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‘We create our own small world’: daily realities of mothers of disabled children in a South African urban settlement

VAN DER MARK, Elise J
CONRADIE, Ina
DEDDING, Christine W M
BROERSE, Jacqueline E W
2018

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Parents of disabled children face many challenges. Understanding their experiences and acknowledging contextual influences is vital in developing intervention strategies that fit their daily realities. However, studies of parents from a resource-poor context are particularly scarce. This ethnographic study with 30 mothers from a South African township (15 semi-structured interviews and 24 participatory group sessions) unearths how mothers care on their own, in an isolated manner. The complexity of low living standards, being poorly supported by care structures and networks, believing in being the best carer, distrusting others due to a violent context, and resigning towards life shape and are shaped by this solitary care responsibility. For disability inclusive development to be successful, programmes should support mothers by sharing the care responsibility taking into account the isolated nature of mothers’ lives and the impact of poverty. This can provide room for these mothers to increase the well-being of themselves and their children.

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

MALLI, Melina Aikaterini
SAMS, Lara
FORRESTER-JONES, Rachel
MURPHY, Glynis
HENWOOD, Melanie
2018

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The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learn- ing disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well- being both of people with LD and their informal carers. Individuals with LD have lost social support and are experi- encing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for fur- ther discourse and research on the effects of austerity on people with LD and their family carers.

Adaptations from the prosthetic and intact limb during standing on a sway-referenced support surface for transtibial prosthesis users

RUSAW, David F
2018

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Purpose: 

To investigate the bilateral postural adaptations as a result of standing on an increasingly unstable sway-referenced support surface with both the intact and prosthetic limb for transtibial prosthesis users (TPUs).

 

Method: 

TPUs (n = 14) and matched controls (n = 14) stood quietly in multiple foot placement conditions (intact foot, prosthetic foot and both feet) on a sway-referenced support surface which matched surface rotation to the movement of the centre of pressure (CoP). Force and motion data were collected and used to analyse CoP mean position, displacement integral and force components under intact and prosthetic limbs.

 

Results: 

Significant differences were found between prosthesis users and controls in CoP mean position in anteroposterior (1.5 (95% CI, 1.2–1.8) cm) and mediolateral directions (3.1 (95% CI, 0.5–5.7) cm. CoP displacement integrals were significantly different greater for prosthesis user group in the anteroposterior direction. Force components differences were found in all planes (anteroposterior: 0.6 (95% CI, 0.4–0.8 N); mediolateral: 0.1 (95% CI, 0.0–0.2 N & 0.3 (95% CI, 0.2–0.4) N, inferosuperior: 2.2 (95% CI, 1.4–3.0) N).

 

Conclusions: 

TPUs have bilateral static and dynamic postural adaptations when standing on a sway-referenced support surface that is different to controls, and between prosthetic and intact sides. Results further support evidence highlighting importance of the intact limb in maintenance of postural control in prosthesis users. Differences indicate clinical treatment should be directed towards improving outcomes on the intact side.

Older adults’ perceptions of wearable technology hip protectors: implications for further research and development strategies

HALL, Alex
BOULTON, Elisabeth
STANMORE, Emma
2018

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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.

Making it work: experience of living with a person who falls due to multiple sclerosis

CARLING, Anna
NILSAGARD, Yiva
FORSBERG, Anette
October 2018

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Purpose: The purpose of this study was to describe how everyday life is experienced by next of kin sharing residence with a person who falls due to multiple sclerosis (MS).

 

Methods: Twenty face-to-face interviews were analysed using a qualitative content analysis.

 

Results: The overall theme “Making it work” represents the next of kin’s struggle to make life work. It comprises three themes: “Taking responsibility”, “Making adjustments”, and “Standing aside for someone else”. The two first themes reflect what relatives do to make the situation work, and the last theme represents what they give up.

 

Conclusion: Next of kin who share residence and everyday life with a person with MS are affected by that person’s occasional falls. They often take on the responsibility of preventing such falls and adapt their lives practically and emotionally. However, adaptation is neither always enough or always possible. In these cases, relatives often deprioritize their own needs and free time to make everyday life in the home work.

Lost in digitalization? Municipality employment of welfare technologies

FRENNERT, Susanne
2018

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Introduction:

Swedish municipalities face a number of daunting challenges; an aging population, the public’s increased demands and expectations on municipality services, and a strained economy to mention some. Welfare technology, a Scandinavian concept launched to promote digitalization, is seen as one solution to meet these challenges.

