A qualitative study of advice from bereaved parents and siblings.
IM; sibling bereavement
Despite a growing bereavement literature, relatively little is known about what families find helpful after a child's death and how best to assist them during the grieving process. In this qualitative study, the authors explored advice from 40 families (65 parents, 39 siblings) of children who died from cancer 6-19 months earlier. Content analysis emphasized the individual nature of grief and revealed advice that fit into three temporal categories: before the death, soon after, and long-term. Findings are discussed in the context of contemporary theory and provide insight into the development and timing of grief interventions.
Thompson AL; Miller KS; Barrera M; Davies B; Foster TL; Gilmer MJ; Hogan N; Vannatta K; Gerhardt CA
Journal Of Social Work In End-of-life & Palliative Care
2011
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/10.1080/15524256.2011.593153" target="_blank" rel="noreferrer">10.1080/15524256.2011.593153</a>
Differences On Psychosocial Outcomes Between Male And Female Caregivers Of Children With Life-limiting Illnesses
Parent-child Relations; Adaptation Psychological; Adult; Aged; Caregivers/ Psychology; Child; Chronic Disease; Cost Of Illness; Fathers/ Psychology; Female; Humans; Male; Middle Aged; Mothers/ Psychology; Palliative Care/ Psychology; Sex Factors; Stress Psychological/psychology; Young Adult
This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a) determine if there were gender differences and (b) identify gender-specific correlations among these outcomes. Findings suggest that significant gender differences exist. Women reported higher average scores compared with men for meaning in caregiving, depression, burden, and posttraumatic growth and lower average scores for optimism. Correlations also revealed some significant differences. Health care professionals need to be aware of gender differences and tailor their interventions appropriately.
Schneider M; Steele R; Cadell S; Hemsworth D
Journal Of Pediatric Nursing
2011
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="https://doi.org/10.1016/j.pedn.2010.01.007" target="_blank" rel="noreferrer">10.1016/j.pedn.2010.01.007</a>
Discovering strengths and growth in palliative care
Cadell S; Shermak S; Johnston M
Oxford Textbook Of Palliative Social Work
2011
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).
Book/Book Section
Managing Stigma in Adolescent HIV: Silence, Secrets and Sanctioned Spaces
Fielden S; Chapman G; Cadell S
Culture, Health And Sexuality
2011
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/10.1080/13691058.2010.525665" target="_blank" rel="noreferrer">10.1080/13691058.2010.525665</a>
Palliative Social Work in Canada
PPC Book Chapter 2011 (Kim Widger)
Cadell S; Bosma H
Oxford Textbook Of Palliative Social Work
2011
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).
Book/Book Section
Pediatric palliative care patients: a prospective multicenter cohort study
adolescent; Child; Female; Hospitalization; Humans; infant; Male; United States; Young Adult; Palliative Care; Prevalence; Chronic disease; Eligibility Determination; Follow-Up Studies; Medical Audit; Prospective Studies; adolescent; Preschool; Palliative Care/organization & administration; infant; Newborn; PEDI Study; United States/epidemiology; Chronic Disease/epidemiology/therapy; Eligibility Determination/methods; Hospitalization/trends; Medical Audit/organization & administration
OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.
Feudtner C; Kang T; Hexem KR; Friedrichsdorf SJ; Osenga K; Siden H; Friebert SE; Hays Ross M; Dussel V; Wolfe J
Pediatrics
2011
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/10.1542/peds.2010-3225" target="_blank" rel="noreferrer">10.1542/peds.2010-3225</a>
Perceptions of discrimination among Mexican American families of seriously ill children
Middle Aged; Male; Young Adult; Child; Humans; Adult; Adolescent; Female; Child Preschool; Infant; Retrospective Studies; Critical Illness; California; Mexican Americans/px [Psychology]; Prejudice
This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided the overall study. Content analysis of interviews with 13 participants from 11 families who were recruited from two children's hospitals in Northern California resulted in numerous codes and revealed that participants perceived discrimination when they were treated differently from other, usually white, families. They believed they were treated differently because they were Mexican, because they were poor, because of language barriers, or because of their physical appearance.
Davies B; Larson J; Contro N; Cabrera AP
Journal of Palliative Medicine
2011
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.2010.0315" target="_blank" rel="noreferrer noopener">10.1089/jpm.2010.0315</a>
Research considerations in pediatric palliative care
Davies B; Widger K; Steele R; Cadell S; Siden H; Straatman L
In Wolff J, Sourkes B, & Hinds P (Eds.) Textbook of Interdisciplinary Pediatric Palliative Care, First Edition. New York: Elsevier, 96-103.
New York: Elsevier
2011
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).
Using Network Analysis To Map The Formal Clinical Reporting Process In Pediatric Palliative Care: A Pilot Study
Community-institutional Relations; Continuity Of Patient Care; Hospice Care; Palliative Care; Pediatrics; British Columbia; Humans; Models Theoretical; Pilot Projects; Risk Management/ Organization & Administration
BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In one context important to families, namely pediatric palliative care, we undertook a project to identify continuity and to pilot the use of network analysis as a tool. METHODS: Network analysis studies patterns of relationships or interactions between members, providing qualitative and quantitative description of network structure. RESULTS: In this report we applied network analysis to paper records of clinical consultations and reports for 6 patients with complex conditions. A high degree of discontinuity was identified, and care was fragmented amongst specialist and generalist providers. Information was shared selectively and often moved in only one direction. CONCLUSIONS: Families have anecdotally reported frustration with poor continuity of care. Network analysis can be a useful tool in describing the discontinuity of care experienced by families dealing with complex and chronic conditions. This tool could be expanded to other systems such as electronic health records and many other health care situations.
Siden H; Urbanoski K
Bmc Health Services Research
2011
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="https://doi.org/10.1186/1472-6963-11-343" target="_blank" rel="noreferrer">10.1186/1472-6963-11-343</a>
Using network analysis to map the formal clinical reporting process in pediatric palliative care: a pilot study
NET CV
ABSTRACT: BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In one context important to families, namely pediatric palliative care, we undertook a project to identify continuity and to pilot the use of network analysis as a tool. METHODS: Network analysis studies patterns of relationships or interactions between members, providing qualitative and quantitative description of network structure. RESULTS: In this report we applied network analysis to paper records of clinical consultations and reports for 6 patients with complex conditions. A high degree of discontinuity was identified, and care was fragmented amongst specialist and generalist providers. Information was shared selectively and often moved in only one direction. CONCLUSIONS: Families have anecdotally reported frustration with poor continuity of care. Network analysis can be a useful tool in describing the discontinuity of care experienced by families dealing with complex and chronic conditions. This tool could be expanded to other systems such as electronic health records and many other health care situations.
Siden H; Urbanoski K
Bmc Health Services Research
2011
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/10.1186/1472-6963-11-343" target="_blank" rel="noreferrer">10.1186/1472-6963-11-343</a>