Rural access to vocational rehabilitation services: Minority farmers' perspective

Purpose. The paper documents the need for, and obstacles to effective access to rehabilitation services by minority farmers. It draws from the findings of a study * conducted in the Mississippi delta.

Method. Applying community-based participatory research approach (CBPR) the study trained farmers to conduct interviews and focus group discussions. They interviewed 1308 farmers and had 18 focus group discussions with 254 farmers. The study also interviewed 290 service providers and conducted 8 focus group discussions with 72 State Vocational Rehabilitation services (VR) counselors.

Results. The study found an unmet need for VR services in this population. Farmers were not aware of VR services or how to access them and VR was not aware of farmers' needs. Farmers felt marginalized and afraid that access to VR services would diminish their ability to earn a living on the farm.

Conclusions. Collaboration between VR and rural organizations, agencies and with rural people would help close the information and gaping service gap. One-stop service centers in rural areas could improve access to services. CBPR is an invaluable research tool especially among marginalized people.     

Rural access to vocational rehabilitation services: minority farmers' perspective

PURPOSE: The paper documents the need for, and obstacles to effective access to rehabilitation services by minority farmers. It draws from the findings of a study conducted in the Mississippi delta. METHOD: Applying community-based participatory research approach (CBPR) the study trained farmers to conduct interviews and focus group discussions. They interviewed 1308 farmers and had 18 focus group discussions with 254 farmers. The study also interviewed 290 service providers and conducted 8 focus group discussions with 72 State Vocational Rehabilitation services (VR) counselors. RESULTS: The study found an unmet need for VR services in this population. Farmers were not aware of VR services or how to access them and VR was not aware of farmers' needs. Farmers felt marginalized and afraid that access to VR services would diminish their ability to earn a living on the farm. CONCLUSIONS: Collaboration between VR and rural organizations, agencies and with rural people would help close the information and gaping service gap. One-stop service centers in rural areas could improve access to services. CBPR is an invaluable research tool especially among marginalized people.     

Addressing the barriers to accessing therapy services in rural and remote areas

Abstract

Purpose: Throughout the world, people with a disability who live in rural and remote areas experience difficulty accessing a range of community-based services including speech-, physio- and occupational therapy. This paper draws on information gathered from carers and adults with a disability living in a rural area in New South Wales (NSW), Australia to determine the extent to which people living in rural areas may receive a person-centred therapy service. Methods: As part of a larger study in rural NSW into the delivery of therapy services, focus groups and individual interviews were conducted with 78 carers and 10 adults with a disability. Data were analysed using constant comparison and thematic analysis. Results: Three related themes emerged: (i) travelling to access therapy; (ii) waiting a long time to get therapy; and (iii) limited access to therapy past early childhood. The themes overlaid the problems of recruiting and retaining sufficient therapists to work in rural areas. Conclusions: Community-based rehabilitation principles offer possibilities for increasing person-centred therapy services. We propose a person-centred and place-based approach that builds on existing service delivery models in the region and involves four inter-related strategies aimed at reducing travel and waiting times and with applicability across the life course.

• Implications for Rehabilitation

• Therapy service delivery in rural and remote areas requires:

• Place-based and person centred strategies to build local capacity in communities.

• Responsive outreach programs working with individuals and local communities.

• Recognition of the need to support families who must travel to access remotely located specialist services.

• Innovative use of technology to supplement and enhance service delivery.

     

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.     

Determining the needs of spouses caring for aphasic partners

Purpose: The study aims to identify the needs of spouses caring for someone who has communication difficulties due to a stroke and to determine what solutions they felt would have helped to alleviate the difficulties they described.

Method: A qualitative approach was chosen in order to determine the carers needs from their point of view. Nine in-depth interviews were undertaken with a self selected group of spouses caring for an aphasic partner in their own home.

Results: Analysis of the interviews indicated that the carers expressed needs in the five main areas of support, information, role change, training and day/respite care. The carers interviewed were also able to identify a variety of practical solutions which, in retrospect, may have helped them to care more effectively for their aphasic partner.

