Lived experience of middle-aged women living with a disability in Isaan, Thailand

Abstract The purpose of this study was to explore and describe the experiences of middle-aged women living with a disability in Isaan, Thailand. Sixteen women with disabilities, aged 40–60 years, were initially recruited by purposive sampling and, subsequently, theoretical sampling was employed. A qualitative method was applied. The data were collected by using in-depth interviews and observations and these datasets were triangulated. The qualitative data were analyzed by using content analysis. To increase trustworthiness, prolonged engagement, triangulation of the data, peer debriefing, and member checks with the participants were used. The results show that three inter-related themes emerged: dealing with unpredictable fluctuations in physical competence and health status, maintaining the gender role under physical limitation, and a need for a supportive environment. The results indicate that gender and culture play a significant role in the daily lives of women with disabilities. Based on the study's findings, a gender-and culture-sensitive nursing care system is essential.     

兰州市城关区残疾人生存质量的影响因素解析

目的:研究兰州市城关区残疾人生存质量,为加强城关区残疾人保障体系建设提供基线资料和询证.方法:采用多阶段分层整群抽样抽取兰州市城关区登记在册的606例残疾人,首先使用世界卫生组织残疾人生存质量量表、残疾态度量表、残疾人照顾质量量表和自编基本情况问卷以面访或指导自填形式完成,其次通过拟合生存质量影响因素结构方程模型构建多...     

A Comparison of Quality of Life Outcomes for People with Intellectual Disabilities in Supported Employment,Day Services and Employment Enterprises

Background Policy objectives for people with intellectual disabilities include day service modernization and the promotion of paid employment and quality of life. Quality of life is under represented as an outcome measure in vocational research. This research compares subjective and objective quality of life, and quality of work environment for adults with intellectual disabilities in supported employment, employment enterprises and day services with non‐disabled workers in community employment. Methods Comprehensive Quality of Life Scale, and Work Environment Scale were collected for people with intellectual disabilities: 17 supported employees; 10 employment enterprise workers; 10 day service attendees; and 17 non‐disabled work colleagues of supported employees. Results Supported employees reported higher objective quality of life than employment enterprise workers and day service attendees. Non‐disabled co‐workers reported higher objective quality of life and autonomy at work than the three groups of people with intellectual disabilities. Supported employees reported higher subjective quality of life than non‐disabled co‐workers. Conclusions The findings support the utility of supported employment as a means to provide constructive occupation and enhanced quality of life to people with intellectual disabilities. However, closing the gap with respect to non‐disabled co‐workers on objective quality of life measures represents a challenge and will require improving the quality of job finding and workplace support and the training provided.     

Same‐Sex Relationships and Women with Intellectual Disabilities

Background Limited existing research looking at homosexuality and people with intellectual disabilities has identified a low level of knowledge, homophobic attitudes and negative experiences for gay men. Mainstream research has identified traditional gender role beliefs to be highly associated with negative attitudes towards homosexuality. This study examined attitudes towards homosexuality and gender role beliefs in a group of women with intellectual disabilities. Methods The sample consisted of 27 women. Three self‐report measures were administered to measure the knowledge of homosexuality, attitudes towards homosexuality and gender role beliefs. Results The participants were found to have limited knowledge, especially regarding lesbianism and to hold prejudicial beliefs. Traditional gender beliefs were also identified and were associated strongly with more negative attitudes towards homosexuality. Conclusions The implications of these findings suggest that education that focussed on the flexibility of gender roles may be beneficial in addition to an emphasis on developing more positive attitudes towards homosexuality.     

Quality of life and supported employment: a case study of three women with developmental disabilities.

This paper presents the findings of a qualitative case study of the quality of life of three women with developmental disabilities. In-depth interview data were collected from the women who had previously worked in a sheltered workshop environment and were, at the time of study, working in supported employment in the community. Interviews were also conducted with each woman's job coach and a family member or close friend. On-site observations of the women in their supported employment environments were also undertaken. Results show that the women's own perceptions about their quality of life were not always as family members and job coaches expected, and that the purported benefits of supported employment for the three women with developmental disabilities were not always realized. Occupational therapists have an opportunity to facilitate the occupational performance of adults with developmental disabilities but they must be willing to engage in wider health and social policy change if they are to make significant gains.     

