"Doctor, I think my baby is in pain": the assessment of infants' pain by health professionals
2008
Gregoire MC; Finley GA
Jornal De Pediatria
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/10.2223/JPED.1753" target="_blank" rel="noreferrer">10.2223/JPED.1753</a>
A Comparative Cost-minimization Analysis Of Providing Paediatric Palliative Respite Care Before And After The Opening Of Services At A Paediatric Hospice
Costs And Cost Analysis; Hospices/ec [economics]; Palliative Care/ec [economics]; Pediatrics/ec [economics]; Respite Care/ec [economics]; Child; Female; Health Care Costs; Hospices; Humans; Male; Palliative Care; Retrospective Studies; Statistics Nonparametric
A palliative care service provider may add or decrease overall operational costs to the healthcare system. This study assessed the costs of managing respite care for children with life-limiting illness at the Children's Hospital of Eastern Ontario for the 12-month period both before and after services at Roger's House (RH, a paediatric hospice) was made available. The opening and operation of RH for providing respite care resulted in a minimization of operational costs (n = 66 patients, mean decrease of $4,251.95 per month per patient).
Pascuet E; Cowin L; Vaillancourt R; Splinter W; Vadeboncoeur C; Dumond LG; Ni A; Rattray M
Healthcare Management Forum
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).
<a href="http://doi.org/10.1016/j.hcmf.2010.04.009" target="_blank" rel="noreferrer noopener">10.1016/j.hcmf.2010.04.009</a>
A paediatric palliative care programme in development: trends in referral and location of death
location of death
Purpose To describe the formation of a paediatric palliative care programme providing care in hospital, at home or in hospice, ensuring continuity of care where the child and family desire. Study design Descriptive analysis was performed on referral source, diagnosis and reason for discharge for patients referred to the Palliative Care Team at the Children's Hospital of Eastern Ontario in Ottawa, Ontario, Canada from 1999 to 2007. Results 341 children were referred. 24% had a neurological condition, 21% had genetic disorders or congenital anomalies, 20% had cancer, 18% had metabolic or neurodegenerative conditions and 17% had another diagnosis. The major sources of referral included paediatricians, neonatologists, oncologists and intensivists. 55% of the children have died. 58% of these died in hospital, 27% at home and 15% in hospice. Of the remaining 152 children, 7% were discharged from the programme after clinical improvement, 4% were moved to another geographic location or an adult centre, 2% were not eligible, 1% declined services and 4% were lost to follow-up. The remaining 90 children continue to be followed-up. In the hospitalised patients who died, the annual referral rate increased from 20% to >50%. Implications Referral to the palliative care team has increased over time in all diagnostic categories and from all sources. Most children died in hospital; however, a significant number of families chose end-of-life care at home or in a hospice.
2010
Vadeboncoeur C; Splinter WM; Rattray M; Johnston DL; Coulombe L
Archives Of Disease In Childhood
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/10.1136/adc.2008.153494" target="_blank" rel="noreferrer">10.1136/adc.2008.153494</a>
A place to die: The case for paediatric inpatient hospices
PPC Book Chapter 2011 (Kim Widger)
2008
Rapoport A
Paediatrics & Child Health
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/10.1093/pch/13.5.369" target="_blank" rel="noreferrer">10.1093/pch/13.5.369</a>
A qualitative approach to community and provider needs assessment in a telehealth project
Humans; Program Development; British Columbia; Focus Groups; Needs Assessment; Telemedicine; Non-U.S. Gov't; Research Support; Remote Consultation
OBJECTIVE: Needs assessment is a critical part of the design and implementation of telehealth projects. This study assessed the need for a telehealth link between a local community and a tertiary-care medical center. METHODS: The assessment was conducted using multiple focus groups in a remote community and at a tertiary-care pediatric and women's medical center. Participants were physicians and allied health professionals at both sites and the parents of pediatric patients. Data were analyzed for comment categories and thematic items. RESULTS: The focus groups revealed a number of important positive and negative attitudes regarding telehealth and priorities for implementation. Uncertainty and trust were two themes that emerged from all groups. The resulting design of the telehealth program incorporated these responses. CONCLUSION: Qualitative methods, including focus groups, can yield useful data on complex behavior and explore attitudes toward new and unfamiliar technology.