Conclusions: The solutions put forward by the carers highlight the areas in which the Health Trusts providing care for these people should focus future service provision in order to ensure that people caring for aphasic spouses in the home receive the services they feel they need.     

Mobility and access to transport issues as experienced by people with vision impairment living in urban and rural Ireland

Purpose.?The loss of vision is associated with the impairment of functional ability, including a reduced ability to move around and to utilise all forms of transport. Walking in unfamiliar environments is challenging and driving becomes a legal prohibition. This article explores mobility and access to transport issues of urban and rural dwelling people with vision impairment in Ireland.

Methods.?Fourteen focus groups took place consisting of 121 people with vision impairment resident in both urban and rural Ireland. Participant selection was representative of the vision impaired community. Data were recorded, transcribed and analysed using thematic analysis.

Results.?Poor access to public transport and a perceived absence of public awareness about vision impairment are evident from this study. Customised disability awareness training is deemed essential for both the public and transport staff. Difficulties with access issues within the physical environment are highlighted.

Conclusion.?The lack of availability of accessible transport creates an increased dependency on friends and family, and restricts access to medical, social and rehabilitative services. This study highlights issues concerning inequality of access to appropriate transport for rural vision impaired persons. These issues need to be brought to the attention of social planners and local government.     

Urban/rural differences in health insurance coverage among people with multiple sclerosis

Purpose. To present urban/rural analyses of health insurance coverage among people with multiple sclerosis (MS). This research also combined all survey respondents from each urban/rural area into one group of people with MS in health maintenance organizations (HMOs)/managed care and another group of people with MS who have other health insurance plans to compare any differences in coverage.

Methods. We interviewed 1,518 people with MS living in all 50 states. Survey results were analyzed using SPSS.

Results. Most people with MS in each urban/rural area had health insurance coverage (92 – 95%), with significant urban/rural differences observed in HMO/managed care enrollments. We found no urban/rural differences among people with MS in HMOs/managed care, or among people with MS with other health insurance plans, in satisfaction with coverage of routine care and MS-focused care, or with perceptions of how coverage enables utilization of health services. However, we found that people with MS in HMOs/managed care were more satisfied than people with MS with other health insurance with their coverage of routine care and perceived that their coverage enabled greater utilization of routine care and needed medications.

Conclusions. We found no significant differences in satisfaction with MS-focused care or with perceptions of how well coverage enables utilization of MS-focused care or needed assistive devices between people with MS in HMOs/managed care and people with MS who have other health insurance.     

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.     

Experiences of providing prosthetic and orthotic services in Sierra Leone – the local staff’s perspective

In Sierra Leone, West Africa, there are many people with disabilities in need of rehabilitation services after a long civil war. Purpose: The aim of this qualitative study was to explore the experiences of prosthetic and orthotic service delivery in Sierra Leone from the local staff’s perspective. Method: Fifteen prosthetic and orthotic technicians working at all the rehabilitation centres providing prosthetic and orthotic services in Sierra Leone were interviewed. The interviews were transcribed and subjected to latent content analysis. Results: One main theme emerged: sense of inability to deliver high-quality prosthetic and orthotic services. This main theme was generated from eight sub-themes: Desire for professional development; appraisals of work satisfaction and norms; patients neglected by family; limited access to the prosthetic and orthotic services available; problems with materials and machines; low public awareness concerning disabilities; marginalisation in society and low priority on the part of government. Conclusions: The findings illustrated traditional beliefs about the causes of disability and that the public’s attitude needs to change to include and value people with disabilities. Support from international organisations was considered necessary as well as educating more prosthetic and orthotic staff to a higher level.

Implications for Rehabilitation

• There is a need for educating more prosthetic and orthotic staff to a category I or II level in Sierra Leone.

• There is a need to put a greater focus on making materials available for the fabrication of prosthetic and orthotic devices and also on the transport for patients as to increase access to prosthetic and orthotic services.

• At the societal level, both traditional beliefs about the causes of disability and the public attitudes need to change to include and assign value to people with disabilities.

• Support from international organisations is needed to provide effective rehabilitation services.

