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A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

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This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

Perspectives on assistive technology among older Norwegian adults receiving community health services

HALVORSRUD, Liv
HOLTHE, Torhild
KARTERUD, Dag
THORSTENSEN, Erik
LUND, Anne
2021

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Introduction: The western world is seeking increased implementation of assistive technology (AT) to meet the challenges of an ageing population. The objective of this study is to explore perspectives on AT use among home-dwelling older adults with or without cognitive impairment.

 

Methods: This study combines findings from a cross-sectional study with a questionnaire package (n = 83) and from qualitative individual interviews (n = 7) and is part of a larger study, the Assisted Living Project. Combining methods promotes complementary inquiries into a phenomenon.

 

Results: The participants already use ATs: TVs, social alarms, mobile phones, stove timers, electronic med- ical dispensers, PCs and tablet computers. They were both optimistic and skeptical of AT, and expressed different perspectives and expressed different perspectives on ATs in relation to usability, privacy and fear of losing personal face-to-face care.

 

Conclusions: This study reveals that older adults’ perspectives on AT are multifaceted and complex, and can partly be explained by the interacting factors in the HAAT model: person, technology, environment, and context. Further exploration in relation to older adults with health challenges, as well as ethical per- spectives on AT implementation, is required for this group.

A high prevalence of manual wheelchair rear-wheel misalignment could be leading to increased risk of repetitive strain injuries

OTT, Joseph
HENDERSON, Travis
WILSON-JENE, Holly
KOONTZ, Alicia
PEARLMAN, Jonathan
2021

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Purpose: To determine the prevalence and severity of manual wheelchair rear wheel misalignment in community-dwelling manual wheelchair users and estimate the associated increases in rolling resistance (RR) and risk of repetitive strain injuries (RSIs).


Materials and Methods: Data were collected in an outpatient rehabilitation clinic, a university research laboratory, and at adaptive sporting events in the United States. Two hundred active, self-propelling man- ual wheelchair users were recruited. Angular misalignment (referred to as toe angle) while the wheelchair was loaded with the user, and the difference between the maximum and minimum toe angle (referred to as slop) with the wheelchair unloaded.

 

Results: Average results for toe angle and slop (movement in the rear wheels) were 0.92 and 0.61 degrees, respectively. Using a lab-based testing method, we quantified the impact of increased RR forces due to misalignment in increased RR forces. Our results indicate that the average toe angle while under load and slop, without loading, measured in the community increase required propulsion force by 3.0 N. Combined toe angle and slop (i.e., the worst-case scenario) added increased propulsion force by 3.9 N. Conclusions: We found that rear-wheel misalignment was prevalent and severe enough that it may increase the risk for RSIs and decrease participation. To mitigate this issue, future work should focus on reducing misalignment through improved maintenance interventions and increased manufacturing qual- ity through more stringent standards.

Patients’ and communication partners’ experiences of communicative changes in Parkinson’s disease

JOHANSSON, Inga-Lena
SAMUELSSON, Christina
MULLER, Nicole
February 2021

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Purpose: The aim of the present study was to investigate the experiences of people with Parkinson’s disease and their close communication partners regarding disease-related communicative changes and participation in everyday conversations.

 

Materials and methods: Semi-structured qualitative interviews were conducted with six dyads consisting of a person with Parkinson’s disease and a close communication partner. The interview material was analysed through thematic analysis.

 

Results: The main theme was the experiences of barriers and facilitators for participation in conversations. Subthemes were experiences related to changes in voice and articulation, language and cognition, body language and facial expressions, fatigue, self-image, communicative initiative, and familiarity with conversation partner. The results show individual variation. A change observed in almost all dyads was the person with Parkinson’s disease participating less in conversations.

 

Conclusions: Assessment and interventions should be based on a broad perspective on communication, and individuals’ priorities should be foregrounded in intervention planning. Both the person with Parkinson’s disease and communication partners need to make adjustments for communication to work. Therefore, close communication partners should be included in assessment and intervention of communication in Parkinson’s disease from an early stage.

