Treatment Decision Making and Regret in Parents of Children With Incurable Cancer
Child; child; Decision Making; article; controlled study; female; human; male; palliative therapy; education; Only Child; risk factor; prospective study; multicenter study; decision making; propensity score; incurable cancer; risk perception
Ye ZJ; Cheng MH; Zhang XY; Tang Y; Liang J; Sun Z; Liang MZ; Yu YL
Cancer Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000783</a>
Patterns of Healthcare Services Among Children With Advanced Cancer in Concurrent Hospice Care
BACKGROUND: Children with advanced cancer have access to comprehensive cancer care and hospice care if they enroll in concurrent hospice care. However, little is known about the patterns of nonhospice healthcare services used by these children. OBJECTIVE(S): The aim of this study was to examine the patterns of nonhospice healthcare services among children with cancer in concurrent hospice care. METHOD(S): This study was a retrospective cohort analysis of 2011-2013 Medicaid claims data from 862 pediatric cancer patients. Data were analyzed using descriptive statistics and latent class analysis (LCA). RESULT(S): Children used 120 388 healthcare services, including inpatient and outpatient hospital services, laboratories and x-rays, durable medical equipment, medications, and others. These services clustered into 2 classes with moderate-intensity (57.49%) and high-intensity (42.50%) healthcare service use. Children in the high-intensity cluster were more likely to reside in the South with comorbidities, mental/behavioral health conditions, and technology dependence and were less likely to have solid tumors, compared with the moderate-intensity group. CONCLUSION(S): Nonhospice healthcare services clustered together in 2 distinct classes, providing critical insight into the complexity of the healthcare use among children with cancer in concurrent hospice care. IMPLICATIONS FOR PRACTICE: Understanding that pediatric patients in concurrent care may have different healthcare service patterns may assist oncology nurses caring for children with advanced cancer. These findings also have policy implications. Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.
Svynarenko R; Lindley LC; Mooney-Doyle K; Mendola A; Naumann WC; Mack JW
Cancer Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/NCC.0000000000001067" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000001067</a>
Using Patient-Reported Outcomes to Measure Symptoms in Children With Advanced Cancer
cancer; oncology; pediatric cancer; symptoms; patient-reported outcomes
BACKGROUND: Children with advanced cancer experience symptoms despite access to quality care. Symptom research has previously relied upon retrospective designs and parent proxy rather than prospective measurement with self-report. OBJECTIVE: This study evaluated the feasibility of electronic data collection in children with advanced cancer using self-report of symptom frequency, severity, and distress. METHODS: A multisite prospective cohort design was used for this study. Children who were 7 to 18 years of age and English-speaking and had a diagnosis of advanced cancer were included. Symptom frequency, severity, and level of distress were measured every 2 weeks. RESULTS: Forty-six children completed 563 of 622 (91%) administered electronic symptom assessments. Pain, fatigue, nausea, and sleeping difficulties were the most reported symptoms across all assessments and during the last 12 weeks of life. Symptoms with the highest composite scores included pain, fatigue, nausea, and sleeping difficulties. During the last 12 weeks of life, pain, fatigue, diarrhea, and sleeping difficulties had the highest composite scores. When the domains of frequency, severity, and distress were compared between groups, children reported significantly higher frequency of pain and eating difficulty during the last 12 weeks of life. CONCLUSIONS: Electronic data collection is a feasible way to evaluate the constellation of symptoms. Children with advanced cancer continue to experience physical and psychological symptoms, especially during the last 12 weeks of life despite quality care. IMPLICATIONS FOR PRACTICE: Assessment of symptom domains, including frequency, severity, and distress when symptoms are present may allow clinicians to better understand and manage symptoms of most concern to the patient.
