Rates of access to assistive equipment and medical rehabilitation services among people with disabilities

Purpose: To determine rates of access to assistive equipment and medical rehabilitation services among people with disabilities in the US, and to determine whether health plan type is associated with rates of access to these health services.

Methods: Results were derived from a nationwide US survey sample of people with cerebral palsy, multiple sclerosis or spinal cord injury. Analyses were restricted to working-age adults ( n =500). Need for, and receipt of (1) assistive equipment in the last 12 months, and (2) rehabilitative services in the last 3 months, was determined.

Results: Over half of the sample indicated a need for assistive equipment in the last 12 months. Nearly a third of those who indicated a need did not receive assistive equipment every time it was needed. Forty per cent of the sample indicated a need for rehabilitative services in the last 3 months, and over half of those indicating a need did not receive rehabilitative services every time they were needed. Access rates did not differ appreciably between respondents covered by managed care and fee-for-service health plans.

Conclusion: Emphasis in healthcare for people with disabilities should shift from traditional acute healthcare models that focus on functional restoration, to preventive services, and maintenance of function, health and independence.     

Health, quality of life, social network and use of health care: a comparison between those granted and those not granted disability pensions

Purpose. The aim was to compare self-rated health, health-related quality of life (HRQoL), social networks and health care utilisation of those granted disability pension (DP) and those not granted disability pension (nDP).

Method. Demographic data and medical diagnoses were obtained from the records of the social insurance office. Data concerning self-reported health, HRQoL social networks, and use of health care were collected by a postal questionnaire. The nDP group included all those not granted full DPs between 1999 and 2000 (n = 99). The DP group were a random sample of those granted full DPs, during the same period (n = 197).

Results. The nDP group had more often multiple diagnoses, and lower self-reported health and HRQoL compared to those granted DP. In particular, their average scores were lower on the SF-36 scales social functioning, role limitations due to physical problems and mental health. The nDP group also had significantly smaller social networks.

Conclusions. Contrary to expectations, those not granted a disability pension do not seem to have better health, but rather to suffer from more sickness than those who were granted a disability pension.     

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.     

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.     

Does personality or psychopathology predict disability in chronic pain patients?

Purpose: The purpose of this study was to evaluate the usefulness of personality characteristics, depression and personality disorders in predicting disability status in pain patients one year later.

Method: Subjects were 250 volunteer chronic pain patients. The baseline evaluation consisted of the Karolinska Scales of Personality and psychiatric evaluation of depression and personality disorders using standardized diagnostic instruments. Disability status was assessed by insurance record review one year after the evaluation.

Results: The results suggest that baseline personality traits and psychopathology (i.e. depression or personality disorders) were not useful predictors of disability status in pain patients with one-year follow-up.

Conclusions: These data suggest that personality characteristics and psychopathology are probably not important disability predictors in chronic pain patients.     

Living with arthritis—what is important?

Purpose: Demonstrating the effectiveness of health care interventions requires valid measurement of the impact of those interventions. However, outlining precisely what constitutes a 'good outcome' in the field of rehabilitation is no easy task and tends to rely on models proposed by 'experts' rather than people with the disabling conditions. This paper describes a study exploring outcomes that those people with a disabling condition (arthritis) consider important.

Method: A qualitative study, interviewing 10 women with rheumatoid arthritis was carried out. The narratives were explored for categories and themes that encapsulated the perspective of the participants.

Results: A range of categories was identified and collated into five themes (personal/intrinsic factors, external/extrinsic factors, future issues, perceptions of normality and taking charge).

Conclusions: The research supports in part, but also challenges more commonly used models of understanding the important consequences of disease and disability. The findings of the study may assist health professionals to reflect on current practice and reconsider processes used, and outcomes aimed for, in light of what patients/clients consider important.     

An analysis of the communication during an enhanced and structured information exchange between social insurance physicians and occupational physicians in disability management in Belgium

Purpose. The overall objective of this study was to analyse the inter-physician communication during an intervention that aimed at enhancing and structuring the information exchange practices among Belgian social insurance physicians and occupational physicians. We aimed at determining: (i) the communication frequency; (ii) the communication content; and (iii) the type of patients for whom social insurance physicians want communication with occupational physicians.

Method. We analysed inter-physician information exchange data derived from communication forms. The communication forms were, during a two-year prospective intervention trial, exchanged between 15 social insurance and 40 occupational physicians for 505 sick-listed patients.

