Synergizing the Behavior Change Wheel and a Cocreative Approach to Design a Physical Activity Intervention for Adolescents and Young Adults With Intellectual Disabilities: Development Study.

Background: There is a need for physical activity promotion interventions in adolescents and young adults with intellectual disabilities. Current interventions have shown limited effectiveness, which may be attributed to the absence of theory and a population-specific development. Combining a planning model (including theory) and cocreation with the target audience during intervention development could potentially address this gap.

Co-creating an intervention to promote physical activity in adolescents with intellectual disabilities: lessons learned within the Move it, Move ID!-project.

Background: Co-creation is a method to develop acceptable, contextually appropriate and potentially more effective interventions. Adolescents with intellectual disabilities (ID) seldomly participate in research and program development due to the assumption that they lack the capacity to understand and discuss the related topics.

Objective: This study describes reflections on a co-creation process with adolescents with ID from the point of view of the researchers in developing an intervention to increase physical activity.

: Parental peer-to-peer support for inclusion of children with disabilities in Central Uganda.

Background: , a peer-to-peer support intervention for children, parents and teachers to improve the participation and inclusion of children with disabilities (CwD), was developed and tested in Uganda. The intervention consisted of disability-inclusive peer-to-peer training and support activities. In this article, parent participation in and evaluation of the intervention are discussed.

The Impact of Hypermobile "Ehlers-Danlos Syndrome" and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships.

Background: People with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are hampered in their social participation, especially in the social relationships they have.

Objective: The aim of this study is to research the impact of hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) on interpersonal interactions and relationships.

Methods: A phenomenological hermeneutic study was performed.

Supporting direct support professionals in enabling people with intellectual disabilities to engage in meaningful activities: protocol for the Meaningful Activities 4 All (MA4A) study based on the human-centred design process.

Introduction: Meaningful activities (MA) have a positive impact on identity, well-being, participation and inclusion. Although people with intellectual disabilities (PID) depend on their direct support professionals (DSPs) to engage in MA, the DSPs need support which could enable them to offer more qualitative care and support.

Methods And Analysis: To identify DSPs' needs, and to develop a tool/service, an innovative and iterative approach is developed, based on the human-centred design (HCD) process, combined with traditional qualitative and quantitative research methods.

Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls.

Ehlers-Danlos syndrome and hypermobility spectrum disorder affect daily life. There is a lack of research that investigates how the disease affects aspects of participation. This study investigates whether there is a difference in the level of participation in society in persons with vascular EDS (N = 18), hypermobile EDS (N = 20), classical EDS (N = 4) and Hypermobility Spectrum Disorder (N = 27), compared to a healthy control group (N = 69) and fibromyalgia (N = 69).

'It really is quite a different ballgame'. A qualitative study into the work experiences of remote support professionals.

Background: Professional support for people with intellectual disabilities is increasingly provided remotely. This study explores what support staff of the Dutch remote support service DigiContact experience as distinctive aspects of their job as a remote support professional.

Method: Semi-structured interviews were held with 10 DigiContact support workers.

Patient perspectives on employment participation in the "hypermobile Ehlers-Danlos syndrome".

Background: "EhlersDanlos syndrome" (EDS) is a heritable connective disorder influencing multiple aspects of daily life. Most studies have focused on describing the physical symptoms and level of disability, but little knowledge exists about the psychosocial effects of the pathology. Participation in employment is an aspect that strongly influences quality of life of patients with chronic pathologies.

Behavioral Problems and Psychosocial Strengths: Unique Factors Contributing to the Behavioral Profile of Youth With Down Syndrome.

This study aimed to describe problem behaviors and psychosocial strengths, examine the problem-strength interrelations, and evaluate profiles of problems and strengths in youth with Down syndrome (DS). The community-based sample consisted of 67 parents of children with DS aged between 4 and 19 years. Parents reported about the developmental age (Vineland screener), behavioral problems (Child Behavior Checklist), and psychosocial strengths (Behavioral and Emotional Rating Scale) of their child.

Health related quality of life in children with spina bifida in Uganda.

Background: Studies on health related quality of life (HRQOL) of children with disabilities in low income countries are limited.

Objective: To inform interventions for children with spina bifida in low income countries, HRQOL of children with spina bifida and siblings, predictors, relationships between HRQOL and parental stress in Uganda were examined.

Methods: Demographic, impairment, daily, social functioning data, and HRQOL using the KIDSCREEN-10 were collected from 39 children, 33 siblings, and 39 parents from a cohort of families of children with spina bifida.

Updating the Evidence on Functional Capacity Evaluation Methods: A Systematic Review.

Objectives To synthesize the evidence on the psychometrics functional capacity evaluation (FCE) methods. Methods A systematic literature search in nine databases. The resulting articles were screened based on predefined in- and exclusion criteria.

The influence of Ehlers-Danlos syndrome - hypermobility type, on motherhood: A phenomenological, hermeneutical study.

Background: The consequences of the Ehlers-Danlos Syndrome hypermobility type (EDS-HT) affect many aspects of daily life. "Living with limitations" is a central theme in the life of patients affected by this heritable disorder of connective tissue. The aim of the present study was to explore the lived experiences of women with EDS-HT concerning diagnosis, influence on daily life and becoming and being a mother.