Montgomery K E; Raybin J L; Ward J; Balian C; Gilger E; Murray P; Li Z
Cancer Nursing
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/10.1097/ncc.0000000000000721" target="_blank" rel="noreferrer noopener">10.1097/ncc.0000000000000721</a>
Changes in Siblings Over Time After the Death of a Brother or Sister From Cancer
Adolescence; Adult; Bereavement; Child; Content Analysis; Fathers -- Psychosocial Factors; Female; Human; Male; McNemar's Test; Middle Age; Mothers -- Psychosocial Factors; Multimethod Studies; Neoplasms -- Mortality; Prospective Studies; Semi-Structured Interview; Siblings -- Psychosocial Factors
Background: Limited research has examined the impact of a child's death from cancer on siblings. Even less is known about how these siblings change over time. Objective: This study compared changes in siblings 1 (T1) and 2 (T2) years after the death of a brother or sister from cancer based on bereaved parent and sibling interviews. Methods: Participants across 3 institutions represented 27 families and included bereaved mothers (n = 21), fathers (n = 15), and siblings (n = 26) ranging from 8 to 17 years old. Participants completed semistructured interviews. Content analysis identified emerging themes and included frequency counts of participant responses. McNemar tests examined differences in the frequency of responses between T1 and T2 data. Results: Participants reported similar types of changes in bereaved siblings at both time points, including changes in sibling relationships, life perspectives, their personal lives, and school performance. A new theme of "openness" emerged at T2. Frequencies of responses differed according to mother, father, or sibling informant. Overall, participants less frequently reported changes at T2 versus T1. Compared with findings in the first year, participants reported greater sibling maturity at follow-up. Conclusion: Overall changes in bereaved siblings continued over 2 years with less frequency over time, with the exception of increases in maturity and openness. Implications for Practice: Providers can educate parents regarding the impact of death of a brother or sister over time. Nurses can foster open communication in surviving grieving siblings and parents as potential protective factors in families going through their grief.
Akard T F; Skeens M A; Fortney C A; Dietrich M S; Gilmer M J; Vannatta K; Barrera M; Davies B; Wray S; Gerhardt C A
Cancer Nursing
2019
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/10.1097/NCC.0000000000000573" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000573</a>
Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers
BACKGROUND: Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers. OBJECTIVE: The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers. METHODS: Ten parents participated in semistructured interviews after receiving the COMPLETE intervention. The COMPLETE intervention included 3 sessions delivered shortly after diagnosis and at the next 2 cancer treatment evaluations. Sessions of COMPLETE focused on early PC/EOL care discussions at diagnosis and after tumor response evaluations with their child's providers. RESULTS: Results included 2 theme categories: (1) COMPLETE nurtures realistic hope and meaningful dialogue by parents connecting with healthcare providers as a dyad, and (2) benefits of COMPLETE helped parents to make informed decisions. In addition, there were offered suggestions to improve COMPLETE. CONCLUSION: The COMPLETE intervention provided a unique mechanism to foster early discussions about PC/EOL options between parents and an interprofessional team during the first 6 months of the child's cancer treatment. Future study is needed using a randomized clinical control-group design to evaluate COMPLETE with a large sample of parents. IMPLICATIONS FOR PRACTICE: Findings provide promising evidence of parents' preference and receptivity to receive early information about PC/EOL care options for a child with a brain tumor with a poor prognosis. The COMPLETE intervention provided a mechanism to help encourage parental consideration of realistic hoped-for goals for their child's condition and care.
Hendricks-Ferguson VL; Haase JE
Cancer Nursing
2018
<a href="http://doi.org/%2010.1097/ncc.0000000000000589" target="_blank" rel="noreferrer noopener">10.1097/ncc.0000000000000589</a>
Spirituality among parents of children with cancer at AUBMC
spiritual care; semi structured interview; caregiver; cancer center; childhood cancer; health care personnel; powerlessness; genetic transcription; conference abstract; human; child; female; male; clinical article; palliative therapy; religion; fear; Lebanon; social needs
Doumit MA; Majdalani M; Saab R; Rahi A
Cancer Nursing
2016
<a href="http://doi.org/10.1097/NCC.0000000000000441" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000441</a>
A review of supportive care interventions to manage distress in young children with cancer and parents
psychosocial; review; Oncology Nursing
BACKGROUND: There is a positive relationship between parent and young child distress during cancer treatment. Dimensions of parent/child distress are multifaceted and associated with family function and quality of life outcomes. A critical examination of intervention research is needed to identify how dimensions of parent/child distress and related outcomes are being addressed. OBJECTIVE: The aims of this study were to summarize and describe supportive care intervention research for young children with cancer and parents and to discuss implications for family-based intervention research. METHODS: This systematic review examined supportive care intervention studies with randomized and nonrandomized designs for young children with cancer (aged 3-8 years) and/or their parents published between 1991 and 2011. Twenty-two studies that met specific inclusion criteria were reviewed to determine intervention type, intervention components, targeted outcomes and findings, and whether interventions addressed child, parent, or parent/child needs. RESULTS: Most interventions focused primarily on procedural support, followed by parent education/counseling. Most studies targeted the child or the parent alone; very few targeted parent/child dyads. Outcomes focused primarily on child distress, anxiety, and pain. Quality of life and coping were rarely measured, and no studies examined family function. This body of research is emerging, with most interventions in the developmental pilot phase and few efficacy trials. CONCLUSIONS: Findings confirm underrepresentation of young children in supportive care intervention research and the need for more complex, family-based interventions to advance young child intervention research beyond acute, procedural distress. IMPLICATIONS FOR PRACTICE: The authors discuss the implications of review findings for clinical practice.
