Barriers to accessing safe motherhood and reproductive health services: the situation of women with disabilities in Lusaka, Zambia

Purpose: To ascertain how well health services in Lusaka, Zambia currently meet the safe motherhood and reproductive health care needs of women who have physical impairment leading to disability.

Methods: A qualitative study was conducted in Lusaka, Zambia. In-depth tape-recorded interviews were conducted with 24 purposively selected women with disabilities and with 25 safe motherhood/reproductive public sector health service providers. Qualitative analysis was conducted using NVivo software.

Results: Women with disabilities encounter various social, attitudinal and physical barriers to accessing safe motherhood and reproductive health (RH) services in this particular setting. The strong desire for children and affection can increase vulnerability to sexual exploitation. At the same time, a generalized assumption among reproductive health service providers that women with disabilities will not be sexually active, and not require RH services, leads to increased vulnerability to sexually transmitted infection including HIV. Once pregnant, traditional beliefs about transmission of disabilities can create barriers to integration in ante-natal clinics. Nurse-midwives' fear of delivery complications in women with physical impairments can also result in routine over-referral to a tertiary maternity facility which is outside the locality and harder for women with mobility limitations to get to.

Conclusion: Greater understanding of the influences underpinning societal attitudes towards sexuality and disability in this setting, and more extensive communication between health care staff and women with disabilities would facilitate positive action towards improving safe motherhood and reproductive health services for women with disabilities.     

HIV/AIDS information and services: The situation experienced by adolescents with disabilities in Rwanda and Uganda

Purpose.?The study had 2 aims: (1) To explore whether knowledge about HIV and AIDS was similar among adolescents with disabilities compared with their non-disabled peers; and (2) To determine factors which may increase vulnerability of disabled adolescents to HIV infection and/or inappropriate access to HIV related services.

Method.?A qualitative study using focus group discussions and semi-structured interviews was conducted with purposefully selected participants in Rwanda and Uganda. The participants included disabled adolescents, non-disabled adolescents, parents, teachers, members of disabled people's organisations and representatives of HIV/AIDS organisations. Interviews explored issues of HIV/AIDS knowledge, access to HIV/AIDS services and perceptions of personal risk.

Results.?Barriers preventing adequate access to information about HIV and AIDS experienced by adolescents with disabilities depended on the nature and severity of the impairment. For example, parents and health workers were unable to communicate with deaf adolescents using sign language, adolescents with physical impairments were often unable to access community meetings about HIV and print material was not adapted for those with visual impairments. Further, assumptions by health workers and community members that people with disabilities were not sexually active lead to the marginalisation of disabled people from HIV services. Adolescents with disability described low self esteem and issues of self efficacy affecting control of safer sexual relationships. A high level of targeted abuse, rape and exploitation was reported leading to vulnerability among this population.

Conclusion.?The impact of the HIV epidemic among people with disabilities is a neglected area. This study supports the need to develop strategies in HIV prevention programmes that include people with disabilities.     

Using intersectionality to explore experiences of disability and HIV among women and men in Zambia

Abstract

Purpose: Little is known about the experiences of people with disabilities (PWD) who live with HIV. Existing research largely assumes a “double burden” approach, which views HIV as doubling the load for people already burdened by disability. Intersectionality (a dynamic process of converging systems of relationships) offers an alternative approach for understanding differences in experience. This study uses an intersectional approach to explore the experiences of PWD in Zambia who have become HIV-positive. Methods: We conducted semi-structured, in depth interviews with 21 PWD who live with HIV in Zambia (12 women, 9 men). Participants had various impairments (visual, hearing, mobility, intellectual). Interviews were conducted to meet participants’ accessibility preferences. Results: Our intersectional analysis demonstrates the dynamic and situational emergent meanings and consequences for PWD who are living with HIV related to: (1) meanings of HIV and disability linked with time and trajectory; (2) oppression and negotiation related to accessing health services and (3) social roles and relationships. Three case studies illustrate these circumstances. Conclusions: Intersectionality offers a complementary approach for examining the complex interrelationship among HIV, disability, gender and time among PWD living with HIV. Findings illustrate directions for improved services and policies for this important group.

• Implications for Rehabilitation

• Rehabilitation services need to take a cross-disability (multiple disabilities) approach working with people living with HIV and disability.

