"Safe passage": social work roles and functions in hospice care
Female; Humans; Male; Terminal Care; Aged; Professional-Family Relations; Interprofessional Relations; Hospices; Professional-Patient Relations; Social Work
What are social work's unique roles and functions in behalf of patients and their families in hospice care? The question is answered in the first phase of a Joint Research Project of social work faculty, hospice social workers and graduate social work students. The special roles, illustrative functions and potential outcomes of social work in hospice are identified. Case examples are utilized to illustrate social work's response to patients, families, staff and the service network. The authors hypothesize that social workers in hospice and other health care settings are instrumental in charting and facilitating within a nurturing environment a "safe passage" for the person-in-transition.
1988
Rusnack B; Schaefer SM; Moxley D
Social Work In 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/10.1300/j010v13n03_02" target="_blank" rel="noreferrer">10.1300/j010v13n03_02</a>
A communication strategy and brochure for relatives of patients dying in the ICU
Female; Humans; Male; Intensive Care Units; Aged; Middle Aged; Professional-Family Relations; Communication; 80 and over; bereavement; Terminally Ill/psychology; Family/psychology; ICU Decision Making; Stress Disorders; Depression/epidemiology; Pamphlets; Anxiety/epidemiology; Post-Traumatic/epidemiology/prevention & control; Visitors to Patients/psychology
BACKGROUND: There is a need for close communication with relatives of patients dying in the intensive care unit (ICU). We evaluated a format that included a proactive end-of-life conference and a brochure to see whether it could lessen the effects of bereavement. METHODS: Family members of 126 patients dying in 22 ICUs in France were randomly assigned to the intervention format or to the customary end-of-life conference. Participants were interviewed by telephone 90 days after the death with the use of the Impact of Event Scale (IES; scores range from 0, indicating no symptoms, to 75, indicating severe symptoms related to post-traumatic stress disorder [PTSD]) and the Hospital Anxiety and Depression Scale (HADS; subscale scores range from 0, indicating no distress, to 21, indicating maximum distress). RESULTS: Participants in the intervention group had longer conferences than those in the control group (median, 30 minutes [interquartile range, 19 to 45] vs. 20 minutes [interquartile range, 15 to 30]; P<0.001) and spent more of the time talking (median, 14 minutes [interquartile range, 8 to 20] vs. 5 minutes [interquartile range, 5 to 10]). On day 90, the 56 participants in the intervention group who responded to the telephone interview had a significantly lower median IES score than the 52 participants in the control group (27 vs. 39, P=0.02) and a lower prevalence of PTSD-related symptoms (45% vs. 69%, P=0.01). The median HADS score was also lower in the intervention group (11, vs. 17 in the control group; P=0.004), and symptoms of both anxiety and depression were less prevalent (anxiety, 45% vs. 67%; P=0.02; depression, 29% vs. 56%; P=0.003). CONCLUSIONS: Providing relatives of patients who are dying in the ICU with a brochure on bereavement and using a proactive communication strategy that includes longer conferences and more time for family members to talk may lessen the burden of bereavement. (ClinicalTrials.gov number, NCT00331877.)
2007
Lautrette A; Darmon M; Megarbane B; Joly LM; Chevret S; Adrie C; Barnoud D; Bleichner G; Bruel C; Choukroun G; Curtis JR; Fieux F; Galliot R; Garrouste-Orgeas M; Georges H; Goldgran-Toledano D; Jourdain M; Loubert G; Reignier J; Saidi F; Souweine B; Vincent F; Barnes NK; Pochard F; Schlemmer B; Azoulay E
The New England Journal Of 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/10.1056/NEJMoa063446" target="_blank" rel="noreferrer">10.1056/NEJMoa063446</a>
A gap between the intention of the Swedish law and interactions between nurses and children of patients in the field of palliative oncology - The perspective of nurses
Attitude Of Health Personnel; Child Of Impaired Parents/lj [legislation & Jurisprudence]; Intention; Neoplasms/nu [nursing]; Professional-family Relations; Adolescent; Adult; Child; Hospice And Palliative Care Nursing; Humans; Oncology Nursing; Parents; Sweden
PURPOSE: Children who have a parent with incurable cancer are in a vulnerable situation and the Swedish law tries to protect them. This article aims to explore the interactions between nurses and children of patients with incurable cancer from the nurses' perspective. METHOD: Semi-structured interviews with nine nurses in palliative oncology in Southern Sweden. Latent content analysis was carried out, inspired by Lundmann and Graneheim. RESULTS: Parents are gatekeepers to the children's involvement and meetings with the healthcare professionals. Therefore the nurses were dependent on the parents for contact with their children. Additionally, nurses were subject to the structural frame of their working environment in terms of time, economy, resources and the medical logic ruling the priorities for nursing during their daily working day. The opportunities to pay attention to the children of patients were limited, despite good intentions, willingness and a favourable legal framework. Teenagers were regarded as a challenge, and per se they challenged the nurses' opportunities to gain control of the meetings and situations around the families. CONCLUSIONS: Often nurses did not see and acknowledge the children of the palliative patient. They knew that the children were there and that it was important that they were there, but they challenged the order in the working environment in relation to time-allocated tasks and working flow. In the working environment patients were prioritised over relatives. From the perspective of nurses, there is a gap between the intentions of the Swedish law and the interactions between nurses and children. Copyright _ 2016 Elsevier Ltd. All rights reserved.
Karidar H; Akesson H; Glasdam S
European Journal Of Oncology Nursing
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.ejon.2016.01.005" target="_blank" rel="noreferrer">10.1016/j.ejon.2016.01.005</a>
A longitudinal method of teaching pediatric palliative care to interns: preliminary findings regarding changes in interns' comfort level
Female; Humans; Male; Young Adult; Adult; Attitude of Health Personnel; Questionnaires; Attitude to Death; Professional-Family Relations; Longitudinal Studies; Internship and Residency; Professional-Patient Relations; Professional Competence; Pediatrics/education; Palliative Care/methods; Curriculum/standards; Documentation/standards; Teaching/methods
OBJECTIVE: A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns' self-assessed comfort levels regarding caring for children with life-threatening conditions. METHODS: A newly created assessment tool was administered to interns in order to rate their comfort regarding pediatric palliative care at the beginning and conclusion of their intern year. RESULTS: Twenty-two of the 29 interns completed this survey. Baseline data indicated 55% of the interns had some experience with taking care of a dying pediatric patient during their medical school training, and 79% indicated that they had taken care of a dying adult. Only 7% of the interns felt adequately prepared to deal with death and dying, but all interns indicated interest in further learning about pediatric palliative care. Comparison of the overall comfort levels of the 22 responding residents before and after the first year of training in 20 different related tasks demonstrated a significant self-assessed improvement of comfort in seven areas. There was no increase in self-reported comfort in communication related to palliative care. SIGNIFICANCE OF RESULTS: Residents indicated increased comfort in some areas of pediatric palliative care after the first year of their training. The underlying cause of this increased comfort is unclear at this time. The overall effect of longitudinal palliative care curricula on residents' level of comfort in caring for this population deserves further assessment.
