Gender differences among Canadian spousal caregivers at the end of life
Palliative Care; Parent caregivers; end-of-life care; Gender differences; home-based palliative care; spousal caregiving
The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. The study was conducted over a 2-year period (2000–2002) in south-central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross-sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males. When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting-related tasks than male caregivers, while male caregivers had approximately twice the odds of providing support in mobility-related tasks. Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care. To address gender differences in caregiving, a realistic home-based palliative care approach must take into account the importance of informal caregivers.
2009
Brazil K
Health & Social Care in the Community
2009
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/10.1111/j.1365-2524.2008.00813.x" target="_blank" rel="noreferrer">10.1111/j.1365-2524.2008.00813.x</a>
Parents' acceptance and regret about end of life care for children who died due to malignancy
analgesic agent; article; Cancer distress; cancer patient; child; childhood cancer; controlled study; End of life care; health care personnel; home environment; Home-based palliative care; human; India; open ended questionnaire; Paediatric cancer; pain; Palliative; palliative therapy; qualitative research; Qualitative study; respiratory distress; terminal care; Terminal care
Purpose: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers. Method(s): This was an observational qualitative study. Parents of in-curable paediatric malignancy patients who died during the years 2016-2018 were interviewed using a pre-formed open-ended questionnaire. Fears during the last phase of child's life, most disturbing symptoms, choice of end of life care plan, regret of care givers and reasons for such choices were noted and analysed. Result(s): Twenty six families were interviewed. A median of 3 months of discordance was noted between declaration of in-curability and acceptance of the same by the family. During terminal months, pain (84.62%) was described as the most bothersome symptom followed by respiratory distress (73.08%). Eighteen families (69%) opted for home-based terminal care, 8 (31%) for hospital-based terminal care. Regret of choice was noted in 62.5% families of the hospital-based care group (separation from home environment being the main reason) and 38.89% of the home-based care group (lack of access to health care personnel and pain medication being the main reasons). Conclusion(s): Home-based care is the preferred option for end of life care by the care givers. Lack of community-based terminal care support system and availability of analgesics are the main areas to work on in India. Copyright © 2019, Springer-Verlag GmbH Germany, part of Springer Nature.
Das K; Khanna T; Arora A; Agrawal N
Supportive Care in Cancer
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/10.1007/s00520-019-04806-0" target="_blank" rel="noreferrer noopener">10.1007/s00520-019-04806-0</a>
Patterns of Hospice and Home-Based Palliative Care in Children: An Ohio Pediatric Palliative Care and End-of Life Network Study
life-limiting illness; home-based palliative care; pediatric hospice; Ohio Pediatric Palliative Care and End-of-Life Network; OPPEN; retrospective cohort study
Objective: To describe the demographic and clinical characteristics of a cohort of patients referred to pediatric hospice and home-based palliative care (HBPC) programs across Ohio in 2016. Study design: Retrospective cohort study of patients referred to hospice/HBPC from 3 pediatric palliative care programs in Ohio in 2016. Demographic and clinical data were extracted from the medical record and analyzed with descriptive statistics. Result(s): There were 209 patients referred: 49 (24%) to hospice and 160 (77%) to HBPC. The most common diagnoses were genetic/chromosomal syndromes (23%), neurologic or neurodegenerative conditions (23%), and cancer (21%). Durable medical equipment use was frequent (85%), with gastrostomy or jejunostomy tubes (22%) the most common. Most patients (64%) retained full-code resuscitation status. Fifty-seven patients (27%) died before July 1, 2018: 37 in hospice (18% of the overall cohort, 65% of decedents) and 20 in HBPC (10% of the overall cohort, 35% of decedents). Sixty-seven percent of hospice and 40% of HBPC patients died at home. Conclusion(s): Pediatric hospice and HBPC programs serve a diverse cohort of patients. Patients referred to pediatric HBPC programs commonly die and are likely to die at home despite not being enrolled in hospice care. The high proportion of decedent HBPC patients indicates that the notion of hospice vs palliative care may present a false dichotomy in many children with life-limiting conditions. Reimbursement models for HBPC should reflect the clinical similarity to hospice in the care of children with life-limiting illnesses. Copyright © 2020 Elsevier Inc.