     

The development of a framework for high-quality,sustainable and accessible rural private therapy under the Australian National Disability Insurance Scheme

Purpose: The Australian National Disability Insurance Scheme (NDIS) will provide people with individual funding with which to purchase services such as therapy from private providers. This study developed a framework to support rural private therapists to meet the anticipated increase in demand.

Method: The study consisted of three stages utilizing focus groups, interviews and an online expert panel. Participants included private therapists delivering services in rural New South Wales (n?=?28), disability service users (n?=?9) and key representatives from a range of relevant consumer and service organizations (n?=?16). We conducted a thematic analysis of focus groups and interview data and developed a draft framework which was subsequently refined based on feedback from stakeholders.

Results: The framework highlights the need for a ‘rural-proofed’ policy context in which service users, therapists and communities engage collaboratively in a therapy pathway. This collaborative engagement is supported by enablers, including networks, resources and processes which are influenced by the drivers of time, cost, opportunity and motivation.

Conclusions: The framework identifies factors that will facilitate delivery of high-quality, sustainable, individualized private therapy services for people with a disability in rural Australia under the NDIS and emphasizes the need to reconceptualize the nature of private therapy service delivery.

• Implications for Rehabilitation

• Rural private therapists need upskilling to work with individuals with disability who have individual funding such as that provided by the Australian National Disability Insurance Scheme.

• Therapists working in rural communities need to consider alternative ways of delivering therapy to individuals with disability beyond the traditional one-on-one therapy models.

• Rural private therapists need support to work collaboratively with individuals with disability and the local community.

• Rural private therapists should harness locally available and broader networks, resources and processes to meet the needs and goals of individuals with disability.

     

A service evaluation of a specialist community palliative care occupational therapy service

Abstract

Background

Occupational therapy aims to maximize patients' independence and is thus particularly relevant in palliative care where a loss of function is both common and distressing for patients. However, there is evidence that health professionals have a limited understanding of its role and remit, with the consequence that timely referrals are not made.

Method

A service evaluation was undertaken to establish colleagues' understanding of the palliative care occupational therapy service and its perceived benefit to patients in one local primary care area. A mixed methods approach was used, combining an online survey and focus groups. One hundred people were invited to complete the questionnaire, with a 58% response rate. Twenty-five people subsequently participated in two focus groups.

Results

Participants believed that the service achieved its aims. The main reasons for referral to the occupational therapy service were for the provision of equipment, or advice about equipment to support independent community living. Facilitating patients' preferred place of care was ranked next in importance. Participants did not feel that they were sufficiently aware of the full range of occupational therapy services available, and suggested that the provision of education and information would be effective in raising awareness of the remit of the specialist occupational therapy service.

Conclusion

From the professional service users' perspective, the specialist community palliative care occupational therapy service makes a valuable contribution to maintaining patients' independence, comfort, and quality of life, and is associated with supporting patients' preferred place of care. Areas highlighted for development include clear communication pathways, and education and information strategies regarding the role of the palliative care occupational therapist.     

Impact of environmental factors in home rehabilitation – a qualitative study from the perspective of older persons using the International Classification of Functioning,Disability and Health to describe facilitators and barriers

Purpose: The aim of this study was to explore older people’s experience of environmental factors that impact on their activity and participation in home rehabilitation. Method: Older people aged between 68 and 93 years and receiving home rehabilitation were interviewed. A qualitative content analysis was performed on the interview text using the predetermined structure of the International Classification of Functioning, Disability and Health (ICF) environmental domain. The text was linked to the closest ICF category. Results: The results identified environmental facilitators and barriers that influenced activity and participation among older people receiving home rehabilitation. Approaches that provided a facilitative environment were access to assistive products and technologies, alterations to the physical environment, social support and relationships, and adjusted health and social care services. Conclusions: A qualitative study using ICF-listed environmental factors contributed a holistic view of facilitators and barriers in home rehabilitation for older people. Awareness of the importance of the impact of the social environment on activities and participation could improve home rehabilitation services for older people. The study represents an important step towards a holistic approach using the ICF, which aims to enable all health care professionals to describe, plan and evaluate rehabilitation services together with older people across the health and social care sectors.

