Dataset Information

Provision of care for children with medical complexity in tertiary hospitals in England: qualitative interviews with health professionals.

ABSTRACT:

Background

Due to medical and technological advancements, children with medical complexity are a growing population. Although previous research has identified models of care and experiences when caring for this population, the majority are the USA or Canadian based. Therefore, the aim was to identify models of care for children with medical complexity and barriers and facilitators to delivering high-quality care for this population from a 'free at point of care' national health service.

Method

Qualitative semistructured interviews were conducted with hospital clinicians across England and analysed using a thematic framework approach.

Results

Thirty-seven clinicians from 11 hospital sites were interviewed. In 6 of the hospital sites, there were 14 services identified. Majority of services had a variety of components, some shared and some unique to the individual service. Clinicians faced barriers and facilitators when caring for this population as demonstrated across five categories.

Conclusions

There is limited guidance and evidence on the most effective and efficient models for providing care for this population. It is not possible to determine what a service should look like as there is no consensus on the most appropriate model of care as shown in this study. Due to their complex needs, this population require coordination to ensure high standards of care. However, this was not always possible as clinicians faced barriers such as time constraints, silo thinking and a lack of available housing.

SUBMITTER: McLorie EV

PROVIDER: S-EPMC10351257 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature

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Publications

Provision of care for children with medical complexity in tertiary hospitals in England: qualitative interviews with health professionals.

McLorie Emma Victoria EV Fraser Lorna L Hackett Julia J

BMJ paediatrics open 20230701 1

<h4>Background</h4>Due to medical and technological advancements, children with medical complexity are a growing population. Although previous research has identified models of care and experiences when caring for this population, the majority are the USA or Canadian based. Therefore, the aim was to identify models of care for children with medical complexity and barriers and facilitators to delivering high-quality care for this population from a 'free at point of care' national health service.< ...[more]

PMID: 37451703

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Project description:BackgroundChildren with medical complexity (CMC) comprise 1% of the paediatric population, but account for over 30% of health service costs. Lack of healthcare integration and coordination for CMC is well-documented. To address this, a deep understanding of local contextual factors, experiences, and family-identified needs is crucial. The aim of this research was to investigate the lived experiences of CMC, their families, and healthcare staff, focusing on understanding the dynamics of care coordination and the challenges faced in providing integrated care, in order to inform the development of effective, family-centred models of care.MethodsIn April to July 2022, 31 semi-structured interviews were conducted with parents/guardians of CMC and healthcare professionals who care for CMC. Interviews explored complex paediatric care and care coordination barriers. An inductive thematic analysis was undertaken. Themes were then further explored using Frank's narrative approach.ResultsThrough analysis, we identified that the restitution typology was absent from both staff and parent/guardian narratives. However, we uncovered narratives reflective of the chaos and quest typologies, depicting overwhelming challenges in managing complex medical needs, and proactive efforts to overcome barriers. Importantly, a novel typology termed 'equilibrium' was uncovered. Narratives aligning with this typology described medical complexity as a balance of power and a negotiation of roles. Within the equilibrium typology, illness trajectory was described as a series of negotiations or balancing acts between healthcare stakeholders, before finally reaching equilibrium. Participants described seeking a balance, where their expertise is respected, whilst maintaining the ability to rely on professional guidance and support. These insights provide a nuanced understanding of the multifaceted narratives shaping care experiences for CMC and their families.ConclusionsOur research delineates multifaceted challenges within the care landscape for CMC, their families, and healthcare staff. Embracing the equilibrium narrative typology highlights the criticality of tailored, integrated care models. This necessitates prioritising clear role delineation and communication among caregivers, implementing support systems addressing the challenges of continuous caregiving, and integrating parents/guardians as essential members of the care team. These insights advocate for pragmatic and sustainable strategies to address the unique needs of CMC and their families within healthcare systems.

Project description:BackgroundAccess to quality prostate cancer services remains a global challenge, particularly in Low- and Middle-Income countries. This is often due to weak health systems that struggle to meet the population's needs. The provision of quality health services to patients with prostate cancer requires a comprehensive approach involving multiple stakeholders and structural inputs. However, few studies have comprehensively assessed the relationship between these structural inputs and prostate cancer treatment outcomes. This study, therefore, aimed to determine the availability of selected structural inputs and descriptions of how they influence the provision of quality services to patients with prostate cancer in Tanzania.MethodsWe conducted a cross-sectional study using an explanatory sequential mixed-method approach to collect data from five tertiary hospitals providing cancer services in Tanzania. A validated checklist was used to collect information on available structural inputs for prostate services at tertiary hospitals. A semi-structured interview guide was used to conduct 42 in-depth interviews with 20 healthcare providers, five hospital managers, and 17 patients undergoing treatment for prostate cancer. Descriptive analysis was performed for the quantitative data, and thematic analysis was conducted with the aid of NVivo 14 qualitative software for the interview transcripts.ResultsAll five assessed tertiary hospitals had inadequate human resources for health to provide prostate cancer services. Only one had 70% of the required HRH, while none had above 40% of the required HRH. Within the hospitals, the skill mix imbalance was severe across cadres. Five themes emerged: inadequate infrastructure, delays in diagnosis, delays in treatment, shortage of human resources for health (HRH), and inefficient organization of prostate cancer services.ConclusionThe findings of this study, underscore the major health system deficiencies for the provision of prostate cancer services in tertiary hospitals. With the increased aging population, strong health systems are vital in addressing conditions of old aging, including prostate cancers. Studies on optimization of the available HRH and infrastructure are needed to improve the provision of prostate cancer in tertiary hospitals as an interim solution while long-term measures are needed for improving the HRH availability and conducive infrastructure.

