Perceptions and behaviors of healthcare providers towards rehabilitation support to children with severe malaria-related disability in Ethiopia: A qualitative descriptive study using the Theoretical Domains Framework.

INTRODUCTION: Severe malaria often results in childhood disability. The prevalence of disability related to severe malaria is significant and is estimated to affect up to 53% of severe malaria survivors. In contrast, information is sparse about how healthcare providers in Africa think about or provide rehabilitation support in acute and post-acute phases respectively. Understanding the perceptions and behaviors of healthcare providers treating malaria could help inform malaria-related disability research, policy, and practice, aimed at the providers themselves. This study explored the perceptions and behaviors of healthcare providers towards rehabilitation for children with severe malaria-related disability. The Theoretical Domains Framework was used to describe the findings relative to wider literature on health provider behavior change. METHODS: A qualitative descriptive approach was used to interview thirteen healthcare providers recruited purposively based on their clinical professions, roles, and settings. Data were analyzed using directed content analysis. We decided on the most prominent theoretical domains considering the frequency of specific perceptions and behaviors across the participants, the frequency of perceptions and behaviors in each domain, and evidence of strong perceptions and behaviors. RESULTS: Nine out of fourteen theoretical domains were identified. These domains were: Beliefs about consequences, environmental context and resources, goals, knowledge, skills, optimism, reinforcement, social influences, and social or professional role and identity. Healthcare providers' beliefs about their roles in screening for disability or referring to rehabilitation were less positive. CONCLUSIONS: The findings of this study suggest the need for interventions to support healthcare providers in acute phases (prevention and control of severe malaria) and post-acute phases (disability screening, referral, and rehabilitation care). Recommended interventions should focus on developing clinical guidelines, training clinicians, addressing institutional factors, and modifying external social influences such as socio-cultural factors.

Mental health of caregivers of children with medical complexity: group-based trajectory modelling.

OBJECTIVE: To describe the mental health trajectories of caregivers of children with medical complexity (CMC) and explore child characteristics associated with below-average caregiver mental health. DESIGN: A secondary analysis of prospectively collected data from 123 caregivers of children aged <16 years with medical complexity from a multicentre randomised trial conducted from December 2016 to June 2021. MAIN OUTCOME MEASURE: The Patient-Reported Outcomes Measurement Information System Global Mental Health Scale was used to measure caregivers' self-reported mental health well-being. Group-based trajectory analysis was used to identify clusters of caregivers with similar changes in mental health across 24 months. Logistic regression was used to identify child-related predictors of mental health among caregivers. RESULTS: A final model with three distinct groups was selected, corresponding to caregivers with average (n=39), moderately below-average (n=65) and severely below-average (n=19) mental health scores, all with stable trajectories and high posterior probabilities (>90%). Moderately and severely below-average caregiver mental health groups, merged into one group, were associated with a greater number of child medical technology devices (adjusted OR (aOR) 1.44, 95% CI 1.01 to 2.04), gross motor difficulties (aOR 3.51, 95% CI 1.02 to 12.05) and worse child emotional (aOR 0.93, 95% CI 0.87 to 0.99) and psychological well-being (aOR 0.93, 95% CI 0.88 to 0.99). CONCLUSION: Most caregivers of CMC reported persistently below-average mental health. The intensity of caregiving, as indicated by medical technology and child functional needs, is a potential risk factor for below-average caregiver mental health. Future design and evaluation of interventions focused on support for caregivers of CMC are warranted.

Using the capability, opportunity, and motivation model of behaviour to assess provider perception of implementing solution-focused goal-setting in paediatric rehabilitation.

Adoption of family and child goal-setting in paediatric rehabilitation is important to positive long-term outcomes. Solution-focused coaching (SFC) has been identified as a promising approach to ensuring this type of goal-setting occurs, while the actual implementation of SFC by health care providers (HCPs) is low. This study utilized the capacity, opportunity, and motivation model of behaviour change (COM-B) to identify which strengths and difficulties health care providers (HCPs) perceived with respect to SFC goal-setting in paediatric rehabilitation. A self-report survey was developed and administered to HCPs at a paediatric rehabilitation hospital. Each survey question was based upon a COM-B sub-component. Demographic information was collected from HCPs, and descriptive statistics were used to rank perceived COM-B components from strongest to weakest. Results indicate HCPs view the provision of SFC goal-setting as an important practice, while they also perceive difficulties to actual delivery due to: lack of adequate individual skill, lack of experience with this type of goal-setting, and insufficient preparation for clients to engage in sharing their goals. HCPs also perceived lack of organizational processes to support the practice within their teams. Recommendations for intervention are provided.

