Strategies Used by Professionals in Pediatric Rehabilitation to Engage the Child in the Intervention Process: A Scoping Review.

AIM: To investigate strategies used by professionals in pediatric rehabilitation to engage children in every step of the intervention process, including assessment, goal setting, planning and implementation of the intervention, and results evaluation. METHODS: A scoping literature review was conducted, and seven databases were searched, including CINAHL and MEDLINE, ProQuest Central, PsycINFO, Social Science Premium Collection, PubMed, and Web of Science. A citation search of included articles was completed. Predetermined criteria, quality standards, and PIO framework guided the selection process. Results were presented in relation to Self-Determination Theory (SDT) and the contextual model of therapeutic change. RESULTS: In total, 20 studies were included in the review. Pediatric professionals reported that therapeutic use of self and their own engagement in the intervention facilitated the establishment of a supportive relationship. Providing clear explanations about their role and therapy rationale developed positive expectations. By making the child feel successful within-session and outside-session activities, professionals enhanced child mastery. Professionals' strategies were abstractly described. CONCLUSIONS: Further research is needed to investigate strategies that are effective in the different steps of the intervention. More observational, longitudinal studies are required to capture fluctuations in in-session engagement.

Structural validity and internal consistency of the Strengths and Stressors in Parenting (SSF) Questionnaire in parents of children with developmental disabilities.

The current study investigated the structural validity and internal consistency of the Strengths and Stressors (SSF) questionnaire. The SSF is used in Swedish habilitation services to measure the positive and negative consequences that the fostering of a child with a developmental disability can have on family functioning in six domains: parent's feelings and attitudes, social life, family finances, relationship to the other parent, siblings, and professional support. The proposed six-factor model was tested with confirmatory factor analysis with data collected from 291 parents of children with developmental disabilities. The six-factor model had an acceptable fit according to most fit indices, but two items were non-significant. Overall, the internal consistency was acceptable or good. The SSF, with the proposed six-factor solution, can be a useful tool when assessing parental perspectives on the impacts of having a child with a developmental disability in clinical settings and research.

Congenitally decorticate children's potential and rights.

This article is the first indepth ethical analysis of empirical studies that support the claim that children born without major parts of their cerebral cortex are capable of conscious experiences and have a rudimentary capacity for agency. Congenitally decorticate children have commonly been classified as persistently vegetative, with serious consequences for their well-being and opportunities to flourish. The paper begins with an explication of the rights-based normative framework of the argument, including conceptual analysis of the terms 'agency', 'potentiality for agency' and 'gradual approach of agency'. It critically examines Alan Gewirth's account of the criteria for being a rights bearer and principles for settling rights conflicts between agents and potential agents. It then applies the rights-based normative framework to the ethical challenges associated with care for congenitally decorticate children. It argues that recent empirical studies support the claim that the concepts 'potential for agency' and 'capacity for rudimentary agency' apply to children who are born without major parts of their cerebral cortex. The article finally discusses important medical ethical implications of these results. It specifically focuses on congenitally decorticate children's preparatory rights to a stimulating intellectual and social environment.

Substituted decision making and the dispositional choice account.

There are two main ways of understanding the function of surrogate decision making in a legal context: the Best Interests Standard and the Substituted Judgment Standard. First, we will argue that the Best Interests Standard is difficult to apply to unconscious patients. Application is difficult regardless of whether they have ever been conscious. Second, we will argue that if we accept the least problematic explanation of how unconscious patients can have interests, we are also obliged to accept that the Substituted Judgment Standard can be coherently applied to patients who have never been conscious at the same extent as the Best Interests Standard. We then argue that acknowledging this result is important in order to show patients respect.

Priority rules as solutions to conflicting health care rights.

Recent health legislation in Norway significantly increases access to specialist care within a legally binding time frame. The paper describes the contents of the new legislation and introduces some of the challenges with proliferations of rights to health care. The paper describes some of the challenges associated with the proliferation of legal rights to health care. It explains the benefits of assessing the new law in the light of a rights framework. It then analyses the problematic aspects of establishing additional priority rules as solutions to rights conflicts. It then defends adequacy criteria for acceptable priority rules when such rules are unavoidable. It finally defends our proposed method and explores concrete applications.

Challenging the principle of proportionality.

The first objective of this article is to examine one aspect of the principle of proportionality (PP) as advanced by Alan Gewirth in his 1978 bookReason and Morality Gewirth claims that being capable of exercising agency to some minimal degree is a property that justifies having at least prima facie rights not to get killed. However, according to the PP, before the being possesses the capacity for exercising agency to that minimal degree, the extent of her rights depends on to what extent she approaches possession of agential capacities. One interpretation of PP holds that variations in degree of possession of the physical constitution necessary to exercise agency are morally relevant. The other interpretation holds that only variations in degree of actual mental capacity are morally relevant. The first of these interpretations is vastly more problematic than the other. The second objective is to argue that according to the most plausible interpretation of the PP, the fetus' level of development before at least the 20th week of pregnancy does not affect the fetus' moral rights status. I then suggest that my argument is not restricted to such fetuses, although extending my argument to more developed fetuses requires caution.

Self-rating via video communication in children with disability - a feasibility study.

Background: Different barriers may hinder children with developmental disabilities (DD) from having a voice in research and clinical interventions concerning fundamentally subjective phenomena, such as participation. It is not well-investigated if video communication tools have the potential to reduce these barriers. Aim: This study investigated the feasibility of administering a self-rating instrument measuring participation, Picture My Participation (PmP), via a video communication tool (Zoom), to children with DD. Materials and methods: PmP was administered to 17 children with DD (mean age 13 years). The pictorial representations of activities and response options in PmP were displayed in a shared PowerPoint presentation, enabling nonverbal responses with the annotate function in Zoom. Child and interviewer perceptions of the interview were measured through questionnaires developed for the purpose. Results: All the children completed the interview. Most PmP questions were answered, and no adverse events were registered. Technical issues could generally be solved. No special training or expensive equipment was needed for the interviews. Conclusion: Interviewer-guided self-ratings of participation and related constructs through video communication may be a feasible procedure to use with children with DD from age 11. Significance: Offering video communication may increase children's chances to contribute subjective experiences in research and clinical practice.

Meaningful everyday life situations from the perspective of children born preterm: A photo-elicitation interview study with six-year-old children.

AIM: The aim of the study was to explore meaningful everyday life situations as perceived by six-year-old children born preterm. MATERIALS AND METHODS: The study had a descriptive qualitative design with an inductive approach. Ten, six-year-old children born preterm, not diagnosed with any disabilities, participated. Data was collected by photo-elicitation interviews to stimulate and help the children to describe their meaningful everyday life situations. A qualitative content analysis according to Elo and Kyngäs was applied. RESULTS: The children's descriptions of meaningful everyday life situations can be understood as being in an active and dynamic process, representing the core category. The analysis resulted in three generic categories, as the children described the significance of having significant circumstances and doing things. The experiences the children gain when they do things create their desire for further development. DISCUSSION: The results reveal that children born preterm are able to reflect on and give detailed descriptions of situations of importance to them. The study suggests that if six-year-old children born preterm are given the opportunity to share their views they can take an active role e.g. in planning and carrying through of interventions by health care services.

Testing the Assumptions in the Process of Cultural Competence in the Delivery of Healthcare Services Using Empirical Data, Focusing on Cultural Awareness.

