Objective:The objective of this scoping review is threefold: (1) to describe outcomes of and determinants for physical functioning in pediatric intensive care unit (PICU) survivors evaluated during and/or after their PICU stay, (2) to provide an overview how physical functioning and its associated determinants in this population are reported, measured and classified in accordance with the International classification of Functioning, Disability and Health-Children and Youth framework (ICF-CY) components and (3) to synthesize key gaps in knowledge and research and clinical recommendations related to our review questions.Introduction:Optimal physical functioning in children is of major importance in their developmental trajectories and for the prevention and recovery of health problems across lifespan. PICU children are at high risk of poor physical functioning during and after critical illness. A recent overview of the literature, concerning evaluation of physical functioning in PICU survivors according to the ICF-CY components, is lacking. Inclusion criteria:This review includes empirical studies reporting outcomes and determinants of physical functioning in PICU survivors evaluated during and/or after PICU stay. All English language studies reporting empirical data will be included with no restrictions set on the types of study designs used.Methods:This review will be conducted in accordance with the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) statement. To locate studies eligible for inclusion, the electronic databases Pubmed, EMBASE, CINAHL and Cochrane Library will be searched from the earliest records to October 2019. Study selection will be performed by two independent reviewers. Covidence software will be used to screen titles and abstracts as well as the full-text of included studies. Data extraction will be conducted using a customized form. The extracted data will be presented in diagrammatic or tabular form with an accompanying narrative summary.
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Introduction: Although some adults with autism spectrum disorder (ASD) require intensive and specialized ASD treatment, there is little research on how these adults experience the recovery process. Recovery is defined as the significant improvement in general functioning compared to the situation prior to treatment. Methods: This qualitative study describes the recovery process from the perspective of adults on the autism spectrum during intensive inpatient treatment. Semi-structured interviews (n = 15) were carried out and analyzed according to the principles of grounded theory. Results: Our results indicate that, given the specific characteristics of autism, therapeutic interventions and goal-oriented work cannot be carried out successfully, and the recovery process cannot begin, if no good working relationship has been established, and if care is not organized in ways that a person on the autism spectrum finds clear and predictable.
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Abstract: Background Non-compliance to, or drop-out from treatment for childhood ADHD, result in suboptimal outcome. Non-compliance and drop-out may be due to mismatches between patients’ care needs and treatments provided. This study investigated unmet care needs in ADHD patients. Unmet needs were assessed in two different treatment settings (general outpatient setting versus youth-ACT). Youth-ACT treatment is an intensive outreach-oriented treatment for patients with severe psychiatric and psychosocial problems. Comparison of a general outpatient sample with a youth-ACT sample enabled us to assess the influence of severity of psychiatric and psychosocial problems on perceived care needs. Methods Self-reported unmet care needs were assessed among 105 ADHD patients between 6 and 17 years of age in a general outpatient (n = 52) and a youth-ACT setting (n = 53).
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Objectives: To conduct a scoping review to 1) describe findings and determinants of physical functioning in children during and/or after PICU stay, 2) identify which domains of physical functioning are measured, 3) and synthesize the clinical and research knowledge gaps.Data Sources: A systematic search was conducted in PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature, and Cochrane Library databases following the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews guidelines.Study Selection: Two investigators independently screened and included studies against predetermined criteria.Data Extraction: One investigator extracted data with review by a second investigator. A narrative analyses approach was used.Data Synthesis: A total of 2,610 articles were identified, leaving 68 studies for inclusion. Post-PICU/hospital discharge scores show that PICU survivors report difficulties in physical functioning during and years after PICU stay. Although sustained improvements in the long-term have been reported, most of the reported levels were lower compared with the reference and baseline values. Decreased physical functioning was associated with longer hospital stay and presence of comorbidities. A diversity of instruments was used in which mobility and self-care were mostly addressed.CONCLUSIONS: The results show that children perceive moderate to severe difficulties in physical functioning during and years after PICU stay. Longitudinal assessments during and after PICU stay should be incorporated, especially for children with a higher risk for poor functional outcomes. There is need for consensus on the most suitable methods to assess physical functioning in children admitted to the PICU.