• Rehabilitation, as illustrated by a CBR approach, needs to include services that will facilitate not only health, but education, jobs and housing for people living with HIV and disability.

• Rehabilitation needs to make more direct connections with Zambia social service sector to help address the fluctuating experience of living with HIV and disability.

     

The complex array of antecedents of depression in women with physical disabilities: Implications for clinicians

Purpose. This article discusses the complex interrelation of elements of the physical, psychological, social, and environmental life context of women with physical disabilities and the association of these elements with significant disparities in rates of depression and access to mental health care for this population.

Method. Literature and concept review.

Results. High rates of depression in women with physical disabilities are well documented in the literature. Many elements that are disproportionately common in the lives of women with physical disabilities, including socio-economic disadvantage, functional limitations, pain and other chronic health conditions, poor diet, physical inactivity, smoking, violence, low self-esteem, sexuality problems, chronic stress, environmental barriers, and barriers to health care, have also been linked with higher rates of depression and depressive symptomatology. Depression self-management interventions tailored for women with disabilities have been developed and proven effective.

Conclusions. Many women who must deal with the stresses surrounding an array of health problems may experience symptoms of depression without necessarily meeting the criteria for clinical depression. Psychologists, counselors, primary care physicians, specialists, and other medical and rehabilitation professionals are challenged to recognize the symptoms of depression in women with physical disabilities and assist them in obtaining appropriate psychological and pharmacological interventions.     

A source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi,Pakistan

Purpose.?Previous literature has highlighted marginalisation and stigma of children with disabilities in developing countries, but few studies have explored the central care-giving environment and the relationship of the mother and her child with disabilities in this context. A group of women caring for children with disabilities in a low income community in Karachi, Pakistan was identified for the study. The aims were: (1) to explore the influence children with disabilities have on the daily lives of their mothers, (2) to describe the factors which influence the care-giving capacity of mothers.

Method.?A participatory qualitative research design was implemented. A women's group of caregivers of children with disabilities was formed. Several different tools were used during the course of the group meetings to facilitate discussion including social mapping. A thematic analysis of issues around care-giving and the relationship between the mother and her child with disabilities was conducted.

Results.?In a society where women may experience restrictions in freedom of movement and decision making, caring for a child with disabilities enabled women to move beyond traditional boundaries in seeking health and education services for their children. However, the gain in empowerment was counter-acted by a lack of care-giving support, a lack of appropriate services for health, rehabilitation and education of children with disabilities and stigma creating anxiety and stress for women.

Conclusion.?While children with disabilities do have some positive effects on the lives of their mothers, there are many more factors which create anxiety for this group of mothers (including a lack of care-giving support and stigma). Community-based rehabilitation strategies should consider the care-giving environment of children with disabilities and shift from a child only to family focus. Interventions which support, empower and strengthen the capacity of mothers are essential for the well being of their children with disabilities.     

Setting Disablement in Perspective

Purpose. Although rehabilitation is an integral part of the lives of many young people with physical disabilities, sexuality education and HIV and AIDS prevention services are not. The purpose of this study was to record the voices of disabled young people regarding their experiences of sexuality and HIV and AIDS and to determine the role of rehabilitation professionals in this regard.

Methods. Sixteen young people with physical disabilities, aged 15–24 years participated in the study. Individual in-depth interviews were conducted with each participant, followed by focus group discussions comprising four to six participants. Responses were audiotaped and transcribed verbatim. Textual and contextual features of the Atlas.ti computer programme were used to support the thematic analysis of the data.

Results. The results indicated that most participants had received some form of rehabilitation for their physical impairment, yet sexuality and HIV and AIDS matters were not part of the rehabilitation process. Although the majority were aware of sexuality and HIV and AIDS issues, their limited factual knowledge did not persuade them to change their sexual behaviour or take preventive measures against contracting HIV infection.

Conclusion. Rehabilitation professionals need to widen their scope of practice to include the promotion of good sexual and reproductive health for disabled young people.     

Cultural perceptions and health behaviors related to safe motherhood among village women in Eastern Sudan: Ethnographic study

Background

Meeting the health needs of Sudanese women, especially those living in village areas, is imperative and cannot be accomplished without understanding the cultural perceptions and health behaviors related to safe motherhood. Nevertheless, there is little literature exploring these perspectives through qualitative study, as most of the studies performed in Sudan applied quantitative methods and focused on urban areas.

