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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.

Work capacity assessments and efforts to achieve a job match for claimants in a social security setting: an international inventory

SENGERS, Johan H
AMBA, Femke I
BROUWER, Sandra
STAHL, Christian
2020

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Purpose: Many high-income countries are witnessing a shift of focus on eligibility for disability benefits towards promotion of work reintegration. However, little is known about how countries assess work cap- acity, and how a job match is then obtained. The current study aims to compare work capacity assess- ments and available efforts to achieve a job match in eight high-income OECD countries.

 

Methods: A survey was conducted among key stakeholders concerning organization of work capacity assessments in social security settings, and efforts made to obtain a job, across eight OECD countries: Australia, Denmark, Finland, Iceland, Sweden, the Netherlands, the United Kingdom and the United States. 

 

Results: In most countries, work capacity is assessed at several time points, with variations in moments and in information used for job matching. In countries obtaining information on personal and work levels, the search to find a job match usually begins with the persons who have disabilities.

 

Conclusion: Although a shift towards a holistic focus in work capacity assessment has been recognized, medical factors still prevail. Limited emphasis is placed on the implications of functional limitations for the possibilities of work. A holistic approach to assessment needs to be coupled with holistic support measures through provision of coordinated and high quality job matching services.

Assessing significant others’ cognitions and behavioral responses in occupational health care for workers with a chronic disease

SNIPPEN, Nicole C
DE VRIES, Haitze J
DE WIT, Mariska
VAN DER BURG-VERMEULEN, Sylvia J
BROUWER, Sandra
HAGEDOORN, Mariet
January 2020

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Purpose: To examine current practices of occupational health professionals in assessing significant others’ cognitions and behavioral responses that may influence work outcomes of workers with a chronic disease.

 

Methods: A survey study among occupational health professionals, focusing on the assessment of illness perceptions, work-related beliefs and expectations, and behavioral responses of significant others of workers with a chronic disease. We performed linear regression analyses to investigate which factors are related to occupational health professionals’ assessment practices. We used thematic analysis to analyze qualitative data on occupational health professionals’ reasons to assess or overlook significant others’ cognitions and behavioral responses.

 

Results: Our study sample included 192 occupational health professionals. Most seldom asked about significant others’ cognitions and behavioral responses. Organizational norms and occupational health professionals’ self-efficacy were related to reported assessment practices. Reasons to assess significant others’ cognitions and behavioral responses included recognizing their influence on work participation, and occurrence of stagnation. However, occupational health professionals indicated some doubt whether such assessment would always contribute to better care.

 

Conclusions: It is not common practice for occupational health professionals to assess significant others’ cognitions and behavioral responses, although they recognize the influence of these factors on work outcomes. More research is needed as to how occupational health professionals can best address the role of significant others, and apply these new insights in their daily practice.

Gaps in access and school attainments among people with and without disabilities: a case from Nepal

EIDE, Arne H
LAMICHHANE, Kamal
Neupane, Shailes
November 2019

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Aim: Many children with disabilities in low- and middle-income countries do not attend school and one-third are out of school. In order to ensure that education is for all including children with disabilities, research is needed on barriers to schooling to identify targets for intervention. The study will examine the determinants of school achievement among persons with and without disabilities as well as among each type of impairment.

 

Methods: The study will utilize data from a recent national, representative household survey on living conditions among persons with and without disabilities. The individual level data used in this article comprise 2123 persons with and 2000 persons without disabilities.

 

Results: The results show that an alarmingly high proportion of persons in Nepal have not accessed formal education, with access being significantly lower among persons with disabilities. While the results may be influenced by the assumed relationship between disability and poverty, results from analyzing the cross-sectional data cannot be conclusive on the influence of disability vs. poverty in determining differences in access and school attainments. Increased environmental barriers, higher age, rural location, and increased levels of disability were found to be associated with lower educational achievement. Pronounced differences in access to education were found between impairment types, with individuals with physical impairments achieving the highest level and individuals with multiple impairments, hearing and mental impairments achieving lowest.

 

Conclusions: It is necessary both to strengthen the entire educational sector and at the same time allocate resources that will ensure that all children are on board and that particular efforts are implemented to cater for those who are easily side-lined.

Objective and subjective measures of physical functioning in women with fibromyalgia: what type of measure is associated most clearly with subjective well-being?

MUNGUIA-IZQUIERDO, Diego
PULIDO-MARTOS, Manuel
ACOSTA, Francisco M
ACOSTA-MANZANO, Pedro
GAVILAN-CARRERA, Blanca
RODRIGUEZ-AYLLON, Maria
GEENEN, Rinie
DELGADO-FERNANDEZ, Manuel
ALVAREZ-GALLARDO, Inmaculada C
SEGURA-JIMENEZ, Victor
WALITT, Brian
ESTEVEZ-LOPEZ, Fernando
October 2019

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Purpose: To find modifiable factors that are related to subjective well-being would be valuable for improving interventions in fibromyalgia. Physical activity, sedentary behaviour, and physical fitness may represent potential areas to optimize treatment regimens. In fibromyalgia, there is a discordance between clinical observations and patient-reported outcomes (objective and subjective assessments). Therefore, the present study aims at analyzing the associations of objective and subjective evaluations of physical activity, sedentary behaviour, and physical fitness with subjective well-being and determine if and how objective and subjective associations differ.

 

Methods: In this population-based cross-sectional study participated 375 women with fibromyalgia from the al-Ándalus project (Spain). Physical activity, sedentary behaviour, and physical fitness were objectively (accelerometers and performance testing) and subjectively (questionnaires) measured. Participants self-reported their levels of positive affect, negative affect, and life satisfaction.

