Staff and Parent Perspectives on a Therapeutic Recreation-Based Bereavement Camp for Families Whose Child Has Died From Serious Illness
parent perspectives; staff perspectives; model; family; therapeutic recreation; bereavement; childhood illness
This study explores the nature of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Open-ended surveys and interviews were conducted with parents attending a three-camp cycle over a 12-month period or a reunion camp. Thirteen parents completed open-ended surveys before and after each camp and six of these also completed interviews after the final camp. Six additional parents completed interviews after the reunion camp. Six staff working with families during the camps were also interviewed. Content analysis of surveys and thematic analysis of interviews revealed the aims, structure, and content of the camp. The findings suggest a model whereby shared experience allows for normalization and offers a nonjudgmental place to share stories, discuss difficulties come together as a family, and create a support network. These findings highlight the value of therapeutic recreation-based bereavement interventions for families whose child has died from serious illness.
Hanlon P; Kiernan G; Guerin S
Omega
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/10.1177/0030222819863919" target="_blank" rel="noreferrer noopener">10.1177/0030222819863919</a>
Quantification of walking-based physical activity and sedentary time in individuals with Rett syndrome
adolescent; major clinical study; data base; quantitative study; cross-sectional study; seizure; linear regression analysis; human; female; controlled study; adult; Rett syndrome; walking; model; scoliosis; wakefulness; tone and motor problems; trajectory; characteristics
Aim: To quantify, in individuals with Rett syndrome with the capacity to walk, walking-based activity and sedentary time, and to analyse the influences of age, walking ability, scoliosis, and the severity of epilepsy. Method: Sixty-four participants with a mean age of 17 years and 7 months (standard deviation [SD] 9y) were recruited from the Australian Rett Syndrome Database for this cross-sectional study. Each participant wore a StepWatch Activity Monitor for at least 4 days. Linear regression models were used to assess relationships between daily step count and the proportion of waking hours spent in sedentary time with the covariates of age group, walking ability, presence of scoliosis, and frequency of seizures. Results: On average, 62% (SD 19%) of waking hours were sedentary and 20% (SD 8%) was at cadences lower than or equal to 20 steps in a minute. The median daily steps count was 5093 (interquartile range 2026-8602). Compared with females younger than 13 years of age and accounting for the effects of covariates, adults took fewer steps, and both adolescents and adults had more sedentary time. Interpretation: Adolescents and adults led the least active lives and would appear to be in particular need of interventions aiming to optimize slow walking-based physical activity and reduce sedentary time. Copyright © 2017 Mac Keith Press.
Downs J; Leonard H; Wong K; Newton N; Hill K
Developmental Medicine and Child Neurology
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).
<a href="http://doi.org/10.1111/dmcn.13398" target="_blank" rel="noreferrer noopener">10.1111/dmcn.13398</a>
Practitioner Empathy and the Duration of the Common Cold
CARE MEASURE; Common Cold - immunology; Common Cold - pathology; Common Cold - therapy; CONSULTATION; GENERAL & INTERNAL; GENERAL-PRACTICE; health outcomes; Interleukin-8 - isolation & purification; medicine; MODEL; Nasal Lavage Fluid - immunology; PATIENT ENABLEMENT; PLACEBO; Primary Health Care - methods; Questionnaires; RELATIONAL EMPATHY; SATISFACTION
Objective: This study's objective was to assess the relationship of empathy in medical office visits to subsequent outcomes,of the common cold. Methods: A total of 350 subjects >= 12 years of age received either a standard or enhanced physician visit as part of a randomized controlled trial. Enhanced visits emphasized empathy on the part of the physician. The patient-scored Consultation and Relational Empathy (CARE) questionnaire assessed practitioner-patient interaction, especially empathy. Cold severity and duration were assessed from twice-daily symptom reports. Nasal wash was performed to measure the immune cytokine interleukin-8 (IL-8). Results: Eighty-four individuals reported perfect (score of 50) CARE scores. They tended to be older with less education but reported similar health status, quality of life, and levels of optimism. In those with perfect CARE scores, cold duration was shorter (mean 7.10 days versus 8.01 days), and there was a trend toward reduced severity (mean area under receiver-operator characteristics curve 240.40 versus 284.49). After accounting for possible confounding variables, cold severity and duration were significantly lower in those reporting perfect CARE scores. In these models, a perfect score also correlated with a larger increase in IL-8 levels. Conclusions: Clinician empathy, as perceived by patients with the common cold, significantly predicts subsequent duration and severity of illness and is associated with immune system changes.