Severe malaria-related disability in Ethiopian children from the perspectives of caregivers: an interpretive description study.

PURPOSE: This study explored severe malaria-related disability in children from the perspectives of their caregivers. MATERIALS AND METHODS: The interpretive description qualitative approach was employed. The participants were selected using the purposive sampling technique considering the child's history of severe malaria, age (0-10 years), and location (urban/rural). Data were collected through face-to-face interviews with sixteen caregivers. Reflexive thematic data analysis was utilized. Through prolonged engagement, reflective journaling, an audit trail, and co-authors' review, trustworthiness was enhanced. RESULTS: The study generated five themes from the interviews: mitigators of disability, contributors of disability, impact on body function, impact on activities and participation, and uncertainties about future well-being. The findings revealed previously unstudied social components of disability and environmental factors. Furthermore, the research uncovered health-related quality of life aspects that are out of the scope of the current comprehensive disability framework. CONCLUSIONS: The study contributes to a deeper understanding of severe malaria-related disability in children from the biopsychosocial perspective. The findings could help policymakers, researchers, and clinicians who want to design rehabilitation interventions for the affected children or examine the components of disability on a large scale using quantitative methods.IMPLICATIONS FOR REHABILITATIONVarious contextual factors interacted with severe malaria and influenced functioning either as facilitators or barriers, implying disability related to malaria can be prevented or created.The long-term impacts of severe malaria are not limited to functioning and disability but also affect the health-related quality of life of children who survive severe malaria.Rehabilitation professionals should consider applying comprehensive functioning and disability frameworks such as the ICF when designing (or applying) screening tools, planning interventions, and evaluating the outcomes of intervention for children with severe malaria-related disability.Rehabilitation interventions for children with severe malaria-related disability should consider patient- or caregiver-reported outcomes (components of disability).

Effectiveness of Structured Care Coordination for Children With Medical Complexity: The Complex Care for Kids Ontario (CCKO) Randomized Clinical Trial.

Importance: Children with medical complexity (CMC) have chronic conditions and high health needs and may experience fragmented care. Objective: To compare the effectiveness of a structured complex care program, Complex Care for Kids Ontario (CCKO), with usual care. Design, Setting, and Participants: This randomized clinical trial used a waitlist variation for randomizing patients from 12 complex care clinics in Ontario, Canada, over 2 years. The study was conducted from December 2016 to June 2021. Participants were identified based on complex care clinic referral and randomly allocated into an intervention group, seen at the next available clinic appointment, or a control group that was placed on a waitlist to receive the intervention after 12 months. Intervention: Assignment of a nurse practitioner-pediatrician dyad partnering with families in a structured complex care clinic to provide intensive care coordination and comprehensive plans of care. Main Outcomes and Measures: Co-primary outcomes, assessed at baseline and at 6, 12, and 24 months postrandomization, were service delivery indicators from the Family Experiences With Coordination of Care that scored (1) coordination of care among health care professionals, (2) coordination of care between health care professionals and families, and (3) utility of care planning tools. Secondary outcomes included child and parent health outcomes and child health care system utilization and cost. Results: Of 144 participants randomized, 141 had complete health administrative data, and 139 had complete baseline surveys. The median (IQR) age of the participants was 29 months (9-102); 83 (60%) were male. At 12 months, scores for utility of care planning tools improved in the intervention group compared with the waitlist group (adjusted odds ratio, 9.3; 95% CI, 3.9-21.9; P < .001), with no difference between groups for the other 2 co-primary outcomes. There were no group differences for secondary outcomes of child outcomes, parent outcomes, and health care system utilization and cost. At 24 months, when both groups were receiving the intervention, no primary outcome differences were observed. Total health care costs in the second year were lower for the intervention group (median, CAD$17 891; IQR, 6098-61 346; vs CAD$37 524; IQR, 9338-119 547 [US $13 415; IQR, 4572-45 998; vs US $28 136; IQR, 7002-89 637]; P = .01). Conclusions and Relevance: The CCKO program improved the perceived utility of care planning tools but not other outcomes at 1 year. Extended evaluation periods may be helpful in assessing pediatric complex care interventions. Trial Registration: ClinicalTrials.gov Identifier: NCT02928757.