1998
Siden HB
Telemedicine Journal : The Official Journal Of The American Telemedicine Association
1998
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/10.1089/tmj.1.1998.4.225" target="_blank" rel="noreferrer">10.1089/tmj.1.1998.4.225</a>
A report of four cases of acute, severe pulmonary hemorrhage in infancy and support with extracorporeal membrane oxygenation
Female; Humans; Male; Extracorporeal Membrane Oxygenation; Respiration; Severity of Illness Index; Acute Disease; infant; Artificial; Hemorrhage/complications/therapy; Lung Diseases/complications/therapy; Respiratory Insufficiency/etiology/therapy
Introduction
Pulmonary hemorrhage is an uncommon event in infants. It has been described most commonly in the sick premature neonate, older child, or adolescent with chronic cardiopulmonary disease. Acute idiopathic pulmonary hemorrhage in previously healthy infants has, to our knowledge, been reported only rarely. During the past 5 years we have successfully treated 4 infants with sever respiratory failure secondary to acute idiopathic pulmonary hemorrhage. Two of these patients were managed with the conventional therapy of mechanical ventilation, while the other two were successfully managed with extracorporeal membrane oxygenation (ECMO) after failure of conventional mechanical ventilation. In this report we review the current literature on this unusual pediatric problem and describe the use of ECMO as a modality in supporting patients after an acute pulmonary hemorrhage.
Siden HB; Sanders GM; Moler FW
Pediatric Pulmonology
1994
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Journal Article
<a href="http://doi.org/10.1002/ppul.1950180512" target="_blank" rel="noreferrer noopener">10.1002/ppul.1950180512</a>
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>
A theory of healing in the aftermath of youth suicide. Implications for holistic nursing practice
Child; Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; Life Change Events; Holistic Health; Holistic Nursing; Love; Suicide; adolescent; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Family/psychology; Mental Healing
The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a process of "journeying toward wholeness." In response to youth suicide, survivors characteristically tap into their innate strengths and coping capabilities. Eventually, most survivors move toward healing. Precipitated by youth suicide, individual healing was found to be a contextually mediated, ongoing, dynamic, and recursive process. Most often initiated by a family survivor who was emotionally and spiritually close to the youth prior to suicide, healing emanated from the survivor's consciousness as an act of volition. This study brings to light the idea that bereaved family survivors of youth suicide have the potential to heal in response to the decisions they make and the healthy bonds they create and maintain between themselves and the deceased youth.
2001
Kalischuk RG; Davies B
Journal Of Holistic Nursing
2001
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/10.1177/089801010101900206" target="_blank" rel="noreferrer">10.1177/089801010101900206</a>
A typology of fatigue in children with cancer
Child; Female; Humans; Male; Adult; British Columbia; Hospitals; Alberta; Pediatric; adolescent; Preschool; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Interviews; Fatigue/classification/complications/nursing/psychology; Neoplasms/complications/nursing
Fatigue in adults with cancer has received considerable attention as a troublesome symptom that requires nursing intervention. Fatigue in children with cancer, however, has received considerably less focus. The first phase of the present study used qualitative methods to generate a detailed description of fatigue in children with cancer. Thirteen children (ages 5 to 15) and 12 parents from the oncology service in two regional children's hospitals participated in the initial interviews; a validation sample comprised another 7 children and 6 parents from a third site. Transcribed interviews were subjected to grounded theory analysis. Energy, as an overriding phenomenon, was a core concept in the descriptions of fatigue. Findings suggest that children with cancer may experience three subjectively distinct types of fatigue that represent different levels of energy: typical tiredness, treatment fatigue, and shutdown fatigue. Children managed their dwindling energy and minimized further energy loss through strategies of replenishing, conserving, and preserving. Children's use of these strategies was influenced by temperament, lifestyle, environmental factors, and treatment modalities. Knowledge of the specific types of fatigue in children can offer direction for optimal intervention and for further research.
