A Report On Location of Death in Paediatric Palliative Care Between Home, Hospice and Hospital
Child; Humans; Palliative Care; Terminal Care; Great Britain; Canada; Attitude to Death; Choice Behavior; Australia; Patient Satisfaction; retrospective studies; Residence Characteristics/statistics & numerical data; NET CV
This retrospective study analysed data for 703 children who died from 2000 to 2006 to examine where children with a broad range of progressive, life-limiting illnesses actually die when families are able to access hospital, paediatric hospice facility and care at home. There was an overall even distribution for location of death in which 35.1% of children died at home, 32.1% died in a paediatric hospice facility, 31.9% in hospital and 0.9% at another location. Previous research suggests a preference for home as the location of death, but these studies have primarily focused on adults, children with cancer or settings without paediatric hospice facilities available as an option. Our results suggest that the choice of families for end-of-life care is equally divided amongst all three options. Given the increasing numbers of children's hospices worldwide, these findings are important for clinicians, care managers and researchers who plan, provide and evaluate the care of children with life-limiting illness.
2008
Siden H; Miller M; Straatman L; Omesi L; Tucker T; Collins JJ
Palliative Medicine
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/10.1177/0269216308096527" target="_blank" rel="noreferrer noopener">10.1177/0269216308096527</a>
Considerations for ethics in multisite research in paediatric palliative care
PPC Book Chapter 2011 (Kim Widger); Multi-site Ethics; NET CV
2009
Cadell S; Ho G; Jacques L; Wilson K; Davies B; Steele R
Palliative 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
<a href="http://doi.org/10.1177/0269216309103122" target="_blank" rel="noreferrer">10.1177/0269216309103122</a>
Gender imbalance in pediatric palliative care research samples
NET CV
We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative care using MEDLINE, CINAHL, and PsycINFO. Study selection inclusion criteria were: (1) published between 1988 and 2008; (2) in English; (3) conducted in North America; (4) focused on parents of children aged 0-18 years who were expected to die or had died; (5) had 'parent' in the title; and (6) focused on parents' experiences or on parents' perspectives regarding the child's illness/death. Keyword searches produced a list of 2103 studies, of which 45 met the criteria for inclusion. The ratio of mothers to fathers participating in the studies was examined. We found that there has been an increase in research on parental perspectives in pediatric palliative care over the last 5 years, but what constitutes 'parental' in this literature continues to be primarily 'maternal'. Mothers constituted 75% of the overall sample of parents. In only four studies was the gender imbalance addressed as one of the limitations of the study. There is a growing interest in parental perspectives in pediatric palliative care, but the research does not equally reflect the experiences and needs of mothers and fathers. Gender can shape experiences of both parenthood and grief; balanced gender sampling and accurate analysis is essential for research on 'parental perspectives'. Gender imbalance in research samples, designs, recruitment strategies, and data gathering methods must be addressed.
2010
Macdonald ME; Chilibeck G; Affleck W; Cadell S
Palliative Medicine
2010
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/10.1177/0269216309354396" target="_blank" rel="noreferrer">10.1177/0269216309354396</a>
Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study
Child; Humans; Palliative Care; Pediatrics; Canada; Health Planning; Health Services Needs and Demand; Pilot Projects; NET CV; Hospices/organization & administration
This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate around the term 'hospice' versus 'palliative care'; the different and unique needs of children requiring a palliative approach compared with adult hospice patients; and information about planning and beginning the study, including the rationale for a pilot, details about the study site, recruitment and procedures, and data collection and analysis. The results from the pilot study, as well as implications for practice and research are reported in part two.
2008
Steele R; Derman S; Cadell S; Davies B; Siden H; Straatman L
International Journal Of Palliative Nursing
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/10.12968/ijpn.2008.14.5.29492" target="_blank" rel="noreferrer">10.12968/ijpn.2008.14.5.29492</a>
Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study
Child; Female; Humans; Male; Canada; Pilot Projects; Patient Acceptance of Health Care; Research Design; Feasibility Studies; Hospices; Hospitals; Respite Care; Pediatric; adolescent; Preschool; infant; Parents/psychology; NET CV; Health Services Research/methods; Catastrophic Illness
The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada. The perspectives of non-hospice health care professionals (n=4) involved in the child's care are explored. Data were gathered through audio-taped, semi-structured interviews. Initially, parents and health professionals were unaware that the hospice provided more than just end-of-life services. Parents began to consider hospice care when something changed in their lives that forced them to see things differently. This became the impetus for recognizing that CPCH might be a resource for their family. The prospect of respite care was usually the deciding factor in applying to the hospice. Parents reported benefits of hospice respite for themselves and the whole family. Recommendations for practice and future research are offered, including discussion about the feasibility of the study procedures.
2008
Steele R; Derman S; Cadell S; Davies B; Siden H; Straatman L
International Journal Of Palliative Nursing
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/10.12968/ijpn.2008.14.6.30024" target="_blank" rel="noreferrer">10.12968/ijpn.2008.14.6.30024</a>
Nutritional failure and cachexia in a pediatric palliative care population.
Longitudinal Studies; NET CV
2006
Siden H; Soon G; Cox K; Straatman L
Journal Of Investigative Medicine
2006
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/10.2310/6650.2005.x0004.373" target="_blank" rel="noreferrer">10.2310/6650.2005.x0004.373</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>