Validation of the international classification of functioning, disability and health (ICF) core sets from 2001 to 2019 – a scoping review

KARLSSON, Elin
GUSTAFSSON, Johanna
February 2021

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Objective: To investigate and summarize the literature on the validation of International classification of functioning, disability and health (ICF) core sets from 2001 to 2019 and explore what research methods have been used when validating ICF core sets.

 

Methods: The current study is a scoping review using a structured literature search.

 

Results: In total, 66 scientific articles were included, of which 23 ICF core sets were validated. Most validation studies were conducted in Europe using a quantitative methodology and were validated from the perspective of patients. Analysis methods differed considerably between the studies, and most ICF core sets were validated only once for a single target population or from a single perspective. The comprehensive core sets were validated more often than the brief core sets, and core sets for stroke and low back pain were validated most often.

 

Conclusion: The results of the current study show that only 66% of the existing ICF core sets are validated. Many of the validation studies are conducted in a European context and from a single perspective. More validation studies of ICF core sets from the perspective of both patients and professionals are needed.

Bullying among primary school-aged students: which factors could strengthen their tendency towards resilience?

GANOTZ, Tanja
SCHWAB, Susanne
LEHOFER, Mike
2021

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Resilience is the capacity to cope successfully with various threats. This paper aims to adapt the Resilience-Scale of Schumacher et al. (2004. Die Resilienzskala – ein Fragebogen zur Erfassung der psychischen Widerstandsfähigkeit als Personmerkmal. [The Resilience Scale – A Questionnaire to Measure Mental Resilience as a Personal Characteristic]. Zentrum für Klinische Psychologie, Psychiatrie und Psychotherapie) to measure the tendency of being resilient even before a threat occurs. Since primary school students are exposed to various threats at school, 535 4th grade students of Austrian primary schools were surveyed for the study. The reliability of the short-scale was found to be acceptable (Cronbach’s α = .66), and the tendency towards resilience can be explained by the students’ perception of their social inclusion in class (F (1,252) = 15.11, p<.05) and the relationship with their mothers (F (2, 251) = 10, 02, p<.05). The stability of the students’ tendency of being resilient was only moderate. A similar correlation between resilience and school-wellbeing for victims and non-victims of bullying can be reported. Future studies should focus more on primary school students’ resilience and related protective factors.

“It’s not a simple answer.” A qualitative studyto explore how healthcare providers can bestsupport families with a child with autism spectrumdisorder and overweight or obesity

MCPHERSON, Amy C
PEREZ, Arnaldo
BUCHHOLZ, Annick
FORHAN, Mary
BALL, Geoff D C
January 2021

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Purpose: This qualitative study aimed to explore the experiences of parents supporting their child with Autism Spectrum Disorder (ASD) and overweight or obesity (OW/OB), including their weight management support needs.

 

Methods: Interview transcripts were analysed using inductive thematic analysis. Nine parents (n = 9 mothers) of ten children with ASD (7 males, 3 females) participated in individual semi-structured interviews.

 

Results: The three themes developed were: (1) Our journey to obtain weight management support; (2) I need real-world solutions; and (3) The what, who and how of our weight management needs. Parents reported being proactive in seeking weight management support for their child but were disappointed with the services offered. Resources were not tailored to the child’s complex nutrition and behavioural issues or their abilities and functioning. A multidisciplinary approach that integrated both disability and weight management expertise was desired, but not experienced. A range of formal and informal programs were recommended.

 

Conclusion: This study provides a call to action for supports that ensure children with ASD and OW/OB receive integrated, individualised support to maximise their health and wellness.

Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

HUANG, Mei-Zen
CHEN, Li-Li
HUNG, Shu-Ling
PUTHUSSERY, Shuby
2020

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People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.

A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic

LEE, Seungbok
KIM, Jongbae
2020

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The South Korean media boasts of its leading success–during the escalation of the coronavirus outbreak–in flattening of the curve thereby mitigating the grave outcomes of the public health crisis. Much of the success is reportedly attributed to the rapid and advanced development of test kits, essential equipment and implementation of protocols in precautionary measures. However, it has been an arduous task to stay afloat for one particular vulnerable community. The disabled citizens of Korea were confronted by the realities of health inequity during this disastrous period. Pre-existing the pandemic onset, the disabled community have faced stigmatization and under many circumstances de-prioritization by their own society. Through the lense of a visiting physician, my hope is to poignantly and respectfully share personal experiences and thoughts on these realties impacted by the COVID-19 pandemic in South Korea.