Prenatal education for mothers with disabilities

Prenatal education for mothers with disabilities Prenatal nurse educators are well prepared to meet the learning needs of many expectant mothers. But how prepared are they to meet the learning needs of mothers with disabilities? To answer this question, eight mothers with various chronic illnesses located in north‐eastern Ontario, Canada were asked to describe their maternity experiences. Given the small convenience sample and exploratory nature of the study, a qualitative content analysis was done. The mothers’ reports described interaction with a variety of health professionals. This analysis focuses on findings specific to nurses who provide prenatal education. In general, mothers reported they had received insufficient, inappropriate information, especially about their pregnancy and chronic illnesses. The mothers thought that nurses doubted the ability of women with disabilities to be decision‐makers or responsible and ‘proper’ mothers. Suggestions by disabled mothers for quality care in prenatal education are described. A more emancipatory approach to preparing nurses for practice as prenatal educators is recommended. Such an approach can reduce the barriers associated with power differences between women with disabilities as ‘learners’ and their nurse ‘teachers’.     

A qualitative analysis of the meaning of aging for women with disabilities with policy implications

This is a report of a hermeneutic phenomenological study of the meaning of aging for women with childhood-onset disabilities due to the effects of paralytic polio. Twenty-five women aged 55-65 years were interviewed 2 to 4 times regarding their life course experiences and the meaning they assigned to aging. Field notes, audiotaped interviews, life course charts, and demographics were used in thethematic analysis that produced 5 themes: Bodies Change, Disrupted Meaning, The Unpredictibility of Aging, Slowing Down, and Changing Perspective. Overall, the findings indicate that the experiences of disability due to the result of paralytic polio could not be separated from the experiences of aging, which ultimately led the author to question policies that distribute and fund benefits based on age and disability status without an understanding of the varied experiences of women with disabilities.     

Knowledge, personal risk and experiences of HIV/AIDS among people with disabilities in Swaziland

Although there has been research focused on the disabling consequences of HIV/AIDS, there has been very little documented information about HIV/AIDS for individuals with disability prior to infection. There is evidence to suggest that people with disabilities face inequalities in accessing health information and services. The aim of this study was to explore whether disabled and non-disabled young adults in Swaziland perceive HIV/AIDS similarly. A qualitative study using focus-group discussions was conducted. Four focus groups were conducted with a total of 56 non-disabled adults (aged 16-29 years) and four focus groups were conducted with a total of 32 adults with either a physical or hearing disability (aged 18-32 years). The focus-group schedule explored knowledge about HIV/AIDS, personal risk and experiences of health-seeking practices. Information and awareness about HIV/AIDS was good in both rural and urban areas among the non-disabled participants, who obtained their information from a wide range of sources. In contrast, participants with disability, who obtained information about HIV/AIDS from a limited range of sources, lacked knowledge about HIV/AIDS and were misinformed about modes of transmission. Women with disabilities described experiences of sexual exploitation and abuse, which was perceived to be higher among disabled women than their non-disabled peers; they felt this was because disabled women were perceived to be 'free' from the HIV virus by non-disabled men. Further research is necessary to enable HIV/AIDS programmes to address the specific needs of people with disabilities.     

What government, agencies, and organizations can do to improve access to computers for postsecondary students with disabilities: recommendations based on Canadian empirical data

Computer, information and adaptive computer technologies have the potential to enhance the lives of people with disabilities but also to deny them equality of access to education, jobs, and community life. In a series of three studies we investigated the computer technology needs and concerns of approximately 800 postsecondary students with disabilities. Our data show that the vast majority of college and university students, regardless of sex, age, programme of study, or type of disability, can and do use computer technologies to help them succeed. A variety of government and non-governmental organizations provide computer supports for postsecondary students with disabilities. Here, we describe key aspects of our findings concerning what these organizations can do to improve the availability of technologies to students with disabilities in postsecondary education and formulate recommendations based on an environmental barriers perspective on disability. Although the research is focused on the experiences of Canadians, many of the findings and recommendations are relevant for other countries.     

