Abstract: Objective: The aim of this pilot implementation study was to explore the initial experiences with andimpact of Parenting with Success and Satisfaction (PARSS), a psychiatric rehabilitation and recoverybased,guided self-help intervention, for parents with severe mental illnesses. Methods: Changes in the PARSS intervention group were compared with changes in a control group in a nonequivalent controlgroup design. Outcome measures included: parenting satisfaction reported by parents; parenting success reported by mental health practitioners and family members; empowerment as reported by parents, practitioners and family members; and parents’ reported quality of life. Additional process data were obtained on relationship with practitioner, quality of contact, satisfaction with the intervention and fidelity. Results: Parenting satisfaction increased after 1 year for the PARSS group, but not for the control group. Parents’ reports of empowerment did not change for either group. The scores of parents’ empowerment reported by practitioners and family members increased in the control group, with no such change in the PARSS group. Quality of life improved significantly for the intervention group. Process measures showed that, although PARSS was not always implemented as intended, both parents and practitioners expressed satisfaction with the intervention. Conclusions and Implications for Practice: The first experiences with PARSS were mixed. This intervention, implemented by mental health practitioners, has the potential to function as a useful tool for supporting parents. Attention must be paid to enhancing intervention implementation and fidelity.doi: 10.1037/prj0000067PMID: 24866839
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Abstract: Objective: The aim of this pilot implementation study was to explore the initial experiences with andimpact of Parenting with Success and Satisfaction (PARSS), a psychiatric rehabilitation and recoverybased,guided self-help intervention, for parents with severe mental illnesses. Methods: Changes in the PARSS intervention group were compared with changes in a control group in a nonequivalent controlgroup design. Outcome measures included: parenting satisfaction reported by parents; parenting success reported by mental health practitioners and family members; empowerment as reported by parents, practitioners and family members; and parents’ reported quality of life. Additional process data were obtained on relationship with practitioner, quality of contact, satisfaction with the intervention and fidelity. Results: Parenting satisfaction increased after 1 year for the PARSS group, but not for the control group. Parents’ reports of empowerment did not change for either group. The scores of parents’ empowerment reported by practitioners and family members increased in the control group, with no such change in the PARSS group. Quality of life improved significantly for the intervention group. Process measures showed that, although PARSS was not always implemented as intended, both parents and practitioners expressed satisfaction with the intervention. Conclusions and Implications for Practice: The first experiences with PARSS were mixed. This intervention, implemented by mental health practitioners, has the potential to function as a useful tool for supporting parents. Attention must be paid to enhancing intervention implementation and fidelity.doi: 10.1037/prj0000067PMID: 24866839
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Background: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifestations of MFS in children are thoroughly addressed in several studies, literature on the impact of MFS on daily functioning is restricted to pediatric advice on sports and leisure participation. Therefore, the full impact of MFS on daily functioning remains unclear. The aim of this qualitative study was to explore parents' perspectives on the impact of MFS on daily functioning of children with MFS aged 4-12 years, themselves and family regarding functional performance, activities, participation, personal and environmental factors, and disease burden. Methods: In this qualitative study parents participated in individual semi-structured interviews (n = 10) and 3 focus groups (n = 5, n = 5 and n = 6). Meetings were transcribed, and data were analyzed using thematic analysis. Meaningful concepts were coded, and concepts concerning children with MFS were linked to the International Classification of Functioning, Disability and Health for Children and Youth. Thereafter themes were identified and interpreted.Results: Parents reported their children could not keep up with peers because of fatigue, pain and physical impairments. Children experienced participation restrictions in school, sports, play and other leisure activities. Parents reported their child as being different due to physical appearance, which provoked unsupportive attitudes. Parental burden was caused by high care needs, lack of support, a limited social life, and concerns about the child's development. Family burden was caused by adjusted and complex family schedules, other family members with MFS, and reproductive planning decision-making, whereas family cohesiveness and caring were positively perceived factors. Conclusions: Parents perceived a large impact of MFS on daily functioning of their children with MFS, themselves and their family. More awareness among all professionals involved in the care of children with MFS and their families is needed so that professionals can address their support needs and provide tailored interventions, rehabilitation and/or educational programs to empower and improve daily functioning of the children, parents and family.
