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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Research indicates that occupation is important for well-being in people with mental illness, but this has not been extensively studied among those with severe psychiatric disabilities. Social contacts may possibly play a more vital role for them. This study aimed to explore how aspects of occupation and social interaction were related with well-being factors in that group, while controlling for the influence of clinical factors. People with psychiatric disabilities living in congregate supported housing (CSH; N = 155) responded to questionnaires addressing occupation, social contacts and well-being aspects, such as subjective health, quality of life, self-mastery, and personal recovery. A comparison group with psychiatric disabilities who lived in an ordinary flat or house and received outreach housing support (N=111) completed the same instruments. The two groups were compared regarding their pattern of associations between occupation, social contacts, and well-being. Associations between occupation and well-being in the CSH group showed that general satisfaction with everyday occupations in particular was related to all aspects of well-being, whereas activity level and occupational balance were not related to well-being. The relationships were fewer and weaker, in comparison to the group in ordinary housing with outreach support. Indicators of social contacts were basically unrelated to well-being. The study contributes to occupational science by showing that the role of a high activity level for well-being, although important, should not be overemphasized. Future research should focus on narratives to get the voices of people residing in CSH and on exploration of how individually/socially performed occupations are associated with well-being.

Purpose: In this paper, we critically investigate the implementation of person-centered care with the purpose of advancing philosophical debates regarding the overarching aims and delivery of rehabilitation. While general agreement exists regarding person centered care’s core principles, how practitioners reconcile the implementation of these principles with competing practice demands remains an open question.

Materials and methods: For the paper, we drew on post-qualitative methods to engage in a process of “diffractive” analysis wherein we analyzed the micro-doings of person-centered care in everyday rehabilitation work. Working from our team members’ diverse experiences, traditions, and epistemological commitments, we engaged with data from nine “care events” generated in previous research to interrogate the multiple forces that co-produce care practices.

Results: We map our analyses under three categories: scripts mediate practice, securing compliance through “benevolent manipulations”, and care(ful) tinkering. In the latter, we explore the notion of tinkering as a useful concept for approaching person centered care. Uncertainty, humility, and doubt in one’s expertise are inherent to tinkering, which involves a continual questioning of what to do, what is best, and what is person centered care within each moment of care. The paper concludes with a discussion of the implications for rehabilitation and person-centered care.

Knowledge is scarce on parental satisfaction with the inclusion of children with disabilities in physical education (PE). This study explored how parents’ satisfaction with inclusion in PE was associated with parental and child interpersonal and intrapersonal characteristics. Seventy-two parents of children with disabilities participated in the survey-based study. The results of the ordinary least square regression (OLS) and quantile regression (QR) indicated that the parents’ satisfaction with social inclusion in PE was associated with their attitudes towards inclusion in PE, perceived PE-related information sharing, and the type of disability and degree of physical inclusion. Parents’ satisfaction with pedagogical inclusion of children in PE was associated with their attitudes towards inclusion in PE, PE-related information sharing, and the children’s degrees of disability and physical inclusion. Furthermore, the QR estimates indicated that the explanatory strength of parental attitudes towards inclusion in PE varied with the degree of parental satisfaction with social and pedagogical inclusion of their children in PE. Practical and methodological implications of the findings are discussed.

Purpose: Explore managers’ experiences regarding employees with hearing impairments.

Materials and methods: Individual interviews with ten managers having employees with hearing impairment. The interviews were analyzed using Systematic text condensation.

Results: The managers felt great responsibility for their employees’ functioning, but hearing loss issues were easily forgotten. They found access to information as imperative to secure workplace adjustments, and temporary needs, rather than permanent ones, were easily met. Despite their challenging nature, meetings were not accommodated to meet hearing loss needs. Support in accommodation processes at the workplace was not requested since minor adjustments were perceived as sufficient.

Conclusion: The results show that there are barriers towards developing less strenuous working conditions for employees with hearing impairments. The implications of hearing loss should be recognized as risk factors for fatigue and treated accordingly. Appropriate services are necessary to support the stakeholders at the workplace and utilize the room for manoeuver in the accommodation process. Further studies should identify how such services can accommodate both the employees, and managers’ needs.

Purpose: 

Hip fractures are an important public health issue. Ninety-five percent of hip fractures are caused by falls, with those at greatest risk including residents of long-term care facilities. Hip protectors can be effective in preventing hip fractures, but levels of acceptance and adherence may be low. We report on work to develop research into a new hip protector that aims to overcome some of the acceptance and adherence challenges.

Methods: 

We held five patient and public consultation events involving 147 older adults and 10 long-term care sector staff in the Midlands and North West of England. At each event, participants were shown the Fall-Safe Assist hip protector, which includes built-in mobile technology to record information about falls and summon help from caregivers.

Results: 

Participants were positive about the product’s potential utility and impact upon confidence in moving around. However, many participants held highly personal perceptions of their vulnerability and need, and expressed concerns about the esthetics and practicality of the accompanying underwear. Participants highlighted potential challenges from poor mobile connectivity, and expressed concerns about product cost.

Conclusions:

 Future research will need to ensure flexible and sensitive approaches to recruitment. Further refinement to the product design may be useful. Individual interviews and questionnaires would help capture participants’ perceptions on personal topics, and measures of changes in confidence. Research sites will need to be compatible with technological functionality. It will be necessary to have a robust protocol in place for withdrawal of the product at the end of any clinical research.

This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.

Purpose: Examining everyday challenges in the interactions between people with intellectual disabilities and their staff, as seen from the user’s perspective, is an important perspective in health care research. Involving people with intellectual disabilities as so-called co-researchers is a relatively unexplored research strategy. In this paper, co-researchers participated in all the steps of the research process, from planning to reporting, in addition to the written reporting of the findings. The aim of this study was to explore how people with intellectual disabilities experienced a filmed vignette of an everyday situation.

Method: Based on audio-recorded and transcribed individual and focus-group interviews with people with intellectual disabil- ities, performed by co-researchers with intellectual disabilities together with researchers, qualitative content analysis was used.

Results: The analysis reveals three themes: “being emotionally touched”, “being aware of the other”, and “being unclear”.

Conclusions: The results are discussed in light of normalization and participation in society with independence and one’s own decision-making. Regarding the care of people with intellectual disabilities, the main finding is the need to focus not only on greater involvement of this population in their own daily lives, but also to teach self-determination skills. Another finding is the importance of involving people with intellectual impairment as co-researchers.

Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.