with them. Methods: Qualitative research methods were used with two focus groups: one with people with disabilities (five participants) and other with professionals (seven participants). After data were collected, a qualitative content analysis was made. Results: The results indicated that participants perceived and experienced stigma of disability through intrinsic and extrinsic elements of stigmatization. The intrinsic elements refer to the feeling of being different as a result of negative attitudes, prejudices and stereotypes. The extrinsic elements derive from the relationship of the system towards people with disabilities: discrimination and labelling. Some of the major findings of this research are that the stigma of disability is shown through the inability of the people with disabilities to make their own decisions, the perception of the disability as the main feature of the person, the lack of criteria during education, perceiving disability as a precondition in choosing a partner and parental capability, parents’ decision-making about their children’s lives, overprotection and stigmatization in education and employment. Stigmatization leads to social exclusion and influences the quality of life. Conclusion: The stigma of disability is manifested through the impossibility of realizing basic human rights, of living life independently and of taking equal part in a local community.

Implications for Rehabilitation

• Members of both formal and informal social networks stigmatize people with disabilities in many aspects of their life.

• The realization of basic human rights is often limited or impossible for people with disabilities because of stigmatizing attitudes in Croatian society.

• The disability stigma determines lives of people with disabilities in Croatia.

     

Assessment of GPs' beliefs relating to the care of people with intellectual disabilities: A Taiwan-based,opportunity-guided approach

Purpose. This study was designed to investigate general practitioners' (GPs) beliefs about the perceived importance of their role in, and their satisfaction with, providing healthcare to people with intellectual disabilities. The identification of healthcare issues with potential for improvement was assessed using gap analysis and an opportunity-guided method.

Method. A cross-sectional census survey by a mail-structured questionnaire recruited 331 GPs (response rate = 16%) who provided information on healthcare for people with intellectual disabilities in 2006 in Taiwan.

Results. The results indicated that GPs considered their role in providing healthcare for people with intellectual disabilities to be important (mean score 7.2 – 8.3). However, the respondents generally did not feel satisfied (mean score 4.6 – 5.5) with their achievements in treating patients with intellectual disabilities. We found that the gender and educational level of the respondents were statistically correlated to the perceived importance they considered their work to have, while the factors of age, medical practice setting and training experience in intellectual disability were statistically correlated to GPs' perceived satisfaction in providing healthcare to people with intellectual disabilities (p < 0.05). Those healthcare issues of ‘training and experience in intellectual disability’, ‘multi-disciplinary and multi-sectoral cooperation’, ‘adequate competence in disability diagnosis’, ‘genetic consulting services’, ‘duty of disease prevention and health promotion’, and ‘adequate medical consultation time’ were the five most promising areas to be improved in healthcare for people with intellectual disabilities according to the opportunity-guided analysis.

Conclusions. This study highlights that health professionals need to examine carefully healthcare issues pertaining to people with ID, and that much more effort is required to develop appropriate healthcare policies based on the opportunity-guided health issues identified here.     

Access to Secondary Healthcare for People with Intellectual Disabilities: A Review of the Literature

Background There is growing evidence that people with intellectual disabilities have greater healthcare needs than the general population and that these needs are often unmet. Recently, increasing attention has been drawn to poor care received by people with intellectual disabilities when admitted to hospital. Method A literature search was conducted to identify studies on experiences of secondary healthcare for people with intellectual disabilities. Studies were published between January 1990 and March 2008. Results Thirteen studies were identified. Important influences on the experience of hospital care were: individual factors; the carer’s role; the attitudes, knowledge and communicative style of health staff; and the physical environment. A range of recommendations and initiatives have been developed to improve hospital care. Conclusion More research is needed, given that so few studies are published in this area. Initiatives to improve access to secondary healthcare need to be evaluated to inform the development of services.     

Nursing student perceptions of disability and preparation to care for people with intellectual disabilities

As people with intellectual disabilities live longer and develop more chronic illnesses, nurses will have increasing contact with them. Therefore, nurses must have both an accurate understanding of and a positive attitude toward this population to ensure optimal nursing care is received. A cross-sectional survey of second-year and fourth-year nursing students measured their perceptions of disability, their contact with people with intellectual disabilities, and their perceptions of education to prepare them to care for people with intellectual disabilities. Students most often identified disability as physical, using a wheelchair to represent that perception. Students were confident in their ability to transfer many of the skills they learned to care for people with intellectual disabilities but identified a need for more education about providing that care. Curricular changes to enhance nursing students' awareness and understanding of people with intellectual disabilities are recommended.     

