Weaving for the future: using rulers and roses
Humans; Leadership; Nurse's Role; Organizational Objectives; Evidence-Based Medicine; Forecasting; Models; Administration; Nursing; Nursing Process; Biomedical; Nursing Research/organization &; Oncologic Nursing/education/organization &; Technology Assessment
2001
Davies B
Canadian Oncology Nursing Journal
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/10.5737/1181912x113118122" target="_blank" rel="noreferrer">10.5737/1181912x113118122</a>
Using participant observation in pediatric health care settings: ethical challenges and solutions
2008
Carnevale FA; Macdonald ME; Bluebond-Langner M; McKeever P
Journal Of Child Health 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/10.1177/1367493507085616" target="_blank" rel="noreferrer">10.1177/1367493507085616</a>
Understanding Canadian Punjabi-speaking South Asian women's experience of breast cancer: A qualitative study
2008
Gurm BK; Stephen J; Mackenzie G; Doll R; Barroetavena MC; Cadell S
International Journal Of Nursing Studies
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.ijnurstu.2006.08.023" target="_blank" rel="noreferrer">10.1016/j.ijnurstu.2006.08.023</a>
Trends in Pediatric Palliative Care 2017; Issue #11
This commentary brings together perspectives from an interdisciplinary group of researchers –five trainees, a research manager, and a senior scientist –who share an interest in the emergent field of childhood ethics and pediatric palliative care.<br /><br />Feature Article: Marty C. M., Carter B. S. (2017, early online). Ethics and palliative care in the perinatal world, Seminars in Fetal & Neonatal Medicine.<a href="http://dx.doi.org/10.1016/j.siny.2017.09.001" target="_blank" rel="noreferrer">http://dx.doi.org/10.1016/j.siny.2017.09.001</a>
Teachman G; Passos dos Santos R; Avery S; Mastorakis K; Noronha C; Singh HK; Macdonald ME
<a href="http://pediatricpalliative.com/trends-in-pediatric-palliative-care-2017-issue-11/" target="_blank" rel="noreferrer">http://pediatricpalliative.com/trends-in-pediatric-palliative-care-2017-issue-11/</a>
PedPalASCNET
Article information provided for research and reference use only. Copyright PedPalASCNET.
Trauma and growth in Canadian carers
Female; Humans; Male; Family; Adult; Canada; Questionnaires; Aged; Middle Aged; Attitude; Internal-External Control; Non-U.S. Gov't; Research Support; bereavement; Caregivers/psychology; Psychological; Stress; Depression/psychology; Sociology; Acquired Immunodeficiency Syndrome/psychology
The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences; 51.7% of these individuals were male, 46% were female and 2.3% were transgender. The range of deaths experienced was from 0 to 110. Forty-four per cent of the carers were themselves HIV-positive. Of all the HIV carers in this study, 86.4% of them exhibited symptoms of post-traumatic stress disorder. Despite this, 81.8% had scores high enough to be indicative of post-traumatic growth. This study provides a portrait of bereaved HIV carers in Canada and both the positive and negative realities associated with that situation.
2003
Cadell S
AIDS Care
2003
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/10.1080/09540120310001595122" target="_blank" rel="noreferrer">10.1080/09540120310001595122</a>
Timing is everything: The experience of parental cancer for young adult daughters-a pilot study
2008
Puterman J; Cadell S
Journal Of Psychological Oncology
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/10.1300/j077v26n02_07" target="_blank" rel="noreferrer">10.1300/j077v26n02_07</a>
The wisdom of children
Child; Humans; Attitude to Death; Child Psychology
2002
Davies B
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.2002.8.9.10686" target="_blank" rel="noreferrer">10.12968/ijpn.2002.8.9.10686</a>
The sun always comes out after it rains: understanding posttraumatic growth in HIV carers
2007
Cadell S
Health & Social Work
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/10.1093/hsw/32.3.169" target="_blank" rel="noreferrer">10.1093/hsw/32.3.169</a>
The relationship between grief adjustment and continuing bonds for parents who have lost a child
Female; Humans; infant; Male; Grief; Adult; Parent-Child Relations; Interpersonal Relations; Questionnaires; Attitude to Death; Life Change Events; quality of life; adolescent; Adaptation; Psychological; infant; Newborn; Parents/psychology; Object Attachment
This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study methodology was used to describe six cases. Participants were classified into two groups based on scores on the Inventory of Complicated Grief. Commonalities in themes on the Continuing Bonds Interview and projective drawings were assessed. Those in the Non-Complicated Grief Group reported internalization of positive qualities and identification with the deceased child as a role model, whereas participants in the Complicated Grief Group did not report these experiences. In addition, the drawings of those in the Non-Complicated Grief Group were evaluated as more adaptive than those in the Complicated Grief Group.
