Parental views from rural Cambodia on disability causation and change

Purpose.?This study explored the beliefs of Cambodian parents of children with cerebral palsy regarding disability causation and their perceptions of the effectiveness of interventions in bringing about change in their child.

Results.?Beliefs around disability causation were mixed, with equal numbers of participants attributing their child's disability to biomedical causes as to traditional causes incorporating elements of Theravada Buddhism, animism and Brahmanism. While many participants had initially sought traditional interventions for their child, few found them to be effective and most had subsequently utilised medical and rehabilitation services. Parents whose children were moderately or severely impaired perceived both traditional interventions and rehabilitation to be less effective than parents of children with mild impairments. Participants generally judged the effectiveness of interventions based on functional changes in their child.

Conclusions.?The complexity of Khmer belief systems was reflected in the range of participants' perceptions of the cause of their child's disability, yet beliefs around disability causation did not appear to have determined their care-seeking behaviour or their perceptions of effectiveness of interventions.     

Attitudes and perceptions towards disability and sexuality

Purpose.?To describe current societal perceptions and attitudes towards sexuality and disability and how social stigma differs between individuals living with visible and invisible disabilities.

Method.?A qualitative approach was used to explore attitudes and perceptions towards sexuality and disability. Focus groups were conducted with the following groups: service providers, people with visible disabilities, people with invisible disabilities and the general public. The focus group participants viewed ‘Sexability’ a documentary film on sexuality and disability to stimulate discussion midway through the session.

Results.?Findings suggest that individuals with disabilities are commonly viewed as asexual due to a predominant heteronormative idea of sex and what is considered natural. A lack of information and education on sexuality and disability was felt to be a major contributing factors towards the stigma attached to disability and sexuality.

Conclusions.?Stigma can lead individuals to internalise concepts of asexuality and may negatively impact confidence, desire and ability to find a partner while distorting one's overall sexual self-concept. Societal attitudes and perceptions are driven by education and knowledge, if there is no exposure to sexuality and disability, it follows suit that society would have a narrow understanding of these issues. Further research should focus on how best to educate and inform all members of society.     

Community services for young adults with motor disabilities – A paradox

Purpose.?To understand the contribution of educational, employment, transportation, and assured income service programs to the successful transition to adulthood of young persons with motor disabilities.

Method.?Personal interviews of 76 young adults ages 20 to 30 years with a diagnosis of cerebral palsy (n?=?54) or spina bifida (n?=?22) varying in functional mobility. Content analysis of transcribed interviews was conducted and themes identified.

Results.?‘Paradox of Services' emerged as a dominant theme across all four service sectors. Services designed to encourage independence and full participation for the young adults in their communities often restricted their independence and employment options in young adulthood.

Conclusions.?Services need to be more individualized and flexible to accommodate the environmental and personal needs of the young adults. Rehabilitation professionals have important roles at both an individual family level and the systems level to ensure the ‘best fit’ between persons with motor disabilities and the services available to them. Contemporary views of disability support rehabilitation intervention targeting both individual and environmental factors.     

An analysis of disability models and the application of the ICF to obesity

Purpose.?Given the significant increase in obesity rates and associated health risks, understanding obesity treatment in the context of disability is important to rehabilitation practitioners.

Method.?Published literature in the area of obesity research and clinical practice was reviewed within the medical, social and biopsychosocial conceptual models of disability.

Results.?There is universal agreement that disability is experienced by obese persons. However, interventions for rehabilitation practitioners are not articulated clearly in the literature. No specific conceptual model to underpin rehabilitation treatment is recommended.

Conclusions.?This article provides a rationale for rehabilitation practitioners to use a biopsychosocial model (the International Classification of Functioning, Disability and Health) as a universal framework to classify disability related to the condition of obesity.     

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.     

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.     

Reactions to invisible disability: The experiences of young women survivors of hemorrhagic stroke

Purpose.?To discuss how young, female and invisibly disabled, long-term survivors of hemorrhagic stroke experience the reactions of others as they negotiate the social environment.

