Introduction The Integrated Recovery Scales (IRS) was developed by the Dutch National Expertise board for routine outcome monitoring with severe mental illnesses. This board aimed to develop a multidimensional recovery measure directed at 1. clinical recovery, 2. physical health, 3. social recovery (work, social contacts, independent living) and 4. existential, personal recovery. The measure had to be short, suited for routine outcome monitoring and present the perspective of both mental health professionals and service users with severe mental illnesses. All aspects are assessed over a period of the pas 6 months. Objectives The objective of this research is validation of the Integral Recovery Scales and to test the revelance for clinical practice and police evaluation. Methods The instrument was tested with 500 individuals with severe mental illnesses (80% individuals with a psychotic disorder), of whom 200 were followed up for 1 year. For the questions concerning clinical recovery, physical health and social recovery mental health care workers conducted semi structured interviews with people living with serious illnesses. The questions concerning personal health were self-rated. We analyzed interrater reliability, convergent and divergent validity and sensitivity to change. Results The instrument has a good validity and is easy to complete for service users and mental health care workers and appropriate for clinical and policy evaluation goals. Conclusions The Integrated Recovery Scales can be a useful instrument for a simple and meaningful routine outcome monitoring. Page: 121
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Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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Background Parenting a child with profound intellectual and multiple disabilities has great implications. Parents generally rely heavily on healthcare and social welfare services in caring for the child at home. Previous studies indicated mismatch between what parents need to preserve family and personal wellbeing and what is typically provided by services. This study focused on the role of healthcare and social welfare services in childcare and aims to contribute to understanding how parents perceive their interactions with service providers. Methods We interviewed 25 Dutch parents who cared for their child at home. Data were analysed using Framework Method. Findings Two overarching themes were found: “Being the lifeline” addressed that parents had central roles in fragmented services, and “Losing ownership” highlighted that parents were constrained in living life according to own beliefs and values while interacting with providers. Conclusions Findings illuminated that many parents became overburdened and compromised heavily on agency over family thriving due to functioning of healthcare and social welfare services. Findings supported working with integrated family case managers, creating effective and proactive access to equipment and services, and enacting high quality facilities for help with childcare and respite. These are important conditions to enable parents to construct family life more autonomously and make their further contribution to society. This may also lead to improved connotations of dependence on healthcare and social welfare services.
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Integrating knowledge and expertise from designers and scientists proposes solutions to complex problems in a flexible and open-minded way. However, little insight is available in how this collaboration works. Therefore, we reflected on a research project aimed at supportive care interventions for child oncology, and detected barriers and enablers for effective designer scientist collaboration. We interviewed medical scientists (n=2), designers (n=5), health care professionals (n=2), design students (n=3), and one design innovation-expert. Enablers appeared a receptive attitude towards innovation, and shared terminology facilitated by participatory design tools, internal communication means, and common goals. Largest barrier was unstable team membership. Future collaborative research projects might benefit when preventing barriers and stimulating enablers.
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The unexpected death of a child is one of the most challenging losses as it fractures survivors’ sense of parenthood and other layers of identity. Given that not all the bereaved parents who have need for support respond well to available treatments and that many have little access to further intervention or follow-up over time, online interventions featuring therapeutic writing and peer support have strong potential. In this article we explore how a group of bereaved mothers experienced the process of participating in an online course in therapeutic writing for the integration of grief. Our research questions were: How do parents who have lost a child experience being part of an online course in therapeutic writing? What are the perceived benefits and challenges of writing in processing their grief? We followed an existential phenomenological approach and analyzed fieldwork notes (n = 13), qualitative data from the application and assessment surveys (n = 35; n = 21), excerpts from the journals of some participants (n = 3), and email correspondence with some participants (n = 5). We categorized the results in three meaning units: (1) where does my story begin? The “both and” of their silent chaos; (2) standing on the middle line: a pregnancy that does not end; (3) closures and openings: “careful optimism” and the need for community support. Participants experienced writing as an opportunity for self-exploration regarding their identities and their emotional world, as well as a means to develop and strengthen a bond with their children. They also experienced a sense of belonging, validation, and acceptance in the online group in a way that helped them make sense of their suffering. Online writing courses could be of benefit for bereaved parents who are grieving the unexpected death of a child, but do not replace other interventions such as psychotherapy. In addition to trauma and attachment informed models of grief, identity informed models with a developmental focus might enhance the impact of both low-threshold community interventions and more intensive clinical ones. Further studies and theoretical development in the area are needed, addressing dialogical notions such as the multivoicedness of the self. Lehmann OV, Neimeyer RA, Thimm J, Hjeltnes A, Lengelle R and Kalstad TG (2022) Experiences of Norwegian Mothers Attending an Online Course of Therapeutic Writing Following the Unexpected Death of a Child. Front. Psychol. 12:809848. doi: 10.3389/fpsyg.2021.809848