2010
Yazdani S; Evan E; Roubinov D; Chung PJ; Zeltzer L
Palliative & Supportive 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/10.1017/S147895150999068X" target="_blank" rel="noreferrer">10.1017/S147895150999068X</a>
A Qualitative Investigation of Fathers' Experiences of Looking After a Child with a Life-Limiting Illness, In Process and In Retrospect
Child; Female; Humans; Male; Grief; Adult; Attitude to Death; Professional-Family Relations; Life Change Events; Adaptation; Psychological; Caregivers/psychology; Palliative Care/psychology; social support; Gender Identity; Interview; Chronic Disease/psychology; Terminal Care/psychology; Marriage/psychology; Home Nursing/psychology; Fathers/psychology; father experience; Father-Child Relations
Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused specifically upon this group of children and their families. This study utilized qualitative methods to investigate the experience of fathers, a group who are often under-represented in child illness research. The research aim was to gain an understanding of fathers' experiences of having a child with a life-limiting illness, its impact upon them, and their perceptions of service provision. The data from eight interviews was analysed using Interpretative Phenomenological Analysis. Four main themes emerged highlighting the fathers' feeling that their world had been turned upside down, how they lived with the knowledge their child would die, how men perceive themselves as different from women, and the fathers' wish to contribute to changing and improving how other fathers might cope with a child with a life-limiting illness. The results are discussed particularly in relation to gender issues. Various implications for clinical practice and service provision are considered. Suggestions are also made for future research.
2007
Ware J; Raval H
Clinical Child Psychology And Psychiatry
2007
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Journal Article
<a href="http://doi.org/10.1177/1359104507080981" target="_blank" rel="noreferrer noopener">10.1177/1359104507080981</a>
Addressing transition to adult health care for adolescents with special health care needs
Cross-Sectional Studies; Female; Humans; Male; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Socioeconomic Factors; Sampling Studies; Family Characteristics; Case Management; Aging; adolescent; Parents/psychology; Health Surveys; United States/epidemiology; Continuity of Patient Care/organization & administration; poverty; Chronic Disease/epidemiology/therapy; African Americans/statistics & numerical data; European Continental Ancestry Group/statistics & numerical data; Hispanic Americans/sn [Statistics & Numerical Data]; Insurance Coverage/statistics & numerical data
OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the 2000-2001 National Survey of Children With Special Health Care Needs were used. The adequacy of transition services was determined by parent self-report. Explanatory variables, including parental education, family poverty status, race/ethnicity, measures of the severity and complexity of conditions, health insurance status, having a personal doctor, and the quality of the parent's relationship with the adolescent's doctor, were entered into a regression model. RESULTS: Overall, 50.2% of parents reported that they had discussed transition issues with their adolescent's doctor and 16.4% had discussed and developed a plan for addressing those needs. In a multivariate regression analysis, correlates of the adequacy of transition services included older age, female gender, complexity of health care needs, and higher quality of the parent-doctor relationship. CONCLUSIONS: Among adolescents with special health care needs, those who were older and those with more complicated needs were more likely to have addressed the transition from a pediatric to adult-oriented system of care. Furthermore, this analysis demonstrated a strong association between a high-quality parent-provider relationship and the extent to which transition issues were addressed. The importance of transition services for adolescents with less complex needs and the overall impact of health care transition services were not assessed in this study and remain important questions for future investigations.
2005
Scal P; Ireland M
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.2004-0458" target="_blank" rel="noreferrer">10.1542/peds.2004-0458</a>
Advanced care planning discussions with adolescents and young adults with cancer
adolescent; Female; Humans; Male; Young Adult; Neoplasms; Terminal Care; Parent-Child Relations; Parents; Professional-Family Relations; Disease Progression; Legal Guardians; quality of life; advance care planning; Neoplasm Invasiveness
2013-08
McBride D
Journal Of Pediatric Nursing
2013
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Journal Article
<a href="http://doi.org/10.1016/j.pedn.2013.04.002" target="_blank" rel="noreferrer">10.1016/j.pedn.2013.04.002</a>
After the child dies
Child; Female; Humans; Male; Parents; Emotions; Attitude to Death; Professional-Family Relations; Death; Self-Help Groups
The parents of a child who dies feel the emotions of shock, mourning, and confusion as they slowly come to accept the finality of the child's death. In contemporary America they frequently feel isolated and abandoned. The individuals and institutions that were sources of emotional support in the period immediately after the child's death are no longer available after a few weeks or months. This is due to several factors: (1) American society is very mobile and the nuclear family often does not have the emotional support of the stable, extended family. (2) Children die less frequently today than they did in the past. In fact, it is almost a unique event. As a consequence, the parents of the dead child have less opportunity to share their feelings with other adults and the community at large. (3) There appears to be a misconception held by the general population that the mourning process and emotional confusion terminate after an interval of a few weeks or months. These factors were influential in motivating a number of parents who had lost children to organize a group which meets bi-monthly. The group is open-ended and nothing said is out of place. The parents have been very helpful to each other in diminishing feelings of isolation, concerns about "strange" thoughts, and feelings of hopeless depression. Requests for information on how to form such a group have come from a number of communities in various parts of the country.
1976
Fischhoff J; O'Brien N
The Journal Of Pediatrics
1976
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/s0022-3476(76)80747-0" target="_blank" rel="noreferrer">10.1016/s0022-3476(76)80747-0</a>
Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients
Child; Cross-Sectional Studies; Female; Humans; infant; Male; United States; Mental Competency; Adult; Data Collection; Attitude of Health Personnel; Middle Aged; Professional-Family Relations; Euthanasia; Religion and Medicine; Legal Guardians; Morals; Intensive Care; Hospitals; Ethics; Teaching; Medical; decision making; Newborn; ICU Decision Making; Passive
OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical decision making. We sought to determine how physicians view the role of family interests in surrogate medical decision making. DESIGN: Cross-sectional mail survey. SETTING: Remote study.PATIENTS: Surveyed were neonatologists, pediatric intensivists, and medical intensivists affiliated with American medical schools. MEASUREMENTS AND MAIN RESULTS: A total of 327 (55%) of 596 surveys were returned; 35% of respondents were pediatric intensivists, 39% were neonatologists, and 26% were medical intensivists. The majority of respondents believed that family interests should be considered in decisions for incompetent patients, even if those interests are not necessarily important interests of the patient. Less than 10% preferred the traditional model in which the physician-patient relationship is exclusive and family interests are excluded. Medical intensivists, and those who described themselves as more religious, more opposed to healthcare rationing, and more protective of patients, tended to prefer patient-centered surrogate decision-making models. Physicians who treat children, especially neonatologists, were more accepting of family-centered surrogate decision-making models than were physicians who exclusively treat adults. CONCLUSIONS: A majority of the academic intensivists in our study believed that family interests should play an important role in medical decision making for incompetent patients. Our findings suggest that the traditional view of the physician-patient relationship may represent an overly simplistic model for medical decision making.
