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.     

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 pilot study of a web-based physical activity motivational program for adults with physical disabilities

Purpose. Develop, deliver, and assess the efficacy of a 4-week web-based leisure-time physical activity (LTPA) motivational program based on the Transtheoretical Model and tailored to inactive adults with physical disabilities.

Method. This was a pilot-based study incorporating a true experimental design with one treatment and one control group. The intervention program was delivered on the web and was based on the constructs of the Transtheoretical Model. From the 151 individuals who completed the LTPA standardized questionnaire at baseline, 75 people participated in the 1-month post-test assessment.

Results. The results of the analysis confirmed the pretest LTPA scores as the study covariate for the post-test assessment (F (1,72) = 16.06, p = 0.001, η² = 0.18). Based on the one-way ANCOVA, there were no statistically significant differences in LTPA scores between the treatment and control groups at post-test. However, the corresponding effect size and variance explained by the treatment approached a moderate level of significance (d = 0.34 and η² = 0.04).

Conclusions. Although conclusive statements about program effectiveness cannot be secured, several 'lessons learned' from this project may be 'key factors' for program improvement. Given the pilot nature of the study and the limited resources for program development and monitoring, continued examination of such motivational materials and delivery mechanisms for people with physical disabilities appear warranted.     

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.     

A comparison of consumer-directed and agency-directed personal assistance services programmes

Purpose: To compare a consumer-directed personal assistance services (PAS) programme with an agency-directed PAS programme.

Method: A convenience sample was used for this cross-sectional study with one data collection point. Outcomes were compared for consumer-directed and agency-directed PAS. Hierarchical regressions were also used to determine the predictors of outcomes across PAS programmes. In-home interviews were conducted by a trained data collector from April 2000 to December 2001.

Results: Participants in the consumer-directed programme reported more choices over PAS and satisfaction with PAS. Self-reported outcomes were primarily predicted by the following variables: service arrangement, type of provider, importance of directing PAS, health status, number of personal assistants used in past 12 months, sufficient PAS hours received, and social support.

Conclusions: Consumer-directed PAS enhances outcomes for many persons with disabilities. Self-reported outcomes are affected by many factors that could be addressed in PAS programme development.     

Functional outcome in patients with critical illness polyneuropathy

Purpose: To evaluate the functional outcome of intensive care patients with critical illness polyneuropathy (CIP), 6 and 12 months after the onset.

Methods: Design: A prospective observational cohort study and a cross-sectional study.

Setting: University hospital in the Netherlands.

Patients: Eight consecutive intensive care patients with CIP for the prospective study and eight patients diagnosed with CIP in the past 6 months for the cross-sectional study.

Main outcome measures: Functional outcome regarding body functions and structure, activities, participation and perceived quality of life.

Results: Nine patients (56%) died within one year. Functional outcome, participation and subjective health status in survivors varied widely at 6 and 12 months. After 12 months, physical functioning was improved in all patients. However activities related to mobility outdoors, autonomy, participation and quality of life were restricted in most patients.

Conclusions: The majority of survivors have persistent functional disabilities in activities, reduced quality of life and restrictions in autonomy and participation one year after the onset of CIP. Prolonged rehabilitation treatment is necessary for an increasing number of intensive care patients who develop CIP, in order to reduce handicaps and achieve optimal autonomy and social participation.     

Client,needs assessor and agency-related factors predicting allocation of electric scooters to community-dwelling elderly in The Netherlands: a vignette study

Purpose: To determine what client factors predict allocation of an electric scooter and to determine what needs assessor and agency factors explain variation in decision-making by long-term care needs assessors concerning clients requesting electric scooters.

Method: Hypothetical case vignettes were sent to needs assessors allocating services for the elderly, and questionnaires were used to obtain organizational and individual needs assessor data. Multilevel logistic regression analysis provided random and fixed effects.

Results: The decision whether or not to allocate an electric scooter was influenced primarily by the clients' driving safety, their disabilities and whether or not there were possibilities to stall the electric scooter. Transportation goals and the clients' activity level were not taken into account. There was some random variation on the level of needs assessors.

Conclusions: A system whereby all clients who request an electric scooter, have disabilities that limit mobility, have shown to be safe drivers and have a shed to stall the scooter are allocated a scooter may be more appropriate in maintaining elderly persons' independence and preventing social isolation. Regular evaluation afterwards and extra driving lessons may prevent allocation of scooters to clients who do not use them.     

Impairments, disabilities and health related quality of life after treatment for breast cancer: a follow-up study 2.7 years after surgery

Purpose: The aim of this study was to assess impairments, disabilities and health related Quality of Life (QOL) after treatment of breast cancer and to analyse the relationship between treatment modalities, impairments, disabilities and health related QOL.