2014-08
Robb SL; Hanson-Abromeit D
Cancer Nursing
2014
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/NCC.0000000000000095" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000095</a>
Effectiveness of Music Intervention in Ameliorating Cancer Patients' Anxiety, Depression, Pain, and Fatigue: A Meta-analysis
Treatment Outcome; oncology; Music therapy
BACKGROUND:: This is the first study to use meta-analysis as a scientific technique to provide an integrated analysis of the effectiveness of music intervention in cancer patients. OBJECTIVES:: The purpose of this study was, using the meta-analysis method, to present a summary of existing research and explore the effectiveness of music intervention in ameliorating anxiety, depression, pain, and fatigue in cancer patients. METHODS:: The present study collected quantitative study designs sought of music intervention for cancer patients published from 2002 to 2012. These studies were then cross-referenced using Medical Subject Headings for topics on music intervention and cancer patients. Outcome indicators were anxiety, depression, pain, and fatigue. The quality of the studies was evaluated using Cochrane Collaboration Guidelines. The effect size on outcome indicators used the formula devised by Hedges and Olkin (1985). RESULTS:: Results showed that music interventions were significantly effective in ameliorating anxiety (g = -0.553), depression (g = -0.510), pain (g = -0.656), and fatigue (g = -0.422) in cancer patients. Subgroup analyses revealed that age and who selected the music were major factors influencing the effect size on anxiety reduction. CONCLUSIONS:: Music interventions significantly ameliorate anxiety, depression, pain, and fatigue in cancer patients, especially adults. Music interventions were more effective in adults than in children or adolescents and more effective when patients, rather than researchers, chose the music. IMPLICATIONS FOR PRACTICE:: Our findings provide important information for future music-intervention planners to improve the design and processes that will benefit patients in such programs.
2014-03
Tsai Hsiu F; Chen YR; Chung MH; Liao Yuan M; Chi MJ; Chang CC; Chou KR
Cancer Nursing
2014
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/NCC.0000000000000116" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000116</a>
Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences
Child; Female; Male; Income; adolescent; Human; oncology; Diseases; Sample Size; Population; Article; Child; Caregiver; advertizing; cancer research; Caregiver; childhood cancer; Human; Internet; neoplasm; parent; social media; social network; cancer palliative therapy; cancer patient; cancer recurrence; click; computer; Facebook; health survey; information processing; interpersonal communication; legal guardian; major clinical study; mobile phone; nurse; Only Child; Palliative therapy; parent; parental attitude; participant recruitment; Patient; priority journal; school child; social media; Video Recording; Video Recording
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. OBJECTIVE:: This study examined the feasibility of using Facebook advertisements to recruit parent caregivers of children and teenagers with cancer. We also explored the feasibility of Web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. METHODS:: Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. RESULTS:: The advertising campaign generated 3 897 981 impressions, which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for Web-based and electronic research methods. Participant survey responses are reported. CONCLUSION:: Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families. IMPLICATIONS FOR PRACTICE:: Web-based methods (eg, Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families.
2014-06
Akard TF; Wray S; Gilmer Mary Jo
Cancer Nursing
2014
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/NCC.0000000000000146" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000146</a>
Bereaved Jewish mothers of children who died of cancer: the relationship between the mother and the deceased child and the mother's perceived functioning
adolescent; Child; Cross-Sectional Studies; Female; Humans; Male; Death; mothers; Neoplasms; Adult; Mother-Child Relations; Questionnaires; Middle Aged; Sampling Studies; Adaptation; Psychological; Grief; Jews
BACKGROUND: Coping with grief after a child's death is a complex and dynamic process. The Two-Track Model of Bereavement, which served as the theoretical framework for this study, examines biopsychosocial reactions to bereavement (track I) and attachment to the deceased (track II). OBJECTIVES: The objectives of this study were to identify differences in mothers' perceived functioning between bereaved mothers and mothers of children with cancer, describe mother-child relationships and relationship development over the course of illness and death, and describe the association between the 2 tracks. METHODS: A quantitative cross-sectional study of 50 Jewish bereaved mothers and a matched comparison group of 50 Jewish mothers to children with cancer aged 6 to 18 years completed structured questionnaires. RESULTS: No difference was found between the groups in overall maternal functioning. Bereaved mothers keep a relationship with their deceased child. Among mothers of currently ill children, there was a difference in the mean score of the mother-child relationship with the child before and after the cancer diagnosis. A negative correlation was found between the bereaved mother's relationship with the deceased child and her functioning; this was not found in the comparison group. CONCLUSIONS: Mother-child relationships become closer following the cancer diagnosis and change further following the child's death. The relationship with the deceased child is an integral part of the bereaved mother's life and influences her functioning. IMPLICATIONS FOR PRACTICE: Training programs for nurses need to be developed to help nurses be sensitive to maternal loss and grief and to incorporate the bereaved mother's relationship with her deceased child into interventions.