Employment of young people with mental health conditions: making it work

SUBRAMANIAM, Mythily
ZHANG, Yunjue
SHAHWAN, Shazana
VAINGANKAR, Janhavi Aijt
SATGHARE, Patrika
LIN TEH, Wen
ROYSTONN, Kumarasan
MING JANRIUS GOH, Chong
MANIAM, Yogeswary
LIANG TAN, Zhuan
TAY, Benjamin
VERMA, Swapna
ANN CHONG, Siow
2020

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Purpose: The current study was undertaken to understand and describe the meaning of work as well as the barriers and facilitators perceived by young people with mental health conditions for gaining and maintaining employment.


Materials and Methods: Employing a purposive and maximum variation sampling, 30 young people were recruited and interviewed. The respondents were Singapore residents with a mean age of 26.8 years (SD 1⁄4 4.5, range 20–34years); the majority were males (56.7%), of Chinese ethnicity (63.3%), and employed (73.3%), at the time of the interview. Verbatim transcripts were analysed using inductive the- matic analysis.

 

Results: Three global themes emerged from the analyses of the narratives, which included (i) the mean- ing of employment, (ii) barriers to employment comprising individual, interpersonal and systemic difficul- ties and challenges participants faced while seeking and sustaining employment and (iii) facilitators of employment that consisted of individual and interpersonal factors that had helped the young persons to gain and maintain employment.

 

Conclusions: Stigma and discrimination emerged as one of the most frequently mentioned employment barriers. These barriers are not insurmountable and can be overcome both through legislation as well as through the training and support of young people with mental health conditions.

Barriers to accessing primary healthcare services for people with disabilities in low and middle-income countries, a Meta-synthesis of qualitative studies

HASHEMI, Goli
WICKENDEN, Mary
BRIGHT, Tess
KUPER, Hannah
2020

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Background: Access to healthcare contributes to the attainment of health and is a fundamental human right. People with disabilities are believed to experience widespread poor access to healthcare services, due to inaccessible environments and discriminatory belief systems and attitudes. Qualitative data on these bar- riers has not previously been systematically reviewed. A meta-synthesis was undertaken of qualitative studies exploring the barriers to primary healthcare services experienced by people with disabilities in low- and mid- dle-income countries.

 

Methods: Six electronic databases were searched for relevant studies from 2000 to 2019. Forty-one eli- gible studies were identified.

 

Results: Findings suggest that the people with disabilities’ choice to seek healthcare services or not, as well as the quality of intervention provided by primary healthcare providers, are influenced by three types of barriers: cultural beliefs or attitudinal barriers, informational barriers, and practical or logis- tical barriers.

 

Conclusion: In order to achieve full health coverage at acceptable quality for people with disabilities, it is necessary not only to consider the different barriers, but also their combined effect on people with dis- abilities and their households. It is only then that more nuanced and effective interventions to improve access to primary healthcare, systematically addressing barriers, can be designed and implemented.

Implementing music therapy through telehealth: considerations for military populations

VAUDREUIL, Rebecca
LANGSTON, Diane G
MAGEE, Wendy L
BETTS, Donna
KASS, Sara
LEVY, Charles
2020

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Purpose

Telehealth provides psychotherapeutic interventions and psychoeducation for remote populations with limited access to in-person behavioural health and/or rehabilitation treatment. The United States Department of Défense and the Veterans Health Administration use telehealth to deliver primary care, medication management, and services including physical, occupational, and speech-language therapies for service members, veterans, and eligible dependents. While creative arts therapies are included in telehealth programming, the existing evidence base focuses on art therapy and dance/movement therapy, with a paucity of information on music therapy.

 

Methods

Discussion of didactic and applied music experiences, clinical, ethical, and technological considerations, and research pertaining to music therapy telehealth addresses this gap through presentation of three case examples. These programmes highlight music therapy telehealth with military-connected populations on a continuum of clinical and community engagement: 1) collaboration between Berklee College of Music in Boston, MA and the Acoke Rural Development Initiative in Lira, Uganda; 2) the Semper Sound Cyber Health programme in San Diego, CA; and 3) the integration of music therapy telehealth into Creative Forces®, an initiative of the National Endowment for the Arts.

