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. OBJECTIVE: This study aimed to report the systematic development of the Move it, Move ID! intervention by describing how the 8 different steps of the Behavior Change Wheel (BCW) were applied and present the results that emerged from those steps. In doing so, the (theoretical) content of the intervention is described in detail. METHODS: A total of 23 adolescents and young adults (aged 14-22 years) with mild to moderate intellectual disabilities were designated as cocreators of the intervention. Across 2 groups, 6 similar cocreation sessions were organized in each. The content and sequence of the sessions were structured to align with the 8 steps of the BCW. All sessions were recorded and transcribed verbatim. Both a deductive (ie, steps of the BCW) and inductive (ie, resonating the voice of the participants) analysis approach were applied specifically focusing on identifying and describing the findings within each of the BCW steps. RESULTS: After behavioral analysis (steps 1-4), 10 intervention goals were chosen and linked to Capability, Opportunity, and Motivation-Behavior components (theory within the BCW) that needed to be addressed. Psychological capability, social opportunity, and reflective motivation were emphasized as the first targets to focus on. A key finding was the urge for real-life social connectedness and social integration, which makes the social component as part of physical activity a central theme to focus on within intervention development. Judgments on the most suitable intervention functions (step 5) and behavior change techniques (step 7) were explained. When discussing the mode of delivery of the intervention (step 8), it was underscored that solely relying on a mobile health app would not fulfill participants' social needs. Hence, the chosen intervention adopts a dyadic approach in which young individuals with intellectual disabilities are matched with peers without intellectual disabilities to engage in physical activities together, with a mobile app playing a supportive role in this partnership. CONCLUSIONS: The transparent description of the development process highlights why certain intervention components and behavior change techniques were chosen and how they are intertwined by means of the selected intervention design. This paper provides a detailed blueprint for practitioners wanting to integrate the BCW and its associated behavior change techniques, in combination with actively involving the target group, into their intervention development for people with intellectual disabilities.

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. It was the aim to highlight elements that must be considered when implementing co-creation and consequently formulate important lessons learned. METHODS: Twenty-three adolescents (14-22 y) with mild to moderate ID participated in six co-creation sessions at their school. The objectives and working methods in each session are described. Inductive thematic analysis was conducted on the researchers' reflection forms, which were completed after each session. RESULTS: Seven main themes could be distinguished from the data: experiences related to assistance (i.e., teacher presence) during sessions, the importance of building rapport, co-decision making power, the impact of different group dynamics, the relevance of adapted questioning, the influence of co-creative working methods and required characteristics of a co-creation researcher. CONCLUSION: Seven lessons learned were formulated when preparing and conducting co-creation with adolescents with ID. Innovative, concrete (non-abstract) and creative working methods are highly needed. Describing the entire process transparently could be a first step to turn co-creative research into an evidence-based methodology.

Studies show that people with intellectual disabilities are less physically active than the general population. This is a problem, since people with intellectual disabilities experience more health problems, and physical activity might be an important angle to reduce these health problems. However, current interventions to promote physical activity in this target group do not appear to work because they do not match their needs and preferences. Therefore, it is important to develop interventions together with them, in collaboration, what is called "co-creation". This has not happened much in research with people with intellectual disabilities before (and especially not with adolescents having intellectual disabilities), because researchers often have the perception that they do not have the capabilities to understand and discuss research related topics. This study elaborates on the researchers' experiences in conducting co-creative research with adolescents and young adults with mild to moderate intellectual disabilities, and formulates 'lessons learned' so that future researchers can start from these findings when they themselves want to engage in a co-creation process with this target group. The results showed that co-creation is feasible with this target group, if co-creation methods are selected that fit the target group (e.g. making use of visuals, asking concrete (non-abstract) questions and providing clear but short instructions). We suggest that (standardized) innovative and creative working methods are needed when conducting co-creation with this target group. Moreover, to be better armed against the enormous flexibility expected of a co-creative researcher, it might be helpful to make an assessment of the group dynamics before conducting co-creation. The presence and contribution of the physical education teacher in these co-creation sessions was seen as an added value for several reasons. By describing this entire process transparently and in detail, this could be a first step in making co-creation an evidence-based methodology, also for vulnerable populations.

