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Integrated Emotion-Oriented Care for Older People With ID: Defining and Understanding Intervention Components of a Person-Centered Approach

THALEN, Marloes
VAN OORSOUW, Wietske M W J
VOLKERS, Karin M
TAMINIAU, Elsbeth F
EMBREGTS, Petri J C M
2021

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An increase in descriptive evidence regarding person-centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well-being and quality of life. A specific Dutch example is the Integrated Emotion-Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in-depth understanding of the use of these components in the day-to-day support of older people with ID. A content analysis of five key documents was carried out. Five semi-structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus-group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion-Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion-Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed.

Depression and Anxiety Symptoms in UK Thalidomide Survivors: A Brief Survey

NEWBRONNER, Elizabeth
WADMAN, Ruth
2021

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Between 1958 and 1961, the drug Thalidomide was prescribed in the UK as a treatment for morning sickness. It caused severe birth defects. Thalidomide survivors are now experiencing a range of secondary health problems, including depression and anxiety. Internationally, it is estimated that 40% to 50% of Thalidomide survivors have recently experienced common mental health problems. The aim of this study was to gather information about the pattern of symptoms of depression and anxiety amongst UK Thalidomide survivors. A cross-sectional postal survey of 182 UK Thalidomide survivors, which used Patient Health Questionnaire (PHQ-9) and General Anxiety Disorder Scale (GAD-7) to measure self-reported depression and anxiety, was conducted. Data were first analysed using descriptive statistics. A point-biserial correlation was used to examine whether being unable to work was associated with higher depression and anxiety scores. Prevalence of all levels of depression and anxiety was higher amongst the Thalidomide survivors than the general UK population but broadly similar to other groups of adults with disabling conditions. Being unable to work was associated with higher depression and anxiety scores. More research is needed to understand the relationship between early acquired physical disability and depression, in particular the implications, over the life course, of secondary health problems and changing social roles.

Insisting on inclusion: Institutionalisation and barriers to education for children with disabilities in Kyrgyzstan

MILLS, Laura
December 2020

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Since 2012, the Kyrgyz government has pledged to close 17 residential institutions for children, including three for children with disabilities. But 3,000 children with disabilities remain in institutions.

This report is based on in-person visits to six institutions for children with disabilities and 111 interviews with children with disabilities, their parents, institution staff, and experts in four regions of Kyrgyzstan. It describes abuses in state care as well as barriers to education that often lead to a child’s segregation in a residential institution or special school, or their isolation at home.

 

 

Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol

KAMALAKANNAN, Sureshkumar
RUSHTON, Paula W
GIESBRECHT, Ed
RUSAW, David F
BOUZIANE, Selsabil-A
NADEAU, Melodie
MCKEE, Jennifer
GOWRAN, Rosemary J
KIRBY, R L
PEDERSEN, Jessica P
TASIEMSKI, Tomasz
BURROLA-MENDEZ, Yohali
TOFANIN, Marco
GOLDBERG, Mary
PEARLMAN, Jon
2020

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Purpose

Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.

 

Methods

This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.

 

Implications and dissemination

The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.

Effectiveness of Community-Based Rehabilitation on the lives of Parents of Children with Cerebral Palsy: A Mixed Method Study in Karnataka, India

Bokalial, Doly
Hossain, Forhad Md
Kumar, Senthil N S
Bajracharya, Shristi
2020

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Purpose: The study aimed to identify the effects of the CBR programme on parents of children with Cerebral Palsy, living in Karnataka State, India. It also tried to find the challenges and improvements needed to make the CBR programme more effective.

 

Method: A cross-sectional, descriptive study design was used to collect a sample of 100 parents of children with Cerebral Palsy, with GMFCS levels IV and V. The sample was drawn from various communities in Bangalore, Davanagere and Bijapur, where the services of The Association of People with Disability are available. Face-to-face interviews were conducted with the study subjects. Data was analysed by SPSS using descriptive and inferential statistics.

 

Results: It was observed that the CBR programme had a positive effect on parents’ health, knowledge, social lives and empowerment. A binary logistic regression was done to find the relationship between health, knowledge, social lives and assistive devices use. A strong association was found between all the areas (p=.001) except GMFCS and assistive devices use (p=.004) at 95% CI. The odds ratios between them were greater than 1 and showed the strong positive effect of the CBR programme on parents.