2013-10
Peles BA; Malkinson R; Krulik T
Cancer Nursing
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/10.1097/NCC.0b013e31827eecab" target="_blank" rel="noreferrer">10.1097/NCC.0b013e31827eecab</a>
Redefining Parenthood: Surviving the Death of a Child
BACKGROUND:: Although dying children are often aware of their impending death, parents are reluctant to communicate with their dying child about death. OBJECTIVE:: The objective of this study was to examine how parents of children in the advanced stage of a life-threatening disease trajectory communicated about death. METHODS:: Using grounded theory methods, data were collected via interviews with 18 parents of children who had died of an advanced life-threatening disease. RESULTS:: Ways in which parents communicated with their dying child were impacted by the degree of threat to the parental role. From the onset of their child's life-threatening illness, the sense of parental self was threatened, resulting in "Parental Vulnerability." To endure parental vulnerability, parents confronted a process of "Redefining Parenthood." Before the child's death, parents experienced (1) Protecting From Fears, (2) Protecting Normalcy, (3) Protecting Faith, (4) Experiencing Protection From Their Child, and (5) Bookmarking Memories. After the child's death, parents experienced (1) Telling the Story, (2) Making Meaning, (3) Protecting the Child's Memory, (4) Defining a New Normal, and (5) Learning to Live With Regret. CONCLUSIONS:: Results provide new information about the experiences of parents of dying children as they communicated with their child during the dying process and as they found ways to go on with life after their child's death. IMPLICATIONS FOR PRACTICE:: Findings can be used by healthcare professionals to help support families of dying children. The field of pediatric oncology nursing would benefit from exploration of the dying child's perspective.
2013-09
Nuss SL
Cancer Nursing
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/10.1097/NCC.0b013e3182a0da1f" target="_blank" rel="noreferrer">10.1097/NCC.0b013e3182a0da1f</a>
Grief Related to the Experience of Being the Sibling of a Child With Cancer
sibling bereavement
BACKGROUND:: Few studies have described the well siblings' experience of grief when a brother or sister is treated for cancer. Knowing how sibling grief is expressed will guide clinician and family efforts to provide appropriate support. OBJECTIVE:: The aim of this study was to describe siblings' reports of grief related to the experience of having a brother or sister with cancer. METHODS:: A qualitative descriptive method was chosen based on open-ended interviews with 29 siblings aged 8 to 24 years. Qualitative content analysis was applied to the interview data. RESULTS:: Four categories of grief were identified: anticipatory grief after receiving information about the cancer diagnosis, grief and concern about the ill sibling's loss of a normal life, grief about being unimportant and forgotten in the family, and grief that continues after the sibling's death as a kind of bond. CONCLUSION:: Despite variations in age and gender among participating siblings, their thoughts were similar. Grief was experienced differently from the time of the diagnosis onward, in the form of concerns related to the illness and situation of the ill sibling. Grief related to sibling bonds remained after death. IMPLICATION FOR PRACTICE:: This study recommends offering siblings realistic information about their ill sibling and support for them in their situation from diagnosis and continuously thereafter. To meet the needs of well siblings, it is necessary to ask the siblings about their thoughts and discuss with them their emotions and worries.
2013-10
Jenholt NM; Enskär K; Hellström Anna-Lena
Cancer Nursing
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/10.1097/NCC.0b013e3182a3e585" target="_blank" rel="noreferrer">10.1097/NCC.0b013e3182a3e585</a>
A different way of being: adolescents' experiences with cancer
Adaptation; PedPal Lit; Adolescent Medicine; Adolescent Psychology Attitude to Health Child Child; life as a prisoner; life as a zombie; life as an alien; life as an invalid; Preschool Female Humans Life Change Events Male Neoplasms/nursing/; Psychological Adolescent
2005
Woodgate RL
Cancer 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).