2009
Ronen R; Packman W; Field NP; Davies B; Kramer R; Long JK
Omega
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/10.2190/om.60.1.a" target="_blank" rel="noreferrer">10.2190/om.60.1.a</a>
The Madison Clinic: Evaluation Of A Collaborative Outpatient Paediatric Palliative Care Clinic
Ambulatory Care Facilities; Continuity Of Patient Care; Paediatrics; Palliative Care
BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format. METHOD: The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis. RESULTS: In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic. DISCUSSION: A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program.
Siden H; Straatman L; Miller T; Ham J
Paediatrics & Child Health
2009
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735380/" target="_blank" rel="noreferrer">PMC2735380</a>
The integration of religious traditions in Japanese children's view of death and afterlife
2007
Sagara-Rosemeyer M; Davies B
Death Studies
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/10.1080/07481180601100525" target="_blank" rel="noreferrer">10.1080/07481180601100525</a>
The grief of siblings
Grief; Siblings
Davies B
Helping Bereaved Children : A Handbook For Practitioners
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).
Book/Book Section
The family environment in bereaved families and its relationship to surviving sibling behavior
Family
1988
Davies B
Child Health Care
1988
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/10.1207/s15326888chc1701_4" target="_blank" rel="noreferrer">10.1207/s15326888chc1701_4</a>
The empty space phenomenon: The process of grief in the bereaved family
SSHRC CURA
1987
McClowry S; Davies B; May A; Kulenkamp E; Martinson I
Death Studies
1987
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/10.1080/07481188708252200" target="_blank" rel="noreferrer">10.1080/07481188708252200</a>
The emerging issue of euthanasia
Child; Humans; infant; Terminal Care; Netherlands; Longitudinal Studies; adolescent; Preschool; decision making; infant; Pediatrics/statistics & numerical data; Newborn; Euthanasia
2005
Siden HB
Archives Of Pediatrics & Adolescent Medicine
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/10.1001/archpedi.159.9.887" target="_blank" rel="noreferrer">10.1001/archpedi.159.9.887</a>
The boy who refused an IV: a case report of subcutaneous clodronate for bone pain in a child with Ewing Sarcoma
Longitudinal Studies
ABSTRACT: BACKGROUND: Bone pain in malignancy can be challenging to treat. Bisphosphonates have been found to be useful in adults with bone pain, but there are no reports of their use in children for this indication. In pediatric palliative medicine there are hurdles in translating knowledge gained primarily in adult studies into application in children. Obstacles exist in initially determining whether the evidence supports using a drug in children, and once a drug is chosen, then determining the optimal route of delivery. There is very little data to guide pediatric practitioners in this situation. CASE PRESENTATION: A 9 year old boy with disseminated Ewing Sarcoma presented with extremity pain not responsive to a combination of opiates, gabapentin and non-steroidal anti-inflammatory drugs. Clodronate, a bisphosphonate, was added to the regimen to treat bone pain. It was given subcutaneously every 4 weeks with a good response and no side effects. CONCLUSION: This case report describes the use of a bisphosphonate, clodronate, given subcutaneously to a child with Ewing sarcoma with effective relief of bone pain. It describes how the care team encountered the challenges inherent in translating adult therapy into a pediatric regimen. Furthermore the report details how a regimen was developed to address this child's concerns regarding medication administration. Further effort needs to be made at finding solutions to address the lack of good evidence for pediatric palliative therapies.