Objective

This study aims to explore cultural perceptions and behaviors relevant to safe motherhood among Sudanese village women.

Design/method

A qualitative method using an ethnographic approach was applied for the study. Semi-structured in-depth interviews were conducted with six village women of reproductive age living in a village in Gadarif State, Eastern Sudan.

Findings

The thematic content analysis revealed socio-economic factors, religious values and local beliefs shaping the village women's perceptions of their behaviors related to motherhood safety. Particular concerns included responses to health problems, preference for birth with traditional birth attendants, female genital mutilation/female genital cutting and a lack of utilizing family planning.

Conclusions

An implication arising from this study is that maternal services should develop a collaboration between village midwives and traditional birth attendants. This study further suggests that educational messages must be delivered to family relatives with consideration of the cultural influences highlighted by the village women.     

Leisure-time physical activity and secondary conditions in women with physical disabilities

Purpose:?To examine the relationship between secondary conditions and leisure-time physical activity participation (LTPA) in women with physical disabilities.

Method:?A survey was conducted in a metropolitan urban USA area of women (n?=?170) with physical disabilities including MS, CP, polio, arthritis, TBI, and CVA among others and aged 21?–?65 years. Outcome measures were LTPA, secondary conditions (numbers and severity), and functional status.

Results:?Respondents experienced 11.99 (?±?6.05) secondary conditions in the past year, self-rated their severity as ‘moderate problems’, and reported moderate levels of functional impairment. LTPA participation (excluding calisthenics/exercise) was reported to be 2.90 (?±?5.12) times/week with 39.4% reporting no participation. After controlling for the interaction between severity of secondary conditions and functional status, the secondary conditions of physical deconditioning and isolation were significantly and inversely related to LTPA participation (r?=???0.164, p?=?0.036; r?=???0.156, p?=?0.045, respectively).

Conclusion:?Reported secondary conditions of physical deconditioning and isolation are inversely related to the ability of moderately impaired women with physical disabilities to participate in LTPA when functional status was controlled and should be considered in efforts to increase involvement in this health promoting behaviour.     

Beyond biomedicine: health through social and cultural understanding

This article argues that traditional approaches to reproductive health are concerned with safe motherhood. In the discourse of reproductive health, safe motherhood is defined as the ability to bear and raise children, and to plan and space births for safe pregnancy, focusing strictly on the biological abilities of women [Reproductive Health Matters, 2005, 13: 34]. This fails to account for how women construct, negotiate and maintain their health within their own cultural context. To understand how social context influences meanings of health, in-depth interviews were conducted with young Nepalese women living in poverty. Centralizing women's voices not only creates opportunities for exploring how local context shapes meanings of health but also allows alternative health meanings of the cultural participants to emerge. In particular, by highlighting narratives we are able to understand how women actively (re)construct dominant meanings of reproductive health and in turn act upon meanings that are socially and culturally relevant.     

Disability and rehabilitation: Do we ever think about needed dental care? A case study: The USA

Purpose.?To foster an awareness of the need for oral health care as a component of a programme for rehabilitation of individuals with disabilities.

Method.?A case study of the USA is used to illustrate the evolving community residential settings for individuals with disabilities and the resulting complexities in the delivery of health services. Examples of oral health conditions frequently present in individuals with disabilities are provided.

Results.?National and local reports indicate that barriers exist in the delivery of oral health services for individuals with intellectual/developmental and later life disabilities.

Conclusion.?Oral health care is a component of rehabilitation, as long as attendant pain erodes energy and aspirations of individuals with disabilities. Dental practitioners face many of the same complex difficulties encountered by other health practitioners in the provision of services for individuals with disabilities. The need is for the practitioners in the many health fields to play an important role in developing an awareness of, and referrals for, necessary oral health care.     

Problems with accessibility to health services by persons with disabilities in São Paulo,Brazil

Purpose.?To describe the occurrence of self-reported problems of accessibility to health services used by persons with disabilities in terms of social and health services variables.