2002
Davies B; Whitsett SF; Bruce A; McCarthy P
Journal Of Pediatric Oncology Nursing
2002
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Journal Article
<a href="http://doi.org/10.1053/jpon.2002.30012" target="_blank" rel="noreferrer">10.1053/jpon.2002.30012</a>
Addressing ethical concerns regarding pediatric palliative care research
Humans; United States; Research; Ethics; decision making; Palliative Care/ethics; Pediatrics/ethics
2009
Rapoport A
Archives Of Pediatrics & Adolescent 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/10.1001/archpedi.163.8.688" target="_blank" rel="noreferrer">10.1001/archpedi.163.8.688</a>
Addressing spirituality in pediatric hospice and palliative care
Child; Adult; Religion and Medicine; Needs Assessment; Religion and Psychology; Nursing Assessment; Family/psychology; Human; Child Psychology; Holistic Health; Practice Guidelines; Spirituality; Palliative Care/methods/psychology/standards; Pastoral Care/methods/standards; Pediatrics/methods
Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable attention has been directed to spiritual issues for adult patients in hospice and palliative care, spirituality in pediatric palliative care has been virtually neglected. The need for guidelines to assess spirituality in this population was identified as a priority issue by members of a subcommittee of the Children's International Project on Children's Palliative/Hospice Services, created under the auspices of the National Hospice Organization. Committee members, based on their clinical, research, and personal experiences, identified several aspects relevant to spirituality in general, and to spirituality in pediatric palliative care in particular, and developed guidelines for clinicians in pediatric palliative care. The purpose of this paper is to share the results of this committee's work and, in particular, to present their guidelines for addressing spiritual issues in children and families in pediatric hospice and palliative care.
2002
Davies B; Brenner P; Orloff S; Sumner L; Worden W
Journal Of Palliative Care
2002
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Journal Article
After a child dies: Helping the siblings.
Child; Palliative Care; Terminal Care; Siblings; Longitudinal Studies
Davies B
Hospice Care For Children
1993
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
An overview of contemporary social work practice in palliative care.
Female; Male; Palliative Care; Canada; Education; Aged; Social Values; Hospices; Social Work; Patient Advocacy; Role; Research; psychosocial; PPC Book Chapter 2011 (Kim Widger); decision making; knowledge; Support; Adolescence; Collaboration; Evaluation; reflection; Access to Information; 80 and over; Commitment; Communities; Goals and Objectives; Health Care Delivery; Multidisciplinary Care Team; Patient Care Plans
2010
Cadell S; Johnston M; Bosma H; Wainright W
Progress In Palliative Care
2010
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Journal Article
Assessment of need for a children's hospice program
Child; Humans; Grief; Canada; Health Services Needs and Demand; Death; Child Health Services; Program Development; PPC Book Chapter 2011 (Kim Widger); adolescent; Preschool; hospice care
Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide periodic, facility-based respite and palliative care to children with life-threatening, progressive illness and to their families. Loss and grief support is another integral component of the program. The concept of pediatric hospice care is founded on the premise that dying children and their families can benefit from care designed to maximize present quality of life; yet, the creation of such programs must be based on demonstrated need. One vital step in the development of the Canuck Place program was assessing the need for such a program within the province. Data from both traditional quantitative and less traditional qualitative sources were used to document and put forth an argument in support of developing a children's hospice program. The final report addressed several components that are summarized in this article for the purposes of assisting others who may wish to undertake similar projects in their own communities.