Journal Article
<a href="http://doi.org/10.1097/00002820-200501000-00002" target="_blank" rel="noreferrer">10.1097/00002820-200501000-00002</a>
Measuring physical symptoms in children and adolescents with cancer
adolescent; PedPal Lit; Adolescent Medicine Child Databases; Bibliographic Humans Neoplasms/nursing/; physiopathology/psychology Oncologic Nursing Pediatric Nursing Reproducibility of Results
2005
Linder LA
Cancer 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).
Journal Article
<a href="http://doi.org/10.1097/00002820-200501000-00003" target="_blank" rel="noreferrer">10.1097/00002820-200501000-00003</a>
Mother's home healthcare: emotion work when a child has cancer
Adaptation; PedPal Lit; Non-U.S. Gov't Self Concept Social Isolation Trust Uncertainty Workload/psychology; PreschoolCost of Illness Emotions Fear Female Focus Groups Home Nursing/psychology Humans Infant Marriage/psychology Middle Aged Mothers/psychology Neoplasms/nursing Nursing Methodology Research Qualitative Research Questionnaires Research Support; Psychological Adolescent AdultAttitude to Health Canada Child Child
Home healthcare work, involving physical labor, nursing care, medical monitoring, administrative, planning and accounting, advocacy and emotion work, is unpaid and largely invisible. This article, based on focus group interviews with mothers whose children have had cancer, describes one part of their home healthcare labor, their emotion work. Specifically, it examines how mothers: manage the moral imperatives of mothering; think about and try to manage the strong feelings, particularly of fear and uncertainty that they often have when their children are ill with cancer; work to understand and maintain their marital relationships; the strategies that seemed to help; and finally, the self-transformation that many mothers experience. The article concludes with a discussion of the substantive, theoretical, research, and policy implications of emotion work in the provision of home healthcare work.
2006
Clarke JN
Cancer Nursing
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00002820-200601000-00010" target="_blank" rel="noreferrer">10.1097/00002820-200601000-00010</a>
Families of children with cancer: The impact on anxiety experienced by fathers
Family; Fathers; Anxiety
2002
Mu P-F; Ma F-C; Hwang B; Chao Y-M
Cancer 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/10.1097/00002820-200202000-00012" target="_blank" rel="noreferrer">10.1097/00002820-200202000-00012</a>
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
Experiences of mothers in five countries whose child died of cancer
Child; Female; Humans; Male; United States; Palliative Care; Adult; Canada; Mother-Child Relations; Middle Aged; Attitude to Death; Cross-Cultural Comparison; adolescent; Preschool; bereavement; infant; Greece; Norway; Oncologic Nursing; Hong Kong; Neoplasms/nursing/psychology/therapy
Although increasing attention is being focused on the emotional aspects of caring for dying children and their families, few research reports concentrate on the experiences of mothers, particularly in different countries. This article describes the findings of an exploratory, descriptive study that investigated the experiences of mothers from five different countries who each had a child die from cancer in the past 6 months. Principal investigators, members of the International Work Group on Death, Dying, and Bereavement, conducted semistructured interviews with 21 mothers in their own countries. No culturally related differences were noted among mothers, and the mothers' recall of their experiences are more similar than different. All mothers, irrespective of country, described similar reactions to the diagnosis, management of the end-stage illness, and challenge of coping with bereavement. Lessons learned from this project provide suggestions for future research across countries.
1998
Davies B; Deveau E; deVeber B; Howell D; Martinson I; Papadatou D; Pask E; Stevens M
Cancer Nursing
1998
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00002820-199810000-00001" target="_blank" rel="noreferrer">10.1097/00002820-199810000-00001</a>
Facilitating day-to-day decision making in palliative care
Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; Nurse-Patient Relations; 80 and over; Non-U.S. Gov't; Research Support; decision making; Palliative Care/psychology; Oncologic Nursing; Nursing Process
As part of a larger grounded theory study investigating the process by which palliative care patients make everyday choices, a secondary analysis of data was conducted to investigate the ways nurses support or restrict patients' participation in their care. Constant comparative methods were used to generate a detailed, contextually grounded description of nurses' strategies that influenced patients' participation in making everyday choices about their personal and nursing care. Data consisted of field notes derived from observations of patients and their caregivers in two hospital-based palliative care units and from 23 transcripts of interviews with participating nurses and patients. Nurses' efforts to support patients' participation in decision making were described as a four-phase process: getting to know the patient, enhancing opportunities for choice, being open to patient choice, and respecting choice. Factors influencing nurses' use of supportive behaviors and behaviors that restricted patients' participation in everyday choices were identified. Given the importance patients attributed to making choices, these findings provide a foundation for the design of nursing interventions that hold great potential for directly influencing quality of life.
