Caregiver and Provider Experiences of Home Healthcare Quality for Children With Medical Complexity.
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SUBMITTER: Foster CC
PROVIDER: S-EPMC7199441 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ImportanceAdvance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC.ObjectiveTo explore the experiences of bereaved family caregivers with ACP for CMC.Design, setting, and participantsThis qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used.ExposuresQualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached.Main outcomes and measuresTranscripts were analyzed to create themes that characterized caregiver experiences with ACP.ResultsA total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child's care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced.Conclusions and relevanceIn this study, parental experiences revealed that there are key aspects of the structure of the child's care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.
| S-EPMC7388020 | biostudies-literature
Project description:OBJECTIVES:Shared care plans play an essential role in coordinating care across health care providers and settings for children with medical complexity (CMC). However, existing care plans often lack shared ownership, are out-of-date, and lack universal accessibility. In this study, we aimed to establish requirements for shared care plans to meet the information needs of caregivers and providers and to mitigate current information barriers when caring for CMC. METHODS:We followed a user-centered design methodology and conducted in-depth semistructured interviews with caregivers and providers of CMC who receive care at a tertiary care children's hospital. We applied inductive, thematic analysis to identify salient themes. Analysis occurred concurrently with data collection; therefore, the interview guide was iteratively revised as new questions and themes emerged. RESULTS:Interviews were conducted with 17 caregivers and 22 providers. On the basis of participant perspectives, we identified 4 requirements for shared care plans that would help meet information needs and mitigate current information barriers when caring for CMC. These requirements included the following: (1) supporting the accessibility of care plans from multiple locations (eg, cloud-based) and from multiple devices, with alert and search features; (2) ensuring the organization is tailored to the specific user; (3) including collaborative functionality such as real-time, multiuser content management and secure messaging; and (4) storing care plans on a secure platform with caregiver-controlled permission settings. CONCLUSIONS:Although further studies are needed to understand the optimal design and implementation strategies, shared care plans that meet these specified requirements could mitigate perceived information barriers and improve care for CMC.
| S-EPMC6692073 | biostudies-literature
Project description:Background: Children with medical complexity (CMC) are high utilizers of health care services. Telehealth encounters may provide a means to improve care outcomes for this population. Objective: To evaluate the feasibility, usability, and impact of an in-home telehealth device in the care of CMC. Methods: This single-center feasibility study employed a nonblinded randomized clinical trial design. English-speaking caregivers of children within a pediatric complex care program with home Wi-Fi were eligible for participation. Participants were randomized 1.5:1 with stratification based on tracheostomy status to a control group that received usual care or an intervention group that received a telehealth device for in-home use. Patients were followed up for 4 months. The primary outcome was successful device connectivity and data transmission. Data included clinician encounter device usability; caregiver satisfaction; and encounter type, purpose, and cost. Descriptive statistics, negative binomial regression, and Kaplan-Meier plot were used for analysis. Results: Twenty-four patients were enrolled (9 controls, 15 in the intervention group) in September 2016. The telehealth device was attempted in 73 encounters. Device connectivity was successful 96% of the time. Image and sound quality were acceptable in 98% of visits. Caregivers expressed their overall satisfaction with the device. The hospitalization rate was lower in the intervention group (0.77 vs. 1.14 intensive care unit days/patient-months), resulting in $9,425/USD per patient savings compared with the control group. Conclusion: Despite small sample size and short observation period, this study demonstrated that use of an in-home telehealth device is feasible, well received by caregivers, and can result in decreased hospitalizations when compared with usual care.
| S-EPMC6842894 | biostudies-literature
Project description:BackgroundChildren with medical complexity (CMC) have high healthcare utilization and face unique challenges during hospital admissions. The evidence describing their experiences of inpatient care is distributed across disciplines. The aim of this scoping review was to map the evidence related to the inpatient experience of care for CMC and their families, particularly related to key aspects and methodological approaches, and identify gaps that warrant further study.MethodsThis scoping review was conducted in accordance with JBI methodology and included all studies that reported experiences of acute hospital care for CMC/families. All study designs were included. Databases searched included EMBASE, CINAHL Plus with Full Text, Web of Science, MEDLINE(R) and APA PsycInfo from 2000 to 2022. Details about the participants, concepts, study methods and key findings were abstracted using a data abstraction tool. A thematic analysis was conducted.ResultsForty-nine papers were included: 27 qualitative studies, 10 quantitative studies, six mixed methods studies, two descriptive studies and four reviews. Some quantitative studies used validated instruments to measure experience of care, but many used non-validated surveys. There were a few interventional studies with a small sample size. Results of thematic analysis described the importance of negotiating care roles, shared decision-making, common goal setting, relationship-building, communication, sharing expertise and the hospital setting itself.ConclusionCMC and families value relational elements of care and partnering through sharing expertise, decision-making and collaborative goal-setting when admitted to hospital.Patient or public contributionThis review was conducted in alignment with the principles of patient and family engagement. The review was conceptualized, co-designed and conducted with the full engagement of the project's parent-partner. This team member was involved in all stages from constructing the review question, to developing the protocol, screening articles and drafting this manuscript.