2007
Siden H
Journal Of Medical Case Reports
2007
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Journal Article
<a href="http://doi.org/10.1186/1752-1947-1-7" target="_blank" rel="noreferrer">10.1186/1752-1947-1-7</a>
The (re)construction of self after the death of a partner to HIV/AIDS
2007
Cadell S; Marshall S
Death Studies
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/10.1080/07481180701356886" target="_blank" rel="noreferrer">10.1080/07481180701356886</a>
Telehealth: connecting with families to promote health and healing
Family; Telemedicine; home care services
Telehealth is defined as the provision of health care via telecommunications wherever individuals are geographically separated. In this literature review, we explore the role of telehealth in family care. Telehealth has not been fully examined for its potential to support health and healing in families. Moreover, technological innovation, such as telehealth, presents an opportunity to question concepts and approaches to family care.
2001
Siden H; Young L; Tredwell S; Starr E
Journal Of Family Nursing
2001
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Journal Article
<a href="http://doi.org/10.1177/107484070100700401" target="_blank" rel="noreferrer">10.1177/107484070100700401</a>
Symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder: a scoping review protocol
Adolescent; Autism Spectrum Disorder; Child; Delivery of Health Care; Humans; Medical Marijuana; Parents; Review Literature as Topic; Medicinal Cannabis
OBJECTIVE: The objective of this scoping review is to map and identify the symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder. INTRODUCTION: Autism spectrum disorder is a neurodevelopmental disorder that impacts social communication and social interaction, and is associated with restrictive and repetitive behaviors and interests. Medicinal cannabis has become a potential area of interest for parents for the treatment of autism spectrum disorder symptoms in their children. There is some evidence that cannabinoids may be involved in autism spectrum disorder, laying a potential foundation for medicinal cannabis utility; however, previous reviews did not identify any clinical research on this topic. INCLUSION CRITERIA: This scoping review will consider all published and unpublished studies that investigate the use of medicinal cannabis in autism spectrum disorder, where at least 50% of the participants have a diagnosis of autism spectrum disorder and at least 50% of the study population is 0 to 18 years of age, or where pediatric data are reported separately. Studies undertaken in any context (hospital or community) and in any geographic location will be included. METHODS: We will search MEDLINE, Embase, CINAHL, PsycINFO, Web of Science, and Google Scholar, and the gray literature sources for studies. Two independent team members will screen titles and abstracts, review full texts for potential inclusion, and extract data for all studies. The results will be presented as a narrative synthesis and in tabular form.
Fletcher S; Pawliuk C; Ip A; Oberlander T; Siden H
JBI Evidence Synthesis
2021
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<a href="http://doi.org/10.11124/JBIES-20-00001" target="_blank" rel="noreferrer noopener">10.11124/JBIES-20-00001</a>
Supportive care needs of women with lung cancer
Lung Neoplasms; caregivers; Support; Questionnaires; Lung Cancer; Women
The main purpose of this exploratory study was to identify the supportive care needs of women with lung cancer who attend an ambulatory regional cancer centre. Lung cancer has more than a physical impact on those who are diagnosed with the disease, yet relatively little has been reported on the supportive care needs beyond those for symptom management. A total of 34 women diagnosed with lung cancer participated in this exploratory study by completing a self-report questionnaire (Supportive Care Needs Survey). The data provided clear indication that a range of needs exists for this group of women and many needs remain unmet. Lack of energy, pain, and concern about those close to them were the most frequently reported needs. Patients expressed difficulty managing their needs and many experienced emotional distress because of their difficulties. Suggestions for practice and future research are offered to assist cancer nurses in caring for this group of patients.
2008
Fitch MI; Steele R
Canadian Oncology Nursing Journal
2008
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Journal Article
<a href="http://doi.org/10.5737/1181912x18118" target="_blank" rel="noreferrer">10.5737/1181912x18118</a>
Supporting families in palliative care.
Davies B; Steele R
Oxford Textbook Of Palliative Nursing
2010
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Book/Book Section
Supporting families in palliative care.
Davies B
Ofxord Textbook Of Palliative Care Nursing
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).