1996
Davies B
Death Studies
1996
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Journal Article
<a href="http://doi.org/10.1080/07481189608252780" target="_blank" rel="noreferrer">10.1080/07481189608252780</a>
Away from home: Experiences of Mexican-American Families in Pediatric Palliative Care
2010
Contro N; Davies B; Larson JM; Sourkes B
Journal of Social Work in End-of-Life & Palliative Care
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/10.1080/15524256.2010.529020" target="_blank" rel="noreferrer">10.1080/15524256.2010.529020</a>
Barriers to palliative care for children: Perceptions of pediatric health care providers
Longitudinal Studies
OBJECTIVE. The goal was to explore barriers to palliative care experienced by pediatric health care providers caring for seriously ill children. METHODS. This study explored pediatric provider perceptions of end-of-life care in an academic children's hospital, with the goal of describing perceived barriers to end-of-life care for children and their families. The report focuses on the responses of nurses (n = 117) and physicians (n = 81). RESULTS. Approximately one half of the respondents reported 4 of 26 barriers listed in the study questionnaire as frequently or almost always occurring, that is, uncertain prognosis (55%), family not ready to acknowledge incurable condition (51%), language barriers (47%), and time constraints (47%). Approximately one third of respondents cited another 8 barriers frequently arising from problems with communication and from insufficient education in pain and palliative care. Fourteen barriers were perceived by >75% of staff members as occasionally or never interfering with pediatric end-of-life care. Comparisons between physicians and nurses and between ICU and non-ICU staff members revealed several significant differences between these groups. CONCLUSIONS. Perceived barriers to pediatric end-of-life care differed from those impeding adult end-of-life care. The most-commonly perceived factors that interfered with optimal pediatric end-of-life care involved uncertainties in prognosis and discrepancies in treatment goals between staff members and family members, followed by barriers to communication. Improved staff education in communication skills and palliative care for children may help overcome some of these obstacles, but pediatric providers must realize that uncertainty may be unavoidable and inherent in the care of seriously ill children. An uncertain prognosis should be a signal to initiate, rather than to delay, palliative care.
2008
Davies B; Sehring SA; Partridge JC; Cooper BA; Hughes A; Philp JC; Amidi-Nouri A; Kramer RF
Pediatrics
2008
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Journal Article
<a href="http://doi.org/10.1542/peds.2006-3153" target="_blank" rel="noreferrer">10.1542/peds.2006-3153</a>
Bereaved Parents’ and Siblings’ Reports of Legacies Created by Children With Cancer
Child; Female; Humans; Male; Adult; Parents; Family Relations; Siblings; Qualitative Research; Time Factors; childhood cancer; adolescent; Adaptation; Psychological; bereavement; Psychological; Stress; bereaved parent; Neoplasms/psychology; sibling bereavement; bereaved sibling; legacy; pediatric death
This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18 years). Individual interviews were completed at home approximately 10.68 months (SD = 3.48) after the child’s death. Content analysis of interviews indicated that many children living with cancer did specific things to be remembered, such as making crafts for others, willing away belongings, writing letters to loved ones, and giving special gifts. Some children, particularly those who were very ill or died unexpectedly, did not intentionally do or say anything to be remembered. Legacies included bereaved individuals remembering children’s qualities, concern for family, and beliefs about afterlife. Having advanced cancer appeared to motivate children to influence others’ lives and prepare for their own deaths. Children’s advice about how to live life inspired bereaved family members. Findings contribute to the current knowledge of legacy-making in children and offer implications for practice and future research.