Method: Fifty-five patients who underwent a modified radical mastectomy or a segmental mastectomy with axillary lymph node dissection were retrospectively assessed with a mean follow up of 2.7 years after treatment. Impairments were assessed by means of measuring active shoulder range of motion, grip strength, arm volume and pain. Disabilities were assessed by means of the Shoulder Disability Questionnaire (SDQ) and health related QOL was assessed by means of the RAND 36-item Health Survey (RAND-36).

Setting: University Hospital Groningen (The Netherlands).

Results: Pain (60%) and reduction of grip-strength (40%) were the most frequent impairments found. The prevalence of impaired range of motion and oedema was 9 - 16% respectively 15%. Mean group score of the SDQ was 33.7 (sd: 32.1) and mean scores of the RAND-36 differed significantly for physical functioning, vitality and health perception to that of a female norm group. Radiotherapy and chemotherapy were significant factors in the prediction of impaired range of motion. Pain and restricted range of motion explained 61% respectively 12% of the variance in disability (SDQ). In the prediction of health related QOL, pain, grip strength and arm volume were significant factors respectively in six, three and two domains.

Conclusions: Pain is the most frequent assessed impairment after breast cancer treatment with strong relationship to perceived disability and health related QOL. Disability is mild and health related QOL (RAND-36) differed in three of the nine domains with a female norm group.     

Investigation of health perspectives of those with physical disabilities: the role of spirituality as a determinant of health

Purpose: To identify key determinants of health and the process of health attainment for people with musculoskeletal disabilities.

Method: Focus groups of people with musculoskeletal disorders, including 30 members and their five trained facilitators, provided data. Discussed were 'What is health for you?' and 'What has helped, or would help you achieve this health?' Delphi-structured analysis identified health themes and a health process model was developed with the facilitators comprising the expert panel.

Results: Health was perceived as centred on relationships that required a spiritual awareness for a strong and resilient identity. The Self Attributes Model developed portrays the processes perceived to be required for health.

Conclusions: Although physical, social and psychological interventions are essential aspects of health intervention, by themselves they are not sufficient. Also required for health is a strong resilient self resulting from interaction and connection with other people and the natural world. Moreover, development of such an identity requires a spiritual world-view comprising an acknowledgement of the essence of self and focus upon the nature of the connection of this essence with all other aspects of life. Further research is required to advance understanding of the process by which this occurs for people with chronic disorders.     

Is social participation associated with quality of life of older adults with physical disabilities?

Purpose: To explore the relationships between subjective quality of life and social participation of older adults with physical disabilities.

Method: A cross-sectional design was used with a convenience sample of 46 people aged 60 to 90 living in the community. Subjective quality of life was estimated with the Quality of Life Index and social participation with the Assessment of Life Habits.

Results: Only a weak relationship was found between total scores of quality of life and social participation. Interpersonal relationships, responsibilities, fitness and recreation were the categories of social participation most associated with quality of life. Social roles were more associated with quality of life than daily activities. Finally, satisfaction with the accomplishment of life habits was also more associated with quality of life than the performance itself.

Conclusions: The importance of social participation in regard to the quality of life of older persons with physical disabilities living in the community is partially supported by these findings. Other studies are needed to clarify how social participation influences quality of life in this population.     

The QE Health Scale (QEHS): assessment of the clinical reliability and validity of a spiritually based holistic health measure

Purpose. To assess the clinical reliability and validity of a holistic health measure, the QE Health Scale (QEHS), for use with people with physical disabilities.

Method. A test-retest design saw the QEHS administered and compared with established measures of health at admission and discharge from three-week inpatient rehabilitation programmes. Data was analysed by factor and correlation analysis. Clinician-reported credibility and usefulness of the theoretical basis of the QEHS, the QEHS itself, and Patient Profiles derived from the QEHS were also used to evaluate clinical validity.

Results. The QEHS was judged to possess satisfactory reliability and validity.

Conclusion. The QEHS is a clinically reliable, valid, credible and useful holistic health instrument to facilitate client-centred therapeutic interventions, inform decision-making and evaluate outcomes for people with physical disabilities.     

Long-term outcomes after moderate to severe traumatic brain injury

Objective: This research examined the long-term outcomes of rehabilitation patients with moderate to severe traumatic brain injury (TBI).

Design: Retrospective cohort study.

Setting and subjects: We examined consecutive records of persons with moderate to severe traumatic brain injury who were discharged from a large rehabilitation hospital in Pennsylvania from 1973 to 1989. We interviewed consenting participants (n = 306) up to 24 years post-injury.