2003
Hardart GE; Truog RD
Critical Care Medicine
2003
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Journal Article
<a href="http://doi.org/10.1097/01.ccm.0000084805.15352.01" target="_blank" rel="noreferrer">10.1097/01.ccm.0000084805.15352.01</a>
Because statistics don't tell the whole story: a call for comprehensive care for children with cancer
Delivery of Health Care; Humans; Palliative Care; Neoplasms; decision making; Pediatrics; Professional-Family Relations; social support; Palliative Care; quality of life; Adaptation; Psychological; Statistical; Grief; Data Interpretation; Integrated
2014-04
Cullen J
Ca: A Cancer Journal For Clinicians
2014
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Journal Article
<a href="http://doi.org/10.3322/caac.21215" target="_blank" rel="noreferrer">10.3322/caac.21215</a>
Bereavement care in the critical care setting
Humans; Cultural Diversity; Professional-Family Relations; Clinical Competence; Adaptation; Psychological; bereavement; Family/psychology; social support; SSHRC CURA; Aftercare; Critical Care/psychology
Bereavement care in critical care units should involve providing support and counseling for the family members prior to death, immediately after the death has occurred, and at least some follow-up in the future months. These are crucial moments: Once the death has occurred, the family members status changes from anticipatory to bereaved status.
1997
Warren NA
Critical Care Nursing Quarterly
1997
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Journal Article
<a href="http://doi.org/10.1097/00002727-199708000-00009" target="_blank" rel="noreferrer">10.1097/00002727-199708000-00009</a>
Bereavement support for families following the death of a child from cancer: experience of bereaved parents
Child; Humans; Intensive Care Units; bereavement; Death; Neoplasms; Parents; Siblings; Professional-Family Relations; Death; social support; Pediatric; bereavement; Parents/psychology; Neoplasms; social support; sibling bereavement; Hospital; SSHRC CURA; Personnel; Siblings/psychology
This study explored the experiences and needs of nine parents who had received hospital-based bereavement support following the death of their child from cancer, in Western Australia. Six prominent themes emerged from thematic data analysis: personal grief, personal coping, concern for siblings of the deceased child, hospital bereavement support, community supports and unmet needs. Parents identified the need for more supportive contact from hospital staff during the palliative phase and following the child's death, early provision of information on how to practically and emotionally prepare for the death of their child, contact with other bereaved parents, and formal grief support for siblings. Areas for future research include exploration of parents' wish to become involved in activities to help others, bereavement support for siblings, the level of contact with the hospital unit that may be therapeutically beneficial, and parental behaviors associated with accessing both hospital and community-based bereavement supports.
2006
deCinque N; Monterosso L; Dadd G; Sidhu R; Macpherson R; Aoun S
Journal Of Psychosocial Oncology
2006
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Journal Article
<a href="http://doi.org/10.1300/J077v24n02_05" target="_blank" rel="noreferrer">10.1300/J077v24n02_05</a>
Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions
Adult;Advance Care Planning/ethics;Advance Care Planning/standards;Attitude Of Health Personnel;Australia;Child;Consumer Health Information/methods;Decision Making/ethics;Humans;Internet;Parents/education;Parents/psychology;Pilot Projects;Professional-family Relations;Publications;Terminal Care/methods;Terminal Care/standards
BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps. AIM: We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. DESIGN: A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital. SETTING/PARTICIPANTS: Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study. RESULTS: Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes. CONCLUSIONS: The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.
Xafis V; Gillam L; Hynson J; Sullivan J; Cossich M; Wilkinson D
Journal Of Palliative Medicine
2015
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10.1089/jpm.2015.0048
Cerebral palsy: what parents and doctors want to know
Child; Humans; infant; Parents; Professional-Family Relations; Physician's Role; Patient Education as Topic; Forecasting; adolescent; Preschool; infant; Newborn; Developmental Disabilities/etiology; Cerebral Palsy/diagnosis/etiology/therapy; Research/trends
2003
Rosenbaum P
Bmj (clinical Research Ed.)
2003
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Journal Article
<a href="http://doi.org/10.1136/bmj.326.7396.970" target="_blank" rel="noreferrer">10.1136/bmj.326.7396.970</a>
Characteristics of family conferences at the bedside versus the conference room in pediatric critical care
Child; Female; Humans; Male; Intensive Care Units; patient care team; decision making; Cohort Studies; Health Care Surveys; Parents; Attitude of Health Personnel; Questionnaires; Prospective Studies; Professional-Family Relations; Physicians; Patient Participation; Intensive Care; Pediatric
OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians (90.9%) providing care to 29 patients whose families participated in 58 family conferences. MEASUREMENTS AND MAIN RESULTS: Family conferences, defined as a meeting involving the parent(s) of a PICU patient and the critical care attending physician to discuss a treatment decision, redirection of care from curative to palliative, or deliver bad news, occurred most commonly among families of the sickest patients. Conferences were conducted at the bedside 20 times out of 58 (33%). Although physicians stated a general preference to discuss withdrawal or withholding care in the conference room, there was no difference in location during actual conferences. Physicians preferred the bedside when they wanted the patient to participate (p = 0.01) or because it was perceived to be easier (p < 0.0005) or faster (p = 0.016) to conduct, while the conference room was preferred when additional space was needed (p < 0.0005). Family conferences at the bedside were less likely to include a social worker (p < 0.0005), consultant physicians (p = 0.043), or father of the patient (p = 0.006) as compared with conferences in a conference room. Family conferences convened to discuss a treatment were followed by a decision within 24 hours (42% of the time) and a change in code status (32% of the time). In 32 of 58 family conferences (55%), the attending physician did not have a prior relationship with the family. CONCLUSION: Family conferences in the PICU are common both at the bedside and in conference rooms in a subpopulation of the most critically ill children and frequently result in a treatment decision or change in code status.
2013-03
October TW; Watson Anne C; Hinds PS
Pediatric Critical Care Medicine
2013
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Journal Article
<a href="http://doi.org/10.1097/PCC.0b013e318272048d" target="_blank" rel="noreferrer">10.1097/PCC.0b013e318272048d</a>
Close to home
Humans; Professional-Family Relations; Physicians; social support; Leukemia; Community Networks; Grief
2015-03
Rosenberg AR
Jama Pediatrics
2015
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Journal Article
<a href="http://doi.org/10.1001/jamapediatrics.2014.3449" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2014.3449</a>
Communicating about prognosis: ethical responsibilities of pediatricians and parents
adolescent; Child; Female; Humans; Male; Terminal Care; Physician-Patient Relations; Pediatrics; Adult; Parents; Prognosis; Professional-Family Relations; Communication
Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because it underpins informed decision-making, especially near the end of life. In addition, despite understandable clinician concerns about its emotional impact, prognostic disclosure can actually support hope and peace of mind among parents struggling to live with a child's illness. Children, too, may need to understand what is ahead to manage uncertainty and make plans for the ways their remaining life will be lived. In this article, we describe the ethical issues involved in disclosure of prognostic information to parents and children with life-threatening illness and offer practical guidance for these conversations.
2014-02
Mack JW; Joffe S
Pediatrics
2014
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Journal Article
<a href="http://doi.org/10.1542/peds.2013-3608E" target="_blank" rel="noreferrer">10.1542/peds.2013-3608E</a>
Communication between physician, patient, and family in the pediatric intensive care unit
Child; Humans; Intensive Care Units; Grief; Physician-Patient Relations; Attitude of Health Personnel; Education; Professional-Family Relations; Communication; Physician's Role; Patient Satisfaction; Internal-External Control; Defense Mechanisms; Power (Psychology); Kinesics; Pediatric; Adaptation; Psychological; patient care team; Parents/education/psychology; ICU Decision Making; empathy; humanism; Medical/methods; Anxiety/prevention & control/psychology
1993
Todres ID
Critical Care Medicine
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).