Grossoehme D H; Humphrey L; Friebert S; Ding L; Yang G; Allmendinger-Goertz K; Fryda Z; Fosselman D; Thienprayoon R
Journal of Pediatrics
2020
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/10.1016/j.jpeds.2020.04.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2020.04.004</a>
The use of telemedicine for home-based palliative care for children with serious illness: a scoping review
Pediatrics; Telemedicine; Palliative Care; Home-Based Palliative Care
CONTEXT: There is potential value to home-based palliative care for children with serious illness delivered via telemedicine (TM HBPC). Evidence to guide optimal design and delivery of TM HBPC is urgently needed. OBJECTIVES: To explore the existing literature to identify research on pediatric TM HBPC. METHODS: Systematic scoping review conducted following PRISMA-ScR guidelines. PubMed, Embase, Cochrane CENTRAL, CINAHL, Web of Science, PsycINFO, and ERIC were searched (January-April 2020) using keywords and controlled vocabulary. The Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework was used to identify components in the literature that facilitate or limit dissemination of TM HBPC interventions. RESULTS: Seventeen articles were included. Most of the literature comprised small descriptive studies, such as case reports, and feasibility trials. Many studies focused on acceptability, and the TM HBPC model was generally acceptable to both clinicians and families. Few studies measured patient access to care, patient and family-centered health or quality of life outcomes. While included studies addressed multiple criteria for each of the RE-AIM dimensions, much of the information was qualitative and subjective. CONCLUSION: TM HBPC is a promising strategy to increase access to palliative care for children with serious illness. However, the current review found a need for more robust information describing implementation and effectiveness of TM HBPC models, adaptation across care settings, and maintenance over time in order to guide and facilitate broader dissemination.
Miller KA; Baird J; Lira J; Herrera Eguizabal J; Fei S; Kysh L; Lotstein D
Journal of Pain and Symptom Management
2020
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/10.1016/j.jpainsymman.2020.12.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.12.004</a>
Gastrointestinal Symptoms in Children With Life-Limiting Conditions Receiving Palliative Home Care
children; home-based palliative care; constipation; vomiting; symptom burden
Context: Children with life-limiting diseases suffer from gastrointestinal (GI) symptoms. Since the introduction of specialized palliative home care (SPHC) in Germany, it is possible to care for these children at home. In phase 1 of care the aim is to stabilize the patient. In phase 2, terminal support is provided. Objectives: Analysis were performed of the differences between these phases. The causes and modalities/outcome of treatment were evaluated. Methods: A retrospective study was performed from 2014 to 2020. All home visits were analyzed with regard to the abovementioned symptoms, their causes, treatment and results. Results: In total, 149 children were included (45.9% female, mean age 8.17 ± 7.67 years), and 126 patients were evaluated. GI symptoms were common in both phases. Vomiting was more common in phase 2 (59.3 vs. 27.1%; p < 0.001). After therapy, the proportion of asymptomatic children in phase 1 increased from 40.1 to 75.7%; (p < 0.001). Constipation was present in 52.3% (phase 1) and 54.1% (phase 2). After treatment, the proportion of asymptomatic patients increased from 47.3 to 75.7% in phase 1 (p < 0.001), and grade 3 constipation was reduced from 33.9 to 15% in phase 2 (p < 0.05). Conclusion: Painful GI symptoms occur in both palliative care phases but are more common in phase 2. The severity and frequency can usually be controlled at home. The study limitations were the retrospective design and small number of patients, but the study had a representative population, good data quality and a unique perspective on the reality of outpatient pediatric palliative care in Germany.
Hauch H; Kriwy P; Hahn A; Dettmeyer R; Zimmer KP; Neubauer B; Brill S; Vaillant V; de Laffolie J; Schaefer K; Tretiakowa I; Hach M; Sibelius U; Berthold D
Frontiers in Pediatrics
2021
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/10.3389/fped.2021.654531" target="_blank" rel="noreferrer noopener">10.3389/fped.2021.654531</a>
"there's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care
compassion; home-based palliative care; hospice care; pediatric hospice care
Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective(s): The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting. Method(s): This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year. Result(s): Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes. Conclusion(s): Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
Thienprayoon R; Grossoehme D; Humphrey LM; Pestian T; Frimpong-Manso M; Malcolm H; Kitamura E; Jenkins R; Friebert S
Journal of Palliative Medicine
2020
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/10.1089/jpm.2019.0418" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0418</a>
From Hospital to Home: Referrals to Pediatric Hospice and Home-Based Palliative Care
Palliative Care; Hospice; Pediatrics; Hospices; Referral and Consultation; Home-Based Palliative Care
CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received. METHODS: Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC. RESULTS: Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit. Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred. Over half of the 58 patients referred to hospice died within the study period (n=34, 58.6%); descendants were more likely to have cancer (p=.002) and less likely to have a neurologic (p=.021) diagnosis. CONCLUSION: Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC. Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs. Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed.
Lotstein D; Klein MJ; Lindley LC; Wolfe J
Journal of Pain and Symptom Management
2023
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/10.1016/j.jpainsymman.2023.02.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.009</a>