 

Conclusion: The CBR programme not only has a positive effect on children with Cerebral Palsy, but also plays an important role in parents’ lives. It contributes in a positive way to parents’ overall activity.

People with Physical Disabilities playing Light Volleyball: A Qualitative Study in Hong Kong

Leung, Ka Man
Chu, William
Wong, Ming-Yu
2020

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Purpose: This study aimed at understanding the perceptions of people with physical disabilities regarding playing Light Volleyball (LVB), identifying the possible constraints and risks they might face while playing, and providing their suggestions for fine-tuning the Light Volleyball intervention programmes.

 

Method: Four focus group interviews were conducted with 17 participants who joined the Light Volleyball trial programme. The participants were 11 males and 6 females, with an average age of 53.5 years (SD=11.83 years). People with poliomyelitis (n = 15), spinal cord injury (n = 1), hearing impairment (n = 1) were included.

 

Results: Participants indicated improved reactivity and coordination, cooperation in team, happiness, and novelty in general as positive outcomes while playing Light Volleyball. They preferred to play in the seated position (i.e., sitting light volleyball - SLVB), and with simpler rules. They believed that their ability to play Light Volleyball was subject to their body constraints.

 

Conclusion: Sitting Light Volleyball can be one of the new physical activity options for future sport promotion among people with physical disabilities in the community. The effectiveness of playing Sitting Light Volleyball in enhancing health among people with physical disabilities needs to be studied in future.

Preliminary experiences in acute occupational therapy for in-patients with coronavirus-19 (COVID-19): leveraging assistive technology in three case studies of male veterans

RICH, Tonya
HICKS, Brandon
DAHL, Abigail
SULLIVAN, Elle
BARRETT, Benjamin
BEDORE, Beau
2020

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Purpose:

Coronavirus 2019 (COVID-19) was first identified in December 2019 with millions of cases reported globally in the succeeding months. Initial hospitalisation strives to minimise multisystem organ failure and of those that survive, individuals can present with profound rehabilitation needs. The purpose of this case series is to describe occupational therapy (OT) and special technology considerations for three male Veteran patients hospitalised with suspected or confirmed COVID-19. 

 

Methods: 

This is a descriptive case series using a retrospective electronic health record review at a Veterans Administration hospital. The case series includes three male Veterans with confirmed or suspected COVID-19 (ages 69–78) who were referred to OT. The cases were selected to demonstrate the novel use of technology and strategies to reduce the risk of transmission. In two of three of our cases, we describe acute rehabilitation with a focus on activity tolerance, participation in occupations, and discharge planning. In all cases, we measured vital signs and activity tolerance as primary outcomes. 

 

Results and conclusions: 

The findings suggest that outcome measures focussing on activity tolerance to maintain stable vital signs during the recovery phase is central to the progression of activities. We observed in our cases that the Person-Environment-Occupation-Performance (PEOP) model can guide practice and complement the medical model in management of these patients. We utilised technology to engage family members in the rehabilitation care and minimise exposure risks.

Independent Living Survey

EUROPEAN NETWORK ON INDEPENDENT LIVING (ENIL)
December 2020

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The summary report of the first results of ENIL’s Independent Living Survey. The aim of the online survey was to collect general information about access to Independent Living of disabled people across Europe, and detailed information about Personal Assistance schemes or systems.

Accessibility GO! A Guide to Action, Delivering on 7 accessibility commitments

AL JUBEH, Kathy
DARD, Benjamin
ZAYED, Yana
November 2020

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The World Blind Union (WBU) and CBM Global Disability Inclusion have developed Accessibility GO! A Guide to Action. The guide provides practical support on how to deliver a wholistic organisational approach towards accessibility. It describes how to progressively achieve seven core accessibility commitments across built environments, information and communications, procurement of goods and services, training and capacity development, programmes, meetings and events, recruitment, and human resource (HR) management. The guide offers pathways to progressively realise accessibility in various contexts and organisations; recognising that users of the guide will be diverse.

Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

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Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

Moral distress and ethical decision-making of eldercare professionals involved in digital service transformation

FRENNERT, Susanne
2020

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Aim

Technology affects almost all aspects of modern eldercare. Ensuring ethical decision-making is essential as eldercare becomes more digital; each decision affects a patient’s life, self-esteem, health and wellness.

 

Methods

We conducted a survey and interviews with eldercare professionals to better understand the behavioural ethics and decision making involved in the digital transition of eldercare.

 

Conclusion

Our qualitative analysis showed three recurrent roles among eldercare professionals in regard to digital service transformation; makers, implementers and maintainers. All three encountered challenging and stressful ethical dilemmas due to uncertainty and a lack of control. The matter of power relations, the attempts to standardize digital solutions and the conflict between cost efficiency and if digital care solutions add value for patients, all caused moral dilemmas for eldercare professionals. The findings suggest a need for organizational infrastructure that promotes ethical conduct and behaviour, ethics training and access to related resources.

The case for investing in assistive technology

ATscale
November 2020

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In this new report, ATscale describes the enormous gains that access to assistive technology (AT) can have in health, for the community and the economy. The figures are dramatic: investment in the provision of four assistive products - hearing aids, prostheses, eyeglasses, and wheelchairs - will result in a return on investment of 9:1.

Having access to AT can make the difference between failure or success in school, between a job or unemployment, between a life of opportunity or a life of dependency. An example: for a child in a low- or middle-income country, access to AT can make a difference of $100,000 in lifetime income.

Altogether, providing AT to all who need it would yield more than USD 10 trillion in economic benefits over the next 55 years.

Investing in AT both has a transformative impact on people’s wellbeing and makes sound economic sense for funders and governments. 

Increasingly consulted, but not yet participating: IDA global survey report on participation of Organisations of Persons with Disabilities

INTERNATIONAL DISABILITY ALLIANCE (IDA)
November 2020

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This new report presents the findings of the first-ever global survey led by OPDs on their participation in decision making processes of governments, the UN system and funding agencies.

The IDA Global Survey is part of a strategy to hold decision-makers accountable for their commitments under Articles 4.3 and 32 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Based on testimonies collected from OPDs in 165 counties, the report assesses the quality, depth, scope and relevance of the OPDs participation in programmes and policies, and offers recommendations for governments, the UN system and funding agencies.

Unheard children. Championing deaf children’s rights to family, community, education and independence in developing countries

DEAF CHILDREN WORLDWIDE
November 2020

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This report highlights the specific barriers facing deaf children and young people and demonstrates a number of smallscale approaches and initiatives that have succeeded in breaking down some of these barriers.

Topics are:

  • Language and communication. Early diagnosis and support (example from Bangladesh). Effective and affordable hearing technology. Communication choices. What is sign language? Tanzanian Sign Language – the need for more interpreters
  • Families. Early diagnosis and support. Upskilling parents and primary caregivers. Power to the parents (example from Uganda). Catalyst for change (example from India). 
  • Communities. Deaf role models (example from Bangladesh). Challenging the public and professionals. Educating the police force (example from India). Sharing knowledge across organisations
  • Education. Intensive communication. Extra help in the classroom (example from Kenya). Making secondary education accessible. Developing sign language skills. Inclusive further and higher education
  • Independence. Listening to deaf young people. Involving deaf young people in research. Support to make informed choices. Challenging perceptions in the workplace (example from Kenya)

 

 

Life Accomplishment, Social Functioning and Participation of South-Eastern Nigerians with Lower Limb Amputation

Akosile, Olusanjo Christopher
Okonkwo, Arinze Christian
Maruf, Adesina Fatai
Okoye, Chiebuka Emmanuel
2020

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Purpose: For a better understanding of the possible impact of impairments and disabilities on the life of individuals with lower limb amputation,it is important to explore the levels of Life Accomplishment (LA), Social Functioning and Participation (SFP) among them.The present study, set in South-Eastern Nigeria, aimed to study these levels and the influence of selected clinical and demographic variables on these constructs.

 

Method: This cross-sectional survey involved 60 individuals with lower limb amputation (46 unilateral, 14 bilateral) recruited from all the five South-Eastern Nigerian States. The Social Functioning Questionnaire (SFQ), Participation Scale and Life Habit Questionnaire were used for measuring levels of social functioning, social participation and life accomplishment, respectively. Data was analysed using descriptive statistics of frequency count, percentages, mean and standard deviation. Mann-Whitney U and Kruskal-Wallis tests were used to test the hypotheses. Alpha level was set at 0.05.