2009-11
Foster TL; Gilmer MJ; Davies B; Barrera M; Fairclough D; Vannatta K; Gerhardt CA
Journal Of Pediatric Oncology Nursing
2009
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Journal Article
<a href="http://doi.org/10.1177/1043454209340322" target="_blank" rel="noreferrer">10.1177/1043454209340322</a>
Bereavement
Palliative Care; Terminal Care; Terminally Ill; Longitudinal Studies; Children; Chronic disease
Davies B; Worder W; Orloff S; Gudsmundsdottir M; Toce S; Sumner L
Palliative Care For Infants, Children And Adolescents: A Practical Handbook
2004
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Book/Book Section
Building on Values: The Future of Health Care in Canada. Chapter 7
PPC Book Chapter 2011 (Kim Widger)
2002
Romanow R; Widger K
2002
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
Can you give me respect? Experiences of the urban poor on a dedicated AIDS nursing home unit
2008
Hughes A; Davies B; Gudmundsdottir M
Journal Of The Association Of Nurses In Aids Care
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/10.1016/j.jana.2008.04.008" target="_blank" rel="noreferrer">10.1016/j.jana.2008.04.008</a>
Challenges in identifying children for palliative care
Child; Attitude to Death; Pilot Projects; quality of life; patient care team; Caregivers/psychology; Human; Palliative Care; Attitude of Health Personnel; Patient Selection
1996
Davies B; Steele R
Journal Of Palliative Care
1996
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Journal Article
Challenges of conducting research in palliative care
Research
1995
Davies B; Reimer CJ; Brown P; Martens N
Omega
1995
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Journal Article
<a href="http://doi.org/10.2190/jx1k-amyb-ccqx-ng2b" target="_blank" rel="noreferrer">10.2190/jx1k-amyb-ccqx-ng2b</a>
Challenges of developing a children's hospice
Death; bereavement
Davies B; Eng B
Beyond The Innocence Of Childhood: Helping Children And Adolescents Cope With Death And Bereavement
1996
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
Chemotherapy-related fatigue in childhood cancer: correlates, consequences, and coping strategies
Child; Humans; Parents; Questionnaires; Adaptation; Psychological; Antineoplastic Agents/adverse effects; Fatigue/chemically induced; Neoplasms/drug therapy/psychology
The aim of this research is to examine the experience and impact of chemotherapy-related fatigue in recently diagnosed pediatric oncology patients. A repeated-measures, within-subjects, mixed (quantitative plus qualitative) design was used to prospectively assess fatigue during early chemotherapy cycles and to compare fatigue to depressive symptoms. Parental interviews collected concurrently were analyzed for descriptions of the child's fatigue and mood states and for strategies to cope with fatigue. Results indicated a significant correlation between fatigue and depression, but qualitative analyses suggested that the 2 phenomena may be unique and distinguishable. Qualitative analyses of parent interviews also identified specific strategies that were frequently used in response to high levels of fatigue. The findings illustrate the significant impact of chemotherapy-related fatigue in children being treated for cancer. The study also provides guidance for the assessment of fatigue and related symptoms and identifies specific strategies for coping with fatigue.
2008
Whitsett SF; Gudmundsdottir M; Davies B; McCarthy P; Friedman D
Journal Of Pediatric Oncology Nursing
2008
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Journal Article
<a href="http://doi.org/10.1177/1043454208315546" target="_blank" rel="noreferrer">10.1177/1043454208315546</a>
Children in palliative medicine: An overview
Davies B; Siden H
In Hanks G, Cherny NI, Christakis NA, Fallon M, Kaasa S & Portenoy RK (Eds.). Oxford Textbook of Palliative Medicine (4th edition). Oxford: Oxford University Press, 1301-17.
Oxford: Oxford University Press
2009
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Comparing parent loss with sibling loss
adolescent; Child; Female; Humans; Male; United States; bereavement; Canada; Parent-Child Relations; Sex Factors; Sibling Relations; adolescent; bereavement; Comparative Study; Psychological Tests; sibling bereavement
The death of a loved one is a traumatic loss for children, but little attention has been paid to how children's responses vary according to who died--a parent or a sibling. This article reports the findings of a comparison between children's responses to parent and sibling loss. Two samples of bereaved children were combined for the project, which compared children's scores on the Achenbach Child Behavior Checklist. Findings indicated that there were no significant differences between the two loss groups in the total number of problems, in any of the syndrome scales, or in the percentage of children at risk. However, when the two loss groups were considered by gender, differences appeared--boys were more impacted by the loss of a parent than by the loss of a sibling and girls were most affected by the loss of a sibling, particularly a sister. Possible explanations for these differences are discussed.