Severe malaria-related disability in African children: a scoping review.

PURPOSE: Disability is a consequence of severe malaria for a significant proportion of African children. This scoping review aims to describe the impact of severe malaria on African children according to current literature using an international biopsychical classification and framework of disability and functioning. MATERIALS AND METHODS: MEDLINE, EMBASE, Global Health, and CINHAL databases were searched for original research conducted on African children aged 0-18 using terms related to severe malaria and components of disability. Independent and dependent variables were extracted and classified using the World Health Organization's International Classification of Functioning, Disability, and Health-Children and Youth version (ICF-CY) using standardized coding methods. RESULTS: Seventy-two percent of the measured variables in the 34 included studies were coded as "body functions," (i.e., impairments), such as mental, neuromusculoskeletal, movement, and sensory functions, and 23.3% of variables were coded as "activities and participation" (i.e., activity limitations/participation restrictions), such as difficulties with general tasks and demands, communication, mobility, interpersonal interactions, and relationships. "Environment" variables such as family support, health access, education, or societal attitudes were not found in the included studies. CONCLUSIONS: Existing peer-reviewed quantitative research of severe malaria-related disability is focused on neurological sequelae, with less research about activity limitations and participation restrictions.

Promoting the use of a comprehensive biopsychosocial disability framework and classification system for severe malaria will provide a framework that other researchers, policymakers, and rehabilitation professionals can consider when looking at the best ways to support outcomes for children with severe malaria.Using a framework of the ICF-CY, we have highlighted the need for better research into child functioning outcomes in severe malaria research, especially within the domain of child participation.Policymakers should be encouraged to support better holistic evaluation, support, and rehabilitation of children who have had severe malaria.

The Use of Conductive Lycra Fabric in the Prototype Design of a Wearable Device to Monitor Physiological Signals.

Wearable technology has become commonplace for the measurement of heart rate, steps taken, and monitoring exercise regimes. However, wearables can also be used to enable or enhance the lives of persons living with disabilities. This paper discusses the design of a wearable device that aims to facilitate the assessment of physiological signals using conductive Lycra fabric. The device will be applicable for daily use within diverse contexts including the evaluation of emotional experiences of children with Severe Motor and Communication Impairment and the detection of Obstructive Sleep Apnea in children with Down Syndrome. The Lycra fabric sensors are used to acquire electrocardiographic signals, galvanic skin response, and respiratory signals. Articulated design requirements include constraints related to the ability to fit children of all sizes, and meeting medical device standards and biocompatibility, and criteria related to low costs, comfortability, and maintainability. Upon prototyping and preliminary testing, this device was found to offer an affordable, comfortable, and accessible solution to the monitoring of physiological signals. Clinical Relevance- This research provides initial knowledge and momentum towards an affordable wearable device using conductive Lycra to effectively monitor and assess physiological signals in children with disabilities.

Facilitators and barriers to patient-centred goal-setting in rehabilitation: A scoping review.

OBJECTIVE: Identify, map, and synthesize existing reviews, to extract and analyse the most prominent barriers and facilitators to applying patient-centred goal-setting practice in rehabilitation using the Capability, Opportunity Motivation Behaviour (COM-B) model. DESIGN: Scoping review. DATA SOURCE: A primary search was conducted in MEDLINE, CINAHL, EMBASE, PsychInfo, and Cochrane. Citation chaining was employed. REVIEW METHODS: All types of review (systematic, scoping, and narrative) studies published up to June 14, 2022 that included physical and neurological rehabilitation, patient-centeredness, and goal-setting were reviewed. Studies were scrutinized for relevance, quality was not assessed. The most prominent barriers and facilitators were synthesized using thematic content analysis and mapped onto the COM-B model. RESULTS: Twenty-six review studies covering a range of conditions and settings, acute to community were included. Barrier and facilitators were identified at patient, provider, and organizational level. Barrier themes include provider's existing beliefs about goal-setting, lack of skills, and integration into clinical routines. Patient barriers related to capacity and opportunity to participate. Organizational barriers include lack of clinical guidelines, patient preparation, insufficient provider time, and high productivity expectations. Facilitators included goal-setting guidelines, training and education of providers and patients, revised clinical routines, performance monitoring, adequate time, and resources. CONCLUSION: Healthcare providers should be the primary target of intervention. A provider's motivation to change current practice is the most prominent barrier, followed closely by capacity and opportunity. Patients require information, training, and structured engagement opportunities. Organizations play a key role in creating the optimal environmental conditions to enable patient-centred goal-setting.