2009-07
Rakel DP; Hoeft T; Barrett BP; Chewning B; Craig BM; Niu M
Family Medicine
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
The Effect of Pediatric Palliative Care Policy on Hospice Utilization Among California Medicaid Beneficiaries
California; Hospice Care; medicaid; model; palliative therapy; California; Child; Controlled Study; family study; hospice care; Hospices; Human; human tissue; Incidence; Length of Stay; major clinical study; Medicaid; Only Child; Palliative Care
Context California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice care as children near end of life. Objectives The aim of this study was to examine the effect of the palliative care policy on hospice utilization for children and their families was investigated. Methods Using 2007 and 2010 California Medicaid data, a difference-in-difference analysis was conducted to analyze hospice use (i.e., hospice enrollment, hospice length of stay) changes for children who resided in pediatric policy counties relative to those who did not. The sample of children in California who died with a life-threatening serious illness in 2007 and 2010 equaled 979 children. Results More than 10% of children enrolled in hospice care with an average of less than 3 days of hospice care. The palliative care policy did not have any effect on hospice enrollment. However, the policy was positively associated with increasing days in hospice care (incidence rate ratio = 5.61, P < 0.05). The rate of hospice length of stay increased by a factor of 5.61 for children in palliative care counties compared with children unaffected by the policy. Conclusion The pediatric palliative care policy was associated with longer lengths of stay in hospice once the children were enrolled. Policies promoting palliative care are critical to ensuring access to hospice care for children.
Lindley LC
Journal Of Pain And Symptom Management
2016
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<a href="http://doi.org/10.1016/j.jpainsymman.2016.05.019" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.05.019</a>
The Experience Of Providing End Of Life Care At A Children's Hospice: A Qualitative Study
Hospice; Qualitative Research; Terminal Care; Child; Clinical Article; Controlled Study; Doctor Patient Relation; Education; Human; Human Tissue; Interview; Model; Palliative Therapy; Sampling; Symptom; Thematic Analysis
McConnell T; Porter S
Bmc Palliative Care
2017
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10.1186/s12904-017-0189-9
Bringing Home To The Hospital: Development Of The Reflection Room And Provider Perspectives
Intensive Care Unit; Posthumous Care; Terminal Care; Child; Family; Hospital Patient; Human; Major Clinical Study; Model; Privacy; Quantitative Study; Staff; United States
Background: Alternative locations for children near end of life (EOL) are lacking in the United States with deaths largely occurring within intensive care units (ICUs). The reflection room (RR) was implemented as a relevant space for providing this care in our hospital. Objective: We hypothesized staff would report a positive experience in providing EOL and/or postmortem (PM) care here and would recommend this to peers. Design: This explorative study summarized room use data and evaluated staff experiences using a voluntary qualitative and quantitative survey. Subjects: The survey was administered to the inpatient interdisciplinary team. Results: From 2011 to 2014, 116 children used the RR, 64% for PM care, and 34% for EOL care. A total of 201 staff responded to the survey. Of them, 90% described the space as a valuable resource to families, 90% reported a preference for using this location versus a hospital unit, and 93% stated they would encourage their peers to do the same. Advantages listed were increased privacy, allowance for more visitors, and a quieter, calmer environment. Challenges included distance from the unit of transfer, managing assignments in two hospital locations, and medication transportation. Overall, there was a measureable decrease in the number of deaths pronounced in the ICU as the number pronounced in the RR increased, illustrating a significant change in practice. Conclusion: This study demonstrated an overwhelmingly positive experience in providing EOL and/or PM care to children in the RR and staff would recommend this to peers. This model of care should be a serious consideration for hospitals in the United States. © Copyright 2017, Mary Ann Liebert, Inc.
Vesely C; Newman V; Winters Y; Flori H
Journal Of Palliative Medicine
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).
