Palliative Care Services for Children with Life-Limiting Conditions
Palliative Therapy; Ireland; Adolescent; Article; Child; Cohort Analysis; Community Support; Controlled Study; Hospice; Human; Major Clinical Study; Male; Nurse; Patient Referral; Place of Death; Residential Care; Retrospective Study; Social Welfare; Terminal Care
Background: Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. Aim(s): Highlighting collaboration between pediatric and PC services is essential in providing seamless care. Method(s): Retrospective data obtained including patient cohort, disease profile, place of death, and the resource requirements for children with a LLC in the Mid-West region of Ireland over a 7-year period. Result(s): Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1 day to 17 years with a mean of approximately 6 years. Thirty-five percent of patients were less than 1 year old. Fifty-one percent were male. Seventy-one percent were referred initially to PC for end-of-life care and 29% for symptom management. Forty-four percent had home support services in place prior to referral to PC. An advanced care plan was created for 65%. Of those that died (n = 68), 70.5% died at home, 25% in hospital, and 4.4% in residential care or a children's hospice. The clinical nurse coordinator for children with life-limiting conditions (CNCCLLC) was involved with 88% of patients. The specialist PC teams were involved with 87%; 65 patients had community support, 31 patients had in-hospital support, and 29 patients were seen by both hospital and community services. Conclusion(s): Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.Copyright © 2022, The Author(s), under exclusive licence to Royal Academy of Medicine in Ireland.
Hayden J; Larkin MA; Noonan H; Conroy M; Twomey F; O'Reilly V; Gallagher S
Irish Journal of Medical Science
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/10.1007/s11845-022-03134-3" target="_blank" rel="noreferrer noopener">10.1007/s11845-022-03134-3</a>
Predicting grief intensity after recent perinatal loss
Miscarriage; Neonatal Death; Perinatal Grief Screening Instrument; Stillbirth
OBJECTIVE: The Perinatal Grief Intensity Scale (PGIS) was developed for clinical use to identify and predict intense grief and need for follow-up after perinatal loss. This study evaluates the validity of the PGIS via its ability to predict future intense grief based on a PGIS score obtained early after a loss. METHODS: A prospective observational study was conducted with 103 international, English-speaking women recruited at hospital discharge or via the internet who experienced a miscarriage, stillbirth, or neonatal death within the previous 8weeks. Survey data were collected at baseline using the PGIS and the Perinatal Grief Scale (PGS). Follow-up data on the PGS were obtained 3months later. Data analysis included descriptive statistics, Cronbach's alpha, receiver operating characteristic curve analysis, and confirmatory factor analysis. RESULTS: Cronbach's alphas were >/=0.70 for both instruments. PGIS factor analysis yielded three factors as predicted, explaining 57.7% of the variance. The optimal cutoff identified for the PGIS was 3.535. No difference was found when the ability of the PGIS to identify intense grief was compared to the PGS (p=0.754). The PGIS was not inferior to the PGS (AUC=0.78, 95% CI 0.68-0.88, p<0.001) in predicting intense grief at the follow-up. A PGIS score>/=3.53 at baseline was associated with increased grief intensity at Time 2 (PGS: OR=1.97, 95% CI 1.59-2.34, p<0.001). CONCLUSIONS: The PGIS is comparable to the PGS, has a lower response burden, and can reliably and validly predict women who may experience future intense grief associated with perinatal loss.
Hutti MH; Myers J; Hall LA; Polivka BJ; White S; Hill J; Kloenne E; Hayden J; Grisanti MM
Journal of Psychosomatic Research
2017
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).
10.1016/j.jpsychores.2017.07.016