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

Background: Obuntu bulamu, 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. Objectives: The study aims to evaluate the acceptability and feasibility of the intervention. Methods: A qualitative Afrocentric intervention study was implemented in 10 schools in Wakiso district in Central Uganda. Researchers purposely selected CwD aged 8-14 years, their peers and parents from 10 primary schools with on average three CwD per school. A total of 64 study parents (33 parents of CwD and 31 peers) were interviewed at baseline and endline. Two focus group discussions were held with 14 parents at midline. Parents also participated in a consultative meeting about the intervention design at baseline and two evaluation and feedback workshops at midline and endline. Thematic data analysis was conducted. Results: Findings showed that parents found the intervention inspiring, acceptable, culturally appropriate and supportive, as it built on values and practices from their own cultural tradition. Parents reported that the intervention enhanced a sense of togetherness and belonging and helped them to develop more positive attitudes towards CwD and disability inclusion. They felt the intervention increased participation and inclusion of CwD at home, school and in communities. Conclusion: The Obuntu bulamu peer-to-peer support intervention is an acceptable, culturally appropriate intervention with the potential to improve inclusion of CwD. Further studies are recommended to measure the effectiveness of the intervention. Contribution: The paper contributes to existing evidence that there is need for more Afrocentric interventions, which built on cultural values and practices. Interventions based on indigenous values have a greater potential to be acceptable, can foster integration and are likely to be more sustainability to achieve disability inclusion. In the article we describe parental perspectives of the Obuntu bulamu intervention, an intervention to improve inclusion of children with disabilities, which was designed by children, parents, teachers, educationalists, and academics from Uganda.

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. Semi-structured interviews were used to explore the experiences of 11 participants. Results: Four themes emerged from the data analysis. (1) people with hEDS or HSD can no longer do what they want to do and that affects their identity, (2) people with hEDS or HSD have to find a balance in the amount of activities they participate in, (3) having hEDS or HSD influences how to ask for, accept and give help, and (4) Relationships are affected in persons with hEDS or HSD. As well as changes in the social network, different types of relationships are influenced by the disease, including relationship with their partner, their children, their friends, strangers, fellow-sufferers and health care professionals.

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. In the inspiration phase (needs analysis), in-depth interviews will be conducted in two day care centres in Flanders using an interpretative phenomenological analyses, one with a supply-driven approach and the other with a demand-driven approach, followed by a survey sent to all Flemish day care centres. In the ideation phase, the insights of phase 1 will guide a cocreation process (comprising a World Cafe, brainstorm and prototype sessions) with the DSPs, PID and other stakeholders. In the implementation phase, the solution will be tested in the two day care centres from phase 1 by means of living labs and a realist evaluation. By adopting this protocol, the functionality, quality, usability and acceptance are expected to increase. This protocol adopts all phases of the HCD process and shows the complementarity of HCD with traditional research methods. PID and the DSPs will benefit as the end result is truly grounded in their specific needs and wishes. ETHICS AND DISSEMINATION: Ethical approval by the Ethics Committee of the University Hospital Ghent, Belgium (reference numbers: B670202042983 and PA2021-091). All participants will sign informed consent forms. Results of this study will be submitted for publication in relevant peer-reviewed journals and will be presented at relevant conferences.

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). In this retrospective case-control study, the Ghent Participation Scale was completed by all participants. Each patient with EDS and HSD was matched by age and sex to healthy controls. The hEDS and HSD group were compared with the healthy control group and a positive control group (persons with fibromyalgia). The results show that there was a significant lower overall participation score for persons with hEDS/HSD compared to the healthy control group. In addition, significant differences were observed in the subscores self-performed activities and delegated activities in the hEDS/HSD group compared to healthy controls, being HEDS/HSD patients who obtained the lower scores. Further research is needed to obtain representative results of the participation level for the EDS/HSD population. In this way, interventions can be set up for patients with EDS in an evidence-based way and that are appropriate to the patient's level of participation.

'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. The transcripts were analysed through a qualitative content analysis process. RESULTS: Six themes were identified that reflect distinct aspects of the participants' work within the DigiContact remote support context: being encouraged to adopt a solution-oriented coaching support style; being limited in one's support options; facing considerable diversity; providing support as one team; dealing with unpredictability; and navigating the dynamic within work shifts. CONCLUSIONS: The way support is organised and delivered can have substantial implications for support professionals. Working at a service like DigiContact seems to call for specific skills, knowledge, affinities and experience, and for appropriate support and facilitation from organisations.