Book/Book Section
Sublingual atropine drops for the treatment of pediatric sialorrhea
Excess oral secretions or sialorrhea is a common problem affecting children and adults with neurological disorders, as well as those approaching the end of life because of a variety of underlying illnesses. Systemic anticholinergic medications are often prescribed in an attempt to improve quality of life and reduce complications; yet, response rates are variable, and a sizable proportion of patients discontinue these drugs as a result of intolerable side effects. This report describes the successful use of a local treatment, sublingually delivered ophthalmic atropine drops, to reduce sialorrhea in a child receiving palliative care. In addition, medical evidence for the safety and efficacy of traditionally prescribed systemic medications for the treatment of pediatric sialorrhea is reviewed.
2010
Rapoport A
Journal Of Pain And Symptom Management
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/10.1016/j.jpainsymman.2010.02.007" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2010.02.007</a>
Sibling bereavement: research-based guidelines for nurses. [Review] [27 refs]
IM; sibling bereavement; N
Despite the marked improvement in the treatment of childhood cancer in recent decades, there are children who die, leaving behind a legacy of grief for all who knew them, including their siblings. Nurses can play a significant role in facilitating healthy grieving for these surviving children. The results of several studies pertaining to sibling bereavement after the death of a child from cancer provide guidelines for clinicians. [References: 27]
1993-05
Davies B
Seminars In Oncology Nursing
1993
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Journal Article
Sibling bereavement and continuing bonds.
Child; Humans; Adult; Interpersonal Relations; adolescent; Adaptation; Psychological; bereavement; sibling bereavement; SSHRC CURA; Siblings/psychology; T
Historically, from a Freudian and medical model perspective, emotional disengagement from the deceased was seen as essential to the successful adaptation of bereavement. A major shift in the bereavement literature has occurred and it is now generally accepted that despite the permanence of physical separation, the bereaved remains involved and connected to the deceased and can be emotionally sustained through continuing bonds. The majority of literature has focused on adults and on the nature of continuing bonds following the death of a spouse. In this article, the authors demonstrate how the continuing bonds concept applies to the sibling relationship. We describe the unique continued relationship formed by bereaved children and adolescents following a sibling loss, highlight the factors that influence the siblings continuing bonds expressions, and offer clinical interventions. In our view, mental health professionals can play an important role in helping parents encourage activities that may facilitate the creation and maintenance of continuing bonds in their children.
2006-11
Packman W; Horsley H; Davies B; Kramer R
Death Studies
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
Shared life space and sibling bereavement responses.
bereavement; IM; sibling bereavement; N
1988-12
Davies B
Cancer Nursing
1988
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
Research priorities in pediatric palliative care: a delphi study
Attitude of Health Personnel; Attitude to Health; Benchmarking; bereavement; Canada; Child; Consensus; Delphi Technique; Evidence-Based Practice; Family/psychology; Humans; Needs Assessment/organization & administration; Pain/prevention & control; Palliative Care/organization & administration; Pediatrics/organization & administration; Practice Guidelines as Topic; Psychological/prevention & control; Questionnaires; Research Design; Research/organization & administration; Stress
Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal of the project was to achieve consensus among palliative care practitioners and researchers regarding the identification of pertinents lines of research. Method: A Delphi technique was used with an interdisciplinary panel (n=14–16) of researchers and frontline clinicians in pediatric palliative care in Canada. Results: Four priority research questions were identified: What matters most for patients and parents receiving pediatric palliative services? What are the bereavement needs of families in pediatric palliative care? What are the best practice standards in pain and symptom management? What are effective strategies to alleviate suffering at the end of life? Conclusions: These identified priorities will provide guidance and direction for research efforts in Canada, and may prove useful in providing optimal care to patients and families in pediatric palliative care.
Steele R; Fletcher JM; Bosma H; Siden H; Straatman L; Fleming C; Cadell S; Davies B
Journal Of Palliative Care
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).
<a href="http://scholars.wlu.ca/scwk_faculty/12/" target="_blank" rel="noreferrer">scwk_faculty/12</a>
Psychological Correlates of Depression in Children with Recurrent Abdominal Pain
PedPal Lit
Objective To examine the associations between coping style, social support, self-efficacy, locus of control, maternal adjustment, and depressive symptoms in children with recurrent abdominal pain (RAP) of childhood. Methods Fifty children with RAP (8-18 years) and their mothers were recruited from a gastroenterology clinic (GI) and community medical practices. Participants completed questionnaires that assessed coping style, social support, self-efficacy, locus of control, maternal adjustment, and psychological adjustment. Results Passive coping strategies such as isolating oneself from others, catastrophizing, and behavioral disengagement were associated with more child-reported depressive symptoms. Higher levels of self-efficacy and greater social support from teachers and classmates were associated with fewer child-reported depressive symptoms. Higher levels of maternal adjustment problems, higher social support from parents, and lower social support from classmates were associated with maternal reports of more child internalizing symptoms. Conclusions These findings suggest that coping style, self-efficacy, social support, and maternal adjustment are correlates of depressive symptoms in children with RAP.