1999-02
Worden JW; Davies B; McCown D
Death Studies
1999
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Journal Article
<a href="http://doi.org/10.1080/074811899201163" target="_blank" rel="noreferrer">10.1080/074811899201163</a>
Conducting a qualitative culture study of pediatric palliative care
While conducting a grounded theory study of Chinese American and Mexican American families' experiences in pediatric palliative care, we encountered a number of unanticipated challenges regarding project development, Institutional Review Boards, recruitment, data collection, and data analysis. In this article, we describe our experiences, strategies, and insights for the benefit of other researchers and clinicians in the field.
2009
Davies B; Larson J; Contro N; Reyes-Hailey C; Ablin AR; Chesla CA; Sourkes B; Cohen H
Qualitative Health Research
2009
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Journal Article
<a href="http://doi.org/10.1177/1049732308327346" target="_blank" rel="noreferrer">10.1177/1049732308327346</a>
Conducting feminist research in nursing: personal and political challenges
Female; Humans; Attitude of Health Personnel; Choice Behavior; Feminism; Women/psychology; Nurses/psychology; Nursing Methodology Research/methods/standards; Politics; Research Personnel/psychology
The challenges of doing feminist nursing research include both personal and political elements. Some of these arise from the threefold influences of being nurses, women, and academics within a larger social context that may be antithetical to feminist values. This paper explores such challenges, using examples from the research of each of the three authors. It includes discussion of such concepts as the tendency to reify certain methodologies and the political forces that may drive research decisions. The authors summarize the challenges of doing feminist nursing research as learning to integrate diverse approaches rather than adhering to a politically correct way of conducting research. They draw on their own research experiences to illustrate the internal conflicts and personal struggles inherent in overcoming the perception that there is one proper way to conduct feminist inquiry.
1998
Maxwell-Young L; Olshansky E; Steele R
Health Care For Women International
1998
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Journal Article
<a href="http://doi.org/10.1080/073993398246070" target="_blank" rel="noreferrer">10.1080/073993398246070</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
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Journal Article
<a href="http://doi.org/10.1177/0269216309103122" target="_blank" rel="noreferrer">10.1177/0269216309103122</a>
Creating social work competencies for practice in hospice palliative care
Child; Humans; Palliative Care; Adult; Canada; Professional Role; Clinical Competence; Interprofessional Relations; Delphi Technique; Practice; PPC Book Chapter 2011 (Kim Widger); Attitudes; Health Knowledge; hospice care; Social Work/education; Educational Measurement/standards
Social workers play an important role in the delivery of Hospice Palliative Care in many diverse settings. The profession brings a unique perspective to end-of-life care that reflects and supports the holistic philosophy of Hospice Palliative Care. Despite the prominent and longstanding position of social work in this area, the role and functions of social workers had not been clearly defined. A Canadian task group of social work practitioners and educators utilized a modified Delphi process to consult front line clinicians nationally, and thereby achieved consensus regarding the identification and description of eleven core competencies in Hospice Palliative Care. These competencies are relevant for social workers at different experience levels across care settings. They can be used to inform social work practice, as well as professional development and educational curricula in this area.