Emotional Well-Being of Children and Youth with Severe Motor and Communication Impairment: A Conceptual Understanding.

BACKGROUND: Children and youth with severe motor and communication impairment (SMCI) have difficulty providing self-expression through typical speech, writing with a paper and pencil, or using a standard keyboard. Their emotional expressions can be missed by peers and novel caregivers. PURPOSE: To describe the indicators and components of emotional experiences for children/youth with SMCI. METHODS: Primary guardians of nine children/youth with SMCI were involved in photo/video data collection and follow-up qualitative interviews. Twenty-one familiar people (e.g., friends, family members, and/or care team) participated in semi-structured qualitative interviews. RESULTS: A conceptual understanding of emotional well-being specific to the population has been developed consisting of nine themes, encompassed by four domains i) Core Attributes, ii) Personal Experiences, iii) Surroundings, iv) Expression and Reception. CONCLUSIONS: Emotional experiences of children/youth with SMCI are diversely expressed. Primary guardian and familiar person insight can be amplified to positively impact care and participation.

Implementing a Care Coordination Strategy for Children with Medical Complexity in Ontario, Canada: A Process Evaluation.

Introduction: A provincial strategy to expand care coordination and integration of care for children with medical complexity (CMC) was launched in Ontario, Canada in 2015. A process evaluation of the roll-out examined the processes, mechanisms of impact, and contextual factors affecting the implementation of the Complex Care for Kids Ontario (CCKO) intervention strategy. Methods: This process evaluation was conducted and analyzed according to the United Kingdom Medical Research Council (UK-MRC) process evaluation framework. To evaluate the implementation of the CCKO intervention, a multi-method study design was used, including semi-structured interviews with 38 key informants and 10 families of CMC involved in CCKO. To further understand implementation details across regional sites, provincial-level implementation plans, and process documents were reviewed. Discussion: Strengths of CCKO included novel collaborations and partnerships between complex care teams, community partners and regional sites. Issues relating to communication and coordination across care sectors created challenges to holistic care coordination objectives. Provincial system fragmentation limited the ability of CCKO to provide seamless care coordination due to the multiple care sectors involved. Conclusion: This study adds to the understanding of the processes involved in a population-level care coordination intervention for CMC. Lessons learned through CCKO can help facilitate reproducibility and necessary adjustments of the intervention in different settings.

Direct assessment of emotional well-being from children with severe motor and communication impairment: a systematic review.

PURPOSE: Explore methods used in peer-reviewed literature for obtaining self-expression of well-being information from children with severe motor and communication impairment (SMCI). MATERIALS AND METHODS: A comprehensive search was conducted on 22 August 2019 through academic databases: CINAHL; Embase; MEDLINE; PsycINFO; InSpec; Compendex. Search strategies were informed by keywords under the following areas: (1) population: children with SMCI, (2) assessment methods: alternative to natural speech, paper and pencil report or standardized keyboard use (e.g., eye gaze) and (3) target information: well-being (e.g., quality of life). Studies were excluded if they focused on individuals over 25-years old, exclusively autism or typically developing children. RESULTS: Non-duplicate studies of 10,986 were screened; 49 studies met inclusion criteria. Most studies used high-tech methods of self-expression in a single context (n = 17). Familiar partners play a significant role in self-expression; 18 studies required a familiar partner for children with SMCI to self-express. Thirty-five studies involved children self-expressing to solely adults, in comparison to 14 studies which involved peers. CONCLUSION: Findings highlight the advancement of high-tech communication devices restricted to application in single contexts. Familiar partner knowledge of children with SMCI has the potential to be shared with others (e.g., respite care providers), enhancing both caregiver and child well-being. Future research that would enhance the literature could explore the assessment of emotional well-being for application in various contexts using multimodal methods. Opportunities for children with SMCI to express their emotional well-being can further influence the understanding and enhancement of participation, social connections, and experiences.IMPLICATIONS FOR REHABILITATIONUse of lower tech methods of self-expression to obtain information directly from children with severe motor and communication impairment (SMCI) remain more feasible in home and school contexts.By utilizing familiar partners' experiences and knowledge of the child, respite care providers, novel support workers, and others involved in the lives of children with SMCI can become further informed.Current high-tech methods for obtaining the emotional expressions of children with SMCI may benefit from incorporating multimodal approaches including lower tech methods, to be feasibly applied in real world contexts where well-being takes place.Further research on this topic is imperative to enable children with SMCI to self-express their emotional well-being which can enhance participation, activities, social connections, and experiences.