Journal Article
<a href="http://doi.org/10.1097/00003246-199309001-00053" target="_blank" rel="noreferrer">10.1097/00003246-199309001-00053</a>
Communication with parents of children with cancer
Child; Female; Male; Grief; Adult; Parent-Child Relations; Follow-Up Studies; Defense Mechanisms; adolescent; Preschool; Adaptation; Psychological; patient care team; infant; Human; Professional-Family Relations; Neoplasms/psychology; Truth Disclosure; Interview; Communication; Leukemia/psychology; Parents/education/psychology
The purpose of this study was to assess the receptiveness of parents to information given about their child's life threatening illness. Three months after the child's diagnosis, an independent interviewer, using a structured questionnaire, interviewed the parents about what and how they had been told, and assessed the stage of parental coping reached at that time. All patients were treated at a regional paediatric oncology centre (RHSCE) and the interviews were conducted preferably in the family home (61%), or in a 'quiet' hospital room (39%). Twenty-five, unselected, consecutive patients with cancer and leukaemia diagnosed and treated at the RHSCE and their families were recruited into the study (1988-1989). One child died during the first three months and one single parent family refused co-operation. Eighteen of the 23 interviews conducted were with both parents, and five were with single parents (all maternal). All 23 sets of parents admitted deep shock and devastation on hearing the initial diagnosis, with 12 sets feeling that they had taken in little or none of the information given. A long interview was conducted a few days after the initial talk with the consultant. The parents of four children (17%) denied that the long interview had occurred whilst 10/19 who remembered it expressed specific lack of understanding of some or all details. All families remembered a large number (10-20) of subsequent talks with a wide range of staff, but 14/23 felt that some of the information was still confusing or conflicting, and 9/14 did not want to ask for further clarification, principally because they did not want to hear more bad news. The majority felt the child understood little of what was going on. At the study interview, most parents were assessed as still being very anxious about their child's illness, whilst two couples, one single mother and one father, were content with what and how they had been told about their child's illness and were in a state of emotional homeostasis. It is concluded that communication of bad news is a two-way process requiring skilled medical staff, but also a receptive audience. The emotional state of the parent determines his or her ability to hear and comprehend the information given. The results imply that repetition and clarification at consultation interviews is required until parents are emotionally able to hear, accept and comprehend complex news. Written material, taped interviews and simple videos can assist in this process.
1994
Eden OB; Black I; MacKinlay GA; Emery AE
Palliative Medicine
1994
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Journal Article
Compassionate silence in the patient-clinician encounter: a contemplative approach
Humans; Physician-Patient Relations; Professional-Family Relations; Communication; Truth Disclosure; empathy
In trying to improve clinician communication skills, we have often heard clinicians at every level admonished to "use silence," as if refraining from talking will improve dialogue. Yet we have also noticed that this "just do it," behavior-focused "use" of silence creates a new, different problem: the clinician looks uncomfortable using silence, and worse, generates a palpable atmosphere of unease that feels burdensome to both the patient and clinician. We think that clinicians are largely responsible for the effect of silence in a clinical encounter, and in this article we discuss what makes silence enriching--enabling a kind of communication between clinician and patient that fosters healing. We describe a typology of silences, and describe a type of compassionate silence, derived from contemplative practice, along with the mental qualities that make this type of silence possible.
2009
Back AL; Bauer-Wu SM; Rushton CH; Halifax J
Journal Of 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/10.1089/jpm.2009.0175" target="_blank" rel="noreferrer">10.1089/jpm.2009.0175</a>
Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors
Female; Humans; Male; Adult; Prospective Studies; Aged; Middle Aged; Family Relations; Professional-Family Relations; Boston; Communication Barriers; Length of Stay; Dissent and Disputes; Interprofessional Relations; Time Factors; Reproducibility of Results; Case-Control Studies; 80 and over; decision making; ICU Decision Making; Intensive Care Units/statistics & numerical data; Intensive Care/statistics & numerical data
OBJECTIVE: To determine types, sources, and predictors of conflicts among patients with prolonged stay in the ICU. DESIGN AND SETTING: We prospectively identified conflicts by interviewing treating physicians and nurses at two stages during the patients' stays. We then classified conflicts by type and source and used a case-control design to identify predictors of team-family conflicts. DESIGN AND SETTING: Seven medical and surgical ICUs at four teaching hospitals in Boston, USA. PATIENTS: All patients admitted to the participating ICUs over an 11-month period whose stay exceeded the 85th percentile length of stay for their respective unit ( n=656). MEASUREMENTS AND RESULTS: Clinicians identified 248 conflicts involving 209 patients; hence, nearly one-third of patients had conflict associated with their care: 142 conflicts (57%) were team-family disputes, 76 (31%) were intrateam disputes, and 30 (12%) occurred among family members. Disagreements over life-sustaining treatment led to 63 team-family conflicts (44%). Other leading sources were poor communication (44%), the unavailability of family decision makers (15%), and the surrogates' (perceived) inability to make decisions (16%). Nurses detected all types of conflict more frequently than physicians, especially intrateam conflicts. The presence of a spouse reduced the probability of team-family conflict generally (odds ratio 0.64) and team-family disputes over life-sustaining treatment specifically (odds ratio 0.49). CONCLUSIONS: Conflict is common in the care of patients with prolonged stays in the ICU. However, efforts to improve the quality of care for critically ill patients that focus on team-family disagreements over life-sustaining treatment miss significant discord in a variety of other areas.
2003
Studdert DM; Mello MM; Burns JP; Puopolo AL; Galper BZ; Truog RD; Brennan T
Intensive Care Medicine
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/10.1007/s00134-003-1853-5" target="_blank" rel="noreferrer">10.1007/s00134-003-1853-5</a>
Cornerstone care for families of children with life-threatening illness.
Child; Humans; Grief; Professional-Family Relations; Longitudinal Studies; Sick Role; Continuity of Patient Care; Hospices; Adaptation; Psychological; patient care team; Family/psychology; social support; Terminal Care/psychology; Home Nursing/psychology; Brain Diseases/psychology/therapy; Neuromuscular Diseases/psychology/therapy; Public Assistance
Forty-five families of children with life-threatening illnesses for up to 10 years were interviewed. The children required many medical disciplines, as well as social, educational and material provisions, and parents described the complex and often distressing job of obtaining that help. They were asked whether they regarded anyone as their co-ordinating cornerstone carer and which qualities of care they most valued. Over three-quarters identified one or more professionals as their cornerstone carer, the most common being paediatricians, domiciliary paediatric nurses and social workers. Nearly a quarter of the families reported not having a cornerstone carer. The ingredients of care especially valued by the parents are described. Families may be better helped and services more rationally used where a cornerstone carer gives support and helps to co-ordinate care in a way that leaves families still feeling in control of their own lives. The issue is raised as to whether patient need or cost/service limitation will be the primary determinant of the way this care is delivered in Britain.
