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Participation and engagement in family activities among girls and young women with Rett syndrome living at home with their parents – a cross-sectional study

KRUSE GYLDHOF, Ditte
STAHLHUT, Michelle
EJLERSEN WAEHRENS, Eva
February 2021

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Purpose: To describe the extent of participation and engagement in family activities and explore variables potentially impacting on these factors in family activities among girls and young women with Rett syndrome (RTT) under the age of 21.

 

Materials and methods: The Child Participation in Family Activities (Child-PFA) questionnaire was sent to parents in the target group (n = 42). Additionally, age, number of siblings at home, ambulation level, clinical severity and level of hand function were recorded to explore possible impact. Data were analyzed using descriptive statistics, Fishers exact test and cross-tables.

 

Results: 23 families participated. Highest degrees of participation and engagement were seen in social and stationary family activities. Indoor activities were frequent and showed high levels of participation and engagement, Outdoor activities were infrequent and showed low levels of participation despite a high degree of engagement. Routine activities were frequent but showed moderate to low participation and engagement. A negative association was found between participation in watching a movie and number of siblings living at home, and positive associations between engagement and age in three family activities.

 

Conclusion: Therapists working with this target group may benefit from focusing on engagement in routine activities and modification of family activities.

Empowering Women with Disabilities : moving from charity to right based model

Humanity & Inclusion
2020

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HI Pakistan has recently completed a UN Women funded project ”Empowering women with disabilities (EWwD)” focusing on the social and economic empowerment of the women with disabilities. The project was implemented at Islamabad capital territory (ICT), Peshawar, Nowshera and Karachi. This project has directly benefited more than 600 women with disabilities , whereas about 30 DPOs and a number of public private departments / institutions have also been engaged and benefitted.

 

HI Pakistan collected the stories of project beneficiaries and published to highlight the impact of the project and to integrate the lesson learnt in program cycle management.

A person living with dementia learning to navigate an iPad: a case study

INGEBRAND, Elias
SAMUELSSON, Christina
HYDÉN, Lars-Christer
2020

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Purpose

This study challenges the notion that people living with dementia are unable to achieve novel learning without focussed intervention techniques. The purpose of this study is to explore how a woman living with dementia (Alzheimer’s disease) learns to use a tablet computer with support from communicative partners.

 

Method

The study is based on video recordings and the theoretical framework of learning as changing participation in joint activities. Quantitative and qualitative focus is on changes in the interactional organization over the course of six weeks in the activity of using an augmentative and alternative communication application.

 

Results

Over time, the participant living with dementia, relies less on the expertise and explicit instructions of her communicative partners when navigating the application, and more on the immediate feedback provided by the tablet computer.

 

Conclusions

The findings suggest that novel learning still is possible for people living with dementia, even without the implementation of focussed interventions. This study further emphasizes the procedural nature of learning for people living with dementia as the woman’s embodied actions were carried out in an increasingly more direct fashion.

Severe-to-profound hearing impairment: demographic data, gender differences and benefits of audiological rehabilitation

TURUNEN-TAHERI, Satu
CARLSSON, Per-Inge
JOHNSON, Ann-Christin
HELLSTROM, Sten
June 2018

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Purpose: The purpose of this study was to identify and report demographic data of patients with severe-to-profound hearing loss, assess participation in audiological rehabilitation and analyze the benefits of various rehabilitation methods.

 

Materials and methods: Data on 4286 patients with severe-to-profound hearing impairments registered in the Swedish Quality Register of Otorhinolaryngology over a period from 2006–2015 were studied. Demographic data, gender differences, audiological rehabilitation and benefits of the rehabilitation were analyzed.

 

Results: Group rehabilitation and visits to a hearing rehabilitation educator provided the most benefits in audiological rehabilitation. Only 40.5% of the patients received extended audiological rehabilitation, of which 54.5% were women. A total of 9.5% of patients participated in group rehabilitation, with 59.5% being women. Women also visited technicians, welfare officers, hearing rehabilitation educators, psychologists and physicians and received communication rehabilitation in a group and fit with cochlea implants significantly more often than did men.

 

Conclusions: The study emphasizes the importance of being given the opportunity to participate in group rehabilitation and meet a hearing rehabilitation educator to experience the benefits of hearing rehabilitation. There is a need to offer extended audiological rehabilitation, especially in terms of gender differences, to provide the same impact for women and men.

