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Sexuality as part of rehabilitation? A qualitative study on the perceptions of rehabilitation nurses on discussing patient sexuality during clinical rehabilitation

PASCUAL, April
WIGHMAN, Amber
LITTOOIJ, Elsbeth C
JANSSEN, Thomas W
February 2021

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Introduction: Spinal cord injury may seriously affect sexual health and sexuality, which can lead to lower self-esteem, social isolation, lower quality of life, and an increased risk of depression. Nurses play an extensive role in providing patient education. However, a gap between the patients’ need for information and the lack of information provided by nurses still exists. Therefore, knowledge about barriers and facilitators regarding discussing patient sexuality is necessary.

 

Methods: Semi-structured interviews were conducted with 25 nurses working in Spinal Cord Injury rehabilitation in one clinic in the Netherlands. The following themes were discussed during the interviews: (1) attitude, (2) social factors, (3) affect, (4) habits and (5) facilitating conditions.

 

Results: Addressing patient sexuality was difficult due to the nurses’ attitude and their environment. Sexuality was considered important but respondents were reserved to discuss the topic due to taboo, lack of knowledge, and common preconceptions. Participants expressed the need for education, a clear job description, time and privacy.

 

Conclusion: Nurses consider discussing patient sexuality as important but are hindered due to multiple factors. Organizational efforts targeted at knowledge expansion are needed to break the taboo and remove preconceptions. Nurses should provide opportunities to discuss the subject to intercept sexuality-related problems.

Physical Activity of the Community- Dwelling Elderly Population in Gujarat, India: A Cross-Sectional Study

Patel, Samira Sirajulhak
Gupta, Nalina
Parmar, Lata
2020

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Purpose: While ageing is an inevitable phenomenon of life, physical activity is important for healthy ageing. Compared to the other age groups, older adults throughout the world have the lowest rate of participation in recommended levels of physical activity. This study aimed to investigate the physical activity status of the community-dwelling elderly population in Gujarat, India.

 

Method: This was a cross-sectional study. A door-to-door survey was conducted among selected communities near Vadodara in Gujarat. Based on the inclusion criteria (age≥60years, MMSE-≥24), 347 elderly persons were included in the study. Data was collected using the Global Physical Activity Questionnaire (GPAQ), and analysed using descriptive statistics.

 

Results: Among the 347 older adults (mean age 67.43±7.46 years) who participated in the study, 159 were male and 188 were female. While 125 participants (36%) were physically active at levels recommended by the World Health Organisation, 222(64%) were physically inactive.

 

Conclusion: Only 36% of the participants were physically active as per WHO recommendations. The men were more physically active than the women in the study sample. This study implies that there is a need to create an awareness regarding the importance of physical activity for healthy aging.

Cross-cultural adaptation and psychometric evaluation of the Malay version of the Neck Disability Index

LIM, H H R
TAN, S T
TANG, Z Y
KOH, E Y L
KOH, K H
May 2020

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Purpose: Translating the Neck Disability Index (NDI) into the Malay language (NDI-M); evaluation of psychometric properties in patients with neck pain.

 

Methods: The NDI-M was translated according to established guidelines. In the first visit, 120 participants completed the NDI-M, visual analogue scale (VAS) for pain and demographic details. 98 participants returned to complete similar questionnaires and the Global Rating of Change (GRoC) scale. The NDI-M was evaluated for internal consistency, test-retest reliability, content validity, construct validity and responsiveness.

 

Results: The NDI-M demonstrated excellent internal consistency (Cronbach’s α = 0.84) and good test-retest reliability (ICC2,1 = 0.79). Content validity was confirmed with no floor or ceiling effects. Construct validity was established revealing three-factor subscales explaining 68% of the total variance. The NDI-M showed a moderate correlation with VAS (Rp = 0.49, p < 0.001). Regarding responsiveness, a moderate correlation between NDI-M change scores and VAS change scores was found (Rp = 0.40, p < 0.001). However, there was no significant correlation between NDI-M with GRoC (Rs = 0.11, p = 0.27).