Implications for Rehabilitation

• Environmental factors can be considered as obstacles or facilitators depending on each unique individual’s need.

• In a relatively small sample, this study shows the importance of the impact of the social environment on activities and participation among older people receiving home rehabilitation.

• Using ICF “linking rules” to link environmental factors as facilitators or barriers reported by older people can identify potentially important areas in home rehabilitation service described in the ICF categories. This can facilitate to improve rehabilitation service for older people.

• Reveals health care professionals as one central environmental factor for older people’s rehabilitation.

     

Parental perceptions of information needs and service provision for children with developmental disabilities in rural Australia

Abstract

Purpose: Rural Australians comprise a third of the population. However, there are relatively few research studies that have focused on issues for children with developmental disabilities in rural regions. In particular, there is very limited research that gives voice to parents regarding challenges faced by them due to their location in rural regions. Methods: This article is based on the qualitative component of a mixed-methods study undertaken in rural settings. In-depth, face-to-face interviews were conducted with 17 parents yielding 30?h of information rich taped data. Thematic analysis techniques were used to identify major issues. Results: Three core themes emerged from analysis of the qualitative data regarding information and support needs: an ongoing lack of timely and relevant information about disabilities and support services; inadequacies in interactions with service providers particularly doctors and allied health staff; and considerable challenges and barriers to access and use of health services. Conclusions: Within the constraints of limited rural service provision, there are still opportunities for considerable improvements, through focussed in-service training to narrow the information gap, improve provider-client interaction around attitudinal issues and uptake of tele-health to minimise the long waiting times and the need to regularly travel long distances to access services and setting up online support groups.

• Implications for Rehabilitation

• There is limited information on challenges faced by parents of children with developmental disabilities in rural Australia.

• The challenges around lack of information about support systems available add to parental stress as does limited experience, frequent staff turnover and poor attitude of many service providers.

• There is a need to improve rural service provision. Feasible options within resource constraints include focussed in-service training to narrow the information gap, improve provider-client interaction around attitudinal issues, and uptake of tele-health services.

• Setting up of parent-professional support groups as well peer support groups using digital technologies will help reduce the sense of isolation for rural carers and minimise impediments related to travelling long distances.

     

Alternative service delivery models for families with a new speech generating device: Perspectives of parents and therapists

Abstract

Purpose: Research has revealed limitations in the provision of in-person services to families with a new speech generating device (SGD), both in Australia and overseas. Alternative service models such as parent training, peer support and telepractice may offer a solution, but their use with this population has not been researched to date.

Method: Using interviews and focus groups, this study explored the experiences and opinions of 13 speech-language pathologists and seven parents regarding alternatives to in-person support and training for families with a new SGD. Data were analysed using grounded theory. Themes explored in this paper include the benefits and drawbacks of alternative service models as well as participants’ suggestions for the optimal implementation of these approaches.

Result: Participants confirmed the utility of alternative service models, particularly for rural/remote and underserviced clients. Benefits of these models included reduced travel time for families and therapists, as well as enhanced information access, support and advocacy for parents.

Conclusion: Participants viewed the provision of ongoing professional support to families as critical, regardless of service modality. Additional issues arising from this study include the need for development of organizational policies, resources and training infrastructure to support the implementation of these alternative service models.     

Using participatory action research in community-based rehabilitation for people with acquired brain injury: from service provision to partnership with Aboriginal communities

Purpose.?Community-based rehabilitation (CBR) developed in response to delivery of rehabilitation services to people with disability in developing countries, and appears appropriate to address rehabilitation needs of rural and remote populations, including Australian Aboriginal People with acquired brain injury (ABI). This article will describe participatory action research (PAR) as a vehicle for exploring and translating the CBR model within a mainstream brain injury rehabilitation service in Queensland, Australia.

Method.?PAR was conducted with two self-selected remote Aboriginal communities in Far North Queensland. Key components to this project were the employment of a local Aboriginal worker, facilitating community engagement and consultation. PAR elements of planning, action and review were conducted through individual and group meetings and activities within the communities across a 3-year period.