Process Evaluation of a Hub-and-Spoke Model to Deliver Coordinated Care for Children with Medical Complexity across Ontario: Facilitators, Barriers and Lessons Learned.

BACKGROUND: Complex Care for Kids Ontario (CCKO) is a multi-year strategy aimed at expanding a hub-and-spoke model to deliver coordinated care for children with medical complexity (CMC) across Ontario. OBJECTIVE: This paper aims to identify the facilitators, barriers and lessons learned from the implementation of the Ontario CCKO strategy. METHOD: Alongside an outcome evaluation of the CCKO strategy, we conducted a process evaluation to understand the implementation context, process and mechanisms. Semi-structured interviews were conducted with 38 healthcare leaders, clinicians and support staff from four regions involved in CCKO care delivery and/or governance. RESULTS: Facilitators to CCKO implementation were sustained engagement of system-wide stakeholders, inter-organizational partnerships, knowledge sharing and family engagement. Barriers to CCKO implementation were resources and funding, fragmentation of care, aligning perspectives between providers and clinical staff recruitment and retention. CONCLUSION: A flexible approach is required to implement a complex, multi-centre policy strategy. Other jurisdictions considering such a model of care delivery would benefit from attention to contextual variations in implementation setting, building cross-sector engagement and buy-in, and offering continuous support for modifications to the intervention as and when required.

Quality of life (QOL) narratives of growing up with epilepsy from youth and family perspectives.

PURPOSE: Qualitative research studies deepen our understanding of growing up with epilepsy but are limited to the singular perspective of children or their parents at one point in childhood. A more complete view requires multiple perspectives and narrative accounts that represent development from early childhood to young adulthood. Thematic study of life narratives of 7 young people and at least one person within their families were interviewed separately (15 participants) for two interviews each (30 interviews). The objective was to obtain narratives of the life experiences, the attributions of those experiences, and crucial periods relating to quality of life (QOL) with no apriori assumptions that their lives were shaped by epilepsy. Themes were formed inductively from subthemes and codes were created based on the constant comparative method by two interviewers who iteratively co-coded the data. RESULTS: Themes emerging from the data: "Story of My Health," "Growing by Doing," "To Adapt or Not to Adapt," "Supports and Challenges," "Parent World," and "Looking in and Out, Forward and Back", often included components of seizure and epilepsy experiences but also mirrored life challenges of growing up in general. The only exclusively epilepsy-specific theme: "To Adapt or Not to Adapt", was about the challenges and solutions for dealing with the uncertainty caused by seizures and potential isolation that results from others' reactions. CONCLUSIONS: There were a range of experiences related to QOL described by participants growing up with epilepsy. The 'ingredients' of a good life (e.g., social and self-acceptance) were consistent with QOL research for general populations, although these were often expressed as more difficult to attain when growing up with epilepsy.

Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.

PURPOSE: To assess child and family engagement in the selection of patient-reported outcomes for clinical studies/clinical settings and development of patient-reported outcome measures (PROMs)/patient-reported experience measures (PREMs) across the pediatric literature. METHODS: Databases were reviewed: EMBASE, MEDLINE, and PsycINFO. Articles published from December 2009 to September 2018 pertaining to the selection of outcomes or development of PROMs/PREMs for children or families were included. The International Association for Public Participation (IAP2) Spectrum of Public Participation was used to classify levels of engagement across each article; IAP2 plots engagement on a spectrum across five stages (from minimal to most engagement): Inform, Consult, Involve, Collaborate, and Empower. RESULTS: 9019 non-duplicate articles were screened; 36 articles met inclusion criteria, seven studies focused on the selection of outcomes, and 29 studies pertained to PROM/PREM development. Twenty-three articles adhered to 'Involve' level of engagement. Four articles were categorized as 'Collaborate,' seven articles were classified as 'Consult,' and three articles were categorized as 'Inform'. CONCLUSION: Children and families were sparsely engaged as co-conductors or equal partners in the selection or development of PRO research; involvement remained on the mid-low end of the IAP2 Spectrum. Engaging with children and families as collaborators can improve the patient-centredness, rigour, and applicability of PROM/PREM research.

Priority Outcomes in Critically Ill Children: A Patient and Parent Perspective.

