Dataset Information

Continuity of care for children with complex chronic health conditions: parents' perspectives.

ABSTRACT:

Background

Continuity of care has been explored largely from academic and service provider perspectives, and in relation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions to examine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify the salient factors in the experience of, and factors contributing to, continuity in this population.

Methods

Parents of 47 elementary school-aged children with spina bifida, Down syndrome, attention-deficit/hyperactivity disorder, Duchenne muscular dystrophy or cystic fibrosis participated in semi-structured interviews. Parents described and mapped the pattern of their interactions with service providers over time in all domains relevant to their child's health, well-being, and development (medical, rehabilitational, educational, and social supportive services), with particular attention paid to their perceptions of connectedness or coherency in these interactions. Verbatim transcripts were analyzed thematically using a framework approach to impose structure regarding parents' perspectives on continuity of care.

Results

Existing academic concepts of relational, informational and management continuity were all discernable in parents' narratives. A thorough knowledge of the child on the part of service providers emerged as extremely important to parents; such knowledge was underpinned by continuity of personal relationships, principally, and also by written information. For this population, notions of continuity extend to the full range of service providers these children and families need to achieve optimal health status, and are not limited to physicians and nurses. Communication among providers was seen as integral to perceived continuity. Compartmentalization of services and information led to parents assuming a necessary, though at times, uncomfortable, coordinating role. Geographic factors, institutional structures and practices, provider attitudes, and, on occasion, parent preferences and judgments, were all found to create barriers to "seamless" management and provision of care continuity across providers, settings, and sectors.

Conclusions

These findings add new perspectives to the understanding of continuity within chronically ill children's health care. They are relevant to contemporary initiatives to improve continuity of services to children with special health care needs, demonstrate the need for parental support of their important role in maintaining continuity, and suggest avenues for further research.

SUBMITTER: Miller AR

PROVIDER: S-EPMC2805629 | biostudies-literature | 2009 Dec

REPOSITORIES: biostudies-literature

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Publications

Continuity of care for children with complex chronic health conditions: parents' perspectives.

Miller Anton R AR Condin Christopher J CJ McKellin William H WH Shaw Nicola N Klassen Anne F AF Sheps Sam S

BMC health services research 20091221

<h4>Background</h4>Continuity of care has been explored largely from academic and service provider perspectives, and in relation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions to examine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify the salient factors in the experience of, and factors contributing to, continuity in this population.<h4>Methods</h4>Parents of 47 elementary school- ...[more]

PMID: 20025770

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Project description:IntroductionMost pediatric emergency care occurs in general emergency departments (GED), where less pediatric experience and lower pediatric emergency readiness may compromise care. Medically vulnerable pediatric patients, such as those with chronic, severe, neurologic conditions, are likely to be disproportionately affected by suboptimal care in GEDs; however, little is known about characteristics of their care in either the general or pediatric emergency setting. In this study our objective was to compare the frequency, characteristics, and outcomes of ED visits made by children with chronic neurologic diseases between general and pediatric EDs (PED).MethodsWe conducted a retrospective analysis of the 2011-2014 Nationwide Emergency Department Sample (NEDS) for ED visits made by patients 0-21 years with neurologic complex chronic conditions (neuro CCC). We compared patient, hospital, and ED visits characteristics between GEDs and PEDs using descriptive statistics. We assessed outcomes of admission, transfer, critical procedure performance, and mortality using multivariable logistic regression.ResultsThere were 387,813 neuro CCC ED visits (0.3% of 0-21-year-old ED visits) in our sample. Care occurred predominantly in GEDs, and visits were associated with a high severity of illness (30.1% highest severity classification score). Compared to GED visits, PED neuro CCC visits were comprised of individuals who were younger, more likely to have comorbid conditions (32.9% vs 21%, P < 0.001), and technology assistance (65.4% vs. 45.9%) but underwent fewer procedures and had lower ED charges ($2,200 vs $1,520, P < 0.001). Visits to PEDs had lower adjusted odds of critical procedures (adjusted odds ratio [aOR] 0.74, 95% confidence interval [CI] 0.62-0.87), transfers (aOR 0.14, 95% CI 0.04-0.56), and mortality (aOR 0.38, 95% CI 0.19-0.75) compared to GEDs.ConclusionCare for children with neuro CCCs in a pediatric ED is associated with less resource utilization and lower rates of transfer and mortality. Identifying features of PED care for neuro CCCs could lead to lower costs and mortality for this population.

Project description:OBJECTIVES:Improving mental health outcomes for children and young people has become a priority for policy makers in the developed world. In Australia, up to half of all children and adolescents meeting criteria for mental health disorders receive suboptimal levels of treatment (or no treatment at all) despite the availability of effective treatments. Children with complex mental health conditions are particularly at risk of inadequate treatment as optimal care requires coordination from medical, educational and social services. In Australia, clinicians including pediatricians, psychologists and child and adolescent psychiatrists deliver the bulk of mental health care for children with complex mental health conditions. We aimed to determine perspectives of these Australian clinicians on barriers and enablers within the current system and components of an optimal model of care. METHODS:Inductive content analysis was used to analyse 30 semi-structured interviews with key clinicians managing the care of children with complex mental health conditions across Australia. Interviews were conducted using vignettes with Attention Deficit Hyperactivity Disorder (ADHD) and Autism as exemplars. FINDINGS:Multiple barriers to optimal care exist at a systemic, clinician and family level. However, regional health systems provide an enabling environment from which metropolitan models could learn. Transitioning to adult services was highlighted as the most compromised area of care. Clinicians identified short (e.g. empowering parents to advocate for and deliver their child's care, case conferencing with schools) and long term (e.g. co-locating disciplines to deliver care, workforce training) solutions. CONCLUSIONS:Whilst multiple barriers to optimal care for children with complex mental health conditions exist, clinicians identify several enablers including developing networks with other disciplines and empowering parents to advocate for and co-ordinate care. Systemic changes based on multidisciplinary, co-located and integrated care services should be developed as longer term solutions.

