Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences
Collaboration; Child; Female; Male; Palliative Care; Denmark; Adolescence; Content Analysis; Qualitative Studies; Home Health Care; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Pediatric Care; Semi-Structured Interview; In Infancy and Childhood; Cancer Patients; Case Studies; Oncologic Care
Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. Aim: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. Design: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. Setting/participants: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. Results: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." Conclusions: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.
Hammer NM; Hansson H; Pedersen LH; Abitz M; Sjøgren P; Schmiegelow K; Bidstrup PE; Larsen HB; Olsen M
Palliative Medicine
2023
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/10.1177/02692163221135350" target="_blank" rel="noreferrer noopener">10.1177/02692163221135350</a>
Anxiety and depression in bereaved parents after losing a child due to life-limiting diagnoses: A Danish nationwide questionnaire survey
adult; article; child; female; human; major clinical study; male; controlled study; education; palliative therapy; anxiety; bereavement; questionnaire; Center for Epidemiological Studies Depression Scale; Denmark; depression; father; mother; single (marital status); young adult
CONTEXT: Losing a child is the most burdensome event parents can experience involving risks of developing anxiety and depression. OBJECTIVES: To investigate anxiety and depression in bereaved parents during their child's life-limiting illness and imminent death and three to five years after the loss to target future interventions. METHODS: A Danish nationwide cross-sectional questionnaire survey. From 2012 to 2014, a register-based study identified causes of deaths of 951 children aged zero to 18 years. Potential palliative diagnoses were classified according to previously used classification. A total of 402 families were included. A modified version of the self-administered questionnaire "To lose a child" was used. Non-response surveys identified reasons for lack of response. RESULTS: In all, 136 mothers and 57 fathers completed a questionnaire, representing parents of 152 children (38%). Sixty-five percent of mothers and 63% of fathers reported moderate-to-severe anxiety during the child's illness. However, three to five years after their loss anxiety had decreased markedly. Thirty-five percent of mothers and 39% of fathers reported moderate-to-severe depression during the child's illness; three to five years after the loss they were suffering equivalently from depression. The Center for Epidemiologic Studies Depression Scale indicated that severe depression was significantly associated with lower education and being unmarried. CONCLUSION: The reporting of anxiety during the child's illness and prolonged depression in bereaved parents three to five years after the loss indicates a potential need for psychological interventions. In the process of implementing specialized pediatric palliative care in Denmark, our findings should be considered for future treatment programs.
Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjogren P
Journal of pain and symptom management.
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/10.1016/j.jpainsymman.2019.06.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.06.025</a>
All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
all cause mortality;childhood mortality;death;home;accident;adolescent;adult;article;automutilation;Epidemiology;Child;chromosome aberration;Epidemiology;congenital malformation;Epidemiology;Denmark;human;infant;infant mortality;International Classification of Diseases;neoplasm;Epidemiology;perinatal death;priority journal
Aim: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014. Methods: We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. Results: The all-cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. Conclusion: All-cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
Lykke C;Ekholm O;Schmiegelow K;Olsen M;Sjogren P
Acta Paediatrica, International Journal of Paediatrics
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/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">10.1111/apa.14331</a>
Parents' perspectives on losing a child due to life-limiting diagnoses: A population-based study
human; child; female; male; diagnosis; Denmark; palliative therapy; distress syndrome; adult; major clinical study; conference abstract; young adult; quality of life; Wales; malignant neoplasm; questionnaire; cause of death; directory
Background: Approximately, 300 children die in Denmark every year. In order to support future implementation of specialized pediatric palliative care the aim of this study was to investigate the needs, quality of life and severity of distress of parents who lost a child with life-limiting diagnoses. Method: A register-based study identified causes of death in children 0-18 years who died in the period 2012-2014 in Denmark. Potential palliative diagnoses were identified through a "Directory" elaborated in Wales1. Children who died the first day of life were excluded. A selfadministered questionnaire was used to assess severity of distress, needs and quality of life of parents to deceased children. We used a modified version of the questionnaire "To lose a child"2. Results: In total, 951 children died. Out of these 409 children were identified with life-limiting diagnoses. Of these 83 children (20%) died the first day of life. Thus, parents of 326 children were invited to participate and received a questionnaire. The response-rate was 41% and it ranged from 48% among parents of children with cancer to 20% among parents of children with circulatory diagnoses. Parents who lost their child >32 days after birth were more likely to participate (43%). