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Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

KALLESON, Runa
JAHNSEN, Reidun
ØSTENSJØ, Sigrid
2021

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Purpose: To explore participation in real-life activities during early childhood, compare children’s partici- pation based on motor function and investigate relationships between participation and parental empowerment.


Methods: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child partici- pation and parental empowerment.

 

Results: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.

 

Conclusions: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.

Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study

VON GRANITZ, Heléne
SONNANDER, Karin
REINE, Ieva
WINBLAD, Ulrika
2021

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Purpose: To explore whether the personal assistance (PA) activities provided by the Swedish Act concern- ing Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote par- ticipation in society according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD).

 

Methods: Register data and data from two questionnaires were used (N1⁄42565). Descriptive statistics and chi-square (McNemar’s test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015.

 

Results: Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older peo- ple, and for a particular person category.


Conclusions: The results offer evidence of a shift to a medical model and indicate a risk of social exclu- sion due to fewer activities representing an active life. An increase on average of 16h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD.

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.

Disability, stigma & the role of innovation - Disability innovation live

AUSTIN, Vicki
CAREW, Matthew
MIRZOYANTS, Anastasia
BARBARESCHI, Giulia
August 2020

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This webinar focussed on the role of stigma in preventing disability inclusion, and what enables it to be overcome, focused on innovative and creative methods

The speakers talked about:

  • Culture, Paralympic legacy & how innovation can change mindsets
  • Stigma research incorporating the perspectives of persons with disabilities & disability inclusive research processes
  • Kenyan youth & the perception of people with disabilities
  • Assistive technology, identity & the role of innovation

Learning Paper – Inclusive Sports for Development Project

NEUPANE, Sudarshan
JALAL, Faruk Ahmed
CHAKRABORTY, Ripon
Md. ISLAM, Shafiqul
PAUL, Ashok Kumar
Md. MUHIT, Mubdiul
April 2020

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Children with disabilities in Bangladesh have equal access to play, recreation and leisure, and sporting activities, including in the school system (contributing to enjoyment of article 30 5.d of UNCRPD).

Parental satisfaction with inclusion in physical education

WILHELMSEN, Terese
SØRENSEN, M. S
SEIPPEL, Ø
BLOCK, M. E
2019

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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.

‘When he’s up there he’s just happy and content’: Parents’ perceptions of therapeutic horseback riding

Boyd, Lauren
le ROUX, Marieanna
2017

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Background: There is limited global and South African research on parents’ perceptions of therapeutic horseback riding (THR), as well as their perceptions of the effect of the activity on their children with disabilities.


Objective: To explore and describe parents’ perceptions and experiences of THR as an activity for their children with disabilities.


Method: Twelve parents whose children attend THR lessons at the South African Riding for the Disabled Association in Cape Town were asked to participate in a semi-structured interview. The qualitative data obtained from the interviews were first transcribed and then analysed using thematic analysis to establish parents’ perceptions of the THR activity.


Results: The main themes that emerged included parental perceived effects of THR on children, parents’ personal experiences of the services, and parents’ perceived reasons for improvements in the children. The participating parents indicated that THR had had a positive psychological, social and physical effect both on the children participating in the riding, as well as on the parents themselves.


Conclusion: According to parents, THR plays an important role in the lives of children with various disabilities and in the lives of their parents. The results of the study address the gap in the literature regarding parents’ perceptions of THR.

How nursing home residents with dementia respond to the interactive art installation ‘VENSTER’: a pilot study

LUYTEN, Tom
BRAUN, Susy
JAMIN, Gaston
VAN HOOREN, Susan
DE WITTE, Luc
2017

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The goal of this study was (1) to determine whether and how nursing home residents with dementia respond to the interactive art installation in general and (2) to identify whether responses change when the content type and, therefore, the nature of the interaction with the artwork changes. The interactive art installation ‘VENSTER’ evokes responses in nursing home residents with dementia, illustrating the potential of interactive artworks in the nursing home environment. Frequently observed responses were naming, recognizing or asking questions about depicted content and how the installation worked, physically gesturing towards or tapping on the screen and tapping or singing along to the music. It seemed content matters a lot. When VENSTER is to be used in routine care, the choice of a type of content is critical to the intended experience/usage in practice. In this study, recognition seemed to trigger memory and (in most cases) a verbal reaction, while indistinctness led to asking for more information. When (initially) coached by a care provider, residents actively engaged physically with the screen. Responses differed between content types, which makes it important to further explore different types of content and content as an interface to provide meaningful experiences for nursing home residents.

Enabling education review, issue 4

ENABLING EDUCATION NETWORK
December 2015

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This newsletter contains a variety of articles about inclusive education in several countries around the world. The topics focus mostly on funding, managing and sustaining inclusive education; engaging and empowering beneficiaries in finding solutions; facilitating parental and child involvement and early childhood education

Enabling Education Review, issue 4

Fatigue and Functional Capacity in Persons with Post-Polio Syndrome: Short-term Effects of Exercise and Lifestyle Modification Compared to Lifestyle Modification Alone

SHARMA, S S
SHETH, M S
VYAS, N J
2014

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Purpose: Post-polio Syndrome (PPS) affects polio survivors many years after the initial attack, and causes new musculoskeletal symptoms and decline in physical function. This study aims to compare the effect of exercise and lifestyle modification versus lifestyle modification alone, on fatigue and functional capacity in persons with PPS.

 

Method: An experimental study was conducted at the physiotherapy department of VS Hospital in Ahmedabad. As per the criteria of Halstead (1985), 21 PPS subjects who were between 18 and 65 years of age, and able to walk indoors and outdoors, with or without assistive aids, were included. They were randomly allocated into 3 groups using the envelope method. Those with physician- diagnosed respiratory or cardiac insufficiency, disabling co-morbidity which interfered with the intervention programme or influenced the outcome, and those unable to cooperate due to cognitive impairment or use of any psychotropic drugs, were excluded. Fatigue and functional capacity were measured using Fatigue Severity Scale (FSS) and 2-minute walk distance, respectively. Physical and psychological functions were assessed using Patient Reported Outcome Measurement Information System (PROMIS) questionnaire and Patient Health Questionnaire (PHQ-9) respectively. Intervention was given for 5 days a week, over 4 weeks. Group A received exercise and lifestyle modification, group B received lifestyle modification alone and group C continued their usual routine for 1 month.

 

Results: There was a significant difference in fatigue and functional capacity within groups A and B, with group A showing better reduction in fatigue than groups B or C. Physical function improved only within group A, and a significant difference was seen compared to groups B and C. Psychological function showed no difference within or between the groups.

 

Conclusion: There was improvement in fatigue, functional capacity and physical function in PPS subjects after 4 weeks of exercise and lifestyle modification. Lifestyle modifications alone for 4 weeks improved fatigue and functional capacity in PPS subjects. There is significant reduction in fatigue and improvement in functional capacity when lifestyle modification advice is given along with exercise.

Oscar Pistorius and the melancholy of intersectionality

SWARTZ, Leslie
2013

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The alleged shooting by Paralympian and Olympian athlete Oscar Pistorius of his girlfriend Reeva Steenkamp has led to strong reactions worldwide. Scholars in the field of disability studies have expressed shock and disappointment in response both to the death itself and to its implications for the representation of disability. In South Africa in the wake of the death of Ms Steenkamp, much has been made both by critics of Pistorius and by his defenders about his status as a white South African man, but little has been said about disability issues. This silence in South Africa about disability as a possible identity factor in this case draws attention to the extent to which disability questions remain profoundly raced and gendered, and influenced by the colonial and apartheid past. The tragic alleged shooting by Oscar Pistorius draws attention back to how important intersectionality is to understanding disability in South Africa and other unequal societies.

