What we know (and do not know) about raising children with complex continuing care needs
Humans; patient care team; Home Nursing; Parents; disabled children; Health Services Needs and Demand; social support; Life Support Care; Pediatric Nursing; Child Care; Cost of Illness; Long-Term Care; Healthcare Disparities; Special
2008-03
Carnevale FA; Rehm RS; Kirk S; McKeever P
Journal Of Child Health Care
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1367493508088552" target="_blank" rel="noreferrer">10.1177/1367493508088552</a>
Why the Individual Provider Approach to Pediatric Palliative Care Consultation Exacerbates Healthcare Disparities: A Moral Argument for Standard Referral Criteria
Palliative Care; Quality of Life; Child; Healthcare Disparities; Human; Morals; Palliative Care; Referral and Consultation
Pediatric palliative care is specialized medical care for children who live with serious and life-limiting illnesses, with the central goal to improve quality of life for both children and their families. Presently, a majority of pediatric palliative care referrals are based on the traditional consultative model, in which primary providers serve as the gatekeepers to palliative care access. It is well-known that racial and ethnic healthcare disparities exist across the continuum of care, fraught with healthcare providers' biases that impact the care delivered. This includes the referral practices, allocation and utilization of palliative care services, and leaving vulnerable children and families with potentially unmet palliative care needs. We make the moral argument that the establishment of standard referral criteria for pediatric palliative care services is one simple step that must be taken to begin to address and hopefully ameliorate the impact of providers' biases and disparities that exist within pediatric palliative care.<ovid:br/><ovid:br/> Copyright 2022 The Journal of Clinical Ethics. All rights reserved.
Gouda SR; Hoehn KS
Journal of Clinical Ethics
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Socioeconomic Status and Health Services Utilization for Children With Complex Chronic Conditions Liable to Receive Nurse-Led Services: A Cross-Sectional Study
chronic disease; Case management; child health services; healthcare disparities; hospice and palliative care nursing; multimorbidity; pediatric nursing; socioeconomic factors
AIM: To analyze the use of health services for children with severe chronic diseases, seeking to identify patterns of use according to sociodemographic and clinical conditions, and to identify unmet needs of care coordination that could benefit from nursing case management services. DESIGN: Cross-sectional study. METHODS: Children treated in ambulatory and hospital care in Granada, Spain, with complex chronic diseases in 2016 were analyzed to determine their use of healthcare resources. Socioeconomic variables were evaluated, along with clinical status and duration of their conditions. RESULTS: In total, 265 children were analyzed (mean age 7.3 years, SD 4.63; 56.6% male). The average duration of the disease was 63.26 months (SD 54.09). The most common types of disease were neurological (35.80%), congenital (23.90%), and oncological (18.90%). Multivariate analysis showed that children in need of advanced care (beta = 0.71), with a relatively recent diagnosis (beta = -0.11), with criteria for palliative care 1 (beta = -0.26), and whose mothers were older (beta = 0.36) and had a higher educational level (beta = 0.19) made greater use of healthcare resources during the preceding 12 months, whether urgent or scheduled (r(2) = 78.0%, p < .001). CONCLUSIONS: Children with higher needs for advanced care have a heterogeneous use of healthcare resources depending on certain clinical and sociodemographic determinants. This finding highlights the importance of the identification of profiles of children and families for care coordination. The presence of sociodemographic determinants may need individualized approaches to assure a timely health care utilization. CLINICAL RELEVANCE: A significant proportion of the children used multiple health services, being treated at several centers simultaneously, and producing up to 139 total yearly contacts with the health system. Policymakers, healthcare providers, and patients' families should engage in a redesign of healthcare services for these children, providing comprehensive and coordinated systems of care for this population.
Perez-Ardanaz B; Morales-Asencio JM; Garcia-Pinero JM; Lupianez-Perez I; Morales-Gil IM; Kaknani-Uttumchandani S
Journal of Nursing Scholarship
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/jnu.12499" target="_blank" rel="noreferrer noopener">10.1111/jnu.12499</a>