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

BACKGROUND: "Ehlers-Danlos 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. This study, therefore, aimed to explore the lived experiences in employment participation of patients diagnosed with "hypermobile EDS". METHODS: An inductive thematic analysis, using semi-structured interviews was used. Nine patients, purposively selected by a continuum sampling strategy, were included. Interviews were audio-recorded and transcribed verbatim. RESULTS: Data analysis resulted in three main themes: (1) elements assisting participation in employment, (2) limitations in employment participation, and (3) unemployment due to the "hypermobile EDS". On the one hand, the results show that related health complaints can impede employment participation to an important extent. On the other hand, patients also report several aspects of work that can affect their well-being in a positive way. CONCLUSION: There are specific reasons for a person with "hypermobile EDS" to participate in employment. These reasons are different for each person and may even vary in time.Implications for rehabilitation"Hypermobile EDS" greatly impacts activities and participation in daily life. "Living with limitations" is the central theme in the lives of "Hypermobile EDS" patients.Various aspects influence work participation in people with "Hypermobile EDS", such as work pressure, tasks, and transport to work.Work has positive effects in the lives of people with "Hypermobile EDS."Work can create difficulties when the job requirements and tasks do not match the functional abilities of a person with "Hypermobile EDS."

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. Results indicate that attention, social, and thought problems were most prevalent, whereas family involvement and receiving/expressing affection were identified as strengths. A confirmatory factor analysis identified problems and strengths as distinct, yet related, variables. Moreover, a cluster analysis of problems and strengths identified four different profiles. Implications for interventions are discussed.

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. T-tests, correlations, analysis of variance and regression analysis were used to compare means between children with spina bifida and their siblings, understand relationships between variables, and identify predictors of HRQOL. RESULTS: Children with spina bifida (N = 39) had lower HRQOL compared to their siblings (N = 33) (t = -3.868, p < .001 parental; t = -3.248, p = .002 child ratings). Parents (N = 39) indicated higher parental stress for their child with spina bifida (t = 2.143, p = 0.036). HRQOL child outcomes were predicted by the presence of hydrocephalus (ß = -.295, p = 0.013) for children with spina bifida, and daily functioning levels (ß = .336, p = 0.038), and parental support (ß = .357, p = 0.041) for siblings specifically. Parent rated HRQOL outcomes were predicted by parental distress (ß = -.337, p = 0.008), incontinence (ß = .423, p = 0.002), and daily functioning levels (ß = .325, p = 0.016) for children with spina bifida. CONCLUSIONS: To improve HRQOL investment in neurosurgical care, community based rehabilitation, incontinence management, and parental support are required. A combination of child friendly semi-structured and creative research methods are recommended to study HRQOL.

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. Two reviewers independently performed this screening. Included studies were appraised based on their methodological quality. Results The search resulted in 20 eligible studies about nine different FCE methods. The Baltimore Therapeutic Equipment work simulator showed a moderate predictive validity. The Ergo-Kit (EK) showed moderate variability and high inter- and intra-rater reliability. Low discriminative abilities and high convergent validity were found for the EK. Concurrent validity of the EK and the ERGOS Work Simulator was low to moderate. Moderate to high test-retest, inter- and intra-reliability was found in the Isernhagen Work-Systems (IWS) FCE. The predictive validity of the IWS was low. The physical work performance evaluation (PWPE) showed moderate test-retest reliability and moderate to high inter-rater reliability. Low internal and external responsiveness were found for the PWPE, predictive validity was high. The predictive validity of the short-form FCE was also high but need to be further examined on several psychometric properties. Low discriminative and convergent validity were found for the work disability functional assessment battery. The WorkHab showed moderate to high test-retest, inter- and intra-rater reliability. Conclusion Well-known FCE methods have been rigorously studied, but some of the research indicates weaknesses in their reliability and validity. Future research should address how these weaknesses can be overcome.