Methods.?We performed a cross-sectional household survey designed to assess problems with accessibility to health services faced by persons with disabilities. We interviewed 333 persons in São Paulo city, in 2007. Variables related to the presence of accessibility problems, disabilities, gender, age, family head income, ethnicity, use of health services and others were analysed using frequencies, percentages, χ²-test, ANOVA and Poisson regression models.

Results.?15.92%% of the interviewed persons reported problems with accessibility to health services. Persons having multiple (prevalence ratios; PR == 2.91) or mobility disability (PR == 6.46) had more problems with accessibility than persons with hearing disability. Persons younger than 78 years old had more problems with accessibility; those who needed help to go to the health service (PR == 3.01) also.

Conclusions.?Persons with multiple or mobility disability, younger than 78 years, and those who needed help of others to go to the health service were more likely to have problems with accessibility to health services. This information could be one of the first steps to the management and/or planning of appropriate health services for persons with disabilities.     

Disability and race: a comparative analysis of physical activity patterns and health status

Purpose: Minority groups, specifically African Americans (AAs), are more likely to be physically inactive than the general population. Although the aforementioned finding is well documented, there is a dearth of literature that examines levels of physical activity among AA adults with disabilities. The purpose of this article was to study the patterns of physical activity and health status among AA adults with disabilities in comparison with their White counterparts. Methods: Data from the Centers for Disease Control and Preventions 2007 Behavioral Risk Factor Surveillance System survey were used to conduct comparative analyses of physical activity patterns and health status among 7315 AAs and 82?482 Whites who self-reported a disability. Results: Significant differences (p < 0.05) were found between health status and physical activity patterns across racial groups. AAs with disabilities were less likely to engage in moderate and vigorous physical activity than their White counterparts. AAs were also less likely to engage in physical activity as health status declined in comparison with White respondents. Conclusion: When considering the health of minorities with disabilities, physical activity must be central to improving their health status. The authors of this study provide additional support for developing unique health programming for AAs with disabilities. Rehabilitation and health care professionals can gain insight into lifestyle patterns of minorities with disabilities, which can be useful in addressing health behaviors that may be counter to physical well-being.

Implications for Rehabilitation

• African Americans with disabilities tend to report poorer health status and engage in less moderate and vigorous physical activity, even as health status decline, than their White counterparts.

• The use of a multilayered approach incorporating culturally tailored programming would be useful in improving health and physical activity outcomes of African Americans with disabilities.

     

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.

     

Examining occupational health and safety vulnerability among Canadian workers with disabilities

Objective: To compare workers with and without disabilities on their reported workplace hazard exposure and the presence of occupational health and safety vulnerability factors.

Methods: Working-aged adults in Ontario or British Columbia were recruited to participate in a cross-sectional survey (n?=?1988). Self-reported measures included demographic factors, work-related variables, perceived level of activity limitation at work, and presence of work safety vulnerability factors utilizing a novel framework.

Results: Reporting a disability at work was significantly associated with greater hazard exposure than those without a disability. In addition, those reporting a disability at work were more likely to be employed in conditions where hazard exposure was combined with inadequate policies and procedures, or hazard exposures were combined with inadequate empowerment.

Conclusions: Work safety vulnerability is one way that health inequalities can be perpetuated even among those with disabilities who have found work. Our results suggest that employers and policy makers need to focus on assessing and addressing hazard exposures and targeting occupational health and safety resources in the workplace in a way that includes workers with disabilities.

• Implications for Rehabilitation

• Workers with disabilities experience greater hazard exposure than those without a disability.

• Those with moderate and severe disabilities reported occupational health and safety vulnerability, suggesting that workplace accommodations should be available to a broader range of disability levels.

• It appears that, above and beyond standard safety procedures, providing workplace accommodations for people with disabilities may further reduce their hazard exposure and improve their safety.

     

Who gets the disability grant in South Africa? An analysis of the characteristics of recipients in urban and rural areas

Background.?This study was to establish whether there was a difference in the characteristics of people who received a disability grant and those who did not in rural and urban samples of isiXhosa-speaking people with disability in South Africa.

Sample.?The sample was a convenience sample and was identified through a ‘snowballing’ process.

Instrumentation.?A demographic survey and isiXhosa versions of the International Classification of Functioning , Disability and Health (ICF) and EQ-5D, a health-related quality of life measure were utilized.