An Educational Program's Effects on Students' Attitudes Toward People with Disabilities: A 1-Year Follow-Up

The purpose of the study described here was to examine the attitudes of nursing students toward people with disabilities 1 year after the students had participated in an educational program on caring for such people. The program provided (a) information about this care, (b) simulated experiences related to different aspects of care, and (c) contact with disabled people as well as with rehabilitation health professionals. The study also examined how students' attitudes were influenced by the students' age, the number of years they had spent in the nursing program, their degree of experience in caring for people with disabilities, and their amount of personal interaction with disabled people. The Attitudes Towards Disabled Persons (ATDP) scale was administered to 67 nursing students before they completed the workshop. The participants were tested again 1 year later, thereby providing a matched group for examining attitude changes over time. The participants' attitudes were significantly more positive at the follow-up. At the 1-year follow-up, the ATDP scores of the intervention group were also compared with those of a second group of nursing students (n = 170) who had not participated in the educational program. The findings suggested that completion of the educational program was an important influence on students' development of positive attitudes toward people with disabilities.     

Mothers' perceptions of parenting children with disabilities

PURPOSE: To describe how mothers of children with physical disabilities identified their parenting strengths and weaknesses, encouraged their child's social skills and learning, nurtured and disciplined their child, and perceived their parenting successes and problems. DESIGN: Grounded theory. METHODS: Focused telephone interviews were conducted with mothers of preschool to elementary schoolage children with mild to moderate physical disabilities. The mothers were asked what they were doing well and "not well" in parenting their disabled child, their difficulties, their child's preparation for other children's questions/teasing, their encouragement of social skills and learning, and their discipline and nurturance. RESULTS: The theory that emerged from the data was parental straddling, which occurred on three levels. Parents were living in the past and the present, striving to view their child as "normal" when, in fact, the child was disabled, and were simultaneously dealing with their own and their child's issues and feelings. CLINICAL IMPLICATIONS: Nurses need to understand the complexity of the parents' straddling their roles and tasks. They can provide needed emotional support by allowing parents to express their fears and feelings in an atmosphere of nonjudgmental acceptance. Nurses can prepare parents for anticipated grief work, reassure them that their experiences are expected and normal, reinforce their use of normalization strategies, and help them separate their own from their child's issues and feelings.     

Interpersonal Sources of Conflict in Young People with and without Mild to Moderate Intellectual Disabilities at Transition from Adolescence to Adulthood

Background Interpersonal conflict is a source of stress and contributes to poor mental health in people with mild to moderate intellectual disabilities. Understanding the contexts in which conflict typically occurs can better equip services to help people with such difficulties. However, existing studies into the contexts of conflict have included participants with wide‐ranging ages and may not reflect the experiences of young adults in particular. Materials and Methods Twenty‐six young adults (16–20 years) with intellectual disabilities and 20 non‐disabled young adults completed a semi‐structured interview about a recent experience of interpersonal conflict. Participants were asked to describe their beliefs and feelings about the event and their subsequent response. Results Participants with intellectual disabilities were more likely to encounter conflict with strangers or peers outside their friendship group and to describe incidents of aggression than non‐disabled participants. They were also more likely to characterize the other person globally as ‘bad’ and to perceive the other’s actions as being personally directed at them. Young women with intellectual disabilities were less likely to describe responding aggressively to incidents. Conclusions Findings suggest that young adults with intellectual disabilities are often the target of overt aggression from those outside their inner social sphere, while their non‐disabled peers are more likely to experience conflict with people close to them. Young adults with intellectual disabilities may also be more likely to feel victimized by interpersonal conflict. Implications of these findings and limitations of the study are discussed.     

Intimate partner violence in women with disabilities: perception of healthcare and attitudes of health professionals

Purpose: Intimate partner violence (IPV) is a major social problem and public health issue, but we still have a relatively small amount of data about partner violence in women with disabilities. The main objective of this study was to understand the experiences of women with disabilities who are or have been abused by their partners and to explore the knowledge, views and training requirements of primary care professionals.

Method: Qualitative study using semi-structured interviews with women with disabilities who had experienced IPV (n?=?14), and focus groups with healthcare professionals (n?=?16).

Results: Women with disabilities suffer specific forms of abuse. Because they depend on the people around them to take action, they are subordinate and this can prolong the abuse. The healthcare staff frequently mentioned that it is often difficult to notice that women with disabilities are being abused. Their lack of training about disabilities and gender-based violence makes them less sure of their ability to identify and deal with any possible cases of abuse.