BACKGROUND: Outcomes in pediatric critical care research are typically selected by the researcher. OBJECTIVES: (1) To identify outcomes prioritized by patients and their families following a critical illness and (2) to determine the overlap between patient-centered and researcher-selected study outcomes. METHODS: An exploratory descriptive qualitative study nested within a longitudinal cohort study conducted in 2 pediatric intensive care units (PICUs). Participants were purposively sampled from the primary cohort to ensure adequate demographic representation. Qualitative descriptive approaches based on naturalistic observation were used to collect data and analyze results. Data were coded by using the International Classification of Functioning, Disability, and Health Children and Youth (ICF-CY) framework. RESULTS: Twenty-one participants were interviewed a mean of 5.1 months after PICU discharge. Outcomes fell into 2 categories: patient-centered and family-centered. In the former, diagnosis, survival, and prognosis were key priorities during the acute critical illness. Once survival appears possible, functioning (physical, cognitive, and emotional), and factors that influence recovery (ie, rehabilitation, environment, and quality of life) are prioritized. Family-centered outcomes consisted of parents' psychosocial functioning and experience of care. Patient-centered outcomes were covered well by the selected study measures of functioning, but not by the clinical outcome measures. CONCLUSION: Functioning and quality of life are key patient-centered outcomes during recovery from critical illness. These are not well captured by end points typically used in PICU studies. These results justify the importance of patient- and family-centered outcomes in PICU research and a need to determine how these outcomes can be comprehensively measured.

Caregiver dissatisfaction with their child's participation in home activities after pediatric critical illness.

BACKGROUND: Pediatric critical care is often accompanied by a variety of functional impairments. Preliminary evidence suggests children's participation in home activities has a slow trajectory post-pediatric intensive care unit (PICU) discharge, however, additional and more granular knowledge on specific problematic activities is needed to inform patient-centric rehabilitative care. The objectives of this study are to identify common home activities in which caregivers' report dissatisfaction and to determine predictors of caregivers' dissatisfaction with their child's participation in home activities post-PICU discharge. METHODS: Secondary analyses of data from a prospective cohort study, the Wee-Cover study, using a subsample of caregivers (N = 170) of children 1-17 years, admitted to a PICU ≥48 h with data on our primary outcome measure from at least one time point. Data were gathered at enrollment and at 3 and 6 months post-PICU discharge. Caregivers reported on their dissatisfaction with their child's participation in home activities via the Participation and Environment Measure. Common activities were identified by plotting caregiver dissatisfaction for each activity pre-and post-PICU, reporting activities in which ≥50% of caregivers reported dissatisfaction with post-PICU, and assessing for significantly different dissatisfaction levels between time-points for each activity. Predictors of caregiver dissatisfaction were assessed using Poisson generalized estimated equation models. RESULTS: There was variability in reported dissatisfaction across all activities; ≥50% of caregivers reported dissatisfaction with five activities, including getting clean, personal care management, and mealtime for younger children and household chores and homework for school-aged children and youth. Four activities had significantly higher caregiver dissatisfaction post-PICU: sleep (children < 5 years), homework, indoor play and games, and computer/video games (children ≥5 years). Home environmental support and the interaction of having participation-focused strategies with receiving PICU-based rehabilitation services were negatively associated with caregiver dissatisfaction. Increased caregiver stress and functional performance were associated with increased dissatisfaction. CONCLUSIONS: Individualized PICU-based rehabilitation services to determine family priorities and develop participation-focused strategies, specifically those increasing environmental supports within the home, may ease the family's transition home post-PICU. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT02148081 05/28/2014.

Applying the WHO ICF Framework to the Outcome Measures Used in the Evaluation of Long-Term Clinical Outcomes in Coronavirus Outbreaks.