Method.?Open-ended and in-depth interviews were conducted with 22 women to learn about their post-stroke experiences, and the interviews were analyzed for common issues and themes.

Results.?Participants expressed concerns about the reactions of others in the context of discussing popular understandings about who is affected by stroke, and the significance of having invisible disabilities. Participants' experiences were mediated by the cultural belief that stroke is a disease of old age, and by the belief that disabilities worth taking seriously are readily visible. The existence of these beliefs about stroke and disability made it difficult for participants to deal with the reactions of others.

Conclusions.?Participants must negotiate their everyday lives within a social context that they are ill-prepared to deal with. Rehabilitation practices need to take this into account and counsel stroke survivors about what to expect and what they need to do for a good QOL in the community.     

The ICF and third-party disability: Its application to spouses of older people with hearing impairment

Purpose.?Third-party disability is defined as the disability of family members due to the health condition of their significant other and was identified as a direction for future development by the World Health Organization in 2001. The aim of this article is to identify the International Classification of Functioning, Disability and Health (ICF) domains and categories that describe third-party disability of spouses of older people with hearing impairment.

Method.?Ten spouses of older people with hearing impairment participated in individual semi-structured in-depth interviews. Themes identified by participants were linked according to ICF instructions to deliver a set of ICF category codes relevant to the study of third-party disability in spouses of older people with hearing impairment.

Results.?A total of 18 themes and 50 sub-themes emerged from analysis of the interviews. The majority of these themes were able to be linked to the ICF, with the majority linking to codes in the activities and participation component. A number of contextual factors also emerged in the interviews that impacted on the spouses' third-party disability. Difficulties arose when attempting to link themes to the body function component.

Conclusions.?The ICF appears to be a useful tool in describing the effects of hearing impairment on the significant other; however, further research is necessary to clarify the applicability of some codes to third-party disability, especially the relevance of body functions to third-party disability.     

Potential contributions to disability theorizing and research from positive pyschology

Purpose.?Within the context of taking the perspectives of disabled individuals themselves more seriously, it is imperative that researchers and practitioners accord due primacy to the experiential worlds and everyday lived experiences of individuals with disabilities. Based on the premise that theoretical groundedness (along with methodological rigour) is integral to sound research, it is argued that the existing body of knowledge regarding the lived experiences of individuals with disabilities may be complemented by a conceptual placing of understandings of disability in relation to a prominent theoretical pathway at the moment, namely, the interdisciplinary emphasis on human strengths and wellness.

Method.?A critical engagement with key conceptualizations of disability entailed a focus on the development, strengths, and challenges of medical, social and psychologically based conceptualizations of disability.

Results and conclusion.?The existing body of knowledge around disability may be extended and complemented by key concepts regarding human health/wellness from the field of Positive Psychology. Positive Psychology's keynote contribution to the study of disability and rehabilitation entails directing researchers and practitioners to the aim of building, reinforcing and extending disabled individuals' strengths and capacities in order to optimize their functioning in all areas of life, and thereby promote wellness.     

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.     

Parents' perspectives on occupational therapy and physical therapy goals for children with cerebral palsy

Contemporary rehabilitation literature emphasises functional goals for children with disabilities and use of a collaborative goal-setting process grounded in principles of family centred service delivery.

Purpose.?To explore parents' experiences with goals and goal setting.

Method.?We conducted a qualitative study with 11 focus groups and two individual interviews with 39 parents of children with cerebral palsy living in western Canada. We used an inductive, thematic analysis to identify prominent themes.

Results.?The analysis revealed five themes representing goals that were meaningful to parents and provided insight into parents' experiences with goal-setting processes in occupational and physical therapy: (1) movement as the means to functional success; (2) physical health and fitness are important therapy goals; (3) the importance of leading happy, fulfilling lives and being accepted by others; (4) ‘We can't do it all’: balancing therapy with the demands of everyday life; and (5) shifting roles and responsibilities in goal setting.

Conclusions.?The variability noted both in parents' desired role in goal setting and in goals important to parents highlights the importance of establishing trusting relationships with families so that family goals, values, individual circumstances, and desired level of participation in goal setting can be openly discussed.     