| S-EPMC11372467 | biostudies-literature
Project description:BackgroundChildren with medical complexity (CMC) comprise < 1% of the pediatric population, but account for nearly one-third of healthcare expenditures. Further, while CMC account for up to 80% of pediatric inpatient hospital costs, only 2% of Medicaid spending is attributed to home healthcare. As a result, the current health system heavily relies on family caregivers to fill existing care gaps. This study aimed to: (1) examine factors associated with hospital admissions among CMC and (2) contextualize the potential for home nursing care to improve outcomes among CMC and their families in South Carolina (SC).MethodsThis mixed-methods study was conducted among CMC, their family caregivers, and physicians in SC. Electronic health records data from a primary care clinic within a large health system (7/1/2022-6/30/2023) was analyzed. Logistic regression examined factors associated with hospitalizations among CMC. In-depth interviews (N = 15) were conducted among physicians and caregivers of CMC statewide. Patient-level quantitative data is triangulated with conceptual findings from interviews.ResultsOverall, 39.87% of CMC experienced ≥ 1 hospitalization in the past 12 months. CMC with higher hospitalization risk were dependent on respiratory or neurological/neuromuscular medical devices, not non-Hispanic White, and demonstrated higher healthcare utilization. Interview findings contextualized efforts to reduce hospitalizations, and suggested adaptations related to capacity and willingness to provide complex care for CMC and their families.ConclusionsFindings may inform multi-level solutions for accessible, high-quality home nursing care among CMC and their families. Providers may learn from caregivers' insight to emphasize family-centered care practices, acknowledging time and financial constraints while optimizing the quality of medical care provided in the home.
| S-EPMC11251302 | biostudies-literature
Project description:ObjectiveTo examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL).MethodsFrom July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n = 136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination.ResultsIn the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22-0.95), depressed (IRR, 0.44; 95% CI, 0.21-0.91), or anxious (IRR, 0.5; 95% CI, 0.29-0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23-0.93) or anxious (IRR, 0.53; 95% CI, 0.31-0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43-0.93).ConclusionsCMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL.
| S-EPMC8063607 | biostudies-literature
Project description:ObjectiveTo quantify psychosocial risk in family caregivers of children with medical complexity using the Psychosocial Assessment Tool (PAT) and to investigate potential contributing sociodemographic factors.DesignCross-sectional study.SettingFamily caregivers completed questionnaires during long-term ventilation and complex care clinic visits at The Hospital for Sick Children, Toronto, Ontario, Canada.PatientsA total of 136 family caregivers of children with medical complexity completed the PAT questionnaires from 30 June 2017 through 23 August 2017.Main outcome measuresMean PAT scores in family caregivers of children with medical complexity. Caregivers were stratified as 'Universal' low risk, 'Targeted' intermediate risk or 'Clinical' high risk. The effect of sociodemographic variables on overall PAT scores was also examined using multiple linear regression analysis. Comparisons with previous paediatric studies were made using T-test statistics.Results136 (103 females (76%)) family caregivers completed the study. Mean PAT score was 1.17 (SD=0.74), indicative of 'Targeted' intermediate risk. Sixty-one (45%) caregivers were classified as Universal risk, 60 (44%) as Targeted risk and 15 (11%) as Clinical risk. Multiple linear regression analysis revealed an overall significant model (p=0.04); however, no particular sociodemographic factor was a significant predictor of total PAT scores.ConclusionFamily caregivers of children with medical complexity report PAT scores among the highest of all previously studied paediatric populations. These caregivers experience significant psychosocial risk, demonstrated by larger proportions of caregivers in the highest-risk Clinical category.