10.1089/jpm.2016.0070
Multiple Complex Chronic Conditions And Pediatric Hospice Utilization Among California Medicaid Beneficiaries, 2007-2010
California; Hospice Care; Medicaid; California; Child; Hospice Care; Hospices; Human; Incidence; Length Of Stay; Logistic Regression Analysis; Major Clinical Study; Medicaid; Model; Only Child; United States
Background: Over 42,000 children die each year in the United States, including many with multiple complex chronic conditions (MCCCs), but little is known about whether the presence of MCCCs influences families to utilize pediatric hospice care. Objective: The study objective was to examine the relationship between MCCCs and pediatric hospice utilization among Medicaid beneficiaries. Methods: A retrospective, longitudinal cohort design was conducted with 2007-2010 California Medicaid data to examine the relationship between MCCCs (i.e., two or more MCCCs) and pediatric hospice utilization (i.e., hospice enrollment, hospice length of stay). Multivariate logistic regression with year fixed effects examined the effect of MCCCs on hospice enrollment, and negative binomial model with year fixed effects explored the relationship between MCCCs and hospice length of stay. Results: More than 10% of children enrolled in hospice care with an average length of stay of approximately three days. In the study sample, 48.6% of the children had MCCCs. MCCCs were not significantly related to hospice enrollment. However, children with MCCCs (incidence rate ratios = 4.25, p < 0.01) were associated with an increase in the number of days in hospice care. Conclusions: This study demonstrated that children with MCCCs have limited hospice care utilization at end of life. Future research is needed to explore barriers to hospice care for children with MCCCs. © Copyright 2017, Mary Ann Liebert, Inc. 2017.
Lindley LC
Journal Of Palliative Medicine
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).
10.1089/jpm.2016.0227
How Do Neonatal Units Support Siblings Following Loss?-a National Survey
Sibling; Bereavement Support; Counselor; Doctor Patient Relation; England; Hospice; Human; Human Experiment; Model; Neonatal Intensive Care Unit; Newborn; Newborn Death; Nurse; Psychologist; Social Welfare; Terminal Care
Background Supporting siblings following loss of an infant is increasingly recognised as an important aspect of neonatal bereavement support. The grief process in children is often complicated by feelings of loss, guilt as well insecurity about their parental wellbeing. There are some existing recommendations from both the Royal College of Paediatrics and Child Health and the British Association of Perinatal Medicine on the various aspects of family support but there is great variation in practice when it comes to supporting siblings following loss of a neonate. Aims/objectives The aim of this study was to explore the practices across all the Neonatal Intensive Care Units (NICUs) in England focussing on sibling support following neonatal loss. We studied the interventions, support systems and resources available for bereaved siblings within the neonatal service. Methodology We conducted a structured telephonic survey of all the 44 NICUs in England. A proforma was used and specific questions were asked from bereavement nurse within each neonatal service regarding resources, availability of multidisciplinary teams and written information on sibling support following neonatal loss. This study was completed over a period of 6 weeks between May and June 2016. The data was collected by the research team and analysed descriptively. Results Results from 39 out of the 44 NICUs. 34% of the units provide support for siblings after neonatal death. This was provided by a combination of counsellors, psychologists/family support nurse within the neonatal team. 60% involved external services including hospice or a charity organisation to provide long term support. Only 50% of units had any written materials or resources focussed on sibling support. 10% of the NICUs did not have an identified bereavement support/end of life care team. Conclusion This study identifies significant variation in practice across the NICUs in the country in terms of supporting siblings following neonatal death. It reiterates the need for a much more unified approach and sharing resources/good practice models across the different units. Sibling support should be an integral component of the bereavement support offered by neonatal services.
Henderson R; Minchella S; Vasudevan C
Archives Of Disease In Childhood
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).