Gender and diagnostic impact on everyday technology use: a differential item functioning (DIF) analysis of the Everyday Technology Use Questionnaire (ETUQ)

KOTTORP, Anders
MALINOWSKY, Camilla
LARSSON-LUND, Maria
NYGARD, Louise
May 2018

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Background: As the use of everyday technology is increasingly important for participation in daily activities, more in-depth knowledge of everyday technology use in relation to diagnosis and gender is needed. The purpose of this study was to investigate the stability of the perceived challenge of a variety of everyday technologies across different samples of varying diagnoses including both males and females.

 

Methods: This cross-sectional study used 643 data records from clinical and research samples, including persons with dementia or related disorders, acquired brain injury, intellectual disability, various mental or medical disorders, and adults without known diagnoses. The Everyday Technology Use Questionnaire, comprising 93 everyday technology artifacts and services (items) measuring the level of everyday technology challenge and relevance of and perceived ability to use these was used for data gathering. A two-faceted Rasch model in combination with differential item functioning (DIF) analyses were used for comparing item hierarchies across samples.

 

Results: Only three items (3.2%) demonstrated a clinically relevant DIF by gender, and nine items (9.7%) by diagnosis.

 

Discussion: The findings support a stable hierarchy of everyday technology challenge in home and community that can facilitate planning of an accessible and inclusive society from a technological departure point

Disabling sexualities: Exploring the impact of the intersection of HIV, disability and gender on the sexualities of women in Zambia

WICKENDEN, Anna
NIXON, Stephanie
YOSHIDA, Karen K
2013

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Background: Women with a disability are often characterised as a homogenous social group consigned to a cultural stereotype with assumptions of dependence, asexuality and gender neutrality. Furthermore, there is a void of research about the experience of people with disabilities following diagnosis with HIV. Little is known about how HIV diagnosis intersects with disability and gender and how it shapes the experiences of intimacy and gender roles of those negotiating this intersection.

 

Objective: The objective of this study was to explore how HIV, disability and gender shape the perspectives of HIV-positive women with disabilities regarding intimacy and gender roles.

 

Methods: Twelve women in Lusaka, Zambia were recruited for in-depth semi-structured interviews to explore their experiences of having a disability and living with HIV. Interviews were conducted in English, Bemba, Nyanja and Zambian sign language. Descriptive and thematic analyses were conducted, followed by in-depth gender analyses of data relating to intimacy and gender roles.

 

Results: Data analysis led to the identification of two main themes: the impact of HIV diagnosis on intimate relationships amongst the participants; and the disruption and renegotiation of gender roles. These findings demonstrate the loss of intimacy (often decided by the participants) and changes in women’s gender roles (infrequently decided by them).

 

Conclusions: The narrow approaches to sexuality and HIV that reinforce misconceptions and stereotypes need to change. In their place should be inclusive and disability and sex-positive approaches that are informed by the diverse realities of women’s lives. Further research is needed to develop stronger evidence of the impact of HIV and disability on gender roles and sexuality.

Sexual Health of Women with Spinal Cord Injury in Bangladesh

LUBBERS, N P M
NURI, R P
VAN BRAKEL, W H
CORNIELJE, H
2012

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Purpose: To identify factors influencing the sexual health of women with spinal cord injury (SCI) in Bangladesh.

 

Methods: This study used both qualitative and quantitative methods. The quantitative part used a case-control design. Cases were women with SCI and controls were age-matched women without SCI. Questionnaires were used to collect data concerning the sexual health status of women. Multivariate logistic regression was done to determine which factors had an independent effect on sexual health. In-depth interviews were held with a sub-group of women from both groups, and interview guides were used. The in-depth interview data was subjected to content analysis.

 

Results: In total, 92 questionnaires were given out and 30 in-depth interviews were conducted. A relationship was found between physical factors and sexual health, as pain, vaginal dryness and physical discomfort were mentioned more frequently among women with SCI. Environmental and emotional factors such as stigma, satisfaction of the husband and support from the husband and friends had an influence on the sexual health of the women with SCI, as well as the other group of women.

 

Conclusions: From interviews it became clear that most of the women with SCI were dissatisfied with their sexual health as compared to the women without SCI. However, environmental and emotional factors such as attitudes, support and stigma, rather than physical factors, were the most important influences on sexual health in both groups of women.

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