| S-EPMC7389766 | biostudies-literature
Project description:This article describes the study protocol for an evaluation of an innovative model of care that supports home health nurses (HHN) who serve children with medical complexity (CMC). CMC constitute a small proportion of children, but have very high need for health services, are hospitalized frequently, and account for significant proportion of pediatric healthcare expenditures. High-quality home health nursing services are important for CMC, but models of care of home healthcare, after discharge of CMC from the hospital, have not been tested. Our project aims are to develop, implement, and test a model of care, called ICollab, to improve home healthcare delivery for CMC. The ICollab model consists of collaboration between HHN, primary-care physicians and clinicians of the complex care program of a tertiary-care children's hospital in the care of CMC. In this randomized clinical trial, we will recruit 110 CMC discharged home on home health nursing services. The intervention group (n = 55) will receive the ICollab intervention for 6 months post-discharge from the hospital, in addition to usual care. Children in the control group (n = 55) will receive only usual care. Outcome measures will include healthcare utilization metrics (hospitalization rates, emergency room visit rates, and days to readmission), caregiver burden and caregiver satisfaction with home healthcare, HHN retention, and HHN collaboration with other healthcare providers. We hypothesize that ICollab will reduce healthcare utilization and caregiver burden, and improve caregiver satisfaction with home healthcare, increase HHN retention, and increase HHN collaboration with other healthcare providers. Results of this study have the potential to provide a critically needed evidence-base for interventions to improve the quality of healthcare delivery for CMC. This study is registered on clinicaltrials.gov (NCT03978468) and is ongoing.
| S-EPMC7498410 | biostudies-literature
Project description:ObjectiveThis study examines whether patient-reported indicators of a quality medical home are associated with measures of health among Latino children in low-income families.Data sourcesData on 3,258 children ages 2-18 years are from a cross-sectional survey of parents of children affiliated with California's Healthy Kids insurance.Study designMedical home quality was assessed using the Parents' Perception of Primary Care and was associated with health-related quality of life (HRQOL) overall and in four domains (physical, emotional, social, and school/daycare) and four measures of school engagement.Principal findingsA higher total medical home score was associated with a higher total Pediatric Quality of Life Inventory score and scores in four subdomains (total beta [B]=1.77, physical B=1.71, social B=1.36, emotional B=2.22, and school/daycare B=1.69, all p<0.001). It was also associated with missing fewer than three school days due to illness (odds ratio [OR]=1.12, 95 percent confidence intervals [CI]: 1.05, 1.19), excellent/above average school performance overall (OR=1.10, 95 percent CI: 1.03, 1.17) and performance in reading (OR=1.13, 95 percent CI: 1.06, 1.20) and math (OR=1.10, 95 percent CI: 1.03, 1.16).ConclusionsPatient-reported medical home quality indicators are favorably associated with HRQOL and measures of school engagement among Latino children in low-income families.
| S-EPMC3393027 | biostudies-literature
Project description:OBJECTIVES:To validate new caregiver-reported quality measures assessing care coordination services for children with medical complexity (CMC). METHODS:A cross-sectional analysis of the associations between 20 newly developed Family Experiences with Coordination of Care (FECC) quality measures and 3 validation measures among 1209 caregivers who responded to a telephone or mailed survey from August to November 2013 in Minnesota and Washington. Validation measures included an access composite, a provider rating item, and a care coordination outcome measure, all derived from Consumer Assessments of Healthcare Providers and Systems (CAHPS) survey items. Multivariate regression was used to examine associations between the 3 validation measures and each of the 20 FECC quality measures. RESULTS:Nineteen of the 20 FECC quality measures were significantly and positively associated with ?1 of the validation measures. The components of care coordination demonstrating the strongest positive association with provider ratings included: 1) having a care coordinator who was knowledgeable and supportive and advocated for the child's needs (??=?26.4; 95% confidence interval [CI], 20.0-32.8, scaled to reflect change associated with a 0-100 change in the FECC measure score); and 2) receiving a written visit summary that was useful and easy to understand (??=?22.0; 95% CI, 17.1-27.0). CONCLUSIONS:Nineteen newly developed FECC quality measures demonstrated convergent validity with previously validated CAHPS measures. These new measures are valid for assessing the quality of care coordination services provided to CMC and may be useful for evaluating new models of care focused on improving these services.
| S-EPMC6152933 | biostudies-literature