1991
Woolley H; Stein A; Forrest GC; Baum JD
Developmental Medicine And Child Neurology
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/10.1111/j.1469-8749.1991.tb05110.x" target="_blank" rel="noreferrer">10.1111/j.1469-8749.1991.tb05110.x</a>
Creation of a neonatal end-of-life palliative care protocol
Humans; infant; United States; Questionnaires; Professional-Family Relations; Euthanasia; Clinical Protocols; Delphi Technique; Counseling; Internet; Tissue and Organ Procurement; Non-U.S. Gov't; Research Support; Newborn; empathy; Palliative Care/standards; social support; Terminal Care/standards; Culture; Family/ethnology/psychology; Neonatology/standards; Passive/psychology; Ventilator Weaning
OBJECTIVE: To create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, family-, and staff-supported death for newborns who cannot benefit from intensive, life-extending, technological support. STUDY DESIGN: Using Internet e-mail, a Delphi study with sequential questionnaires soliciting participant response, investigator analysis, and follow-up responses from participants was conducted to build a consensus document. Institutional review was granted and respondents gave consent. Recruitment was conducted at medical, ethics, nursing, and multidisciplinary organization meetings. Synthesis of 16 palliative care/end-of-life protocols developed by regional, institutional, and parent organizations was included. Participants from 93 locations in the US and 4 abroad gave feedback to 13 questions derived from clinical experience and the literature. The data underwent four rounds of analysis with 95% retention of the 101 participants over an 18-month period. RESULTS/CONCLUSION: Specific consensus-based recommendations are presented with a description of palliative care; categories of candidates; planning and education needed to begin palliative care services; relationships between community and tertiary centers; components of optimally supported neonatal death; family care, including cultural, spiritual, and practical needs; ventilator withdrawal, including pain and symptom management; recommendations when death does not occur after cessation of life-extending interventions; family follow-up care; and necessary ongoing staff support.
2002
Catlin A; Carter B
Journal Of Perinatology
2002
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Journal Article
<a href="http://doi.org/10.1038/sj.jp.7210687" target="_blank" rel="noreferrer">10.1038/sj.jp.7210687</a>
Crisis intervention strategies when caring for families of children with cancer
Child; Humans; Adult; Professional-Family Relations; Patient Care Planning; Family/psychology; Intervention; Interventions; Parent caregivers; Nursing Assessment/methods; Crisis Intervention/methods; Neoplasms/nursing/psychology
A diagnosis of childhood cancer is an unexpected life event that often precipitates a situational crisis for all family members. Required cancer treatments and other ongoing stressors for both child and family will significantly disrupt the family's equilibrium and well-being. An increasingly important role of the pediatric oncology nurse is to facilitate crisis intervention strategies that help families adjust to the psychosocial stresses associated with childhood cancer, yet many nurses have little or no training in crisis theory and/or crisis intervention strategies. This article reviews family crisis theories and outlines crisis intervention strategies that are appropriate for the family of a child with cancer.
2000
Hendricks-Ferguson VL
Journal Of Pediatric Oncology Nursing
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/10.1177/104345420001700102" target="_blank" rel="noreferrer">10.1177/104345420001700102</a>
Death Talk: Basic Linguistic Rules And Communication In Perinatal And Paediatric End-of-life Discussions.
Communication; Death; Decision Making; Female; Humans; Linguistics; Male; Parents/psychology; Pediatrics; Perinatal Death; Pregnancy; Professional-family Relations; Terminal Care/methods; Terminally Ill
Consumer Health Information; Decision-making; End-of-life Care; Health Communication
OBJECTIVE:
This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory.
METHODS:
Grice's Cooperative Principle and associated maxims, which enable effective communication, are examined in relation to communication deficiencies that parents have identified when making end-of-life decisions for the child. Examples from the literature are provided to clarify the impact of failing to observe the maxims on parents and on clinician/parent communication.
RESULTS:
Linguistic theory applied to the literature on parental concerns about clinician/parent communication shows that the violation of the maxims of quantity, quality, relation, and manner as well as the stance that some clinicians adopt during discussions with parents impact on clinician/parent communication and lead to distrust, anger, sadness, and long-term difficulties coping with the experience of losing one's child.
CONCLUSION:
Parents have identified communication deficiencies in end-of-life discussions. Relating these communication deficiencies to linguistic theory provides insight into communication difficulties but also solutions.
PRACTICE IMPLICATIONS:
Gaining an understanding of basic linguistic theory that underlies human interactions, gaining insight into the communication deficiencies that parents have identified, and modifying some communication behaviours in light of these with the suggestions made in this article may lead to improved clinician/parent communication.
Xafis V; Watkins A; Wilkinson D
Patient Education And Counseling
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Decision making and satisfaction with care in the pediatric intensive care unit: findings from a controlled clinical trial
Child; Female; Humans; Male; Intensive Care Units; Prospective Studies; Professional-Family Relations; Boston; Life Support Care; Conflict (Psychology); Consumer Satisfaction; Counseling; Pediatric; decision making; Nonparametric; Statistics; ICU Decision Making
OBJECTIVE: To facilitate critical decision making and improve satisfaction with care among families of patients in a pediatric intensive care unit. DESIGN: Prospective observational study followed by a nonrandomized controlled trial of a clinical intervention to identify conflicts and facilitate communication between families and the clinical team. SETTING: The pediatric intensive care unit of a Boston teaching hospital. PATIENTS: A total of 127 patients receiving care in the pediatric intensive care unit in 1998-1999 and their families. INTERVENTIONS: Interviews were conducted with surrogates and decisionally capable older children concerning the adequacy of information provided, understanding, communication, and perceived decisional conflicts. Findings were relayed to the clinical team, who then developed tailored follow-up recommendations. MEASUREMENTS AND MAIN RESULTS: A survey administered to surrogates at baseline and day 7 or intensive care unit discharge measured satisfaction with care. Information on patient acuity and hospital stay were extracted from medical records and hospital databases. Wilcoxon rank-sum tests and incidence rate comparisons were used to assess the impact of the intervention on satisfaction and sentinel decision making, respectively. Incidence rates of care plan decision making, including decisions to adopt a comfort-care-only plan and decisions to forego resuscitation, were lower among families who received the intervention. The intervention did not significantly affect satisfaction with care. CONCLUSIONS: Prospectively screening for and intervening to mitigate potential conflict did not increase decision making or parental satisfaction with the care provided in this pediatric intensive care unit.