(1) Objective: The World Health Organization's (WHO) International Classification of Functioning, Disability and Health (ICF) classification is a unified framework for the description of health and health-related states. This study aimed to use the ICF framework to classify outcome measures used in follow-up studies of coronavirus outbreaks and make recommendations for future studies. (2) Methods: EMBASE, MEDLINE, CINAHL and PsycINFO were systematically searched for original studies assessing clinical outcomes in adult survivors of severe acute respiratory distress syndrome (SARS), middle east respiratory syndrome (MERS) and coronavirus disease-19 (COVID-19) after hospital discharge. Individual items of the identified outcome measures were linked to ICF second-level and third-level categories using ICF linking rules and categorized according to an ICF component. (3) Results: In total, 33 outcome measures were identified from 36 studies. Commonly used (a) ICF body function measures were Pulmonary Function Tests (PFT), Impact of event scale (IES-R) and Hospital Anxiety and Depression Scale (HADS); (b) ICF activity was 6-Minute Walking Distance (6MWD); (c) ICF participation measures included Short Form-36 (SF-36) and St George's Respiratory Questionnaire (SGRQ). ICF environmental factors and personal factors were rarely measured. (4) Conclusions: We recommend future COVID-19 follow-up studies to use the ICF framework to select a combination of outcome measures that capture all the components for a better understanding of the impact on survivors and planning interventions to maximize functional return.

Implementing participation-focused services: A study to develop the Method for using Audit and Feedback in Participation Implementation (MAPi).

BACKGROUND: It is widely agreed that children's services should use participation-focused practice, but that implementation is challenging. This paper describes a method for using audit and feedback, an evidence-based knowledge translation strategy, to support implementation of participation-focused practice in front-line services, to identify barriers to implementation, and to enable international benchmarking of implementation and barriers. METHOD: Best-practice guidelines for using audit and feedback were followed. For audit, participation-focused practice was specified as clinicians' three observable behaviours: (a) targets participation outcomes; (b) involves child/parent in setting participation outcomes; and (c) measures progress towards participation outcomes. For barrier identification, the Theoretical Domains Framework Questionnaire (TDFQ) of known implementation barriers was used. A cycle of audit and barrier identification was piloted in three services (n = 25 clinicians) in a large U.K. healthcare trust. From each clinician, up to five randomly sampled case note sets were audited (total n = 122), and the clinicians were invited to complete the TDFQ. For feedback, data on the behaviours and barriers were shared visually and verbally with managers and clinicians to inform action planning. RESULTS: A Method for using Audit and feedback for Participation implementation (MAPi) was developed. The MAPi audit template captured clinicians' practices: Clinicians targeted participation in 37/122 (30.3%) of the sampled cases; involved child/parent in 16/122 (13.1%); and measured progress in 24/122 (19.7%). Barriers identified from the TDFQ and fed back to managers and clinicians included clinicians' skills in participation-focused behaviours (median = 3.00-5.00, interquartile range [IQR] = 2.25-6.00), social processes (median = 4.00, IQR = 3.00-5.00), and behavioural regulation (median = 4.00-5.00, IQR = 3.00-6.00). CONCLUSIONS: MAPi provides a practical, off-the-shelf method for front-line services to investigate and support their implementation of participation-focused practice. Furthermore, as a shared, consistent template, MAPi provides a method for generating cumulative and comparable, across-services evidence about levels and trends of implementation and about enduring barriers to implementation, to inform future implementation strategies.

Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity.

INTRODUCTION: Technological and medical advances have led to a growing population of children with medical complexity (CMC) defined by substantial medical needs, healthcare utilisation and morbidity. These children are at a high risk of missed, fragmented and/or inappropriate care, and families bear extraordinary financial burden and stress. While small in number (<1% of children), this group uses ~1/3 of all child healthcare resources, and need coordinated care to optimise their health. Complex care for kids Ontario (CCKO) brings researchers, families and healthcare providers together to develop, implement and evaluate a population-level roll-out of care for CMC in Ontario, Canada through a randomised controlled trial (RCT) design. The intervention includes dedicated key workers and the utilisation of coordinated shared care plans. METHODS AND ANALYSIS: Our primary objective is to evaluate the CCKO intervention using a randomised waitlist control design. The waitlist approach involves rolling out an intervention over time, whereby all participants are randomised into two groups (A and B) to receive the intervention at different time points determined at random. Baseline measurements are collected at month 0, and groups A and B are compared at months 6 and 12. The primary outcome is the family-prioritized Family Experiences with Coordination of Care (FECC) survey at 12 months. The FECC will be compared between groups using an analysis of covariance with the corresponding baseline score as the covariate. Secondary outcomes include reports of child and parent health outcomes, health system utilisation and process outcomes. ETHICS AND DISSEMINATION: Research ethics approval has been obtained for this multicentre RCT. This trial will assess the effect of a large population-level complex care intervention to determine whether dedicated key workers and coordinated care plans have an impact on improving service delivery and quality of life for CMC and their families. TRIAL REGISTRATION NUMBER: NCT02928757.