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The number of people who combine work and unpaid care is increasing rapidly as more people need care, public and private care systems are progressively under pressure and more people are required to work for longer. Without adequate support, these working carers may experience detrimental effects on their well-being. To adequately support working carers, it is important to first understand the challenges they face. A scoping review was carried out, using Arksey and O’Malley's framework, to map the challenges of combining work and care and solutions described in the literature to address these challenges. The search included academic and grey literature between 2008 and 2018 and was conducted in April 2018, using electronic academic databases and reference list checks. Ninety-two publications were mapped, and the content analysed thematically. A conceptual framework was derived from the analysis which identified primary challenges (C1), directly resulting from combining work and care, primary solutions (S1) aiming to address these, secondary challenges (C2) resulting from solutions and secondary solutions (S2) aiming to address secondary challenges. Primary challenges were: (a) high and/or competing demands; (b) psychosocial/-emotional stressors; (c) distance; (d) carer's health; (e) returning to work; and (f) financial pressure. This framework serves to help those aiming to support working carers to better understand the challenges they face and those developing solutions for the challenges of combining work and care to consider potential consequences or barriers. Gaps in the literature have been identified and discussed.
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Introduction: There is a lack of effective interventions available for Pediatric Physical Therapists (PPTs) to promote a physically active lifestyle in children with physical disabilities. Participatory design methods (co-design) may be helpful in generating insights and developing intervention prototypes for facilitating a physically active lifestyle in children with physical disabilities (6–12 years). Materials and methods: A multidisciplinary development team of designers, developers, and researchers engaged in a co-design process–together with parents, PPTs, and other relevant stakeholders (such as the Dutch Association of PPTs and care sports connectors). In this design process, the team developed prototypes for interventions during three co-creation sessions, four one-week design sprint, living-lab testing and two triangulation sessions. All available co-design data was structured and analyzed by three researchers independently resulting in themes for facilitating physical activity. Results: The data rendered two specific outcomes, (1) knowledge cards containing the insights collected during the co-design process, and (2) eleven intervention prototypes. Based on the generated insights, the following factors seem important when facilitating a physically active lifestyle: a) stimulating self-efficacy; b) stimulating autonomy; c) focusing on possibilities; d) focusing on the needs of the individual child; e) collaborating with stakeholders; f) connecting with a child's environment; and g) meaningful goal setting. Conclusion: This study shows how a co-design process can be successfully applied to generate insights and develop interventions in pediatric rehabilitation. The designed prototypes facilitate the incorporation of behavioral change techniques into pediatric rehabilitation and offer new opportunities to facilitate a physically active lifestyle in children with physical disabilities by PPTs. While promising, further studies should examine the feasibility and effectivity of these prototypes.
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In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding of the dimensions that affect how medical care is shared and how healthcare professionals can align care with family needs. The study design was inspired by grounded theory. We analyzed in-depth interviews with 25 Dutch parents. The analysis identified five dimensions affecting how parents and professionals shared and aligned medical care: fragility, planned care, irregularities, interactions with providers, and parents’ choices. We recognized three distinctive ways these dimensions interplayed, characterizing scenarios of sharing care: dependent care, dialogical care, and autonomous care. The findings illuminated that parental distress decreased when parents could communicate about what they considered important for their child and family and its implications for sharing care. Parents developed their capacity to manage medical care and often evolved in their thinking about the quality of care and life. Sometimes this evolution was due to struggles with the care provided by professionals. Therefore, healthcare professionals may need to broaden the relational work of shared decision-making to include the sharing of medical care. Arrangements need to be continually reassessed as changes in the child’s and family’s situation trigger changes in preferred patterns of sharing care. Commitment to parents’ autonomy implies that healthcare professionals should be attentive to the parents’ emotional and relational needs.