Project description:ImportanceFamilies of children with medical complexity (CMC) report barriers to accessing affordable coverage for the full range of services their children may need to optimize their health outcomes. Medicaid enrollment through medical need-based eligibility mechanisms can help cover these service gaps. Understanding state-by-state variation in how CMC access Medicaid may allow policy makers and pediatricians to help families navigate needed services for CMC.ObjectiveTo clarify how eligibility and coverage for CMC differ for Medicaid beneficiaries across states with different policies and managed care penetration.Design, setting, and participantsThis qualitative study used semistructured interviews with state Medicaid representatives from 23 states and Washington, DC, from February 1, 2020, to March 1, 2021. Enrollment pathways and coverage processes were discussed. Interviews were transcribed and content analysis was performed. Participants included Medicaid directors, a designee, or a state-identified policy leader with expertise in and/or responsibility for child-focused programs.ExposuresState variation in Medicaid eligibility and delivery policies.Main outcomes and measuresEligibility pathways and coverage mechanisms for CMC in each state.ResultsA total of 43 informants from 23 states and Washington, DC, participated, which permitted data collection regarding almost half of the US. Four distinct eligibility pathways were characterized, with 3 specific to CMC, and the pathways that include the presence of waiting lists were distinguished. In addition, 3 coverage types at the state level were identified, consisting of fee-for-service, Medicaid managed care, or both. Two main connections between pathways and coverage mechanisms for CMC were described.Conclusions and relevanceThe findings of this qualitative study suggest that state patterns in Medicaid eligibility and coverage for CMC have implications for access, including some states with substantial waiting periods for these families. Future work is needed to understand the implications of these differential Medicaid medical need-based eligibility pathways and subsequent coverage mechanisms on use of health care resources and expenditures, as well as considerations regarding challenges families of CMC face due to state-by-state variation.

Project description:IntroductionWorldwide, neonatal jaundice accounts for considerable morbidity and mortality. Although severe adverse outcomes, such as hyperbilirubinaemia and kernicterus, are uncommon in high-income countries, these outcomes do occur, have enormous lifelong personal, health and social costs, and may be preventable. Evidence-based practice commonly relies on clinical guidelines; however, their implementation can be difficult. Implementation of neonatal jaundice care has been adversely affected by issues with professional boundaries, competing professional priorities and poor understanding of neonatal jaundice. This paper focuses on the perceptions and experiences of Australian health professionals involved in the management of neonatal jaundice.MethodsUsing a qualitative descriptive approach, semistructured interviews were undertaken to gain understanding of the experiences of health professionals in Australia across the scope of care for jaundiced newborns through an interpretivist approach and to identify possible gaps in the delivery of evidence-based care. Health professionals from a range of disciplines and care settings were recruited by purposive maximum variation sampling. Interviews were conducted face-to-face or by telephone with detailed notes taken and a field journal maintained. Interview scripts were verified by participants and imported into NVivo software. Data were analysed for major themes according to type and contexts of practice.ResultsForty-one health professionals from six broad discipline areas were interviewed. Two major themes and explanatory subthemes were found. The first theme, falling through the gaps, highlighted gaps in evidence-based care, as described by four explanatory subthemes: professional boundaries, blindness to possibility of adverse outcomes, competing professional development priorities and unintended consequences.The second major theme, we know what should happen-but how?, described participant perceptions that it was known what was required to improve care but how to achieve such changes was unclear. The two subthemes are: improvements in education and training, and standardised policies and protocols.ConclusionsMultiple barriers to the provision of evidence-based care related to neonatal jaundice management are experienced by health professionals in Australia. Clinical guidelines are not sufficient to support health professionals deliver evidence-based care in the complex contexts in which they work. Implementation strategies for evidence-based practice need to take account of the experiences of health professionals and the challenges they face. Such strategies need to focus on improving collaboration between different disciplines for the well-being of those needing care. In the case of neonatal jaundice management, consideration is also needed in how to raise awareness of the importance of avoiding severe adverse outcomes, even when they might be rare, and how this might be done. Addressing issues that lead to disjointed care or poor knowledge of neonatal jaundice among health professionals is essential.

Dataset Information

Provision of care for children with medical complexity in tertiary hospitals in England: qualitative interviews with health professionals.

Background

Method

Results

Conclusions

Publications

Provision of care for children with medical complexity in tertiary hospitals in England: qualitative interviews with health professionals.

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