Empathy, inclusion and enclaves: the culture of care of people with HIV/AIDS and nursing implications

AIM: This paper reports an empirical research study investigating specific features of the culture of care on a specialized unit supporting people living with human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS). BACKGROUND: The anxiety felt by healthcare workers coming into contact with people living with HIV and AIDS (PLWHA) has been recognized in numerous studies. There is often an amplified notion of threat and a worldview fuelled by stereotypes, which inevitably leads to negative attitudes and stigmatization. METHODS: An ethnographic approach was used, including a 14-month period of observation and 31 semistructured interviews. The data were collected during 2000 and 2001 in a large teaching hospital in the United Kingdom. FINDINGS: Carers working on this unit who regularly contributed to the care of this client group had a broad range of experience and in many cases had chosen to work in the field. They worked within a social context that had a high level of egalitarianism, a view of PLWHA that appeared more positive and less pejorative than others, and a strongly empathetic approach accompanied by close engagement with the client group. CONCLUSION: Using nursing staff specially prepared for the care of PLWHA could be the most effective way to minimize stigma and discrimination against this client group in the healthcare sector.     

Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client's perspective

Scand J Caring Sci; 2010; 24; 164–174
Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client’s perspective Background: Care and service trajectories for people with intellectual disabilities (i.e. people with mental retardations) are routes within the healthcare delivery system that consist of all the steps that people with intellectual disabilities and their families have to take in order to realise the needed care and services. Aim: This article aims to identify the quality aspects of trajectories that are considered important by people with intellectual disabilities and their parents/relatives. In addition, it examines how these aspects are related to quality determinants mentioned in the literature on integrated care and to authoritative models for quality assessment of care and service delivery. Methods: Quality aspects were collected during eight focus group discussions with people with intellectual disabilities or their parents/relatives. In addition, quality determinants of integrated care and authoritative models for quality assessment were selected by means of a thorough review of the literature. Finally, the quality aspects identified using focus groups were compared to the determinants and models found in the literature. Results: The quality aspects presented by people with intellectual disabilities referred particularly to the immediate situation in receiving care and services, such as ‘keeping appointments’ and ‘time and attention’, whereas parents/relatives also referred to broader ‘organisational issues’, such as ‘access to support’ and ‘problems with placement’. The quality aspects, however, are minimally related to the quality determinants of integrated care, probably because clients and their parents/relatives find it difficult to have an overview of the coherence between the various actions that have to be performed, when going through the trajectories. In contrast, the quality aspects seem to fit into the domains of the authoritative models for quality assessment, probably because of the minimal focus of the models on long‐term aspects in care and service delivery.     

Functional health illiteracy. Ethical concerns

Functional health illiteracy is a silent disability demanding the attention of healthcare professionals because it affects millions of people in the United States. Patients are reluctant to disclose this problem because they fear discrimination and stigmatization. Inadequate health literacy raises ethical questions because it is a barrier to healthcare and results in poor health outcomes. The purposes of this article are to provide an overview of functional health illiteracy, identify related ethical concerns, and discuss selected, relevant nursing implications. Nurses are in a unique position to serve as advocates, mediators, and translators for their patients who are functionally health illiterate.     

Stigmatization Behavior of Pre-Registration Nurses: Do the Self-Determined Psychological Needs Influence This?

Background/problem: Stigma and stigmatization are important concepts in the area of mental health and illness. Nursing and nurse education are continuously examining ways to understand and address the stigma toward people with a lived experience of mental illness. While the negative influence of stigma is understood, the variables that influence these behaviors are emerging. An area may provide insight into aspects that influence stigmatization of pre-registration nurses is motivation. Previous research has illustrated that individual motivation can significantly predict and influence work-related behaviors and actions across a range of work settings. Therefore, the purpose of this study was to examine the predictive influence that the motivational needs, as espoused by Self-Determination Theory, play in the stigmatization of pre-registration nurse toward people with a lived experience of mental illness. Approach: A total of 168 pre-registration nurses completed two surveys that measured support for their psychological needs and their stigmatization of people with a lived experience of mental illness. Outcomes/conclusions: Using a regression analysis, some psychological needs significantly influenced the stigmatization of pre-registration nurses. Results illustrate the potential importance of psychological needs in the training of the future nursing workforce.     

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.     

People with Intellectual Disabilities Living in Generic Residential Services for Older People in the UK

Background As part of a UK programme of work focusing on older people with intellectual disabilities, the circumstance of those who reside in generic services for older people were investigated. Materials and methods Questionnaires were sent to 2570 residential and nursing homes in 53 local authorities across the UK. Results Five hundred and thirty returned questionnaires identified 215 people with intellectual disabilities currently living in 150 homes. They were significantly younger than the other residents, and were placed in these homes more often because of organizational change or the ageing/death of a family carer, rather than any changes in their own needs. Several potential indicators of a low quality of life were identified, including limited opportunities to get out, to access day services, to have contact with family or friends and to receive input from professionals outside the home. Conclusions Attention needs to be given both to people with intellectual disabilities already residing in older people's services and to the prevention of further inappropriate placements.     