Saving Deaf Children? Screening for Hearing loss as a Public-interest Case.

New-born screening programs for congenital disorders and chronic disease are expanding worldwide and children "at risk" are identified by nationwide tracking systems at the earliest possible stage. These practices are never neutral and raise important social and ethical questions. An emergent concern is that a reflexive professionalism should interrogate the ever earlier interference in children's lives.

A mobile school-based HCT service - is it youth friendly?

Background: Despite an increase in HIV Counselling and Testing (HCT), few young people have been tested. It has been suggested that they do not test because formal health services (where HCT is provided) are often not youth friendly. The World Health Organisation describes a youth-friendly health service (YFHS) as one which is accessible, equitable, acceptable, appropriate, and effective.

Parental stress and support of parents of children with spina bifida in Uganda.

Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.

Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.

Measuring participation as defined by the World Health Organization in the International Classification of Functioning, Disability and Health. Psychometric properties of the Ghent Participation Scale.

Objective: To examine the internal consistency, test-retest reliability, construct validity, discriminant validity and responsiveness of the Ghent Participation Scale.

Design: Cross-sectional study with a test-retest sample.

Setting: Six outpatient rehabilitation centres in Belgium.

Measuring participation when combining subjective and objective variables: the development of the Ghent Participation Scale (GPS).

Background: The ICF reflects a bio-psycho-social paradigm and is increasingly used in outpatients rehabilitation settings. The component of participation is in the ICF the manifestation of a bio-psycho-social reasoning. Different participation measures have already been developed and were operationalized through objective and/or a limited set of subjective variables, but keeping them as separate concepts.

HIV counselling and testing in secondary schools: What students want.

Background: HIV counselling and testing (HCT) is an essential element in the response to the HIV epidemic. There are still major research gaps about the best ways to provide HCT, especially to the youth, and school-based HCT is a model that has been suggested. To make HCT youth friendly and to enhance access to the service, the particular needs of the youth need to be addressed.

Prevention of spina bifida: folic acid intake during pregnancy in Gulu district, northern Uganda.

Introduction: The intake of folic acid before conception and during the first trimester of pregnancy can prevent spina bifida. This paper describes folic acid intake in women in Gulu district in northern Uganda.

Methods: Structured interviews were held with 394 women attending antenatal care (ANC), 15 mothers of children with spina bifida, and 35 health workers in 2012 and 2013.

Untangling the nonrecyclable citizen: a critical reconceptualization of responsibility in recovery.

Over the last decades, international research, policy, and practice in the field of mental health care and a complementary variety of social work and social service delivery methods have been focused on recovery as a dominant concept. Emphasizing the service user's responsibility appears to be a central component in the empowering process of recovery. Using a critical disability studies perspective, we aimed to untangle the relationship between the individual citizen with mental health problems and the society in which the recovery discourse operates in Belgium.

Rediscovering recovery: reconceptualizing underlying assumptions of citizenship and interrelated notions of care and support.

Over the last few decades, research, policy, and practice in the field of mental health care and a complementary variety of social work and social service delivery have internationally concentrated on recovery as a promising concept. In this paper, a conceptual distinction is made between an individual approach and a social approach to recovery, and underlying assumptions of citizenship and interrelated notions and features of care and support are identified. It is argued that the conditionality of the individual approach to recovery refers to a conceptualization of citizenship as normative, based on the existence of a norm that operates in every domain of our society.

Resistance and resilience in a life full of professionals and labels: narrative snapshots of Chris.

In this article, the authors relate the life of Chris through narrative snapshots. Chris asked the authors to tell her story. They decided that it could be used to provide an insight into the different ways people with labels are confronted with professional practices and rituals.

First information parents receive after UNHS detection of their baby's hearing loss.

The first information parents receive after referral through Universal Newborn Hearing Screening (UNHS) has significant consequences for later care-related decisions they take and thus for the future of the child with a hearing loss. In this study, 11 interviews were conducted with a representative sample of Flemish service providers to discover (a) the content of the information provided to parents and (b) the service providers' assumptions and beliefs concerning deafness and care. To do this, we conducted an interpretative phenomenological analysis, followed by a discourse analysis.

The influence of supports strategies, environmental factors, and client characteristics on quality of life-related personal outcomes.

The concept of quality of life (QOL) is increasingly being used as a support provision and outcomes evaluation framework in the field of intellectual disability (ID). The present study used a hierarchical multiple regression research design to determine the role that available supports strategies, environmental factors, and client characteristics play in assessed quality of life-related personal outcomes. Data were collected in Arduin Foundation in The Netherlands.

The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.

Purpose: To open a discourse on the concept of autonomy as a precursor for participation in individuals with Spinal Cord Injury (SCI) by exploring the experiences about their perceived autonomy in their transition period from hospital to home.

Method: Based on the 'grounded theory' approach; in-depth, semi structured interviews were conducted with 11 SCI-patients. A theoretical sampling strategy was used and the data was analysed according to the constant comparative method.