 

Objective: 

Despite these promises, few welfare technology applications are offered by local Swedish municipalities and care organizations. Numerous studies have shown that Swedish municipalities have a great interest in welfare technologies.

 

Methods: 

In this article, we draw on empirical research in one Swedish municipality. Through two case studies it is illustrated how technological change and municipality employment of welfare technologies are employed.

 

Results: 

These case studies show how core values of care are being lost in the quest for digitalization due to the lack of organizational skills and knowledge in transforming the relationship of caregiving and care-receiving through the use of digital technology.

 

Conclusions: 

Digitalization and welfare technologies deployed ought to represent and support the core values of caregiving and to receive care. Thus, digital transformation most likely will transform conditions for care receivers and working conditions for care workers. New work processes will evolve, which in turn produce new meanings of home help service work and caregiving.

Eating together as a social network intervention for people with mild intellectual disabilities: a theory-based evaluation

KRUITHOF, Kasper
SUURMOND, Jeanine
HARTING, Janneke
2018

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Purpose: People with mild intellectual disabilities (MID) generally live independently among the wider community. This can result in social exclusion and feelings of loneliness. Therefore, social work organizations aim to socially include people with MID through organizing activities in neighbourhoods that should lead to enlarged networks and increased societal participation. The “Communal Table” is such a, group-orientated, intervention that organizes monthly dinners in Amsterdam, the Netherlands. Because little is known about the effective- ness of interventions aiming to bring about social inclusion for people with MID we explored which types of participants were reached and whether and how the intervention brought about the intended outcomes.

 

Methods: We performed a theory-based evaluation, using participatory observations and qualitative interviews (n = 19). The Communal Table attracted a diverse and loyal group of participants.

 

Results: We distinguished four types of participants—lonely participants, activist participants, satisfied participants and calculating participants—whose pre-existing networks played a significant role in their individual needs for support and the outcomes of the intervention. Outcomes reported included experiences of conviviality and warmth, temporary relief of underlying problems and an overall positive opinion about the intervention, but network enlargement or increased societal participation were not reported.

 

Conclusions: Our findings suggest that social network interventions for people with MID should be tailored to participants’ pre-existing networks and related individual needs to be successful.

Prioritizing barriers and solutions to improve employment for persons with developmental disabilities

KHAYATZADEH,-MAHANI, Akram
WITTEVRONGEL, Krystle
NICHOLAS, David B
ZWICKER, Jennifer D
July 2018

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Purpose: Persons with a developmental disability have the lowest rate of labour force participation relative to other disabilities. The widening gap between the labour force participation of persons with versus without disability has been an enduring concern for many governments across the globe, which has led to policy initiatives such as labour market activation programs, welfare reforms, and equality laws. Despite these policies, persistently poor labour force participation rates for persons with developmental disabilities suggest that this population experiences pervasive barriers to participating in the labour force.

 

Materials and methods: In this study, a two-phase qualitative research design was used to systematically identify, explore and prioritize barriers to employment for persons with developmental disabilities, potential policy solutions and criteria for evaluating future policy initiatives. Incorporating diverse stakeholder perspectives, a Nominal Group Technique and a modified Delphi technique were used to collect and analyze data.

 

Results: Findings indicate that barriers to employment for persons with developmental disabilities are multi-factorial and policy solutions to address these barriers require stakeholder engagement and collaboration from multiple sectors.

 

Conclusions: Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities. Policy and decision makers need to address barriers to employment for persons with developmental disabilities more holistically by designing policies considering employers and the workplace, persons with developmental disabilities and the broader society. Findings call for cross-sectoral collaboration using a Whole of Government approach.

Everyday life in older men living alone – a complex view needing a biopsychosocial perspective

VON HEIDENKEN WAGERT, Petra
NYGARD, Susanne
CEDERBOM, Sara
June 2018

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Purpose: To explore how older men living alone, describe their everyday activities and their abilities as well as how they could be helped in everyday life.

 

Materials and methods: Qualitative semi-structured interviews were analysed with inductive content analysis. Eight men aged 65+ years were included. They were all living alone, albeit with home help services. They were able to walk and had sufficient cognitive ability.

 

Results: The analysis resulted in one theme “A driving force of managing activities and overcome hindering factors requires a broad spectrum of prerequisites for participating in everyday life” with the following four categories: Importance of everyday activities; individual prerequisites enabling everyday activities; body and mind inhibit, and react to the decreased, abilities; and importance of the environment.

 

Conclusions: The results generate a complex view of older men’s everyday life. It is important for older men’s independence that health care and rehabilitation staff adopt a comprehensive view and work from a biopsychosocial (BPS) perspective.

