When rules turn into tools: An activity theory-based perspective on implementation processes and unintended consequences.

The idea that actions of people, organizations or governments may lead to Unintended Consequences (UICs) is not new. In health, UICs have been reported as a result of various interventions including quality improvement initiatives, health information technology implementation, and knowledge translation, especially those involving translation of broad policies (evidence-based medicine and patient-centred care) or system level improvement into actionable items or tools. While some unintended consequences cannot be anticipated, others may be predictable. In this article, we present a model based on cultural historical activity theory, which may help policy-makers, health leaders, and researchers better anticipate UICs resulting from implementation of new programs or technologies and take action to address them or mitigate their risk of occurrence. We support this model using examples of UICs of implementing family centred care principles, electronic health records, and computerized templates for quality improvement in chronic disease management.

Experiences of Financial Stress and Supports in Caregivers During Pediatric Hospital Admission.

BACKGROUND AND OBJECTIVE: In Canada and the United States, ∼1 in 5 children live in poverty, contributing to poor health outcomes. Families with children with chronic illness may experience additional financial stress related to hospitalization. This study aimed to capture experiences of financial needs and supports among caregivers with a child admitted to a tertiary care pediatric hospital to inform hospital-based financial services to reduce financial stress in families. METHODS: We recruited caregivers of children admitted to the general inpatient ward of an academic pediatric center using purposive sampling with no exclusion criteria. Individual, semistructured, in-depth interviews with participants were conducted. Data collected included socio-demographics, financial needs, and experiences with financial supports. Interviews were audio-recorded, transcribed verbatim, coded, and analyzed on NVivo software using a modified-grounded theory approach and summative content analysis. RESULTS: Fifteen caregivers of diverse backgrounds were interviewed, including non-English speakers (n = 4). Three themes and associated subthemes (in parentheses) were identified: (1) financial stress expressed by participants (acute admission-related and chronic financial stress), (2) challenges associated with accessing and utilizing financial supports (caregiver factors, systemic hospital factors, and systemic government factors), and (3) ideas for financial services at the pediatric hospital (services that will provide acute- and chronic financial assistance including education about financial supports and benefits). CONCLUSIONS: Our study highlighted acute and chronic financial needs as well as challenges in accessing financial support. Participants were interested in the healthcare system gaining a comprehensive understanding of their financial circumstances and accessing financial services in a hospital setting.

Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity.

CONTEXT: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they develop that facilitate this engagement. OBJECTIVES: To describe the skills that caregivers developed as they gained experience making medical decisions. METHODS: Eligible caregivers had a child who met referral criteria for their centre's Complex Care program for >1 year, were adults responsible for their child's medical decisions, and spoke English or a language with an available interpreter. We followed a semistructured interview guide to ask caregivers to describe and reflect on two challenging medical decisions that they made for their child-one early and one recent. Guided by interpretive description, we identified and refined themes in an iterative process. RESULTS: We conducted 15 interviews with 16 parents (14 [88%] women, two [13%] men) of a child with medical complexity (aged 1-17 years). Parents described 1) becoming more adept at managing decisional information, 2) recognizing the influence of the decision's context, 3) building stronger relationships with providers, and 4) becoming more effective at guiding their child's care as a decision-maker. As parents built these skills, they developed a greater sense of agency and confidence as decision-makers. CONCLUSION: Parents of children with medical complexity change how they approach decision making over time as they acquire relevant skills. These findings can inform the development of interventions to support skill-building among new caregivers.

Acceptability of the Long-Term In-Home Ventilator Engagement virtual intervention for home mechanical ventilation patients during the COVID-19 pandemic: A qualitative evaluation.

Background: Clinical management of ventilator-assisted individuals (VAIs) was challenged by social distancing rules during the COVID-19 pandemic. In May 2020, the Long-Term In-Home Ventilator Engagement (LIVE) Program was launched in Ontario, Canada to provide intensive digital care case management to VAIs. The purpose of this qualitative study was to explore the acceptability of the LIVE Program hosted via a digital platform during the COVID-19 pandemic from diverse perspectives. Methods: We conducted a qualitative descriptive study (May 2020-April 2021) comprising semi-structured interviews with participants from eight home ventilation specialty centers in Ontario, Canada. We purposively recruited patients, family caregivers, and providers enrolled in LIVE. Content analysis and the theoretical concepts of acceptability, feasibility, and appropriateness were used to interpret findings. Results: A total of 40 individuals (2 VAIs, 18 family caregivers, 20 healthcare providers) participated. Participants described LIVE as acceptable as it addressed a longstanding imperative to improve care access, ease of use, and training provided; feasible for triaging problems and sharing information; and appropriate for timeliness of provider responses, workflows, and perceived value. Negative perceptions of acceptability among healthcare providers concerned digital workload and fit with existing clinical workflows. Perceived benefits accorded to LIVE included enhanced physical and psychological safety in the home, patient-provider relations, and VAI engagement in their own care. Conclusions: Study findings identify factors influencing the LIVE Program's acceptability by patients, family caregivers, and healthcare providers during pandemic conditions including enhanced access to care, ease of case management triage, and VAI safety. Findings may inform the implementation of digital health services to VAIs in non-pandemic circumstances.

Parenteral versus enteral fluids for infants hospitalized with bronchiolitis: The PREFER shared decision-making prospective observational study protocol.

INTRODUCTION: Incorporating shared decision-making (SDM) with children and families in hospitals was a top priority identified by patients, caregivers, and clinicians. Bronchiolitis, a common and costly reason for hospitalization in children, is an exemplar condition to study SDM in hospitals. Internationally, clinical practice guidelines differ when recommending intravenous (IV or parenteral) or nasogastric (NG or enteral) fluids for hospitalized infants with bronchiolitis who are unsafe to be fed orally. While evidence indicates that either IV or NG fluids are safe and effective, parent involvement in SDM in selecting IV or NG fluids is unknown. Our aim is to generate knowledge of SDM with parents in choosing between IV or NG fluids and the benefits and harms of these two treatment options for hospitalized children with bronchiolitis. METHOD: This is a multicenter, prospective, observational study, including children aged <12 months admitted to hospital with bronchiolitis requiring supplemental IV or NG fluids. The primary outcome will evaluate the extent of SDM in choosing IV versus NG fluids using the validated CollaboRATE tool. Secondary outcomes include the proportion of parents provided a choice of IV versus NG fluids; parent knowledge of fluid therapy; rate of fluids; length of hospital stay; and complications. DISCUSSION: This study will evaluate the extent of SDM in hospitalized infants with bronchiolitis who require IV or NG fluids and will evaluate both patient-centered and clinical outcomes that are relevant to clinical practice.