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. METHOD: A phenomenological-hermeneutical study, using in-depth interviews. Patients were selected by a purposive sampling strategy. RESULTS: This study shows that the EDS-HT syndrome affects daily life. Ten woman between 31 and 65 years were interviewed. They have between 2 and 5 children. The data analysis results in six themes. (1) Getting a diagnosis is a relief and supports the choice to become a mother; (2) EDS-HT causes emotional distress, imposes a physical burden and has a major impact on social behavior; (3) EDS-HT demands a restructuring of everyday activities; (4) Children's and mothers' expectations do not correspond; (5) Having a supportive social and physical environment is of major importance; (6) The presence of the child reduces the feeling of illness of the mother. CONCLUSION: The diagnosis of EDS-HT is a catalysing factor in the choice of whether or not to become a mother. EDS-HT has a huge impact on bodily functions, which in turn influences activities and participation. IMPLICATIONS: This study gives insight in the activities of daily life of persons with EDS-HT. Health care professionals can be of great importance to help patients in (re)organizing their lives according to the available energy and in supporting their choices. They can help defining goals and setting priorities in daily life.

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. SUBJECTS: A total of 365 outpatients from eight diagnostic groups. MEASURES: The Ghent Participation Scale, the Impact on Participation and Autonomy, the Utrecht Scale for Evaluation of Rehabilitation-Participation and the Medical outcome study Short Form SF-36. RESULTS: The Ghent Participation Scale was found to have good internal consistency (Cronbach's α between 0.75 and 0.83). At item level, the test-retest reliability was good; weighted kappas ranged between 0.57 and 0.88. On the dimension level intraclass correlation coefficients ranged between 0.80 and 0.90. Evidence for construct validity came from high correlations between the subscales of the Ghent Participation Scale and four subscales of the Impact on Participation and Autonomy (range, r = -0.71 to -0.87) and two subscales of the Utrecht Scale for Evaluation of Rehabilitation-Participation (range, r = 0.54 to 0.72). Standardized response mean ranged between 0.23 and 0.68 and the area under the curve ranged between 68% and 88%. CONCLUSION: The Ghent Participation Scale appears to be a valid and reliable method of assessing participation irrespective of the respondent's health condition. The Ghent Participation Scale is responsive and is able to detect changes over time.

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. The Flemish community of Belgium was among the first to generalize the screening for hearing loss in young children and is an interesting case to study the public justification of early interventions for families with deaf children. This article uses a critical lens to study the archive of the government child healthcare organization in Flanders in order to uncover underlying constructions of childhood, deafness, and preventive health. We focus on two interrelated themes. The first is the notion of exclusion of the human factor through the mediation of technology. The second is the idea of deafness as endangering a healthy development, an impairment that can nevertheless be treated if detected early enough. It is argued that, since deafness cannot be viewed as a life-threatening condition, the public interest which is implicitly defended is not the rescue of deaf children rather the exclusion of otherness.

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. A mobile school-based model has been implemented by a non-governmental organisation in Cape Town in an attempt to make HCT more youth friendly and accessible to young people. The objective of this study was to explore whether this mobile school-based HCT service is youth friendly. METHODS: The study was descriptive, using three qualitative data collection methods: observation of the HCT site at two secondary schools; interviews with six service providers; and direct observation of 21 HCT counselling sessions. KEY RESULTS: The mobile school-based HCT service fulfilled some of the criteria for being a YFHS. The service was equitable in that all students, irrespective of race, gender, age, or socio-economic status, were free to use the service. It was accessible in terms of location and cost, but students were not well informed to make decisions about using the service. The service was acceptable in that confidentiality was guaranteed and the service providers were friendly and non-judgemental, but it was not considered acceptable in that there was limited privacy. The service was appropriate in that HCT is recommended as an intervention for decreasing the transmission of HIV, based on evidence and expert opinion; however, in this case, HCT was provided as a stand-alone service rather than part of a full package of services. Moreover, studies have suggested that young people want to know their HIV status. The service was ineffective in that it identified students who are HIV positive; however, these students were not assisted to access care. CONCLUSION: Providing HCT in the school setting may make HCT more accessible for students, but it needs to be provided in an equitable, accessible, acceptable, and effective way.