2006
Kaminsky L; Robertson M; Dewey D
Journal of Pediatric Psychology
2006
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Journal Article
Power, pathalogical worldviews and the strengths perspective in social work
2009
Grant J; Cadell S
Families In Society
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/10.1606/1044-3894.3921" target="_blank" rel="noreferrer">10.1606/1044-3894.3921</a>
Posttraumatic growth and HIV bereavement: Where does it start and when does it end?
Grief; Longitudinal Studies; bereavement; Stress Disorders; Post-Traumatic; Post-Traumatic; Posttraumatic growth; HIV bereavement; iatrogenic effects of research interventions; Mixed methods; Trauma and recovery
There is growing interest in researching posttraumatic growth and understanding how to enhance positive outcomes in trauma survivors. This study undertook a systematic exploration of the posttraumatic growth in bereaved caregivers of people with HIV/AIDS. Following a survey (n=174), in-depth interviews were conducted with 15 individuals. Quantitative and qualitative data are used to illustrate how those who had low scores of posttraumatic growth recounted positive outcomes. Methodological and clinical implications are explored.
2006
Cadell S; Sullivan R
Traumatology
2006
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Journal Article
<a href="http://doi.org/10.1177/153476560601200104" target="_blank" rel="noreferrer">10.1177/153476560601200104</a>
Perceptions of control and long-term recovery from rape
Female; Humans; Adult; Middle Aged; Self Efficacy; Ontario; Multivariate Analysis; Time Factors; Internal-External Control; Regression Analysis; adolescent; Non-U.S. Gov't; Research Support; Adaptation; Psychological; retrospective studies; Stress Disorders; Survivors/psychology; Rape/psychology; Disease Susceptibility; Depression/etiology/physiopathology; Post-Traumatic/etiology/physiopathology; Recovery of Function
The relationship between perceptions of control and symptoms of both long-term depression and post-traumatic stress was examined. Enduring beliefs of personal competence and control were found to be associated with lower rates of depression and stress and to be stronger predictors of long-term recovery than were rape-specific attributions. Implications for clinical practice are discussed.
1999
Regehr C; Cadell S; Jansen K
The American Journal Of Orthopsychiatry
1999
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Journal Article
<a href="http://doi.org/10.1037/h0080386" target="_blank" rel="noreferrer">10.1037/h0080386</a>
Pediatric patients receiving palliative care in Canada: results of a multicenter review
Child; Cross-Sectional Studies; Humans; Canada; Preschool; infant; Congenital Abnormalities/mortality; Neoplasms/mortality; Nervous System Diseases/mortality; Palliative Care/utilization; retrospective studies
OBJECTIVES: To describe the patients who received care from the 8 dedicated pediatric palliative care programs in Canada in 2002 and to estimate the number of children who may have benefited but did not receive services from these programs. DESIGN: Retrospective review of medical records combined with a survey of each program. SETTING: Seven pediatric palliative care programs based in tertiary care settings and 1 freestanding children's hospice. PARTICIPANTS: The programs cared for 317 children during 2002, of whom 123 died during that year. An additional 32 children died by the end of 2003. MAIN EXPOSURE: Pediatric palliative care program. RESULTS: Nearly half (48.6%) of the patients were younger than 5 years, and almost half of these were younger than 1 year. Primary diagnoses were disorders of the nervous system (39.1%), malignancies (22.1%), and conditions arising in the perinatal period or congenital anomalies (22.1%). Most of the children (43.9%) died at home, with those centers reporting more comprehensive home care services having the highest percentage of home deaths. From a national perspective, between 5% and 12% of the children who could benefit from palliative care received services from 1 of these programs. CONCLUSIONS: Pediatric palliative care programs in Canada care for a diverse population of patients with a wide range of age and disease conditions. Only a small percentage of children who die, however, receive services from these dedicated programs.