2004
Mello MM; Burns JP; Truog RD; Studdert DM; Puopolo AL; Brennan T
Pediatric Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.PCC.0000102413.32891.E5" target="_blank" rel="noreferrer">10.1097/01.PCC.0000102413.32891.E5</a>
Digital Clinical Communication for Families and Caregivers of Children or Young People With Short- or Long-Term Conditions: Rapid Review
caregivers; child health; Children; digital clinical communication; Family; Professional-Family Relations; Young Adult
BACKGROUND: The communication relationship between parents of children or young people with health conditions and health professionals is an important part of treatment, but it is unclear how far the use of digital clinical communication tools may affect this relationship. OBJECTIVE: The objective of our study was to describe, assess the feasibility of, and explore the impact of digital clinical communication between families or caregivers and health professionals. METHODS: We searched the literature using 5 electronic databases. We considered all types of study design published in the English language from January 2009 to August 2015. The population of interest included families and caregivers of children and young people aged less than 26 years with any type of health condition. The intervention was any technology permitting 2-way communication. RESULTS: We included 31 articles. The main designs were randomized controlled trials (RCTs; n=10), cross-sectional studies (n=9), pre- and postintervention uncontrolled (pre/post) studies (n=7), and qualitative interview studies (n=2); 6 had mixed-methods designs. In the majority of cases, we considered the quality rating to be fair. Many different types of health condition were represented. A breadth of digital communication tools were included: videoconferencing or videoconsultation (n=14), and Web messaging or emails (n=12). Health care professionals were mainly therapists or cognitive behavioral therapists (n=10), physicians (n=8), and nurses (n=6). Studies were very heterogeneous in terms of outcomes. Interventions were mainly evaluated using satisfaction or acceptance, or outcomes relating to feasibility. Clinical outcomes were rarely used. The RCTs showed that digital clinical communication had no impact in comparison with standard care. Uncontrolled pre/post studies showed good rates of satisfaction or acceptance. Some economic studies suggested that digital clinical communication may save costs. CONCLUSIONS: This rapid review showed an emerging body of literature on the use of digital clinical communication to improve families' and caregivers' involvement in the health management of children or young people. Further research with appropriate study designs and longer-term outcome measures should be encouraged. TRIAL REGISTRATION: PROSPERO CRD42016035467; http://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD 42016 035467(Archived by WebCite at http://www.webcitation.org/6vpgZU1FU).
Armoiry X; Sturt J; Phelps EE; Walker CL; Court R; Taggart F; Sutcliffe P; Griffiths F; Atherton H
Journal Of Medical Internet Research
2018
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<a href="http://doi.org/10.2196/jmir.7999" target="_blank" rel="noreferrer">10.2196/jmir.7999</a>
Dimensions of the role of the social worker in palliative care
Humans; Great Britain; Questionnaires; Professional-Family Relations; Professional Practice; Practice; Palliative Care/organization & administration; Attitudes; Health Knowledge; Social Work/organization & administration; Judgment; Anxiety/rehabilitation
There has been very little research focusing on the role of the social worker in a specialist palliative care service. A qualitative research methodology was used which sought to capture the essence of that role, as perceived by those carrying it out, rather than simply to approach it as a series of tasks. A specialist palliative care social worker was asked to describe her role in selected cases that she had worked with. The interviews were taped and transcribed. The data were then analysed for themes using the techniques of constant comparative analysis. The themes were grouped into six categories and a conceptual framework developed. This was then validated with four other experienced social workers. Integrating categories in the framework were knowing and working with limits and values and valuing. The four other categories, a family focus, being a team member, managing the environment and managing anxiety related to the everyday activities of the social worker. The results are discussed in relation to social work in other specialties and in relation to other professional roles in specialist palliative care. Further research is needed to add the perspective of the social worker's client to understanding of the role.
2000
Sheldon FM
Palliative Medicine
2000
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Journal Article
<a href="http://doi.org/10.1191/026921600701536417" target="_blank" rel="noreferrer">10.1191/026921600701536417</a>
Disease trajectories and ACT/RCPCH categories in paediatric palliative care
Child; Female; Humans; Male; Palliative Care; Family; Attitude to Health; Interviews as Topic; Professional-Family Relations; Disease Progression; caregivers; Qualitative Research; Focus Groups; Wales; Caregivers/psychology; Family/psychology; PEDI Study; Palliative Care/psychology; Attitude to Health; Disease Progression
The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to encompass all Association for Children's Palliative Care (ACT)/Royal College of Paediatrics and Child Health (RCPCH) categories, using a schedule developed from focus groups of professionals. Thirty out of 76 families agreed to participate. Four of these were unsuitable. In nine out of 26 families, their child had died. In eight out of the 26, two individuals were interviewed. Twenty-four mothers, nine fathers, one sibling and two foster-carers were interviewed in total. The interview schedule was developed from data from four themed focus groups, comprising 25 professionals from 14 backgrounds. Thirty-four milestones in five phases were identified: Diagnosis, Loss of normality, Adjusting to new normality, Palliative phase and Death. Many milestones were common to all categories, suggesting that the ACT/RCPCH system encompasses related conditions. Others occurred in only some, suggesting trajectories in the categories are distinct. Significant themes emerging from qualitative data were: becoming expert in their child, concerns about service provision, information needs and relationships with health professionals. By presenting qualitative descriptive data regarding the lived experience of families of children with LLCs, this study provides preliminary evidence that the ACT/RCPCH categories are suitable tools for research and service development.;
2010-12
Wood F; Simpson S; Barnes E; Hain R
Palliative Medicine
2010
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Journal Article
Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff
Attitude of Health Personnel; Attitudes; Female; Health Knowledge; Hospital/psychology; Humans; Intensive Care Units; Male; Medical Staff; Neonatal/statistics & numerical data; Nursing Staff; Practice; Professional-Family Relations; Resuscitation Orders/psychology; Retrospective Studies; Surveys and Questionnaires; United States; Withholding Treatment/statistics & numerical data
OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect clinical care is unknown. DESIGN: Retrospective medical record data review and staff survey responses about neonatal ICU do-not-resuscitate orders. SETTING: Four academic neonatal ICUs. SUBJECTS: Clinical staff members working in each neonatal ICU. INTERVENTIONS: Survey response collection and analysis. MEASUREMENTS AND MAIN RESULTS: Participating neonatal ICUs had 14-48 beds and 120-870 admissions/yr. Frequency range of do-not-resuscitate orders was 3-11 per year. Two-hundred fifty-seven surveys were completed (46% response). Fifty-nine percent of respondents were nurses; 20% were physicians. Over the 5-year period, 44% and 17% had discussed a do-not-resuscitate order one to five times and greater than or equal to 6 times, respectively. Fifty-seven percent and 22% had cared for one to five and greater than or equal to 6 patients with do-not-resuscitate orders, respectively. Neonatologists, trainees, and nurse practitioners were more likely to report receiving training in discussing do-not-resuscitate orders or caring for such patients compared with registered nurses and respiratory therapists (p < 0.001). Forty-one percent of respondents reported caring for an infant in whom interventions had been withheld after a do-not-resuscitate order had been placed without discussing the specific withholding with the family. Twenty-seven percent had taken care of an infant in whom interventions had been withdrawn under the same circumstances. Participants with previous experiences withholding or withdrawing interventions were more likely to agree that these actions are appropriate (p < 0.001). CONCLUSIONS: Most neonatal ICU staff report experience with do-not-resuscitate orders; however, many, particularly nurses and respiratory therapists, report no training in this area. Variable beliefs with respect to withholding and withdrawing care for patients with do-not-resuscitate orders exist among staff. Because neonatal ICU patients with do-not-resuscitate orders may ultimately survive, withholding or withdrawing interventions may have long-lasting effects, which may or may not coincide with familial intentions.