Results. Inter-physician communication was initiated for 52% of patients, mainly to execute work modifications. Communication was implemented particularly for patients that had mental disorders, poor decision latitude, high physical work demands at their workplace, pronounced pain perceptions, bad work resumption prognosis, or work-related health disorders.

Conclusion. A simple information exchange system already has the benefit to enhance inter-physician communication in disability management.     

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.     

Health related quality of life and related factors in 539 persons with amputation of upper and lower limb

Purpose : Limb amputation is followed by an important rehabilitation process, especially when a prosthesis is involved. The objective of this study is to assess the nature of factors related to health related quality of life (HRQL) of persons with limb amputation.

Method : The Nottingham Health Profile (NHP) treated 1011 subjects with major amputation of one or several limbs. Correlations were sought in multivariate regression model analyses between the six categories of distress explored by the NHP and age, sex, cause and level of amputation and rehabilitation programme.

Results : Response rate was 53.3%. HRQL measured by the NHP was mostly impaired in the categories of physical disability, pain and energy level. Controlling for sex and age, young age at the time of amputation, traumatic origin and upper limb amputation were independently associated with better HRQL.

Conclusion : It is concluded that HRQL is largely related to factors which are inherent to the patient and the amputation.     

The coping responses of the adolescent siblings of children with severe disabilities

Purpose : There is a paucity of literature conducted on adolescents' perceptions of their siblings with severe disabilities. The period of adolescence is characterized by personal and emotional conflicts resulting from teenagers' search towards self-identity and autonomy and exploration of the boundaries of parental support. The study attempts to describe the coping responses of these adolescent siblings in their adjustment to the family stressor of having a sibling with a disability; and the adolescents' available coping resources.

Method : This study is qualitative in nature and open-ended, structured interviews were conducted with 19 adolescents between the ages of 12 and 15 years who had a sibling with severe disabilities. The interviews were then analysed according to categories using an editing analysis style.

Results : The results indicated that the subjects reported limited family interaction and were often reticent in expressing their feelings about their sibling with a disability. In addition, they expressed guilt feelings regarding their siblings with disabilities. Furthermore, siblings of children with severe disabilities received limited information and guidance regarding their sibling's disability.

Conclusion : The need for professional support to facilitate adolescents' coping with the disability and its consequences as well as the establishment of strong support networks for these adolescents became evident.     

The implementation and evaluation of a community rehabilitation team: a case study

Purpose: In the UK, intermediate care schemes have been implemented with short-term funding, targeted at reducing pressures on hospitals/nursing homes. Many have lacked a reliable evidence-base and there are few publications on one form of intermediate care, the community rehabilitation team (CRT). This study was conducted to establish whether one specific CRT should gain recurrent funding.

Methods: This qualitative case study took a multi-method, multi-perspective approach. Data sources included: three focus groups and 40 semi-structured interviews with patients, carers and health services/local authority/CRT staff, document review, and field notes. The resulting data were analysed thematically.

Results: The CRT was designed without sufficient reference to reliable evidence and consultation with local health/social services, and implemented against a background of cultural divides between and within these services. It was also hampered by an ambitious remit and premature attempts at outcome evaluation. Patients/carers were satisfied with interventions, functional gains and social aspects of input but there was no reliable evidence of cost-effectiveness.

Conclusions: The study highlighted problems related to service implementation, which exposed flaws within current policy of providing short-term funding for schemes that must demonstrate cost-effectiveness quickly in order to gain recurrent funding.     

Physiotherapy in Afghanistan: an analysis of current challenges

Introduction. Afghanistan has high levels of disability due to prolonged conflict. An important part of the reconstruction process in Afghanistan is strengthening health service capacity and, within this, rehabilitation services.

Aims: To identify training needs of, and key issues affecting, Afghan physiotherapists.

Methods. 20 interviews and clinical accompaniment of 15 physiotherapists/physiotherapy assistants (APA) carried out in the second quarter of 2003. Analysis was using a grounded theory approach.

Results. Five themes emerged: (1) Low professional profile of physiotherapy; (2) Difficult working conditions; (3) Difficulty identifying personal training needs; (4) Difficulty with clinical reasoning at undergraduate level; (5) Variable levels of clinical competence.