2007
Widger K; Davies D; Drouin DJ; Beaune L; Daoust L; Farran RP; Humbert N; Nalewajek F; Rattray M; Rugg M; Bishop M
Archives Of Pediatrics & Adolescent Medicine
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/10.1001/archpedi.161.6.597" target="_blank" rel="noreferrer">10.1001/archpedi.161.6.597</a>
Pediatric Palliative Care
Davies B
Encyclopedia Of Death And The Human Experience
2009
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Book/Book Section
Pediatric palliative care
Liben S
Palliative Care: Core Skills And Clinical Competencies
2007
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Book/Book Section
Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?
Child; Child Preschool; Enteral Nutrition/ Adverse Effects; Female; Humans; Infant; Male; Prognosis; Terminal Care/ Methods
Siden H; Tucker T; Derman S; Cox K; Soon GS; Hartnett C; Straatman L
Journal Of Palliative Care
2009
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/19824283" target="_blank" rel="noreferrer">19824283</a>
Patterns of grief in young children following the death of a sibling
Grief; Death; sibling bereavement
Abstract Specific grief behaviors observed in children ages 4-16 years in the 2 years after the death of a sibling are reported. Using the Child Behavior Checklist (CBCL), the parents of 90 boys and girls rated the occurrence of behavior problems in their children. Behavior problems identified in 50% or more of the children are reported both for the total sample and by age and sex groups. The behaviors commonly observed in the bereaved children predominanty fell into the Agression subscale of the standardized CBCL. It is suggested that bereaved children use aggressive behaviors instrumentally to gain parental attention, rather than as an instinctual expression of hostility and anger.
1995
McCown DE; Davies B
Death Studies
1995
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/10.1080/07481189508252712" target="_blank" rel="noreferrer">10.1080/07481189508252712</a>
Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death
Child; Humans; Intensive Care Units; Professional-Family Relations; Death; Hospitals; Pediatric; Non-U.S. Gov't; Research Support; bereavement; Parents/psychology; social support; Hospital; Personnel
OBJECTIVES: Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes, and attending memorial services. This study explores the significance of these acts for bereaved parents. METHODS: Twelve parents whose children died in the ICU of a tertiary care pediatric hospital were interviewed, to explore their experiences of the death. Investigators reviewed transcripts and observational field notes. Multidisciplinary team triangulation was used to corroborate themes, with cross-case analysis. RESULTS: Three themes emerged regarding parental experiences of staff members' acts, ie, (1) parents placed great importance on the hospital's memorial service and on staff members' presence at the service; (2) parents found it difficult to return to the hospital after the child's death but all attended the memorial service, finding some closure in the return; and (3) parents appreciated receiving cards and greatly valued staff members' efforts to telephone/visit and to attend the funeral. Months later, parents remembered positively which staff members engaged in which activities. Conversely, parents expressed disappointment when staff members did not engage in these activities and/or were absent from memorial/funeral services. CONCLUSIONS: Efforts to support families and to commemorate deceased children are appreciated by bereaved parents. Staff members' absences at commemorative events and a lack of supportive acts are noticed and regretted by families. Staff members and program administrators should attempt to arrange workloads to ensure meaningful contact between staff members and parents during the bereavement period.
2005
Macdonald ME; Liben S; Carnevale FA; Rennick J; Wolf SL; Meloche D; Cohen SR
Pediatrics
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/10.1542/peds.2004-1980" target="_blank" rel="noreferrer">10.1542/peds.2004-1980</a>
Parental depression following the death of a child
Child; Death; Depression
1991
Martinson I; Davies B; McClowry S
Death Studies
1991
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/10.1080/07481189108252429" target="_blank" rel="noreferrer">10.1080/07481189108252429</a>
Pain management for children with a developmental disability in a primary care setting
RDF Project
Siden H; Oberlander T
Pain In Children: A Practical Guide For Primary 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).
Book/Book Section
PaedPalLit: The International Journal of Paediatric Palliative Care
Hunt A; Jassal S; Siden H; Thompson A; McCulloch R
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).
Book/Book Section