Arzuaga BH; Wraight CL; Cummings CL; Mao W; Miedema D; Brodsky DD
Pediatric Critical Care Medicine
2018
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).
End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines
Female; Humans; Male; Terminal Care; Practice Guidelines as Topic; Professional-Family Relations; adolescent; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; social support; Neoplasms/nursing/psychology/therapy
Participating in end-of-life decisions is life altering for adolescents with incurable cancer, their families, and their healthcare providers. However, no empirically developed and validated guidelines to assist patients, parents, and healthcare providers in making these decisions exist. The purpose of the work reported here was to use three sources (the findings of three studies on decision making in pediatric oncology, published literature, and recommendations from professional associations) to develop guidelines for end-of-life decision making in pediatric oncology. The study designs include a retrospective, descriptive design (Study 1); a prospective, descriptive design (Study 2); and a cross-sectional, descriptive design (Study 3). Settings for the pediatric oncology studies included a pediatric catastrophic illness research hospital located in the Midsouth (Studies 1 and 2); and that setting plus a children's hospital in Australia and one in Hong Kong (Study 3). Study samples included 39 guardians and 21 healthcare providers (Study 1); 52 parents, 10 adolescents, and 22 physicians (Study 2); and 43 parents (Study 3). All participants in the studies responded to six open-ended questions. A semantic content analysis technique was used to analyze all interview data. Four nurses independently coded each interview; interrater reliability per code ranged from 68% to 100% across studies. The most frequently reported influencing factors were "information on the health and disease status of the patient," "all curative options having been attempted," "trusting the healthcare team," and "feeling support from the healthcare provider." The agreement across studies regarding influencing factors provides the basis for the research-based guidelines for end-of-life decision making in pediatric oncology. The guidelines offer assistance with end-of-life decision making in a structured manner that can be formally evaluated and individualized to meet patient and family needs.
2001
Hinds PS; Oakes L; Furman W; Quargnenti A; Olson MS; Foppiano P; Srivastava DK
Cancer Nursing
2001
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Journal Article
<a href="http://doi.org/10.1097/00002820-200104000-00007" target="_blank" rel="noreferrer">10.1097/00002820-200104000-00007</a>
Engaging Fathers in Pediatric Palliative Care Research
Humans; Child; child; Male; pediatrics; Professional-Family Relations; controlled study; male; Adult; child health; perception; palliative therapy; Adaptation, Psychological; Caregiver; *Palliative Care/px [Psychology]; interview; health care personnel; wellbeing; qualitative research; father; *Fathers/px [Psychology]; *Father-Child Relations; Paternal caregivers; research engagement; sample recruitment challenges; *Paternal Behavior/px [Psychology]
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers' desire to gain from study participation either for themselves or others, perception of the study's importance, sense of appreciation for the study's focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers' appraisal of fathers' lack of well-being, bereaved fathers' self-reported poor coping and the inability to locate and contact fathers, particularly after a child's death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing "father-focused" studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers' contact information.
Nicholas, D.; Beaune, L.; Belletrutti, M.; Blumberg, J.; Ing, S.; Rapoport, A.; Barrera, M.
Journal Of Social Work In End-Of-Life and Palliative Care
2020
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/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener">10.1080/15524256.2019.1703877</a>
Evidence for healing interventions with perinatal bereavement
Child; Female; Humans; infant; Male; bereavement; Adult; Parents; Attitude to Death; Professional-Family Relations; Health Services Needs and Demand; social support; Age Factors; Nurse's Role; Child Psychology; Sex Factors; Funeral Rites; Helping Behavior; Spirituality; Evidence-Based Medicine; Nursing Evaluation Research; Self-Help Groups; Adaptation; Psychological; bereavement; Newborn; Parents/education/psychology; social support; Intervention; Interventions; sibling bereavement; Maternal-Child Nursing; Funeral Rites/psychology; Maternal-Child Nursing/organization & administration; Nurse's Role/psychology; Symbolism
The purpose of this article is to explore the concept of perinatal grief and evidence-based healing interventions for it. The loss of a pregnancy or death of an infant causes profound grief, yet society has long minimized or ignored this grief, which is among the most painful of bereavement experiences. Throughout the last century, research on grief and the special needs of bereaved parents has changed the context of professional intervention from protective to supportive. The central focus of bereavement interventions is to assist families in healing by helping them make meaning of their losses. The use of symbols, spirituality, and rituals has been shown to help bring meaning. Research has shown that memories are key to healing, and that gender, age, and relationships bring different grief expressions and experiences. While children's understanding of loss and grief differs with developmental age, they should also be given the opportunity to participate in grief rituals and practices. Professionals who care for bereaved parents have a unique opportunity to offer support by validating their grief, facilitating rituals, providing mementos, and letting the bereaved tell their stories. While no intervention can bring back their beloved children, appropriate intervention can promote healing.
2005-12
Capitulo KL
The American Journal Of Maternal Child Nursing
2005
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Journal Article
<a href="http://doi.org/10.1097/00005721-200511000-00007" target="_blank" rel="noreferrer">10.1097/00005721-200511000-00007</a>
Exhaust All Measures: Ethical Issues In Pediatric End-of-life Care
Parents/px [psychology]; Pediatrics; Social Workers/px [psychology]; Terminal Care/es [ethics]; Terminal Care/px [psychology]; Decision Making; Family; Health Personnel/px [psychology]; Humans; Interviews As Topic; Professional-family Relations; Terminal Care/st [standards]; Withholding Treatment/es [ethics]
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective.
Thieleman KJ; Wallace C; Cimino AN; Rueda HA
Journal of Social Work in End-of-life and Palliative Care
2016
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<a href="https://doi.org/10.1080/15524256.2016.1200518">10.1080/15524256.2016.1200518</a>
Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study
Adult; Bereavement; cancer; child; communication; end of life; Focus Groups; Hospice Care; Humans; palliative care; Parents; Professional-Family Relations; Quality of Life; Time Factors
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
Sedig LK; Spruit JL; Paul TK; Cousino MK; Pituch K; Hutchinson R
American Journal of Hospice and Palliative Care
2020
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<a href="http://doi.org/10.1177/1049909119895496" target="_blank" rel="noreferrer noopener">10.1177/1049909119895496</a>
Exploring perceptions of psychological services in a children's hospice in the United Kingdom
Child; Humans; Young Adult; Palliative Care; Great Britain; hospice care; Adult; Critical Illness; Parents; Professional-Family Relations; disabled children; Child Health Services; Focus Groups; Stress; Palliative Care; Psychological
BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers offer psychosocial support to all family members at all times during the child's and family's journey. However, the effectiveness and appropriateness of current psychosocial provision is unclear, as is the requirement for any additional psychological services. OBJECTIVE: The purpose of this study was to elicit perceptions about current psychological support within the hospice from a group of stakeholders (parents, hospice staff, and external professionals). METHOD: Forty-five parents participated in family focus groups, telephone interviews, individual interviews in their home, or a web-based survey. Ninety-five hospice staff (including nurses, carers, play specialists, therapists, and family support practitioners) and 28 external staff (including physicians, nurses, and commissioning managers) were seen using a mixture of focus group and individual meetings. Focus groups and meetings were held at the hospice building or at an external venue. Interviews were recorded and transcribed verbatim and analyzed using thematic coding. RESULTS: Two main themes addressing perceptions of current psychological provision emerged: "understanding psychological support" and "unmet psychological need." Subthemes linked to support included choice, staff roles and labels, communication, and flexibility, whereas the themes within unmet need had a stronger focus on people and problems. SIGNIFICANCE OF RESULTS: Understanding different user perspectives is an important first step in enhancing current psychological provision; operationalizing the findings will be challenging.