 

Results: Most of the participants (51.7%-58.3%) had low levels of social functioning across SFQ domains. Most of them (61.7%) had severe participation restrictions, and they all had reduced life accomplishments. Participants with bilateral amputation had poorer levels of social functioning (P<0.0001), participation restriction (P<0.0001), and life habits accomplishment (P<0.0001) than their counterparts with unilateral amputation. Individuals with below-knee amputation had significantly better levels of social functioning (P<0.0001) and participation (P<0.0001) than those with above-knee amputation. Participants with prosthetic mobility aids had significantly better levels of social functioning (P<0.0001) and participation (P<0.0001) than those with no prosthetic mobility aids. There was no significant difference in the levels of social functioning and participation between male and female participants, but female participants had statistically significant (P<0.0001) higher scores in nine out of twelve life habit domains than their male counterparts.

 

Conclusion and Implications: Low social functioning, severe participation restrictions, and reduced life accomplishments were prevalent among individuals with lower limb amputation, particularly amongthose with bilateral and above- knee amputations. There is a need to routinely evaluate the studied constructs among individuals with lower limb amputation. The provision of prosthetic aids may help to improve their levels of life accomplishment, social functioning and participation.

Effects of Biofeedback and Task-Oriented Intervention on Balance Confidence and its Relationship with Social Participation among Stroke Survivors

Pachiappan, Elumalai
2020

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Purpose: The study aimed to compare the effects of balance training on balance confidence and its relationship with social participation among clients with stroke.

 

Method: A pre- and post- experimental group design was used. Stroke survivors who met the inclusion criteria were consecutively assigned to two groups (task- oriented and biofeedback). Participants in the task-oriented group received task- oriented activities for 20 minutes and the biofeedback group received intervention in correckta (equipment used for balance training) for 20 minutes, along with conventional occupational therapy - 5 sessions per week, for 12 weeks. Balance Confidence Scale was used for measuring balance confidence, and Frenchay Activities Index (FAI) was used to measure social participation. Statistical calculations were performed with SPSS version 16.0 package. Statistical tests were carried out with the level of significance set at p≤ 0.05.

 

Results: The findings suggest that both the biofeedback and task-oriented groups showed significant improvement in balance confidence and there was no statistically significant difference between the groups. There was a moderate to good relationship between balance confidence and social participation.

 

Conclusions and Implications: There is evidence that many stroke survivors have low balance confidence. Therapists should assess the balance confidence of their clients and encourage them to participate in these beneficial interventions.

Self-reported barriers to activities of daily living of persons with disabilities living in IDP sites in northwest Syria

UNHCR INCLUSION TECHNICAL WORKING GROUP, SYRIA PROTECTION CLUSTER (TURKEY)
November 2020

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This brief aims to describe the lived experience of persons with disabilities in northwest Syria and highlight needs and key barriers to engagement in personal, domestic and community-based activities of daily living, which includes access to and engagement with humanitarian organisations. The analysis of these difficulties forms the basis of key pragmatic recommendations for humanitarian actors

Excluded from the Excluded: People with Intellectual Disabilities in (and out of) Official Development Assistance

Inclusion International
2020

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This report from Inclusion International analyzes data available through the Organization for Economic Cooperation and Development (OECD) Development Assistance Committee (DAC)’s Creditor Reporting System (CRS), which reveals that mainstream development projects fail to include people with intellectual disabilities, and in many cases use project methodologies that promote segregation and other human rights violations.

 

Analysis of ODA data from 2014 to 2018 found that 99.98% of ODA funding did not include people with intellectual disabilities, that 36% of the ODA projects that did include people with intellectual disabilities were not CRPD-compliant, and that only 2% of aid relevant to people with intellectual disabilities and their families was delivered through OPDs.

 

This report urges action from donors to ensure that the commitment to disability-inclusive development under Article 32 of the CRPD is also fulfilled for people with intellectual disabilities, and sets out recommendations for funders to ensure CRPD-compliance and inclusion in the projects they support.

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