 

Conclusions: The NDI-M is a reliable and valid tool to measure functional outcomes in patients with neck pain. It is responsive in detecting changes in pain intensity during a patient’s rehabilitation journey.

Physical Disability, Rights and Stigma in Ghana: A Review of Literature

GRISCHOW, Jeff
MFOAFO-M’CARTHY, Magnus
VERMEYDEN, Anne
CAMMAERT, Jessica
2019

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Purpose: This is a survey of peer-reviewed articles focussed on the causes and consequences of stigma towards persons with physical disability in Ghana.

 

Method: After a systematic search of the online databases EBSCOhost, ProQuest, PubMEd and Web of Science for peer-reviewed articles on disability in Ghana, 26 articles were chosen for critical review.  The three main selection criteria were: the articles had to be peer-reviewed, they had to be based on interviews with Ghanaians in the field, and they had to discuss stigma and human rights.  For analysis, the content of the articles was grouped under two sections: major themes (human rights, causes of stigma, consequences of stigma) and policy recommendations (economics, medical services/healthcare, affirmative action, attitudes and awareness-raising, inclusion of cultural beliefs).

 

Results:   This review found that most of the studies attribute stigma to negative attitudes towards Ghanaians with disability, and many highlight beliefs among Ghanaians that disability is caused by spiritual and supernatural forces. The consequences, according to most authors, are social, economic and political exclusion. Policy recommendations include improving government policy, increasing funding for disability programmes, changing public attitudes, and paying attention to Ghanaian culture and tradition in designing disability interventions. While these are valid points, the authors of this paper are of the opinion that the literature also suffers from lack of a deep understanding of the historical and socio-cultural roots of supernatural beliefs in Ghana.

 

Conclusion: The 26 studies discussed in this review show that since 2006 very good work has been produced on disability in Ghana, especially by Ghanaian disability scholars.

 

It is hypothesised, however, that a full understanding of disability and stigma in Ghana must be based on deeper research into the roots of the beliefs that drive stigma.  Future work therefore should focus on deepening the analysis of cultural beliefs towards disability in Ghana, in order to understand fully the roots of culturally-based disability stigma. More research into the economic causes and consequences of disability is also recommended, without which a full analysis of cultural stigma will not be possible.

‘We only got Coca-Cola’: Disability and the paradox of (dis)empowerment in Southeast Nigeria

NWOKORIE, Okechukwu V.
DEVLIEGER, Patrick J.
2019

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Background: Empowerment is the generic name for support services for persons with disability in Nigeria. In it, the elites of the society play leading roles. Special events such as anniversaries, Christmas seasons, wealthy people’s birthdays, investiture of new titles and campaigns before general elections often provide occasions for empowerment programmes.

 

Objectives: This article explores discourses of empowerment of persons with disability in Southeast Nigeria. We concentrate on the relation between local elites and the disability community and how it impacts our understanding of empowerment. Conceptualising empowerment as worldmaking, and disability as something that is ambiguous, we challenge the assumption that the aim of empowerment of disabled people is to improve their (disabled people’s) quality of life.

 

Method: This article relies on research data (collected between January 2014 and January 2017) comprising 72 interviews and participant observations from 27 persons with disability, and 13 social workers and senior government officials.

 

Results: We conclude that discourses of empowerment of disabled people frame disability as loss and tend to conceal the personal stories and survival operations of disabled people.

 

Conclusion: Empowerment discourses ironically provide the platform for local power elites to ‘ride’ to fame on the backs of disabled to extend their influence in society. In the current neoliberal environment of unequal access to opportunities, disabled people must ‘play along’ as a survival strategy. Our qualitative data provide opportunities to reflect on the tensions between the ‘local and the global’, thus indicating how disability issues intersect with other wider questions.