Project description:IntroductionThe World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers.MethodsA descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children's wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children's parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis.ResultsTwenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child's diagnosis, but they were able to correctly describe their child's condition using their own terms. Most parents felt involved in their child's management and were satisfied with the care provided. Parents were psychologically affected by their child's situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses' understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder.ConclusionThere is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control.

Project description:BackgroundFood allergy in children is increasing in prevalence in the western world and appears to become an important health problem. Parents of children at risk of food allergy live with the fear of allergic reaction, especially when the children are very young. The paradigm shift in allergy prevention in the last decade-away from allergen avoidance toward a tolerance induction approach-challenges both parents and health care professionals, as they have to deal with changing information and new evidence that often contradicts previous assumptions. Yet, research on health information-seeking behavior and needs of parents on primary prevention of food allergy in children as well as on prediction and prevention strategies of German health care professionals is lacking.ObjectiveThe aim of the study is to explore and understand parents' and health care professionals' perspectives on the prediction and prevention of food allergies. We are particularly interested in information needs, information seeking, and health care usage and place a special focus on families' experiences when their child is at risk or diagnosed with food allergies. Furthermore, food allergy prediction and prevention strategies of health care professionals will be explored.MethodsThis study is part of the NAMIBIO (food allergy biomarker) app consortium, which aims to identify early predictors for the development of food allergy in children and develop apps to guide health care professionals and parents of children with a high risk of food allergy toward prevention and timely tolerance induction. The study uses a qualitative approach with topic-guided interviews and focus groups with parents of children (0-3 years) and health care professionals. Data collection will continue until theoretical saturation is reached. The qualitative content analysis will be used according to Kuckartz to identify overarching themes toward information needs and seeking behavior as well as usage of health care and health care professionals' predictive and preventive strategies. In addition, a constructivist grounded theory approach will be used to explore and understand parents' experiences, interactions, and social processes in families in daily life.ResultsRecruitment and data collection started in February 2022 and is still ongoing.ConclusionsThe qualitative study will provide insight into parents' information-seeking behavior and needs regarding the prevention of food allergy in children, parents' use of pediatric primary care, and health care professionals strategies for the prediction and prevention of food allergies in children. We assume that our results will highlight the challenges associated with the paradigm shift in allergy prevention for both parents and health care professionals. The results will be used to make practical recommendations from the user's perspective and inform the development of the NAMIBIO apps.International registered report identifier (irrid)DERR1-10.2196/41436.

Project description:BackgroundObesity affects nearly half of adults in the United States and is contributing substantially to a pandemic of obesity-associated chronic conditions such as type 2 diabetes, hypertension, and arthritis. The obesity-associated chronic condition pandemic is particularly severe in low-income, medically underserved, predominantly African-American areas in the southern United States. Little is known regarding the impact of geographic, income, and racial disparities in continuity of care on major health outcomes for patients with obesity-associated chronic conditions.ObjectiveThe aim of this study is to assess, among patients with obesity-associated chronic conditions, and within this group, patients with type 2 diabetes, (1) whether continuity of care is associated with lower overall and potentially preventable emergency department and hospital utilization, (2) the effect of geographic, income, and racial disparities on continuity of care and on health care utilization, (3) whether continuity of care particularly protects individuals at risk for disparities from adverse health outcomes, and (4) whether characteristics of health systems are associated with higher continuity of care and better outcomes.MethodsUsing 2015-2018 data from 4 practice-based research networks participating in the Southern Obesity and Diabetes Coalition, we will conduct a retrospective cohort analysis and distributed meta-analysis. Patients with obesity-associated chronic conditions and with type 2 diabetes will be assessed within each health system, following a standardized study protocol. The primary study outcomes are overall and preventable emergency department visits and hospitalizations. Continuity of care will be calculated at the facility level using a modified version of the Bice-Boxerman continuity of care index. Race will be assessed using electronic medical record data. Residence in a low-income area or a health professional shortage area respectively will be assessed by linking patient residence ZIP codes to the Centers for Medicare & Medicaid Services database.ResultsIn 4 regional health systems across Tennessee, Mississippi, Louisiana, and Arkansas, a total of 53 adult hospitals were included in the study. A total of 147,889 patients with obesity-associated chronic conditions who met study criteria were identified in these health systems, of which 45,453 patients met the type 2 diabetes criteria for inclusion. Results are expected by the end of 2020.ConclusionsThis study should reveal whether health system efforts to increase continuity of care for patients with obesity and diabetes have potential to improve outcomes and reduce costs. Analyzing disparities in continuity of care and their effect on major health outcomes can help demonstrate how to improve care and use of health care resources for vulnerable patients with obesity-associated chronic conditions, and within this group, patients with type 2 diabetes. Better understanding of the association between continuity and health care utilization for these vulnerable populations will contribute to the development of higher-value health systems in the southern United States.International registered report identifier (irrid)DERR1-10.2196/20788.

Dataset Information

Continuity of care for children with complex chronic health conditions: parents' perspectives.

Background

Methods

Results

Conclusions

Publications

Continuity of care for children with complex chronic health conditions: parents' perspectives.

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