 

Results: In the most conservative multivariate analysis, we found independent associations of the objective measures of physical activity with positive affect and life satisfaction and sedentary behaviour with positive affect. No such relationship was seen with subjective measures of the same behaviours. Moreover, we observed that objective and subjective physical fitness evaluations were independent of each other related to subjective well-being.

 

Conclusions: Independent associations of the objective measures (but not the subjective assessments) of physical activity with positive affect and life satisfaction, and of sedentary behaviour with positive affect were observed. However, objective measures and subjective appraisals of physical fitness appear to be independently related to well-being, which should be considered when developing physical exercise interventions for fibromyalgia.

Self-perceived mobility in immigrants in Sweden living with the late effects of polio

SALANDER, Helena
KJELLGREN, Felicia
SUNNERHAGEN, Katharina S
March 2019

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Purpose: To investigate outdoor mobility of immigrants in Sweden who are living with the late effects of polio.

 

Materials and methods: A total of 145 patients with late effects of polio born outside the Nordic region were identified at an outpatient polio clinic. Of these, 74 completed a questionnaire about their mobility and independence in daily life, self-perceived pain and depression, vocational status, mobility assistive devices/aids, transportation modes and driving. Patient characteristics were based on medical records supplied by physicians.

 

Results: Twice as many patients had lower extremities that were affected by polio than upper extremities. This affected their use of different transport modes and caused mobility and transfer problems. Indeed, 39% needed mobility aids and help from another person to move outdoors. Those who reported dependence for outdoor mobility were more often unemployed and more often depressed.

 

Conclusions: Many respondents reported having difficulties with transport mobility, but a large proportion, 57%, were independent and active drivers. It is important to consider outdoor mobility when planning rehabilitation for patients with late effects of polio and foreign backgrounds. In addition to psychosocial factors, dependence on mobility-related activities can lead to dependency and isolation.

Public stigmatisation of people with intellectual disabilities: a mixed-method population survey into stereotypes and their relationship with familiarity and discrimination

PELLEBOER-GUNNINK, Hannah A
VAN WEEGHEL, Jaap
EMBREGTS, Petri J C M
January 2019

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Purpose: Stigmatisation can negatively affect opportunities for people with intellectual disabilities to participate in society. Stereotyping, a first step in the process of stigmatisation, has been insufficiently explored for people with intellectual disabilities. This study examined the general public’s set of stereotypes that is saliently attributed to people with intellectual disabilities as well as the relationship of these stereotypes with discriminatory intentions and familiarity.

 

Materials and methods: A mixed-method cross-sectional survey within a representative sample of the Dutch population (n = 892) was used. Stereotypes were analysed with factor analysis of a trait-rating scale, and qualitative analysis of an open-ended question. The relationship between stereotypes and discrimination as well as familiarity with people with intellectual disabilities was explored through multivariate analyses.

 

Results and conclusions: Four stereotype-factors appeared: “friendly”, “in need of help”, “unintelligent”, and “nuisance”. Stereotypes in the “nuisance” factor seemed unimportant due to their infrequent report in the open-ended question. “Friendly”, “in need of help”, “unintelligent” were found to be salient stereotypes of people with intellectual disabilities due to their frequent report. The stereotypes did not relate to high levels of explicit discrimination. Yet due to the both positive and negative valence of the stereotypes, subtle forms of discrimination may be expected such as limited opportunities for choice and self-determination. This may affect opportunities for rehabilitation and might be challenged by protest-components within anti-stigma efforts.

Access to human rights for persons using prosthetic and orthotic assistive devices in Sierra Leone

MAGNUSSON, Lina
BICKENBACH, Jerome
January 2019

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Purpose: To evaluate the access to human rights of persons with disabilities who use prosthetic and orthotic assistive devices, and to compare groups of participants in terms of gender, residential area, income, and type and level of assistive device. The addressed areas were rights to: health, a standard of living adequate for health, education, marry and establish a family, vote, and work.

 

Methods: Questionnaires were used to collect self-reported data from 139 lower-limb prosthetic and orthotic users in Sierra Leone.

 

Results: About half of the participants considered their overall physical health good, while 37% said their mental health was bad. Most said they lacked access to medical care. About half of the participants had regular access to safe drinking water. Most had reasonable housing and 60% could read and write. Half of the participants were married and 70% had children. Almost all reported that they could vote if desired and about half were working.

 

Conclusions: There is still a need for improved access to medical care when needed for persons with lower limb physical disability in Sierra Leone. Better access to food and clean water are also necessary to facilitate a standard of living adequate for health, to realize the health rights of persons with disabilities.

Nationwide implementation of a national policy for evidence-based rehabilitation with focus on facilitating return to work: a survey of perceived use, facilitators, and barriers

BJORK BRAMBERG, Elisabeth
JENSEN, Irene
KWAK, Lydia
October 2018

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Aim: The aim is to assess whether the national policy for evidence-based rehabilitation with a focus on facilitating return-to-work is being implemented in health-care units in Sweden and which factors influence its implementation.

 

Methods: A survey design was used to investigate the implementation. Data were collected at county council management level (process leaders) and clinical level (clinicians in primary and secondary care) using web surveys. Data were analyzed using SPSS, presented as descriptive statistics.

 

Results: The response rate among the process leaders was 88% (n = 30). Twenty-eight percent reported that they had already introduced workplace interventions. A majority of the county councils’ process leaders responded that the national policy was not clearly defined. The response rate among clinicians was 72% (n = 580). Few clinicians working with patients with common mental disorders or musculoskeletal disorders responded that they were in contact with a patient’s employer, the occupational health services or the employment office (9–18%). Nearly, all clinicians responded that they often/always discuss work-related problems with their patients.

 

Conclusions: The policy had been implemented or was to be implemented before the end of 2015. Lack of clearly stated goals, training, and guidelines were, however, barriers to implementation.

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