2000
Bottorff JL; Steele R; Davies B; Porterfield P; Garossino C; Shaw M
Cancer 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/10.1097/00002820-200004000-00011" target="_blank" rel="noreferrer">10.1097/00002820-200004000-00011</a>
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
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/10.1097/00002820-200104000-00007" target="_blank" rel="noreferrer">10.1097/00002820-200104000-00007</a>
Caring for dying children: A comparative study of nurses' experiences in Greece and Hong Kong
Nurses
2001
Papadatou D; Martinson IM; Chung PM
Cancer Nursing
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00002820-200110000-00013" target="_blank" rel="noreferrer">10.1097/00002820-200110000-00013</a>
Changes in siblings after the death of a child from cancer.
adolescent; Child; Cross-Sectional Studies; Female; Humans; Male; bereavement; Death; Neoplasms; Adult; Parents; Middle Aged; Siblings; Qualitative Research; Time Factors; Nursing Methodology Research; Adaptation; Psychological; IM; sibling bereavement; N
IMPLICATIONS FOR PRACTICE: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to loss.
Foster TL; Gilmer MJ; Vannatta K; Barrera M; Davies B; Dietrich MS; Fairclough DL; Gerhardt CA
Cancer Nursing
2012
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/NCC.0b013e3182365646" target="_blank" rel="noreferrer">10.1097/NCC.0b013e3182365646</a>
Surprised by Benefit in Pediatric Palliative Care Research
Palliative Care
Weaver MS; Bell CJ; Diver JL; Jacobs S; Lyon ME; Mooney-Doyle K; Newman AR; Slutsman J; Hinds PS
Cancer Nursing
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).
<a href="http://doi.org/10.1097/NCC.0000000000000576" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000576</a>
The Global Champion for End-of-Life Care: Who Are You? What Is Keeping You?
Global Health; Oncology Nursing; Humans; Terminal Care/ Organization & Administration
Hinds PS; Lafond DA
Cancer 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/10.1097/ncc.0000000000000328" target="_blank" rel="noreferrer">10.1097/ncc.0000000000000328</a>
Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions
BACKGROUND: Adolescents living with incurable cancer require ongoing support to process grief, emotions, and information as disease progresses including treatment options (phase 1 clinical trials and/or hospice/palliative care). Little is known about how adolescents become ready for such discussions. OBJECTIVE: The purpose of this study was to explore the process of adolescent readiness for end-of-life preparedness discussions, generating a theoretical understanding for guiding clinical conversations when curative options are limited. METHODS: We explored 2 in-depth cases across time using case-study methodology. An a priori conceptual model based on current end-of-life research guided data collection and analysis. Multiple sources including in-depth adolescent interviews generated data collection on model constructs. Analysis followed a logical sequence establishing a chain of evidence linking raw data to study conclusions. Synthesis and data triangulation across cases and time led to theoretical generalizations. Initially, we proposed a linear process of readiness with 3 domains: a cognitive domain (awareness), an emotional domain (acceptance), and a behavioral domain (willingness), which preceded preparedness. RESULTS: Findings led to conceptual model refinement showing readiness is a dynamic internal process that interacts with preparedness. Current awareness context facilitates the type of preparedness discussions (cognitive or emotional). Furthermore, social constraint inhibits discussions. CONCLUSIONS: Data support theoretical understanding of the dynamism of readiness. Future research that validates adolescent conceptualization will ensure age-appropriate readiness representation. IMPLICATIONS FOR PRACTICE: Understanding the dynamic process of readiness for engaging in end-of-life preparedness provides clinician insight for guiding discussions that facilitate shared decision making and promote quality of life for adolescents and their families.
Bell CJ; Zimet GD; Hinds PS; Broome ME; McDaniel AM; Mays RM; Champion VL
Cancer Nursing
2017
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/10.1097/ncc.0000000000000465" target="_blank" rel="noreferrer">10.1097/ncc.0000000000000465</a>