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Online support communities are gaining attention among child-attracted persons (CAPs). Though research has largely focused on the negative consequences these environments create for potential offending, they may also provide a beneficial alternative to more formal treatment settings. To assess the utility for clinical and therapeutic purposes, this analysis focused on subcultural dynamics to examine self-reported wellbeing outcomes of participation in a Dutch forum for CAPs. A total of 15 semi-structured interviews were conducted with moderators, members and mental health professionals involved in the community. Thematic analyses demonstrated that by means of informal social control, bonds of trust and social relational education, the network aims to regulate the behavior and enhance the wellbeing of its marginalized participants. Key outcomes include a decreased sense of loneliness and better coping with stigma, to the point that participants experience less suicidal thoughts. Association with prosocial peers also helps to set moral boundaries regarding behavior towards children, although we cannot fully rule out potential adverse influences. Online support networks offer a stepping stone to professional care that fits individual needs of CAPs, while also providing an informal environment that overcomes limitations of physical therapy and that extents principles of existing prevention and desistance approaches. Gepubliceerd door uitgever Sage: Bekkers, L. M. J., Leukfeldt, E. R., & Holt, T. J. (2024). Online Communities for Child-Attracted Persons as Informal Mental Health Care: Exploring Self-Reported Wellbeing Outcomes. Sexual Abuse, 36(2), 158-184. https://doi.org/10.1177/10790632231154882
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Introduction: In March 2014, the New South Wales (NSW) Government (Australia) announced the NSW Integrated Care Strategy. In response, a family-centred, population-based, integrated care initiative for vulnerable families and their children in Sydney, Australia was developed. The initiative was called Healthy Homes and Neighbourhoods. A realist translational social epidemiology programme of research and collaborative design is at the foundation of its evaluation. Theory and Method: The UK Medical Research Council (MRC) Framework for evaluating complex health interventions was adapted. This has four components, namely 1) development, 2) feasibility/piloting, 3) evaluation and 4) implementation. We adapted the Framework to include: critical realist, theory driven, and continuous improvement approaches. The modified Framework underpins this research and evaluation protocol for Healthy Homes and Neighbourhoods. Discussion: The NSW Health Monitoring and Evaluation Framework did not make provisions for assessment of the programme layers of context, or the effect of programme mechanism at each level. We therefore developed a multilevel approach that uses mixed-method research to examine not only outcomes, but also what is working for whom and why.
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Background: Early childhood caries is considered one of the most prevalent diseases in childhood, affecting almost half of preschool-age children globally. In the Netherlands, approximately one-third of children aged 5 years already have dental caries, and dental care providers experience problems reaching out to these children. Objective: Within the proposed trial, we aim to test the hypothesis that, compared to children who receive usual care, children who receive the Toddler Oral Health Intervention as add-on care will have a reduced cumulative caries incidence and caries incidence density at the age of 48 months. Methods: This pragmatic, 2-arm, individually randomized controlled trial is being conducted in the Netherlands and has been approved by the Medical Ethics Research Board of University Medical Center Utrecht. Parents with children aged 6 to 12 months attending 1 of the 9 selected well-baby clinics are invited to participate. Only healthy children (ie, not requiring any form of specialized health care) with parents that have sufficient command of the Dutch language and have no plans to move outside the well-baby clinic region are eligible. Both groups receive conventional oral health education in well-baby clinics during regular well-baby clinic visits between the ages of 6 to 48 months. After concealed random allocation of interventions, the intervention group also receives the Toddler Oral Health Intervention from an oral health coach. The Toddler Oral Health Intervention combines behavioral interventions of proven effectiveness in caries prevention. Data are collected at baseline, at 24 months, and at 48 months. The primary study endpoint is cumulative caries incidence for children aged 48 months, and will be analyzed according to the intention-to-treat principle. For children aged 48 months, the balance between costs and effects of the Toddler Oral Health Intervention will be evaluated, and for children aged 24 months, the effects of the Toddler Oral Health Intervention on behavioral determinants, alongside cumulative caries incidence, will be compared. Results: The first parent-child dyads were enrolled in June 2017, and recruitment was finished in June 2019. We enrolled 402 parent-child dyads. Conclusions: All follow-up interventions and data collection will be completed by the end of 2022, and the trial results are expected soon thereafter. Results will be shared at international conferences and via peer-reviewed publication.
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