 

 

African Journal of Disability, Vol 8, 2019

The Family and Disability in Ghana: Highlighting Gaps in Achieving Social Inclusion

OPOKU, Maxwell Peprah
ALUPO, Beatrice Atim
GYAMFI, Naomi
ODAME, Lois
MPRAH, Wisdom Kwadwo
TORGBENU, Eric Lawer
BADU, Eric
2018

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Purpose: There are social and environmental barriers faced by persons with disabilities which have been reported in literature. In discussing these barriers, attention is yet to be given to the support from families to members with disabilities. This study aimed to examine family support and its impact on the lives of persons with disabilities in Ghana.

 

Methods: The study participants were 48 persons with disabilities - physical, hearing and visual disabilities - who were members of Disabled Peoples’ Organisations. They were conveniently drawn from 4 districts in the Northern region of Ghana.

 

Results: The study found that the families of the participants did not give them adequate support to access services that would improve their lives. For instance, limited access to education resulted in inability of participants to secure  jobs.

 

Conclusion: Without the primary support of the family, persons with disabilities might be unable to break down social barriers due to their inability to access education and other developmentally useful services. The implication of the study for policy-making has been discussed extensively.

Exploring structural violence in the context of disability and poverty in Zimbabwe

MUDEREDZI, Jennifer T.
EIDE, Arne H.
BRAATHEN, Stine H.
STRAY-PEDERSEN, Babill
2017

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Background: While it is widely assumed that disability, poverty and health are closely linked, research falls short of fully understanding the link. One approach to analysing the links between disability and poverty is through the concept of structural violence, referring to social structures that contribute to the impoverishment of individuals or communities. These structures can be political, ecological, legal and economic, among others.


Objective: To explore structural violence and how it affects families of children with cerebral palsy among the Tonga ethnic group living in poor rural communities of Binga in Zimbabwe.


Method: This is a longitudinal, qualitative and ethnographic study. Data were collected over a period of eight years from 2005 to 2013. Data collection techniques were in-depth interviews, participant observation and focus group discussions. Purposive sampling was used to recruit 53 informants.


Results: Structural violence was noted through four themes: internal displacement and development, food and politics, water and sanitation, and social services. Poverty was noted in the form of unemployment, lack of education, healthcare, food and shelter. The concept of structural violence inflicted social suffering on the informants. Politics played a major role in activities such as food withdrawal, lack of water, development and allocation of local resources to ‘the people of the city’, leaving the informants struggling with care.

 

Conclusion: Political and economic forces have structured risks and created a situation of extreme human suffering. The capabilities approach brings out the challenges associated with cerebral palsy in the context of development challenges.

Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting

ZUURMOND, Maria
NYAPERA, Velma
MWENDA, Victoria
KISIA, James
RONO, Hilary
PALMER, Jennifer
2016

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Background: Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention.


Methods: Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation.


Results: The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families.


Conclusion: The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes.

Concurrent Validity of Mobility Disability Scale among Community-dwelling Individuals

Manikandan, Natarajan
Kumar, K B
Rajashekhar, B
2016

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Purpose: A new Mobility Disability Scale (MDS) has been developed to assess the level of mobility disability among community-dwelling individuals. For it to be used effectively, a systematic evaluation of the psychometric properties isrequired. This study was conducted to determine the concurrent validity of the MDS among community-dwelling individuals, as compared to the Functional Independence Measure (FIM) and Functional Assessment Measure (FAM).

 

Method: Based on the survey of a semi-urban community, purposive sampling was used to select 52 individuals with mobility disability. All of them were evaluated using MDS and FIM FAM scales at the same time. Spearman’s Rankcorrelation coefficient was used to analyse the correlation of MDS scores with the FIM FAM scale scores.

 

Results: MDS scores had statistically significant negative correlation with FIM FAM total scale scores (r= -0.711) and the correlation was stronger when analysed with the mobility components of FIM FAM scales (r= -0.724).