 

Results

These examples illustrate that participants were found to positively respond to music therapy and community music engagement through telehealth, and reported decrease in pain, anxiety, and depression; they endorsed that telehealth was not a deterrent to continued music engagement, requested continued music therapy telehealth sessions, and recommended it to their peers.

 

Conclusions

Knowledge gaps and evolving models of creative arts therapies telehealth for military-connected populations are elucidated, with emphasis on clinical and ethical considerations.

Practicing in a person-centred environment – self-help groups in psycho-social rehabilitation

LANDSTAND, Bodil J
HEDLUNDl, Marianne
KENDALL, Elizabeth
2020

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Aim: The increasing prevalence of chronic conditions and impairments in the population is putting new demands on health and rehabilitation services. Research on self-help groups suggest that participation in these groups might have a positive impact on people who are struggling with chronic illnesses or disabil- ities. In this study, we explore person-centred support in which participants in self-help groups are under- going rehabilitation to develop their knowledge, skills and confidence necessary to handle life’s challenges.

 

Method: The design is exploratory, analysing data from informant interviews and focus groups (a total of 32 participants) using a Grounded Theory inspired approach to analyse. The participants were rehabilita- tion clients aged between 20 and 60 years; eight were men and twenty-six were women.

 

Results: Three main categories emerged as being important self-help processes that were likely to pro- mote positive rehabilitation outcomes: (1) Learning and practicing safely, (2) A refuge from expectations, (3) Internal processes that accentuate the positives.

 

Conclusion: Peer support delivered through the structured self-help environment can facilitate the devel- opment of new self-awareness, promote acceptance and adjustment, facilitate the establishment of new skills and enable transfer of learning to new environments, including the workplace.

Measuring treatment outcome in children with developmental coordination disorder; responsiveness of six outcome measures

HEUS, Inge
WEEZENBERG, Daphne
SEVERIJEN, Sebastiaam
VLIELAND, Thea Vliet
VAN DER HOLST, Menno
July 2020

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Purpose: Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important attribute of a measurement instrument would be that it is sensitive to clinical changes. The aim of this prospective, observational study was therefore to investigate the responsiveness of six potentially suitable instruments.

 

Methods: Forty-one children (34 boys, median age 7.8 years, Inter Quartile Range: 7.2–9.2) receiving multidisciplinary rehabilitation treatment for Developmental Coordination Disorder were included (mean treatment time: 32.8 h, Standard Deviation 7.3). The following instruments were applied before and after rehabilitation: Movement-Assessment-Battery-Children-2 (MABC-2), Canadian Occupational Performance Measure (COPM), Systematic detection writing problems (SOS-2-NL), DCD-daily, Behaviour Rating Inventory of Executive Function (BRIEF), and TNO-AZL children’s Quality of Life questionnaire (TACQOL)). Change-scores (paired t-test/Wilcoxon-test) and responsiveness (Effect-sizes and Standardized-Response-Means) were calculated.

 

Results: Significant differences over time were found for the Canadian Occupational Performance Measure, DCDdaily and Movement-Asessment-Battery-Children-2 (p < 0.05). The responsiveness of these instruments was moderate-high (Canadian Occupational Performance Measure-performance Effect-Size:1.70/Standardized-Response-Mean:1.81, Canadian Occupational Performance Measure-satisfaction Effect-Size:1.65/Standardized-Response-Mean 1.53; DCDdaily-total-score Effect-Size:0.40/Standardized-Response-Mean:0.62, DCDdaily-Quality-score Effect-Size:0.74/Standardized-Response-Mean:0.89, DCDdaily-time-score Effect-Size:0.21/Standardized-Response-Mean:0.43; MABC-2-total-score Effect-Size:0.42/Standardized-Response-Mean:0.43, MABC-2-Ball-skills-score Effect-Size:0.33/Standardized-Response-Mean:0.36). Systematic detection of writing problems (SOS-2-NL), Behaviour Rating Inventory of Executive Function (BRIEF) and TNO-AZL children’s Quality of Life questionnaire (TACQOL) were not responsive to change.