Initial steps towards a theory and praxis of person–environment interaction in disability

Background.?Recent disability studies and classifications use a simple concept of person–environment interaction. Further advances in theory and praxis may require a more complex understanding of that interaction.

Objectives.?To present (1) a framework for person–environment interactions that highlights their diversity and (2) initial steps in applying it to theory and practice.

Method.?For the person, we focus on the identities that the person may assume over time. For the environment, we focus on the initial state and change in reaction to the person or to the effects of the interaction. We take into account overlaps between the person and the environment.

The framework.?The framework includes four components of the person's identity: non-disabled, disabled, identity project and identity imputed by others and four components of the environment: the given, the reactive during interaction, modified after interaction and internalised. We also include interactions of the person in different environments that may influence each other, and, do the same for interactions among key actors.

Applications.?An example is given in detail. The praxis of rehabilitation may be enhanced by taking into account the relations among these subsets of personal identity and environment in programme planning, for instance, in the matching of person and assistive technology or in home support services.

Discussion.?The framework may serve to build a theory of person–environment interaction in disability that is compatible with interaction in other forms of difference among individuals. Thus, further social theoretical studies would encompass three distinct theories of impairment disability and person–environment interaction, respectively.     

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.     

Cultural models of child disability: perspectives of parents in Malaysia

Abstract

Background: This study examined parents’ developmental concerns for their children within the context of systems of care in Malaysia.

Methods: Focus groups and interviews were conducted in peninsular Malaysia and Borneo.

Results: Parents’ perceptions of developmental delay stemmed from three sources: the cultural, resource, and the social environments.

Conclusion: There is a need to develop a medical support system in Malaysia that considers a life-course perspective, including prenatal care, screening/diagnosis, and services. This system should embrace a family-centered approach to diagnosis, referral, intervention, and support with sensitivity to cultural beliefs, family preferences, and barriers to care.

• Implications for Rehabilitation

• Parental perceptions of disability affect the strategies they use to cope.

• This research found that cultural conceptions of disability, available resources, and social support affect parental perceptions of disability.

• The resource environment in Malaysia significantly restricts parents’ ability to cope with their child's disability.

• This research recommended that the medical system of Malaysia develops a life-course perspective to disability to provide a range of care for children with disabilities including prenatal care, screening and rehabilitation or coping services.

     

Healing care? Rehabilitation of female immigrant patients with chronic pain from a family perspective

Purpose.?This pilot study aimed to address the social context of rehabilitation by exploring the perspectives of family members regarding rehabilitation of female immigrant patients with a chronic pain condition.

Method.?In-depth semi-structured, face-to-face interviews were conducted with family members of nine patients. The interviews were transcribed and subsequently coded and analysed according to themes.

Results.?All participants acknowledged that their respective relative experiences pain. Pain is considered a symptom of the malfunctioning body and different explanatory notions are given. Participants regarded medication, warmth, rest or gentle exercise to be appropriate treatment options. Most participants had limited awareness of, and involvement in, rehabilitation. The role of family members in illness management lies mainly in providing advice and in taking over or assisting in domestic activities.

Conclusion.?The importance of considering the patient's social context and involving family in the treatment process is indicated in the literature. However, awareness of the aim and content of rehabilitation was limited among most participating family members as was their involvement in the rehabilitation process of their relative. It is recommended that further research needs to look at factors influencing involvement of family members before effective strategies for involving family members of patients of various socio-economic and/or cultural backgrounds can be developed.     

Mothers' perceptions of their disabled children: A review of the literature

A review of the literature indicates few generalizations that can be made about mothers' perceptions of their disabled children. Perceptions differ widely and are generally unrelated to the type of disability, although there are some indications that perceptions of severely disabled children tend to be more negative than those of children with less severe disabilities. Maternal perceptions usually are not accurate in the sense that they do not agree with the perceptions of rehabilitation professionals, teachers, or their own disabled children. Nevertheless, maternal perceptions are important since they influence how mothers behave toward their children. Rehabilitation personnnel should consider ways of influencing maternal perceptions so they are in the best interests of disabled children.