Ways to get people thinking and acting : village theatre and puppet show [Chapter 27]

WERNER, D
BOWER, B
2012

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This chapter explores role playing, sociodramas, people’s theater, and puppet shows as forms of action-packed group story-telling for health workers. Each can be used to explore problems or situations by acting them out and learning processes are provided for both actors and watchers based upon participation and discovery
Chapter 27 of "Helping Health Workers Learn" by D. Warner and B. Bower

Community-based rehabilitation : CBR Guidelines|Social component

WORLD HEALTH ORGANIZATION (WHO)
et al
2010

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This component of the CBR Guidelines focuses on social component. It describes "the role of the CBR is to work with all relevant stakeholders to ensure the full participation of people with disabilities in the social life of their families and communities. CBR programmes can provide support and assistance to people with disabilities to enable them to access social opportunities, and can challenge stigma and discrimination to bring about positive social change." The guideline outlines key concepts, and then presents the core concepts, examples and areas of suggested activities in each of the following five elements: Personal Assistance; Relationships, marriage and family; Culture and arts; Recreation, leisure and sport; Justice. This guideline is useful for anyone interested in social component of CBR

Youth to youth|Disability-sensitive youth to youth : methodologies in HIV and AIDS

HANDICAP INTERNATIONAL KENYA
2010

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This video features HIV and AIDS prevention and education initiatives in Kenya. It particularly targets the youth population due to a lack of available information and risk behaviours, such as sexuality, drug use and alcohol use. In order to prevent risks and present treatment options for the youth who are AIDS-carriers, several youth groups organized the following activities to prevent and fight the disease: street theatre for awareness-raising, group education sessions, and promotion of VCT services for communication and information. This video contains several testimonies and one features Mercy, a young girl who has AIDS after working as prostitute to feed her two children and is now involved in a support group

Playgrounds for all children [Chapter 46]

WERNER, David
2009

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This chapter presents information about how to involve local people in building low-cost rehabilitation playgrounds that should be built for use by all children, both disabled and non-disabled. Examples of playgrounds and equipment are provided
Chapter 46 of "Disabled Village Children" by David Warner

Early child development kit : a treasure box of activities

UNITED NATIONS CHILDREN’S FUND (UNICEF)
2009

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"The Early Childhood Development Kit was created to strengthen the response for young children caught in conflict or emergencies. In complement to basic services related to young children's hygiene and sanitation, health and nutrition, protection and education, the Kit offers young children access to play, stimulation and early learning opportunities and permits them to retrieve a sense of normalcy"

Growing pains : how poverty and AIDS are challenging childhood

SWIFT, Anthony
MAHER, Stan
2008

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This report looks at projects and programmes that aim to respond to the needs of very young children in southern and eastern Africa whose lives have been affected by both poverty and HIV. What is highlighted in the interventions that are examined is the effort of human beings in caring and supporting people and sharing resources

Another way to learn : case studies

UNITED NATIONS EDUCATIONAL, SCIENTIFIC AND CULTURAL ORGANIZATION
2007

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These case studies come from an initiative that supports non-formal education projects in Africa, South Asia, the Caribbean and Latin America. The long-term goal of these projects is to develop sustainable livelihoods for low-income, low-literate populations by addressing vulnerability to HIV and AIDS and drug misuse, a lack of education and social exclusion. Central to all of these projects are the creative and innovative methods used to communicate in a meaningful way, engage people and encourage their participation. The projects all focus on capacity building, empowerment, and creating learning opportunities. A DVD has been produced to accompany this publication

Laugh, run, and move to develop together : games with a psychosocial aim

MEUWLY, Michèle
HEINIGER, Jean-Pierre
2007

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This manual was created following a project initiated by Terre des Hommes called "Movement, Games and Sport for children’s psychosocial development". The manual, a compilation of twenty games, provides a play tool which integrates the psychosocial approach and uses the phases of learning by experience

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