Discussion. Many of the challenges facing Afghan physiotherapists are not unique to Afghanistan but are exacerbated by a lack of government recognition of the profession. War has isolated Afghan physiotherapists from completed professional links and consequently the undergraduate curriculum had not matched developments in other comparable countries. This has contributed to the difficulties therapists' experience with current clinical reasoning and accessing new practice developments. Culture also influences attitudes towards training and has restricted female travel and access to education.

Conclusions. Core training needs include disability sensitization, reflective practice and clinical reasoning. The physiotherapy curriculum needs updating and links with ongoing research need to be established to keep abreast of new developments.     

The possession of technical aids among persons with a somatic chronic disease

Purpose : Previous research has highlighted disability as a determinant of the need for technical aids; surprisingly, disease as a potential determinant has been ignored. The goal of the present study was to determine whether the possession of technical aids is dependent on the type of chronic disease, illness duration, co-morbidity, disability, age, and several other factors.

Methods : The study was performed in a representative sample of persons with a somatic chronic disease ( n =2262). Type of chronic disease, time post-diagnosis and co-morbidity were assessed by the patient's general practitioner. Disability was assessed with the Sickness Impact Profile. The possession of technical aids and other characteristics were assessed by questionnaire.

Results : Type of chronic disease (osteoarthritis, rheumatoid arthritis, diabetes and COPD), disability, age and gender were significantly and independently associated with the possession of technical aids.

Conclusions : Apart from disability, disease-, age-, and gender-related characteristics determine the possession of technical aids. A detailed assessment of these characteristics is required in order to ensure that technical aids meet personal needs.     

Participation in age-related activities and influence of cultural factors--comments from youth and parents of children with postnatal post infectious hemiplegia in Stockholm, Sweden

Purpose. To investigate whether children with postnatal post-infectious hemiplegic cerebral palsy, and their parents, felt that participation in activities typical for the child's age and gender was affected. To identify factors, intra- and extra-personal that influenced disability with emphasis on factors related to immigration.

Method. Interviews with six youths and 15 caregivers regarding the child's ability to participate in age-related activities, the consequences of disability in their home country compared to Sweden, and whether immigration influenced being a parent to a disabled child.

Results. All reported large difficulties participating in age-related activities. Positive and negative differences in participation in different cultures were described. War, culture, eating habits, hygiene habits, and school could differ and create difficulties when in Sweden. Language skills and intra personal factors influenced information gathering and participation in parental activities.

Conclusions. Surprisingly large difficulties in participation may separate those with a postnatal post-infectious aetiology from hemiplegia of other aetiologies. High degrees of additional impairments may influence participation more than the physical disability. Language skills and cultural factors influence ability to seek and gain information. A mutual process where both Swedes and immigrants know traditions of care for disabled in both places may create understanding and improved dialogue.     

The illusive phantom: Does primary care meet patient need following limb loss?

Purpose: Anecdotal evidence suggests that General Practitioners (GPs) vary in their understanding of phantom pain and associated factors in amputees. This has implications in that the GP's conception of the problem will determine what treatment or referral is offered.

Method: The present study aimed to explore GP's knowledge and understanding of phantom limb pain using a postal questionnaire. A sample of 129 GPs responded resulting in a response rate of 38%.

Results: The results suggest that GPs underestimate the prevalence, intensity and duration of phantom and residual limb pain. Moreover, inconsistencies in the reasons given for referral to specialist services for the management of phantom pain were reported.

Conclusion: These findings have serious implications for the management of phantom limb pain, disability and psychological distress in amputees in that GPs not only provide first line treatment, but are also the gatekeepers for referral to other services. Given this, the role of other professionals within the primary health care team may prove an additional resource for providing both support and accurate information to amputees in the community.     

Secondary conditions in spinal cord injury: results from a prospective survey

Study design. Prospective, self-report mail survey with two points of measurement one year apart.

Objectives. To determine significant predictors of pressure ulcers (PU) and urinary tract infections (UTI) in adults with spinal cord injury (SCI) over 2 years.

Setting. Non-institutionalized adults with SCI living in the United States of America.

Methods. Secondary data analysis from 2 consecutive years. Independent variables included demographic, healthcare-related, functional, access to care, and health behavior measures. Dependent variables were the occurrence of PU and UTI at Time 2.