10.1136/archdischild-2017-313087.508
Integrating Palliative Care Into School Communities
Palliative Therapy; Bereavement; Child; Controlled Study; Curriculum; Hospice; Hospices; Human; Human Experiment; Information Processing; Interview; Model; Only Child; Palliative Care; Primary School; School Child; Scotland; Skill; Staff; Terminal Care
Background: Historically, the social aspects of death, dying and bereavement have been given insufficient attention by palliative care services; this has had an adverse effect on how patients and their families experience end-of-life and bereavement. New approaches to palliative care, which forefront palliative care as a public health issue, have brought impetus to this aspect of service provision by seeking to develop communities that support death, dying and bereavement. A survey found that most hospices in the UK regard this approach as a priority and work with schools has been identified as a key area of innovation within this. Practice that engages schools and children on issues concerning end-of-life care is, however, under-developed and under-documented, and there is little evidence that explores the role of hospices in working with schools. Aim: To extend the work of a hospice to engage with local primary schools to promote education and support around end-of-life and bereavement experiences. Method: An action research methodology was used to explore the potential of hospices working with school communities. The research was conducted in one hospice and across two primary schools in Scotland. Participants included children, aged nine to twelve, parents and school and hospice staff, who participated in a series of interviews and focus groups to identify better practice and engage in change processes. Results: Seven innovations were identified and piloted that were of relevance to the school curriculum and the relationship between hospices, school communities and wider society. A model for integrated practice between hospices and schools is suggested. Conclusions: This research informs the ways that hospices might improve their community engagement activities to enable school communities to develop relevant skills, attitudes and support around end-of-life and bereavement experiences for their children. This requires an extension of normal hospice services to develop capacity within school communities.
Paul S; Cree V; Murray S
Palliative Medicine
2016
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).
https://doi.org/10.1177/0269216316631462
Quality Indicators And Parental Satisfaction With Perinatal Palliative Care In The Intrapartum Setting After Diagnosis Of A Life-limiting Fetal Condition
Perinatal; State; Model; Program; Decisions; Prenatal-diagnosis; Nursing; Fetal Diagnosis; Palliative Care; Quality Indicators; Experiences; Measurement; Medical Care; Diagnosis; Health Aspects; Palliative Treatment; Fetal Diseases; Analysis; Quality Management; Pregnancy; Medical Diagnosis; Palliative Care; Parents & Parenting; Perception; Quality Of Care
Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction with care. This research identified which QIs explained parental satisfaction. High QI scores are associated with parental satisfaction. Parents who were satisfied reported 2.9 times the odds that their baby was treated with dignity and respect and 3.4 times the odds their medical care was addressed. This research is a first step in developing a robust measure of QIs in perinatal palliative care.
Wool C; Black BP; Woods AB
Advances In Nursing Science
2016
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).
DOI: 10.1097/ANS.0000000000000147
Screening Criteria Improve Access To Palliative Care In The Picu.
Ipal-icu Project; Unit; Consultation; Pediatrics; Child; Pediatric Intensive-care; Critical Care Medicine; Guidelines; Integrated; Model; Quality Improvement; Delivery Of Healthcare; Intensive Care; Palliative Care; Pediatrics; Referral And Consultation
OBJECTIVES:
To test the ability of palliative care screening criteria to improve access to palliative care services in the PICU and examine the association between palliative care team involvement and ICU and hospital length of stay.
DESIGN:
Prospective interventional quality improvement study.
SETTING:
PICU at a quaternary academic medical center.
PATIENTS:
All patients admitted to the PICU who met criteria for palliative care referral over a 9-month period.
INTERVENTION:
Consensus palliative care consultation criteria were created by pediatric critical care medicine and palliative care providers, and palliative care referral was encouraged for all PICU patients meeting criteria.
MEASUREMENTS AND MAIN RESULTS:
Palliative care referral rates increased significantly after screening criteria implementation. We identified 100 patients who were eligible for palliative care services, and referrals were made for 70 patients (70%). Patients were divided into three groups based on palliative care status: patients new to the palliative care team, patients with an existing palliative care relationship, and patients who did not have a palliative care referral. By the end of study, patients who had an existing relationship with the palliative care team were more likely to still be alive and to have limitations of medical interventions in place, whereas patients who did not have a palliative care referral were more likely to be deceased and to have died in the PICU. After correcting for other factors, including severity of illness, patients who were new to the palliative care team experienced greater delay in palliative care referral and had significantly longer PICU and hospital length of stay than those who were already known to the palliative care team.
CONCLUSIONS:
Palliative care screening criteria are effective tools for improving access to palliative care services in the PICU; however, widespread adoption may produce a significant increase in palliative care demand. The association between an existing palliative care relationship and reduction in resource utilization deserves further investigation as does the perceived benefit of palliative care involvement in the patient, family, and staff experience.
Lutmer JE; Humphrey L; Kempton TM; Moore-Clingenpeel M; Ayad O
Pediatric Critical Care Medicine
2016
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).
DOI: 10.1097/PCC.0000000000000848