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Zelfregie, empowerment, patiënt centraal: in elk rapport over de zorg komen we deze woorden tegen. Maar hoe doe je dat eigenlijk als zorgprofessional? Het project COMPLETE richt zich op de samenwerking tussen ouders van jonge kinderen met ontwikkelingsstoornissen en zorgprofessionals. Deze samenwerking is een van de belangrijkste aspecten van interventie bij jonge kinderen. Logopedisten werken dagelijks met peuters met taalontwikkelingsstoornissen. Taaltherapie is kindgericht, waarbij de samenwerking met ouders vaak slechts beperkt is vormgegeven. Logopedisten geven aan handelingsverlegenheid te ervaren in de samenwerking met ouders. Zij weten niet hoe ze echte betrokkenheid en partnerschap tot stand kunnen brengen. Ouders herkennen de ervaringen van professionals. Zij ervaren variatie in de mate waarin zij betrokken worden bij therapie en willen versterkt worden in de mogelijkheden om de ontwikkeling van hun kind te stimuleren. Het belang van samenwerking volgt ook uit effectstudies. Voor succesvolle interventies moeten ouders een belangrijke rol spelen in de behandeling, empowered worden en eigen regie ervaren. De urgentie van deze vraag komt specifiek aan de orde in de kennisagenda Logopedie en ouderbetrokkenheid is onderdeel van het kwaliteitsbeleid van de beroepsvereniging. Het project COMPLETE wil bijdragen aan de vragen van logopedisten en ouders. Het project start met kwalitatief onderzoek naar de behoeften en ervaren barrières in samenwerking bij logopedist en ouders en een systematisch literatuuronderzoek naar deze aspecten. Deze aspecten worden omgezet naar actieve doelstellingen waarmee professionals de samenwerking kunnen verbeteren. In de volgende stappen ontwikkelen we in co-design tools die hierbij ondersteunen. Daarnaast gaan we op zoek naar bestaande tools die we samen met de praktijk op bruikbaarheid testen en aanpassen. Het project resulteert in een toolbox voor samenwerking tussen logopedisten en ouders van jonge kinderen. De uitkomsten en opbrengsten van dit project zijn ook relevant voor andere zorgprofessionals die werken met ouders van jonge kinderen met ontwikkelingsstoornissen.
GAMEHEARTS will seek to maximise the value of the European videogame industry ecosystems (hereafter, EVGIE) within a wider social context of the creative and cultural industries (hereafter, CCI). This will consider the importance of the EVGIE in contributing to economic growth, job creation, physical and mental wellbeing, and social and cultural cohesion, by particularly focusing on, how a stronger and closer working relationship between more the traditional and emergent cultural sectors, can work better to create more inclusive and socially responsible cultural experiences. The consortium will offer policy recommendations and roadmaps setting out how the EVGIE can and should develop, and where it could act as a driver for sustained innovation and economic growth. It will utilise an evidence-based approach that focuses not just on videogame development, but rather adopts a holistic ecosystem approach, utilising both established and more innovative methodologies, to consider the competitiveness and development of the EVGIE, and how videogame know-how and technologies could drive innovation in the wider CCI. In doing so, GAMEHEARTS will develop ‘ludic experiences’, to explore possibilities of more inclusive, engaging, and empowering cultural experiences. Working across seven work packages the universities of Salford (UK), Tampere (Finland), Vienna (Austria), Breda University of Applied Sciences (Netherlands), and Wroclaw University of Economics and Business (Poland) will work in parentship with Ubisoft (France) and other major videogame partners and associations (including the ISFE & EGDF) to explore current and future trends in the EVGIE.
The clubfoot deformity is one of the most common congenital orthopaedic “conditions”. Worldwide approximately 100,000 children are born with unilateral or bilateral clubfoot every year. In the Netherlands the incidence is approximately 175 every year. This three dimensional deformity of the foot involves, equinus, varus, adductus, and cavus . Left untreated the clubfoot leads to deformity, functional disability and pain. Physical impairments of children with clubfoot might lead to limitations in activities and therefore impede a child’s participation. In clinical practice, the orthopaedic surgeon and physiotherapists are regularly consulted by (parents of) clubfoot patients for functional problems such as impaired walking and other daily activities. This does not only affect long-term and physical health of a child, it will also affect the development of social relationships and skills as well. Since walking is a main activity in children to be able to participate in daily life, our previous study (financially supported by SIA Raak Publiek) focussed on gait differences between children with clubfoot and controls. However, differences in gait characteristics do not necessarily lead to functional limitations and restricted participation. Therefore, providing insight in participation and a child’s performance in other activities than walking is necessary. Insight in a child’s participation will also indicate the functional outcome of the treatment, which on its turn could provide essential information concerning a possible relapse.. Early identification of a relapse is important since it could prevent the need for major surgical interventions. The occurrence of a relapse clubfoot will probably also lead to functional differences in the foot as well as problems during activity and participation. Therefore, the main focus of this study is the functional outcomes of physical activities and the characterisation of participation of children with clubfeet in daily activities of childhood.