Maintaining professional integrity: experiences of case workers performing the assessments that determine children’s access to personal assistance

HULTMAN, Lill
FORINDER, Ulla
FUGL-MEYER, Kerstin
PERGERT, Pernilla
2018

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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.

Kinect4FOG: monitoring and improving mobility in people with Parkinson’s using a novel system incorporating the Microsoft Kinect v2

AMINI, Amin
BANITSAS, Konstantinos
YOUNG, William R
2018

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Parkinson’s is a neurodegenerative condition associated with several motor symptoms including tremors and slowness of movement. Freezing of gait (FOG); the sensation of one’s feet being “glued” to the floor, is one of the most debilitating symptoms associated with advanced Parkinson’s. FOG not only contributes to falls and related injuries, but also compromises quality of life as people often avoid engaging in functional daily activities both inside and outside the home. In the current study, we describe a novel system designed to detect FOG and falling in people with Parkinson’s (PwP) as well as monitoring and improving their mobility using laser-based visual cues cast by an automated laser system. The system utilizes a RGB-D sensor based on Microsoft Kinect v2 and a laser casting system consisting of two servo motors and an Arduino microcontroller. This system was evaluated by 15 PwP with FOG. Here, we present details of the system along with a summary of feedback provided by PwP. Despite limitations regarding its outdoor use, feedback was very positive in terms of domestic usability and convenience, where 12/15 PwP showed interest in installing and using the system at their homes.

Speech and language pathologists’ perceptions and practises of communication partner training to support children’s communication with high-tech speech generating devices

TEGLER, Helena
PLESS, Mia
JOHANSSON, Monica Blom
SONNANDER, Karin
2018

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Purpose: 

This study examined speech and language pathologists’ (SLPs’) perceptions and practices of communication partner training with high-tech speech generating devices (SGDs).

 

Method: 

Fifteen SLPs were recruited throughout Sweden. The SLPs answered a study-specific questionnaire on communication partner training in relation to communication partners to children with severe cerebral palsy and intellectual disability. The results were analysed with descriptive statistics (closed-ended questions, responses on Likert scales) and content analysis (open-ended question) using ICF-CY.

 

Results:

Twelve SLPs completed the survey. Half had no or one training session with communication partners in the last year. One-third never used documents for goal-setting. Half seldom or never taught communication partner strategies. Three quarters only used verbal instructions. The main obstacles were environmental factors.

 

Conclusions

This study contributes valuable knowledge about high-tech SGD interventions targeting communication partners. The high-tech SGD intervention may benefit from goal-setting, extended number of training sessions and a range of instructional approaches.

‘It’s my home and your work’: the views of a filmed vignette describing a challenging everyday situation from the perspective of people with intellectual disabilities

HELLZEN, Ove
HAUGENES, Marit
ØSTBY, May
2018

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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.

Aligning with the flow of control: A grounded theory study of choice and autonomy in decision-making practices of people with intellectual disabilities

CAREY, Eileen
2018

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Purpose: Choice and autonomy are recognized as values facilitating genuine self- determination. Subsequently greater understanding of these concepts in decision-making practices of adults with intellectual disabilities is required.

 

Aims: The twofold aim of this research study was to ascertain the core concern (most important issue) for adults with intellectual disabilities as they make choices and exercise autonomy and to develop a theory explaining how these adults attempt to resolve their core concern.

 

Methods: This research study undertaken in a single organization in the Republic of Ireland applied classic-grounded theory methods. Participants included twelve adults who were attending day services and accessing a variety of other organizational services. Interviews were undertaken, between January 2012 and September 2013, in different contexts on up to 4 occasions (46 interviews). Data analysis utilized concurrent processes of constant comparative analysis.

 

Results: The main issue of concern for these participants was ‘control’ in environments that were controlling of them and they responded by ‘aligning with the flow of control’ explained by how they framed control, emotionally connected and adjusted in compliance situations.

 

Conclusions: This theory offers a conceptual delineation of the way adults with intellectual disabilities manage the daily tensions and harmonies in decision-making.