 

Conclusion: The MDS possesses moderate concurrent validity with an existing functional scale. This indicates that it may be a suitable tool to quantify the level of mobility disability in persons with disability living in community.

 

Limitation: The psychosocial domain, though important, could not be compared with any gold standard measures due to unavailability of suitable scales.

Prevalence of Physical Disability among Urban Community-dwelling Adults in Sri Lanka

Weerasinghe, Inoka E
Fonseka, P
Dharmaratne, S D
Jayatilake, J A M S
2015

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Purpose: Assessment of physical disability at the community level is essential for rehabilitation and supply of services. This study aimed to assess the prevalence of physical disability among adults in an urban community in Sri Lanka.

 

Methods: A descriptive cross-sectional study was conducted among 2460 adults (18 -59 years of age) who were selected using cluster sampling. Physical disability was measured using a Physical Impairment Examination Tool (PIET) and World Health Organisation Disability Assessment Schedule II (WHODAS II).

 

Results: Prevalence of physical disability was 4.2% (95% CI= 3.5-5.1). Physical disability was higher among people in the age group of 40-59 years (6.5%, n=64) than among those in the age group of 18-39 years (2.6%, n=39) (P<0.05). Physical disability was more prevalent among females (4.4%, 95% CI= 4.2-4.6) than males (2.6%, 95% CI: 2.4-2.8), and among Tamils (7.8%, 95% CI=5.1%- 10.5%) than Sinhalese (3.3%, 95% CI=2.4%- 4.1%). It was higher among those who were divorced/widowed (58.3%, 95% CI=30.4- 86.2) than among married people (3.6%, 95% CI=2.8- 4.4). The prevalence of physical disability was 7.1% (95% CI=4.6- 9.5) among people with primary education, 4.5% (95% CI=3.4- 5.6) among those with secondary education, and 1.8% (95% CI=0.8- 2.8) among those with tertiary education. It was higher among the unemployed (7.2%, 95% CI=5.7-8.7) than the employed (1.8%, 95% CI=1.1-2.5). Age, gender, ethnicity, marital status, education levels and employment status were significantly associated with physical disability. 

 

Conclusions: Though the prevalence of physical disability appears to be higher among Sri Lankan adults than among people in developed countries, it is less than among people in other South-East Asian countries. Associations with socio-demographic variables were consistent with other studies.

Disability Inclusion in Primary Health Care in Nepal: An Explorative Study of Perceived Barriers to Access Governmental Health Services

VAN HEES, S
CORNIELJE, H
WAGLE, P
VELDMAN, E
2015

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Purpose: Persons with disabilities face additional barriers in accessing primary healthcare services, especially in developing countries. Consequently the prevalence of secondary health conditions is higher among this population. This study aims to explore the perceived barriers to access primary healthcare services by persons with disabilities in the Western region of Nepal.

 

Methods: 10 primary healthcare providers and 11 persons with disabilities (physically or visually impaired) were selected by non-governmental organisations from the hilly and lower areas. Based on the International Classification of Functioning and the health accessibility model of Institute of Medicine, semi-structured interviews were conducted and analysed using analytical induction.

 

Results: In general, healthcare providers and persons with disabilities reported similar barriers. Transportation and the attitude of family members and the community were the main environmental barriers. Even with assistive devices, people still depend on their families. Financial barriers were lack of funds for health expenses, problems in generating an income by persons with disabilities themselves, and the low socio-economic status of their families. Personal barriers, which affect help-seeking behaviour in a major way, were most often mentioned in relation to financial and socio-environmental barriers. Low self-esteem of the person with disability determines the family’s attitude and the motivation to seek out healthcare. Lastly, poor public awareness about the needs of persons with disabilities was reported.

 

Conclusions: Besides the known physical environmental barriers, this study found several environmental, financial and personal barriers that also affect access to primary healthcare. In particular, the attitudes of families and poor financial conditions seem to be interrelated and greatly influence help-seeking behaviour.

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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