2010
Bosma H; Johnston M; Cadell S; Wainwright W; Abernethy N; Feron A; Kelley ML; Nelson F
Palliative Medicine
2010
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Journal Article
<a href="http://doi.org/10.1177/0269216309346596" target="_blank" rel="noreferrer">10.1177/0269216309346596</a>
Culturally-sensitive information-sharing in pediatric palliative care
OBJECTIVES: This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their child's hospitalizations and at their child's death. METHODS: The study used a retrospective design of grounded theory analysis. Participants included 36 parents (26 Mexican American and 10 Chinese American) from 28 families who experienced between 6 months and 5 years before study participation the death of a child who was aged
2010
Davies B; Contro N; Larson J; Widger K
Pediatrics
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/10.1542/peds.2009-0722" target="_blank" rel="noreferrer">10.1542/peds.2009-0722</a>
Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory
Child; Humans; Canada; Longitudinal Studies; Mental Disorders; Biomedical Research; PEDI Study; Metabolic Diseases; Genetic Diseases; Inborn; Biomedical Research/methods; Canada; Child; Genetic Diseases Inborn/therapy; Humans; Longitudinal Studies/methods; Mental Disorders/therapy; Metabolic Diseases/therapy
BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. METHODS/DESIGN: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age 7-18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child's death if the child dies during the study period. Data collection includes monthly parental assessment of the child's symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child's death. DISCUSSION: Knowledge developed from this study will provide some of the first-ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial-spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study.
Siden H; Steele R; Brant R; Cadell S; Davies B; Straatman L; Widger K; Andrews GS
BMC Pediatrics
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/10.1186/1471-2431-10-67" target="_blank" rel="noreferrer noopener">10.1186/1471-2431-10-67</a>
Do we have the power to create our own future as oncology nurses?
Female; Humans; Male; Leadership; Nurse's Role; Sex Factors; Power (Psychology); Students; Nursing; Oncologic Nursing; Societies; Nursing/psychology
2005
Steele R
Canadian Oncology Nursing Journal
2005
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/10.5737/1181912x1511520" target="_blank" rel="noreferrer">10.5737/1181912x1511520</a>
Efficacy and safety of paediatric medicinal cannabis use: A scoping review
Cannabidiol; Cannabis; Drug-resistant epilepsy; Medicinal marijuana; Scoping review; Tetrahydrocannabinoid; Medicinal Cannabis
INTRODUCTION: The use of medicinal cannabis in the paediatric age group is increasing despite the lack of evidence for its efficacy or safety. OBJECTIVE: To map the available evidence on the efficacy and safety of medicinal cannabis in children and adolescents. METHODS: We conducted a scoping review and searched six electronic databases and grey literature. A study was eligible for inclusion when it investigated the efficacy or safety of medicinal cannabis for any condition, more than half of the participants were 0 to 18 years old, and had any study design except single case reports. RESULTS: We included 36 studies in our final analysis, 32 of which investigated the efficacy or safety of cannabis in treatment-resistant epilepsy. The remaining 4 studies examined patients with cancer, dysautonomia, Epidermolysis Bullosa, and motor disorders. CONCLUSIONS: There is a lack of evidence on the efficacy and safety of medicinal cannabis in most paediatric conditions.
Pawliuk C; Chau B; Rassekh SR; McKellar T; Siden H
Paediatrics and Child Health
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/10.1093/pch/pxaa031" target="_blank" rel="noreferrer noopener">10.1093/pch/pxaa031</a>
End of life in pediatric oncology: how clinical practice leads to research
Biomedical Research; Evidence-based Medicine; Oncology Nursing/td [trends]; Pediatrics/td [trends]; Child; Humans; Research Design
In pediatric oncology nursing, and across practice disciplines in general, clinical research serves as the cornerstone for improving patient care. Historically, advances made in the care and cure of childhood cancer have stemmed directly from clinical research. The developments of new research questions are varied in their origin--some questions are based on previous work that leads logically to the next question, some are based on a clinical problem that requires more immediate attention, and then there are those that arise from an individual clinical experience. This last category provides clinicians with a poignant reason to search for answers on how to provide the most optimal care for all future patients. As the number of advanced practice nurses in pediatric oncology increases, there is the likelihood of an increased pursuit of clinical research. This article describes how one clinician's experience with dying children resulted in the pursuit of answers to clinical research questions. By reflecting on clinical practice and incorporating our practice in the development of research questions, we can improve the quality of care provided to all children with cancer. Copyright 2002 by Association of Pediatric Oncology Nurses