Results. Bivariate analyses showed significant associations between various independent variables and the occurrence of PU and UTI at Time 2. Separate logistic regression analyses for PU and UTI at Time 2 as dependent variables showed that PU at Time 1, not being married or cohabiting, not having access to primary care services when needed, and reporting a greater number of activities of daily living (ADL) requiring assistance were significant predictors of PU at Time 2. UTI at Time 1, a greater number of ADLs requiring assistance, and not engaging in weekly exercise are significant predictors of subsequent occurrence of UTI.

Conclusions. Findings support previous research, and indicate the need for increased efforts to provide SCI self-management education to at-risk subpopulations, including individuals with greater personal assistance needs and functional limitations.     

Self-responsibility and coping with pain: disparate attitudes toward psychosocial issues in recovery from work place injury

Purpose : To compare injured worker and health professional ratings of psychosocial variables as they relate to recovery.

Method : Seventy patients and 70 health care staff at an injured worker rehabilitation centre completed a 17-item checklist. Each subject selected five psychosocial variables believed to be most important to recovery. Group ratings were compared using chi-square with a Bonferroni adjustment.

Results : In general, patients and health professionals agreed on the relative importance of 15 of 17 variables. However, the groups did differ significantly on two items - staff rated 'self-responsibility' higher than patients, while patients rated 'coping with pain' higher than staff.

Conclusions : The ratings reflect the occasionally divergent goals and expectations of the rehabilitation staff and patient groups. Consequently, some patients may be moved into inappropriate treatment modalities, resulting in non-compliance. Being aware of patient beliefs and expectations should assist health care professionals in generating improved rehabilitation outcomes by promoting better co-operation through shared perceptions and goals.     

Rehabilitation students' attitudes toward persons with disabilities in high- and low-stakes social contexts: A conjoint analysis

Purpose. The primary objective of this research is to examine factors influencing rehabilitation services students' attitudes toward people with disabilities in two social contexts using a conjoint analysis design.

Method. Ninety-nine students in rehabilitation counselling participated in a conjoint measurement study featuring 55 stimulus cards representing varying disability types, genders, races or ethnicities, grade point averages, internship evaluations, and employment statuses for both high-stakes scenarios and low-stakes scenarios. The participants were instructed to order the stimulus cards to indicate their preferences for associating with different people with disabilities in two social contexts: A high-stakes context as a rehabilitation administrator hiring a counsellor and a low-stakes context as a mentor/companion.

Results. The results showed that age and disability type were most involved in the decision-making process in the low-stakes group, and performance-related variables were most important in the high-stakes context. Attitude was significantly affected by client characteristics unrelated to disability including age and race or ethnicity, and factors influencing attitude formation differed across the two social contexts.

Conclusion. Conjoint analysis can contribute to our understanding of the formation of attitudes or preferences in multiple social contexts. Using these results, it may be possible to develop effective attitude change strategies.     

Understanding return to work behaviours: promoting the importance of individual perceptions in the study of return to work

Purpose : The purpose of this paper is to demonstrate and discuss how individuals' subjective perceptions of personal and environmental issues influence return to work behaviour.

Method : A qualitative design utilizing in-depth interviews and maximum variation sampling of 11 individuals who either returned to work or withdrew from work after a health leave was conducted. Experiences elicited were analysed using the constant comparative method followed by a member check with participants to confirm findings and interpretations.

Results : Findings underscored the importance of two key constructs in understanding return to work from the individual's perspective: the personal meaning of disability and return to work relevancy. Throughout the experience of getting better and returning to work participants reflected upon the impact of personal and external factors that contributed to their work disability, sought clarity of their performance capacities and examined the importance of work and the consequences of work disability within their life circumstances.

Conclusions : Insights into an individual's perceptions of their impairment and the personal relevance of work can promote a better understanding of return to work behaviour. Integrating individual perceptions is essential to advancing a multidimensional approach in return to work research.     

Traumatic brain injury

Purpose : Traumatic brain injury (TBI) leading to severe disability is fortunately rare, but when it occurs, the effect on patients and their families can be devastating.

Issue : In the UK at the current time, there are insufficient specialist rehabilitation services to cater for the case-load and many patients receive their care in general wards.

Conclusion : This educational article outlines the principles of management of severe TBI from a practical clinical viewpoint, reviews briefly the evidence for effectiveness of rehabilitation and offers an approach to consistent outcome measurement.