Results.?The project has facilitated expansion and change within the current brain injury rehabilitation service model in line with CBR philosophical foundations, including community development and partnership as a desirable way of engaging with key stakeholders.

Conclusions.?The focus on community consultation through PAR and the development of community partnerships has increased the cultural competency of the rehabilitation service, the capacity of participating communities and of the sector to respond in ways that are valued and owned by Aboriginal People with brain injury, their families and communities.     

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

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

Meeting the health needs of problematic drug users through community pharmacy: A qualitative study

Background: Community pharmacies are established service providers for problematic drug users (PDUs). PDUs have many unmet health needs, which pharmacists may be able to help resolve. This paper aims to qualitatively explore the feasibility and desirability of further developing community pharmacy services to meet the wider health needs of problematic drug users.

Methods: Semi-structured interviews and focus group discussions were used to explore current and future pharmacy service provision to PDUs. Views were sought from 20 PDUs, 12 staff from community pharmacies, and seven stakeholders and commissioners from relevant agencies. Data were thematically analyzed and potential services including possible barriers identified.

Results & Discussion: Data highlighted variability in current services in the study area in terms of availability and quality. Good rapport between users and regular staff was highlighted as an important factor in good quality services. Pharmacies were consistently identified as having key opportunities to make useful health interventions within a range of therapeutic areas including nutrition, dentistry, wound care, and infectious diseases. The most widely supported roles were based around information provision and signposting. However, there was support for direct interventions to be delivered within the pharmacy, by a regular member of staff or a visiting specialist.     

A population approach to understanding children's access to assistive technology

Purpose.?To determine whether service delivery system factors, including having a quality medical home, access to therapeutic services, or enrolment in early intervention/special education services, are associated with meeting children's needs for assistive technology (AT).

Method.?Data were analysed for children 0–17 years of age participating in the 2001 US National Survey of Children with Special Health Care Needs who required AT services (N = 18,372) and a subgroup of children needing assistive devices typically provided by rehabilitation professionals (N = 4429). AT needs included vision or hearing aids or care, communication or mobility devices, or other medical equipment. Unmet need was defined as not receiving all needed services. Estimates were generated of the per cent of children needing and having unmet needs for services. Associations between the medical home, therapy and education variables and having an unmet need for AT were assessed using logistic regression.

Results.?An estimated 49% of children with special health care needs require AT services. Twelve per cent require AT services typically provided by rehabilitation professionals. Of the latter group, 14% had unmet needs. The likelihood of having unmet AT needs was greater for children lacking a quality medical home (a.O.R. = 3.27 [95% C.I. = 2.29–4.66]) and/or those not receiving needed therapy services (a.O.R. = 3.52 [95% C.I. = 2.25–5.48]) than for children whose medical home and therapy service expectations were met. Enrolment in early intervention/special education was not associated with having unmet needs for AT.

Conclusions.?Promoting quality care within a complex service delivery system is critical to meeting the AT needs of children and their families. Changes in the structure and processes of care, including facilitating access to a quality medical home and needed therapy services would likely increase access to needed AT.     

Providing instructional support for AAC service delivery in low- and middle-income (LAMI) countries

Purpose: The majority of individuals with disabilities live in low- and middle-income (LAMI) countries; typically these individuals receive limited, if any, communication rehabilitation services. The present study investigated the experiences of eight augmentative and alternative communication (AAC) professionals who had provided instructional support for AAC service delivery in LAMI countries.

Method: An online focus group was used to explore the training experiences of eight AAC professionals.

Result: A thematic analysis of the focus group discussion resulted in four major recommendations when providing training for AAC service delivery in LAMI countries: (a) investigate learner needs, (b) provide contextually relevant instructional content, (c) use engaging instructional activities and (d) assess the impacts of instructional activities.

Conclusion: The instructional recommendations of the focus group participants are discussed within a theoretical framework of recommended best practices in supporting adult learning. The information shared by the focus group participants will benefit others providing instructional support for AAC service delivery in LAMI countries.