Conclusions: The difficulties described by the women interviewed are broadly speaking the same as those described by the healthcare professionals consulted. A number of suggestions for improvements are provided based on the results found.

• Implications for Rehabilitation

• The rehabilitation of abused disabled women implies that women perceive the health system as a resource to resolve their situation.

• Healthcare professionals should be trained on how to detect, treat and communicate with disabled women who experience partner violence.

• Is needed to establish a comprehensive system of coordination between services involved in caring for abused women and with disabilities.

     

Dentists’ attitude to provision of care for people with learning disabilities in Udaipur,India

Scand J Caring Sci; 2013; 27; 57–62 Dentists’ attitude to provision of care for people with learning disabilities in Udaipur, India This study determines and compares the attitudes of dentists to the provision of care for people with learning disabilities according to gender, qualification, previous experience of treating patients with learning disabilities and work experience of dentists. A cross‐sectional study was conducted among 247 dentists (166 men and 81 women) using a pretested structured questionnaire. This questionnaire assessed the respondent’s attitude towards learning‐disabled patients in five categories: beliefs about treating them, their capabilities, discrimination against these patients, their social behaviour and quality of care to be received by these patients. The information on dentist’s gender, qualification, work experience and previous experience of treating patients with learning disabilities was also collected through questionnaire. The Student’s t‐test and anova test were used for statistical analysis. The mean attitude score was found to be 71.13 ± 8.97. A statistically significant difference was found in the mean attitude scores of dentists with work experience (p = 0.000). Study subjects with postgraduate qualification and previous experience of treating patients with learning disabilities had significantly greater mean attitude score than their counterparts (p = 0.000). The overall attitude of dentists towards provision of care for people with learning disabilities was favourable, which increased with higher qualification and past experience.     

Unique aspects of women's emotional responses to disability

Purpose. To improve rehabilitation clinicians' awareness of gender differences in emotional responses to disability as a means of enhancing accuracy and sensitivity in diagnosis and treatment of persons in their care.

Method. A prospective survey study using a new grief measure, the Loss Inventory (LI), with a diverse convenience sample of persons undergoing inpatient rehabilitation in the USA. Focused review of the bereavement, depression, and disability literatures related to observed gender differences.

Results. Study participants reported grief symptoms in varying intensities. Consistent with all literature reviewed, significant gender differences were found in kind and intensity of grief and depression symptoms reported. Ethnicity also significantly affected responses to disability by LI study participant responses.

Conclusions. While persons with disabilities as a whole may not necessarily develop depression, gender is a risk factor for onset of mood problems after illness or injury-related losses. As compared with study sample disabled men, disabled women reported more intense and different symptoms of grief and depression. Women with disabilities in the LI sample were twice as likely as disabled men to be depressed. Rehabilitation clinicians may wish to incorporate consideration of these differences in their mental health assessments, diagnoses, and treatment plans.     

Loneliness as a predictor of quality of life among older caregivers

AIM: This paper reports a study investigating quality of life in relation to loneliness, caregiving, social network, gender, age and economic status among caregiving men and women in a population-based sample aged 75 years or older. BACKGROUND: Because of demographic changes, in the future more care for older people will be given by informal caregivers who are themselves older. Being old and caring for another older person may affect various aspects of life, such as physical and emotional health and decreased time for respite, which may affect social life and quality of life. METHOD: A postal questionnaire including the Short Form Health Survey was used. The sample consisted of 4278 people, aged 75 years and over, living in Sweden. Of these, 783 (18%) were caregivers. FINDINGS: Caregivers had a larger social network and reported feelings of loneliness less often than non-caregivers. Forty per cent of caregivers helped every day. There were gender differences in experiences of loneliness during the last year, with the frequency of intense feelings of loneliness being higher among women. Loneliness and a small or non-existent network were significantly associated with low quality of life among caregivers, as well as in the total sample. The results showed significant association between loneliness, weak social network and low mental quality of life. CONCLUSIONS: The fact that loneliness was the most important factor predicting low quality of life among caregivers, as well as older people in general, indicates that it is crucial in the care of older people. From a nursing perspective, the findings indicate the advantage of helping older people to keep up and develop their social networks. Nursing care should involve steps to maintain the social network before an older person becomes too weak, since decreased health status makes social contacts more difficult.