Include,differentiate and manage: gay male youth,stigma and healthcare utilization

O’BYRNE P and WATTS J. Nursing Inquiry 2012 [Epub ahead of print]
Include, differentiate and manage: gay male youth, stigma and healthcare utilization In Canada, there has been a recent increase in HIV incidence among young men who have sex with men. However, gay male youth (GMY) may forego HIV testing due to fear of stigmatization. Therefore, the aim of this research was to explore the perceptions of stigma in health care within this population. The research was conducted through a series of semi‐structured interviews with eight GMY aged 20–29, who frequented a gay‐friendly clinic in downtown Ottawa, Canada. In a sub‐analysis of the interviews utilizing the work of Hardt and Negri’s three‐part sequence – inclusion, differentiation and management – we found that homosexuality‐related stigmatization affects the interaction between GMY and health professionals. Interview participants perceived HIV‐related risk counselling as a manifestation of stigma. These findings reveal that the experience of stigma and stigmatization is not necessarily based on health professionals’ intentions, but rather, on patients’ perceptions of the interactions they have with health professionals. Specific modifications to the delivery of health care may help to overcome stigmatization.     

Assessment of GPs' beliefs relating to the care of people with intellectual disabilities: a Taiwan-based, opportunity-guided approach

PURPOSE: This study was designed to investigate general practitioners' (GPs) beliefs about the perceived importance of their role in, and their satisfaction with, providing healthcare to people with intellectual disabilities. The identification of healthcare issues with potential for improvement was assessed using gap analysis and an opportunity-guided method. METHOD: A cross-sectional census survey by a mail-structured questionnaire recruited 331 GPs (response rate--16%) who provided information on healthcare for people with intellectual disabilities in 2006 in Taiwan. RESULTS: The results indicated that GPs considered their role in providing healthcare for people with intellectual disabilities to be important (mean score 7.2-8.3). However, the respondents generally did not feel satisfied (mean score 4.6-5.5) with their achievements in treating patients with intellectual disabilities. We found that the gender and educational level of the respondents were statistically correlated to the perceived importance they considered their work to have, while the factors of age, medical practice setting and training experience in intellectual disability were statistically correlated to GPs' perceived satisfaction in providing healthcare to people with intellectual disabilities (p < 0.05). Those healthcare issues of'training and experience in intellectual disability', 'multi-disciplinary and multi-sectoral cooperation', 'adequate competence in disability diagnosis', 'genetic consulting services', 'duty of disease prevention and health promotion', and 'adequate medical consultation time' were the five most promising areas to be improved in healthcare for people with intellectual disabilities according to the opportunity-guided analysis. CONCLUSIONS: This study highlights that health professionals need to examine carefully healthcare issues pertaining to people with ID, and that much more effort is required to develop appropriate healthcare policies based on the opportunity-guided health issues identified here.     

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.     

Inclusive nursing care for people with intellectual disabilities using urology services

The need to address the health needs and provide equity of access to health care for people with intellectual disabilities has been highlighted nationally within the UK, as well as internationally. Despite a similar likelihood (if not an increased likelihood) of urological problems among people with intellectual disabilities, this topic appears to have received limited attention within the wider nursing or the specific intellectual disability literature. This paper considers the potential challenges that may be encountered in seeking to provide care and support a person with intellectual disabilities who may require the support of a urology nurse and provides some suggestions for practical actions to respond effectively.     

Experiences of self‐stigmatization and parenting in Chinese mothers with severe mental illness

Mental health stigma has serious ramifications on people with a severe mental illness (SMI). Stigma damages self‐esteem, recovery outcomes, family relationships, socialization abilities, access to housing, and career prospects. The cultural tendencies of Chinese people have been shown to be associated with particularly high levels of stigmatization. These cultural tenets can result in high levels of self‐stigma due to experiencing shame and a perceived need to keep mental illness a secret. Although there is a lack of existing evidence, it is possible that such experiences present unique challenges to Chinese mothers diagnosed with SMI when they parent their children. Therefore, this qualitative study explored the experiences of parenting and self‐stigmatization of Chinese mothers with SMI. Individual semi‐structured interviews were conducted with 15 mothers who were direct carers of their children aged under 18 and who were receiving community‐based care in Hong Kong. Manual inductive thematic analysis was used to analyse the interview data. Three main themes related to self‐stigmatization emerged from the interviews: (i) distancing and being distanced; (ii) doubting myself; and (iii) struggling for control. The experiences of self‐stigmatization appeared to damage these mothers’ self‐efficacy, which may negatively affect their parenting self‐esteem, tendency to seek professional help, and ability to manage their own mental health. Strategies to improve self‐efficacy, including psychoeducation, and additional childcare support/resources are required for mothers with SMI so they can better manage and balance the demands of motherhood and their mental healthcare needs.     