2013-10
Wray Jo; Lindsay B; Crozier K; Andrews L; Leeson J
Palliative & Supportive Care
2013
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/10.1017/S1478951512000284" target="_blank" rel="noreferrer">10.1017/S1478951512000284</a>
Exploring The Spiritual Needs Of Families With Seriously Ill Children
Adolescent; Child; Cultural Characteristics; Family/psychology; Female; Humans; Male; Needs Assessment; Nursing Assessment; Palliative Care; Professional-family Relations; Qualitative Research; Spirituality
Nursing; Spirituality; Pediatrics; Palliative Care; Qualitative
Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for nurses in paediatrics and help nurses develop skills for communicating about spirituality, this research examined the spiritual needs of families based on nurses' experiences with families of seriously ill children. Nurses' experiences revealed that families' anger with God, blame/regret, forgiveness, and ritual and cultural traditions are salient spiritual needs requiring effective nurse communication skills to support families of ill children.
Ferrell B
International Journal Of Palliative Nursing
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
http://dx.doi.org/10.12968/ijpn.2016.22.8.388
Factors influencing parental readiness to let their child with cancer die
Child; Female; Humans; Male; Grief; Adult; Parent-Child Relations; Middle Aged; Attitude to Death; Professional-Family Relations; adolescent; Preschool; infant; Parents/psychology; Parent caregivers; Neoplasms/psychology; Attitude to Death; Grief; Professional-Family Relations; Neoplasms/psychology; Parents/psychology
BACKGROUND: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process. Most struggle to preserve their child. This study identified, from a parental perspective, the main factors that influence the transition from preserving life to letting go. PROCEDURE: A multi-centre, qualitative research, study was undertaken during the end-of-life (EoL) phase, comprising single or repeated interviews with 44 parents of 23 children with incurable cancer. RESULTS: We discovered that uncertainty, fragmentation and anxiety underpin the preserving life perspective. A perspective of letting go could be supported by a variety of factors. These included: Certainty that the child cannot be cured, postponed grief, the perception of suffering, the ability to disentangle needs and the ability to parent meaningfully. Hope, creating a peaceful parent-child relationship, and the attitude of professionals, could support movements in either direction. Of these, certainty, and in most cases postponed grief, were pre-conditions for the transition towards letting go. Strategies such as not challenging the parents' suppression of grief, creating certainty about the child's condition and supporting parents in efforts to redefine their parental role, supported progress towards accepting a letting go perspective. CONCLUSIONS: Parents' internal struggle between a preserving frame of mind and one of letting go is influenced by a combination of factors. However, professionals can influence some of these factors in order to facilitate this transition.
Kars MC; Grypdonck MH; Beishuizen A; Meijer-van den Bergh EM; van Delden JJ
Pediatric Blood & Cancer
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/10.1002/pbc.22532" target="_blank" rel="noreferrer">10.1002/pbc.22532</a>
Family Conferences In The Neonatal Icu: Observation Of Communication Dynamics And Contributions.
Communication; Critical Illness/psychology; Decision Making; Empathy; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Male; Parents/psychology; Professional-family Relations; Qualitative Research; Terminal Care/psychology
Abstract
OBJECTIVES:
Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train clinicians in key communication skills. We devised a pilot study to record and analyze how interdisciplinary neonatal ICU clinicians and parents navigate difficult conversations during neonatal ICU family conferences.
DESIGN:
We prospectively identified and audiotaped a convenience sample of neonatal ICU family conferences about "difficult news." Conversations were analyzed using the Roter interaction analysis system, a quantitative tool for assessing content and quality of patient-provider communication.
SETTING:
An urban academic children's medical center with a 45-bed level IV neonatal ICU.
SUBJECTS:
Neonatal ICU parents and clinicians.
INTERVENTIONS:
None.
MEASUREMENTS AND MAIN RESULTS:
We analyzed 19 family conferences that included 31 family members and 23 clinicians. The child's mother was included in all conferences, and a second parent, usually the father, was present in 13 conferences. All but one conference included multiple medical team members. On average, physicians contributed 65% of all dialogue, regardless of who else was present. Over half (56%) of this dialogue involved giving medical information; under 5% of clinician dialogue involved asking questions of the family, and families rarely (5% of dialogue) asked questions. Conversations were longer with the presence of nonphysician clinicians, but this did not increase the amount of dialogue about psychosocial information or increase parent dialogue.
CONCLUSIONS:
We collected a novel repository of audio-recorded neonatal ICU family meetings that offers insights into discussion content and process. These meetings were heavily focused on biomedical information even when interdisciplinary clinicians were present. Clinicians always talked more than parents, and no one asked many questions. Maximizing the participation of interdisciplinary clinicians in neonatal ICU family meetings may require explicit strategies. Methods to increase family engagement should be targeted.
Boss RD; Donohue PK; Larson SM; Arnold RM; Roter DL
Pediatric Critical Care Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1097/PCC.0000000000000617
Family support in pediatric palliative care: how are families impacted by their children's illnesses?
Child; Cross-Sectional Studies; Female; Humans; Male; Young Adult; Adult; Health Care Surveys; Parent-Child Relations; Professional-Family Relations; Program Evaluation; Multivariate Analysis; Psychometrics; Florida; Regression Analysis; quality of life; adolescent; Preschool; Adaptation; Psychological; Palliative Care/organization & administration; infant; social support; Pediatrics/organization & administration; Telephone
CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service provision and investigate unmet needs. OBJECTIVE: To determine how families are impacted and what factors are associated with greater impact. DESIGN: 2008 cross-sectional telephone survey. SETTING: Florida. PATIENTS: Eighty-five parents whose children had life-limiting illnesses and were enrolled in Florida's publicly funded pediatric palliative care program. MAIN OUTCOME MEASURE: The Impact on Family (IOF) Scale. RESULTS: The majority of parents who responded to the survey are white non-Hispanic (56%), married (54%), had graduated from college (33%), and live in a two-parent household (60%). For 11 of the 15 IOF questions, the results showed that 50% or more of parents agreed with items on the IOF. For example, 71% of parents indicated that their family had to give things up as a result of their children's illnesses. Multivariate analysis showed that having depressive symptoms was associated with greater impact on the family. CONCLUSION: Our findings stress the importance of considering the needs of all family members when providing care to children and understanding and attempting to address family member's needs that may not be covered by pediatric palliative care services. Particular attention should be paid to parents with depressive symptoms, because they can receive supportive care in their children's pediatric palliative care programs.
2010
Knapp CA; Madden VL; Curtis CM; Sloyer P; Shenkman EA
Journal Of 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/10.1089/jpm.2009.0295" target="_blank" rel="noreferrer">10.1089/jpm.2009.0295</a>