 

Conclusion: Although the Movement-Assessment-Battery-Children-2 test is the most widely used instrument when measuring rehabilitation outcome in Developmental Coordination Disorder, the Canadian Occupational Performance Measure and DCDdaily seem to be more responsive and constitute a valuable addition.

Factors of importance for return to work, experienced by patients with chronic pain that have completed a multimodal rehabilitation program – a focus group study

SVANHOLM, Frida
LIEDBERG, Gunilla Margareta
LÖFGREN, Monika
BJÖRK, Mathilda
2020

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BACKGROUND AND PURPOSE: To reduce the individual, societal, and economic burden of the high sick leave rates due to chronic pain, it is essential to find effective strategies for increasing return to work (RTW). Although multimodal rehabilitation programs (MMRPs) may have positive effects on RTW, the results are inconsistent. This study explores the factors that contribute to decreasing sick leave and increasing RTW in patients with chronic pain who completed a MMRP.

 

METHOD: Four focus groups and three individual interviews were conducted. In total, 18 patients were interviewed. All patients had chronic pain and had completed a MMRP. They were either employed or unemployed, either working to some degree or fully on sick leave. The data were analysed using qualitative content analysis.

 

RESULTS: Three main categories were identified: Knowledge and understanding–prerequisites for tailored solutions; Individual adaptations–necessary but difficult to implement; and Stakeholder collaboration–needs improvement.

 

CONCLUSION: The participants described a variety of facilitating and limiting factors that created complex prerequisites for RTW. This finding makes it clear that these patients need tailored interventions and strong collaboration among all stakeholders throughout the rehabilitation process. Tailored interventions and collaborations could improve the effectiveness of MMRPs.

Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call

HULST, Raquel Y
VOORMAN, Jeanine M
PILLEN, Sigrid
KETELAAR. Marjolijn
VISSER-MEILY Johanna M A
VERSCHUREN, Olaf
June 2020

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Purpose: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1–8 years) with CP.

 

Materials and methods: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs.

 

Results: In total, sixteen themes were identified across the three domains. Within the families’ Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep.

 

Conclusions: Parents face numerous challenges caring for their child’s sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.

Family experiences up to seven years after a severe traumatic brain injury–family interviews

STENBERG, Maud
STALNACKE, Britt-Marie
SAVEMAN, Britt-Inger
June 2020

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Purpose: To explore the experiences of being a family with one member suffering from severe traumatic brain injury (STBI) up to 7 years earlier through narrative family interviews.

 

Methods: There are few studies where a family as a unit, including persons with STBI, are interviewed together. This study used a family systems research approach following a qualitative interpretative design. Therefore, 21 families with a total of 47 family members were interviewed. Qualitative content analysis was used to reveal categories with sub-categories and a theme.

 

Results: “From surviving STBI towards stability, through the unknown, into a new everyday life and a new future as a family” characterized the implicit message. The results revealed two categories both with three subcategories. The first category characterized the rapid change from a normal everyday life to one of uncertainty and finally to one of stability, and the second category described how it is to adapt as a family after STBI.

 

Conclusions: Long-term experiences of STBI show the importance for the whole family of belonging to a context, having a job, and having something to belong to as a way to achieve stability. Families` feelings of loneliness and lack of treatment and support are challenges for professionals when trying to involve families in care and rehabilitation.

Access to basic needs and health care for Malawian prosthetic and orthotic users with lower limb physical disabilities: a cross-sectional study

MAGNUSSON, Lina
FINYE, Clifford
ENSTEDT, Catrin
May 2020

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The aim of this study was to investigate access for Malawian prosthetic and orthotic users with lower limb disabilities to basic human rights such as health and a standard of living adequate for health, education, work, marrying and establishing a family, and voting. A further aim was to investigate differences among subgroups based on gender, level of income, and residential location.

A cross-sectional design and a questionnaire were used to collect data from 83 participants.

 

Disability and Rehabilitation

https://doi.org/10.1080/09638288.2020.1752316

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