Cross‐Cultural Validation of a Measure of Felt Stigma in People with Intellectual Disabilities

Background One trade‐off for increased independence of adults with intellectual disabilities in developing countries is that they may find themselves more exposed to the negative perceptions held by the general population regarding the mentally ill and disabled. The aim of this study was to adapt and translate a tool to measure felt stigma in people with intellectual disabilities designed in the United Kingdom (UK) to make it culturally viable, and to determine its reliability and validity in the multi‐ethnic and multilingual context of South Africa (SA) and to compare the item responses and factor structures of the tool between the UK and SA. Methods We translated the tool into local languages and refined it by conducting focus groups and pilot studies with professionals and adults with intellectual disabilities, after which test–retest reliability, factor analysis and internal consistency were calculated. Results Participants were from three different population groups: Afrikaans (n = 71; 37%), English (n = 67; 35%) and Xhosa (n = 53; 28%), who had mild (n = 106; 56%) or moderate intellectual disabilities (n = 85; 44%). 98 (51%) were re‐interviewed. The resulting international version of the perceived stigma measure consisted of 10 questions with good test–retest reliability (κ ranging from 0.41 to 0.59) and a similar factor structure to the UK version, despite including a different set of questions. Conclusions There is evidence for the validity of felt stigma ratings reported by adults with intellectual disabilities, despite different cultural and health service contexts.     

Medical care services for people with intellectual disabilities living in the general community: A cross-sectional survey of inpatient care utilization in Taiwan, 2001

Background. The medical care needs and problems of persons with intellectual disabilities (ID) living in the general community have received limited attention in previous studies. The aim of this article is to describe aspects of medical care utilization among people with ID living in the general community, with particular emphasis on examining the type and determinants of inpatient care utilization in Taiwan.

Methods. A cross-sectional survey of people with intellectual disabilities was employed. A total of 997 respondents who provided fully completed data concerning inpatient care utilization were recruited into the analysis.

Results. A total of 12.4% of individuals with intellectual disabilities had used inpatient care in the 7 months prior to the survey. The average number of inpatient care visits in that time was 1.43, with an average hospital stay of 16.91 days. Surgery, fever, gastrointestinal disorders, psychiatric disorders, and accident were the main causes of inpatient care utilization. A stepwise logistic model showed that the factors of holding a Major Illness Card, regular medicine-taking and self-perceived health status were statistically significant to inpatient care utilization of people with intellectual disabilities.

Conclusions. Medical care providers and policy makers need to be aware that many people with intellectual disabilities have increased medical care needs that may require modification of standard medical care practices and service models in society.     

Addressing the need for education: curriculum development for nurses about intellectual and developmental disabilities

People with disabilities and national and international agencies are voicing their views, forcing health care providers to look at how people with disabilities are treated in the health care system and to find ways to help them achieve equal access to quality care. Education about nursing care of patients with I/DD is limited in basic nursing education programs and for nurses who are in practice. A number of developmental disabilities nursing projects are addressing this need with curriculum development that has validated the need for education and has begun testing the various methods of instruction. As the curriculum is disseminated in written or Internet-accessible formats, nurses in education and practice will be able to find resources that target a specific topic area or a set of comprehensive instructions to acquire a better understanding of the comprehensive needs of people with I/DD and better ways to provide care. There is a need for a greater integration of curriculum about nursing care of people with developmental disabilities into basic nursing education at all levels and further evaluation of the impact of this curriculum on nursing care for people with I/DD. The hope is that these efforts can improve the education of nurses and other health care providers for the direct benefit of individuals with intellectual disabilities.     

Reducing inequalities in healthcare provision for older adults

The UK has a rapidly ageing population with increasing healthcare needs. Yet social isolation and exclusion, resulting from stigma and age discrimination, means that many older people are faced with unequal access to health care, referral and treatment. Inequalities in health care are particularly prevalent among older people with mental health issues and those from black and minority ethnic backgrounds. Healthcare professionals need to encourage greater involvement of older people in health promotion and community-based healthcare services. Nurses are exemplars for health service delivery and are ideally placed to promote health care that is free from age-related discrimination.