INTRODUCTION: Encounters with children of foreign origin call for school nurses' cultural competence during the health visits. This study aimed to investigate the statistical associations between the cultural constructs described by the Process of Cultural Competence in the Delivery of Healthcare Services (PCCDHS) model and whether school nurses' cultural encounters, cultural knowledge, and cultural skill could statistically predict their cultural awareness. METHODOLOGY: Spearman correlation and hierarchical regression analyses were conducted using cross-sectional secondary data from 816 Swedish school nurses. The cultural constructs in the theoretical description of the PCCDHS model guided the selection and sorting of the items on cultural competence. RESULTS: The constructs of cultural knowledge, cultural skill, cultural encounters, and cultural awareness were positively correlated with each other. However, becoming culturally aware was not statistically predicted by included cultural constructs (R2 = 13.4, p = .06). DISCUSSION: Despite the interrelations between the investigated cultural constructs of the PCCDHS model, understanding cultural awareness development requires further empirical testing.

HIV testing of pregnant women: an ethical analysis.

Recent global advances in available technology to prevent mother-to-child HIV transmission necessitate a rethinking of contemporary and previous ethical debates on HIV testing as a means to preventing vertical transmission. In this paper, we will provide an ethical analysis of HIV-testing strategies of pregnant women. First, we argue that provider-initiated opt-out HIV testing seems to be the most effective HIV test strategy. The flip-side of an opt-out strategy is that it may end up as involuntary testing in a clinical setting. We analyse this ethical puzzle from a novel perspective, taking into account the moral importance of certain hypothetical preferences of the child, as well as the moral importance of certain actual preferences of the mother. Finally, we balance the conflicting concerns and try to arrive at an ethically sound solution to this dilemma. Our aim is to introduce a novel perspective from which to analyse testing strategies, and to explore the implications and possible benefits of our proposal. The conclusion from our analysis is that policies that recommend provider-initiated opt-out HIV testing of pregnant mothers, with a risk of becoming involuntary testing in a clinical setting, are acceptable. The rationale behind this is that the increased availability of very effective and inexpensive life-saving drugs makes the ethical problems raised by the possible intrusiveness of HIV testing less important than the child's hypothetical preferences to be born healthy. Health care providers, therefore, have a duty to offer both opt-out HIV testing and available PMTCT (preventing mother-to-child transmission) interventions.

Embryonic stem cells and property rights.

This article contributes to the current debate on human embryonic stem cell researchers' possible complicity in the destruction of human embryos and the relevance of such complicity for the issue of commodification of human embryos. I will discuss if, and to what extent, researchers who destroy human embryos, and researchers who merely use human embryos destroyed by others, have moral use rights, and/or moral property rights, in these embryos. I argue that the moral status of the human embryo, however justified, places few restrictions on the latter researchers' use of it, and property rights in it, once it is destroyed. I argue that the former researchers have no property rights in the destroyed embryo but use rights in it to the extent allowed by the legitimate owners of the destroyed embryo. I discuss the implications of this account for previous and current US federal law regulating human embryonic stem cell research.

Definitions and Operationalization of Mental Health Problems, Wellbeing and Participation Constructs in Children with NDD: Distinctions and Clarifications.

Children with impairments are known to experience more restricted participation than other children. It also appears that low levels of participation are related to a higher prevalence of mental health problems in children with neurodevelopmental disorders (NDD). The purpose of this conceptual paper is to describe and define the constructs mental health problems, mental health, and participation to ensure that future research investigating participation as a means to mental health in children and adolescents with NDD is founded on conceptual clarity. We first discuss the difference between two aspects of mental health problems, namely mental disorder and mental illness. This discussion serves to highlight three areas of conceptual difficulty and their consequences for understanding the mental health of children with NDD that we then consider in the article: (1) how to define mental health problems, (2) how to define and assess mental health problems and mental health, i.e., wellbeing as separate constructs, and (3) how to describe the relationship between participation and wellbeing. We then discuss the implications of our propositions for measurement and the use of participation interventions as a means to enhance mental health (defined as wellbeing). Conclusions: Mental disorders include both diagnoses related to impairments in the developmental period, i.e., NDD and diagnoses related to mental illness. These two types of mental disorders must be separated. Children with NDD, just like other people, may exhibit aspects of both mental health problems and wellbeing simultaneously. Measures of wellbeing defined as a continuum from flourishing to languishing for children with NDD need to be designed and evaluated. Wellbeing can lead to further participation and act to protect from mental health problems.