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. There is still need for a generic participation instrument including both objective and all relevant subjective variables resulting in one participation score. AIM: To develop a generic participation measure based on objective and subjective aspects and leading to one final score; the Ghent Participation Scale (GPS). Additionally it was the aim to explore whether the GPS has a good internal validity by means of factorial validity and homogeneity and whether the GPS is feasible and interpretable. DESIGN: Cross-sectional study. SETTING: Outpatient rehabilitation centre. POPULATION: One hundred thirty former rehabilitation outpatients with various conditions. METHODS: Item derivation for the GPS was based on qualitative research. The participants administered the GPS in the third week after discharge from the Ghent University Hospital. An exploratory factor analysis was performed to determine underlying dimensions. Statistical coherence was expressed in both item-total correlations and in Cronbach's α coefficient. RESULTS: An exploratory factor analysis showed 3 underlying dimensions within the GPS: 1) performing activities according to preferred choices and wishes; 2) social appreciation and acceptance by performing activities; and 3) the need to delegate activities explaining 55.8% of the total variance. The results show a good to strong homogeneity (item-total ranged from 0.58 to 0.80) and a strong internal consistency (Cronbach's α ranged from 0.76-0.92). CONCLUSIONS: The results of this preliminary validation study suggest that the GPS appears to be a valid measure to rate participation. CLINICAL REHABILITATION IMPACT: Further research and more and more powerful psychometric models such as Rash Analysis or Item Response models are needed to establish a psychometrically sound instrument.

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. METHODS: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child's daily functioning level and parental stress levels. RESULTS: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman's correlation coefficient [ρ] = -0.245), continence (ρ = -0.182), use of clean intermittent catheterisation (ρ = -0.181) and bowel management (ρ = -0.213), receiving rehabilitative care (ρ = -0.211), household income (ρ = -0.178), geographical region (ρ = -0.203) and having support from another parent in taking care of the child (ρ = -0.234). Linear regression showed parental stress was mostly explained by the child's inability to walk (ß = -0.248), practicing bowel management (ß = -0.468) and having another adult to provide support in caring for the child (ß = -0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent-Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**). CONCLUSION: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.

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. SPSS16 was used for data analysis. RESULTS: 1/4 mothers of children with spina bifida took folic acid during late pregnancy, none preconception. None had knowledge about folic acid and spina bifida prevention. 33.5% of women attending ANC had ever heard about spina bifida, 1% knew folic acid intake can prevent spina bifida. 42.4% took folic acid supplements in late pregnancy, 8.1% during the first trimester, none preconception. All women said to have eaten food rich in folic acid. None were aware about fortified foods. 7% of health workers understood the importance of early folic acid intake. All health workers recommended folic acid intake to women attending ANC. 20% of the health workers and 25% of the women said folic acid supplements are not always available. CONCLUSION: Folic acid intake is limited in northern Uganda. This is attributed to limited education and understanding of women and health workers about the importance of early folic acid intake, late presentation of women at ANC, poor supply chain and dilapidated health services caused by war and poverty. A combination of food fortification, sensitization of health workers, women, and improving folic acid supply is recommended.

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. AIM: To explore the expressed needs of students about school-based HCT service provision. METHOD: The study was conducted in 6 secondary schools in Cape Town where a mobile HCT service is provided by a non-governmental organisation. In each school, two mixed-gender focus groups were held, one with grades 8 and 9 students and one with grades 10 and 11. A total of 91 students aged 13-21 were involved. The focus groups were conducted in the students' home language. All groups were audio-recorded, transcribed verbatim and translated into English. RESULTS: Content data analysis was done and the following themes emerged: (1) Where the students want HCT to be done, (2) How they want HCT to be done and (3) Who should do the counselling. Most students want HCT to be provided in schools on condition that their fears and expressed needs are taken into account. They raised concerns regarding privacy and confidentiality, and expressed the need to be given information regarding HCT before testing is done. They wanted staff providing the service to be experienced and trained to work with youth, and they wanted students who tested positive to be followed up and supported. CONCLUSION: To increase youth utilisation of the HCT service, their expressed needs should be taken into account when developing a model for school-based HCT.

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. In this article we explore the social dynamics in the unique life story of Jimmy Sax and analyze a diversity of discourses and practices that turned him into a nonrecyclable citizen. While exploring the different modes through which Jimmy's subjectivity was transformed throughout the course of his life, we expose the convoluted nature of the recovery paradigm, which leads to a reconceptualization of the notion of responsibility in recovery.