Results.?The sample consisted of 244 rural and 61 urban respondents, demonstrating a preponderance of physical disabilities. The groups who received or did not receive grants were equivalent in terms of age, gender, marital status and employment status. A significantly higher proportion of rural dwellers accessed the grant. The grant holders displayed significantly more problems related to mobility and to technology and policies and services relating to mobility and transport. Those who did not receive grants reported more barriers with regard to the attitudes of health workers but not with regard to any other aspect of social support.

Conclusions and recommendations.?The majority of men and women with disability identified in this study received the grant, whether or not they lived in remote rural or in urban areas. As there were few differences between the groups, it is likely that several non-grant holders might qualify if they were informed of the grant and applied. The role of medical doctors as ‘gate-keepers’ to the grant might need to be examined.     

In search of wellness: allied health professionals' understandings of wellness in childhood disability services

Purpose.?Wellness approaches are not routine in childhood disability services, despite theoretical and empirical support and an increasing demand for them from health consumers and disability activists. We aimed to investigate how health professionals define or understand wellness and its practice in the context of childhood disability.

Method.?A qualitative, interpretive approach was taken. Semi-structured interviews were conducted with 23 health professionals (allied health therapists and managers) providing early intervention and ongoing therapy within four Australian childhood health and disability services. Years of experience providing services to children with disabilities and their families ranged from 6 months to 30 years (M?=?9.41, SD?=?9.04).

Results.?The data revealed a noteworthy impediment to incorporating wellness into practice – the difficulties in the allied health professionals reaching consensus in defining wellness. There appeared to be distinct differences between the four services, while there appeared to be no appreciable difference based on the individual professional's years of experience or allied health discipline.

Conclusions.?The effect of organisational culture should be considered in efforts to embed wellness in childhood health and disability services in order to address client well-being, empowerment, choice, independence and rights to meaningful and productive lives.     

Closing the gap: training for healthcare workers and people with disabilities on the interrelationship of HIV and disability

Abstract

Background: HIV and disability are interrelated providing a double burden to HIV endemic countries in East and Southern Africa and their already fragile health systems. Although literature reveals that people with disabilities are particularly vulnerable to HIV and that HIV, its opportunistic infections and treatments can cause disability, only few interventions target this issue and none have been evaluated in this region. Methods: Formative evaluation was undertaken with regard to the effectiveness of a workshop-based intervention for healthcare workers and people with disabilities on the intersection of disability and HIV in order to inform the further development of this intervention. The formative evaluation assessed participants’ perception of the inclusion of disability in HIV services and of opportunities to initiate change after the workshops. It also captured their experiences in utilising knowledge and skills after the workshops using quantitative (short checklist and ranking exercise) and qualitative (semi-structured interviews) methods of inquiry. Frequencies and conventional content analysis were used in the analysis of the data. This study presents an example of applied research conducted under real-world conditions. Results: 60 healthcare workers and people with disabilities took part in this pilot workshop training and participated in the formative evaluation. Healthcare workers and people with disabilities alike identified various barriers to access health services. Reasonable accommodation was perceived as being mainly absent by most participants, while some participants indicated a lack of physical accessibility in the form of universal design. Participants also identified a lack of integration of services and disability-related skills within the healthcare staff. Participants reported a number of enablers, success and challenges while implementing the knowledge from the workshops related to structural issues, service provision and integration. While participants worked on health workers’ attitudes and accessibility of services, screening and referrals practice was not improved through the workshops. Conclusions: Formative evaluation indicates that the workshops can be effective not only in sensitising healthcare workers and people with disabilities to opportunities to improve services for people with disabilities but also to provide knowledge and skills to initiate improvements. Skills that need more practical training (e.g. screening for disability) need to be trained in more detail, and this will inform the adaptation of the workshops. However, the workshop evaluation also revealed that without policy implementation and budget allocations this change would only be limited.

• Implications for Rehabilitation

• HIV, its co-morbidities and treatments cause health conditions and impairments that have the potential to develop into disability.

• People with disabilities are at increased risk of exposure to HIV.

• Rehabilitation professionals, healthcare workers and people with disabilities can be sensitised in a three-day workshop on the relationship of disability and HIV.

• However, the trained participants can only implement no or low-cost elements of interventions, while high-cost interventions need budget allocations at provincial and national level.