Agreement between participation ratings of children with intellectual disabilities and their primary caregivers.

BACKGROUND: Participation of children with ID it is argued must be understood in relation to the fit with the environment. Since caregivers are a vital factor within the close environment of a child with intellectual disability, their perceptions are unequivocally important. AIMS: The main aim of this study is to describe the self-reported participation of children with ID and the perceptions of their primary caregivers. Both frequency of attendance and perceived importance of activity was measured with self-reported and proxy-reports. METHODS & PROCEDURES: A custom developed Picture my Participation (PmP) survey was utilised in an interview format with children with intellectual disability whilst their primary caregivers completed the survey independently. RESULTS: Overall, the perceptions of children with intellectual disabilities and of primary caregivers showed similarities regarding attendance and activities considered important. On group level, both children and primary caregivers perceived the child to have a high level of attendance ofFormal learning in school, Family mealtime, Interacting with family and Celebrations. An overall poor agreement in perceived frequency of attendance was found. However, in child-primary cargiver-dyads poor agreement in perceived frequency of attendance was found. CONCLUSIONS: While primary caregivers and children's ratings of attendance and selection of the most important activities appeared somewhat similar, there was a noted difference, in that primary caregivers' were uniform in their selection, whilst there was a diversity in the selection of activities amongst children.

Patterns of everyday functioning in preschool children born preterm and at term.

BACKGROUND/AIM: Children born preterm are at risk of neonatal complications but the long-term consequences for everyday functioning is not well known. The study aimed to identify patterns of everyday functioning in preschool children born preterm and at term in relation to perinatal data, neonatal risk factors, behaviour, and socioeconomic status. Registry data and data from parent rated questionnaires were collected for 331 children. METHOD: A person-oriented approach with a cluster analysis was used. RESULTS: A seven cluster solution explained 65.91% of the variance. Most children (n=232) showed patterns of strong everyday functioning. A minority of the children (n=99), showed diverse patterns of weak everyday functioning. Perinatal characteristics, neonatal risk factors and socio-economics did not predict cluster group membership. Children born preterm were represented in all clusters. CONCLUSION, IMPLICATIONS: Most preschool children are perceived by their parents with strong everyday functioning despite being born preterm. However small groups of children are, for various reasons, perceived with weak functioning, but preterm birth is not the sole contributor to patterns of weak everyday functioning. More critical for all children's everyday functioning is probably the interaction between individual factors, behavioural factors and contextual factors. To gain a broader understanding of children's everyday functioning. Child Health Services need to systematically consider aspects of body function, activity and in addition participation and environmental aspects.

Triage in the emergency department--a qualitative study of the factors which nurses consider when making decisions.

Triage, as a concept, is relatively new in Sweden and means 'sorting'. The triage process was developed to grade patients who needed immediate care. Triage is currently important for the emergency treatment system, and nurses are expected to work with it professionally. The aim of this study is to describe how nurses implement triage when patients arrive at the emergency department of a county hospital, situated in a rural area of Sweden, as well as to highlight the factors considered when prioritizing, in connection with nurses' decision-making. The method used was observations of 19 nurses, with minimal disturbance in their triage work, followed by a short tape-recorded interview, during which the nurses were asked to reflect upon their decision of priorities. Qualitative content analysis of data has been used. The results were divided into two areas, internal factors and external factors. The internal factors reflect the nurse skills and personal capacity. The external factors reflect work environment, including high workload and practical arrangements, and should always be perceived and taken into consideration. Using these factors as a basis, the patients' clinical condition, clinical history, various examinations and tests form an assessment, which subsequently results in a prioritization.