Main outcome measures: Self-rated health, activity limitations, employment, living arrangements, marital status, Community Integration Questionnaire, and use of rehabilitation services.

Results: Participants were most limited in activities such as managing money and shopping. Twenty-nine per cent of our participants were working full time. There were significant relationships between activity limitations and residual cognitive impairment at follow-up. Self-rated health was correlated with most instrumental activities of daily living.

Conclusion: Our findings document health and function in a large post acute TBI population and implications for rehabilitation are discussed.     

A comparison study of quality of life in women with fibromyalgia and myofascial pain syndrome

Purpose: To compare the quality of life scores of fibromyalgia patients with myofascial pain syndrome patients.

Method: Thirty-three fibromyalgia patients, 33 myofascial pain syndrome patients, and 33 age-matched controls completed Beck Depression Inventory and Short Form-36 questionnaires.

Results: Compared with myofascial pain syndrome patients, fibromyalgia patients reported significantly more often fatigue, numbness, tingling, gastrointestinal discomfort, and poor sleep. The mean scores on VAS and on Beck Depression Inventory were significantly higher in fibromyalgia patients than myofascial pain syndrome patients. Patients with fibromyalgia had significantly poorer health than the patients with myofascial pain syndrome in pain, general health, vitality, and role emotional subscales.

Conclusions: The quality of life profile of fibromyalgia patients is quite different from those in the myosfascial pain syndrome group. Myofascial pain syndrome impacted mostly on physical health whereas fibromyalgia impacted on both physical and mental health.     

Development of a measure of receptivity of the physical environment

Purpose. New models of disability identify the importance of measuring the influence of the environment (environmental barriers) on the performance of persons with disabilities. The objective of this paper is to present a new measure of the receptivity of the physical environment for persons with mobility impairments and to offer preliminary information about its psychometric properties.

Methods. The measure, The Community Health Environment Checklist (CHEC), was developed and validated in a community setting with a group of persons with mobility impairments. Sixty-three destinations (buildings, recreational areas or facilities) were assessed using the CHEC.

Results. Using Cronbach's alpha, the CHEC was found to have an internal consistency reliability of 0.95. The content validity of the CHEC was assured by the development procedure.

Conclusion. The CHEC offers a brief, easily administered measure of receptivity of the physical environment for persons with mobility impairments that is psychometrically sound.     

The spaces between: partnerships between women researchers and Indigenous women with disabilities

Purpose. To understand the experiences of Indigenous Australian women with chronic illnesses and disabilities and their views about a way forward in relation to partnerships in research and community-supported problem-solving.

Method. Using a participatory action research framework, five Indigenous women participated in a group meeting and interviews with academic women researchers to discuss their health and disabilities in order to generate solutions that could address health disparities among Indigenous women.

Results. Five themes describe the experiences of these Indigenous women when considering their personal histories, interactions with formal service systems, and their aspirations for the future: (i) Ongoing influence of history, (ii) systemic lack of respect, (iii) social context of health, (iv) moving forward in positive ways, and (v) research partnerships as a way forward. The data raised critical questions about the role of research, including, 'Who has the right to tell the stories of the women?'.

Conclusions. We show how a small research project conducted in collaboration with five Indigenous women developed into a significant research partnership and resulted in a better understanding of the issues that must be addressed by research in future. It is suggested that through such partnerships underserved women can best be served by research.     

Impact of comprehensive gynecologic services on health maintenance behaviours among women with spinal cord injury

Purpose: Women with spinal cord injury (SCI) and other physical disabilities often lack access to appropriate gynecologic health care and may be at higher risk for preventable gynecologic diseases and other health problems. The purpose of this study was to investigate the effects of a women's health clinic that was established to meet the needs of women with SCI and other disabilities. Specifically, this study examined the effect of clinic participation upon the rate of preventive gynecologic health care behaviours and assessed the relationship between physical and emotional functioning in women with SCI and other disabilities.

Method: Participants ( n =28) were women who completed surveys immediately prior to participation in the clinic, and at 3 and 12 month follow-ups.

Results: Results indicated a trend towards increased frequency of breast self-exam three months after initial participation in the clinic ( p =0.11). Other rates of health promoting behaviours (exercise, diet and mammography) did not increase. Results also indicated that although physical functioning and life satisfaction were not related, women in this study did experience moderate to high levels of psychological distress.

Conclusion: Results indicate that whole-woman health care may be important to increasing certain health behaviours among women with disabilities. Implications for comprehensive treatment are discussed.