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Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each other's frames of reference and underlying values seems important. Wonder Lab practices provide a space to explore these differences by focusing together on life phenomena in curious and Socratic ways. Wonder Labs were organised with parents, healthcare professionals, and students involved in Dutch paediatric palliative care. The aim of this study was to develop an understanding of how participants experienced participating in Wonder Labs. We conducted twenty in-depth interviews with Wonder Lab participants and used inductive thematic analysis for data interpretation. Five themes were identified: Slowing down, Appreciating stories, Becoming vulnerable, Opening up and diving in, and Reframing perspectives. Participating in Wonder Labs allowed mothers, healthcare professionals, and students to contribute to deepening experiences and gain an expanded understanding of what is at play in caring for children with life-limiting and life-threatening conditions. Through working in pluralised groups, frames of reference and understandings complemented each other and could change. Participants often adopted a more open attitude towards others involved in care after participating and adapted day-to-day practices. Deliberating within paediatric palliative care on sensitive issues and their underlying personal and professional beliefs and values must be part of working together, without specific care situations being the catalyst. This may foster the mutual understanding needed in searching for quality of life, death, and bereavement.
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Abstract Purpose In mental health care, patients and their care providers may conceptualize the nature of the disorder and appropriate action in profoundly diferent ways. This may lead to dropout and lack of compliance with the treatments being provided, in particular in young patients with more severe disorders. This study provides detailed information about patient–provider (dis)agreement regarding the care needs of children and adolescents. Methods We used the Camberwell Assessment of Need (CANSAS) to assess the met and unmet needs of 244 patients aged between 6 and 18 years. These needs were assessed from the perspectives of both patients and their care providers. Our primary outcome measure was agreement between the patient and care provider on unmet need. By comparing a general outpatient sample (n=123) with a youth-ACT sample (n=121), we were able to assess the infuence of severity of psychiatric and psychosocial problems on the extent of agreement on patient’s unmet care needs. Results In general, patients reported unmet care needs less often than care providers did. Patients and care providers had the lowest extents of agreement on unmet needs with regard to “mental health problems” (k=0.113) and “information regarding diagnosis/treatment” (k=0.171). Comparison of the two mental healthcare settings highlighted diferences for three-quarters of the unmet care needs that were examined. Agreement was lower in the youth-ACT setting. Conclusions Clarifcation of diferent views on patients’ unmet needs may help reduce nonattendance of appointments, noncompliance, or dropout. Routine assessment of patients’ and care providers’ perceptions of patients’ unmet care needs may also help provide information on areas of disagreement.
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Abstract Background: Approximately one-third of all patients with schizophrenia are treatment resistant. Worldwide, undertreatment with clozapine and other effective treatment options exist for people with treatment-resistant schizophrenia (TRS). In this respect, it appears that regular health care models do not optimally fit this patient group. The Collaborative Care (CC) model has proven to be effective for patients with severe mental illness, both in primary care and in specialized mental health care facilities. The key principles of the CC model are that both patients and informal caregivers are part of the treatment team, that a structured treatment plan is put in place with planned evaluations by the team, and that the treatment approach is multidisciplinary in nature and uses evidence-based interventions. We developed a tailored CC program for patients with TRS. Objective: In this paper, we provide an overview of the research design for a potential study that seeks to gain insight into both the process of implementation and the preliminary effects of the CC program for patients with TRS. Moreover, we aim to gain insight into the experiences of professionals, patients, and informal caregivers with the program. Methods: This study will be underpinned by a multiple case study design (N=20) that uses a mixed methods approach. These case studies will focus on an Early Psychosis Intervention Team and 2 Flexible Assertive Community treatment teams in the Netherlands. Data will be collected from patient records as well as through questionnaires, individual interviews, and focus groups. Patient recruitment commenced from October 2020. Results: Recruitment of participants commenced from October 2020, with the aim of enrolling 20 patients over 2 years. Data collection will be completed by the end of 2023, and the results will be published once all data are available for reporting. Conclusions: The research design, framed within the process of developing and testing innovative interventions, is discussed in line with the aims of the study. The limitations in clinical practice and specific consequences of this study are explained.
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