‘We need “culture-bridges”: professionals’ experiences of sex education for pupils with intellectual disabilities in a multicultural society

LÖFGREN-MÅRTENSON, Charlotta
OUIS, Pernilla
2018

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This study aimed to explore how sex education in special schools in Sweden is influenced and challenged by the multicultural aspects of modern society. In particular, it sought to explore professio- nalls' experiences of sex education and of honour-related experiences among young people with intellectual disabilities. Data from five individual interviews and one focus groups with four profes- sionals were thematically analysed using sexual scripts as a theoretical framework. The results reveal an ambivalent honour-related script geared toward pupils with intellectual disabilities from cul- tural backgrounds differing from those of the Swedish mainstream. The provision of sex education, including information about hon- our-related experiences, is especially important because of these young people’s vulnerability; however, addressing the subject effectively is sensitive and complicated. Colleagues with different cultural backgrounds can act as ‘culture bridges’ for professionals who lack strategies, methods and materials. Increasing profes- sionals’ prerequisite qualifications (e.g. further education, supervision) and adopting autonomy-promoted conduct can empower pupils with intellectual disability to exercise autonomy over their sexuality outside their immediate cultural context.

From individual innovation to global impact: the Global Cooperation on Assistive Technology (GATE) innovation snapshot as a method for sharing and scaling

LAYTON, Natasha
MURPHY, Caitlin
BELL, Diane
2018

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Assistive technology (AT) is an essential facilitator of independence and participation, both for people living with the effects of disability and/or non-communicable disease, as well as people aging with resultant functional decline. The World Health Organization (WHO) recognizes the substantial gap between the need for and provision of AT and is leading change through the Global Cooperation on Assistive Technology (GATE) initiative. Showcasing innovations gathered from 92 global researchers, innovators, users and educators of AT through the WHO GREAT Summit, this article provides an analysis of ideas and actions on a range of dimensions in order to provide a global overview of AT innovation. The accessible method used to capture and showcase this data is presented and critiqued, concluding that “innovation snapshots” are a rapid and concise strategy to capture and showcase AT innovation and to foster global collaboration.

Enabling appropriate personnel skill-mix for progressive realization of equitable access to assistive technology

SMITH, Emma M
GOWRAN, Rosemary Joan
MANNAN, Hasheem
DONNELLY, Brian
ALVAREZ, Liliana
BELL, Diane
CONTEPOMI, Silvana
ENNION (WEGNER), Liezel
HOOGERWERF, Evert-Jan
HOWE, Tracey
JAN, Yih-Kuen
KAGWIZA, Jeanne
LAYTON, Natasha
LEDGERD, Ritchard
MACLACHLAN, Malcolm
OGGERO, Giulia
PETTERSSON, Cecilia
POUSADA, Thais
SCHEFFLER, Elsje
WU, Sam
2018

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Background and Methods: This paper reviews the current capacity of personnel in enabling access to assistive technology (AT) as well as the systems and processes within which they work, and was reviewed, discussed, and refined during and following the Global Research, Innovation, and Education in Assistive Technology (GREAT) Summit.

 

Findings: Key concepts addressed include a person-centred team approach; sustainability indicators to monitor, measure, and respond to needs for service design and delivery; education, research, and training for competent practice, using the six rehab-workforce challenges framework; and credentialing frameworks. We propose development of a competence framework and associated education and training programs, and development and implementation of a certification framework for AT personnel.

 

Conclusions: There is a resolve to address the challenges faced by People globally to access assistive technology. Context specific needs assessment is required to understand the AT Personnel landscape, to shape and strengthen credentialing frameworks through competencies and certification, acknowledging both general and specific skill mix requirements.

Target population’s requirements on a community-based intervention for stimulating physical activity in hard-to-reach physically disabled people: an interview study

KROPS, Leonie A
FOLKERTSMA, Nienke
HOLS, Doortje H J
GEERTZEN, Jan H B
DIJKSTRA, Pieter U
DEKKER, Rienk
May 2018

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Purpose: To explore ideas of the target population about a community-based intervention to stimulate physical activity in hard-to-reach physically disabled people.

 

Materials and methods: Semi-structured interviews were performed with 21 physically disabled people, and analyzed using thematic analyses. Findings were interpreted using the integrated Physical Activity for People with a Disability and Intervention Mapping model.

 

Results: The intervention should aim to stimulate intrinsic motivation and raise awareness for the health effects of physical activity. It should provide diverse activities, increase visibility of these activities, and improve image of physical activity for physically disabled people. Participants suggested to provide individual coaching sessions, increase marketing, present role models, and assign buddies. Potential users should be approached personally through intermediate organizations, or via social media and word of mouth promotion. Participants suggested that users, government, sponsors, and health insurers should finance the intervention. Self-responsibility for being physically active was strongly emphasized by participants.

 

Conclusions: An intervention to stimulate physical activity in hard-to-reach physically disabled people should be individualized, include personal support, and should include marketing to improve image of physical activity of physically disabled people. The intervention that fulfills these requirements should be developed and tested for effects in future research.

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