Pritchard M; Davies B
Journal Of Pediatric Oncology Nursing
2002
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/10.1053/jpon.2002.127226" target="_blank" rel="noreferrer noopener">10.1053/jpon.2002.127226</a>
Ensuring pain relief for children at the end of life
Child; Female; Humans; Male; adolescent; Preschool; infant; Palliative Care/methods; Analgesia/methods; Pain Measurement/methods; Terminal Care/methods; Pain/etiology/psychology/therapy
2006
Gregoire MC; Frager G
Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur
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
Evaluating treatment outcome in an interdisciplinary pediatric pain service
Treatment Outcome; Pain; Therapeutics; Children
OBJECTIVE: To provide descriptive data evaluating outcome and treatment satisfaction among former pediatric patients and their parents seen in an interdisciplinary treatment program for complex pain syndromes. DESIGN: Retrospective telephone interview. SETTING: Pediatric academic health care centre. SUBJECTS AND METHODS: A semistructured interview designed for this study was administered by phone with 24 former patients (mean age 15.63 years) and parents, seen over the previous three years in the Complex Pain Consultation Service. Participants provided both qualitative and quantitative information about pre- and post-treatment levels of pain and functioning, achievement of treatment goals and satisfaction with the treatment program. RESULTS: Findings indicated significantly lower frequency and intensity of pain, as rated by patients, when current pain levels were compared with recalled pretreatment levels. As well, improvements were reported in strategies for managing pain and participation in regular activities of daily living. Satisfaction with the team treatment was generally very high, and most felt that their goals were partially to completely met. Child and parent ratings of outcome and satisfaction were consistent. CONCLUSIONS: These descriptive data provide preliminary support for the application of an interdisciplinary model to treating disabling complex pain syndromes in children and youths.
2000
Bennett S; Chambers C; Bellows D; Court C; Huntsman E; Montgomery C; Oberlander T; Sheriff M; Siden H
Pain Research And Management
2000
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/10.1155/2000/767058" target="_blank" rel="noreferrer">10.1155/2000/767058</a>
Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
Adolescent; Child; Child, Preschool; Children; Clinical pathway; Emergency Service, Hospital; Hospitalization; Hospitals, Pediatric; Humans; Infant; Infant, Newborn; Pain; Retrospective Studies; Severe neurological impairment; PIUO
BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term "Pain and Irritability of Unknown Origin (PIUO)" is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication. METHODS: Retrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway. RESULTS: Eight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission. CONCLUSION: Children with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.
Fishman I; Siden H; Vadeboncoeur C
BMC Pediatrics
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/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03632-4</a>
Everyday struggling to survive: Experiences of the urban poor living with advanced cancer.
ONS Excellence in Cancer Nursing Research Award
2007
Hughes A; Gudmundsdottir M; Davies B
Oncology Nursing Forum
2007
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/10.1188/07.onf.1113-1118" target="_blank" rel="noreferrer">10.1188/07.onf.1113-1118</a>
Experiences of families in which a child has a prolonged terminal illness: modifying factors.
Child; Female; Humans; Male; Family; Communication; Longitudinal Studies; Non-U.S. Gov't; Research Support; Parents/psychology; Terminal Care/psychology; Neurodegenerative Diseases/nursing
A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining families' experiences when a child with an NLTI is dying at home. In this grounded theory study, data were collected from eight families through observations and audiotaped interviews. Families moved through a process of 'navigating uncharted territory' as they lived with their dying child. The strategies that families used to manage this phenomenon were influenced by four intervening conditions that reflected the broader structural context of the phenomenon; relationships with healthcare providers, availability of information, gender differences, and communication between parents. Each condition facilitated or constrained the strategies that families were able to use. Implications for research, education and practice are discussed.
2002
Steele R
International Journal Of Palliative Nursing
2002
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.2002.8.9.10687" target="_blank" rel="noreferrer">10.12968/ijpn.2002.8.9.10687</a>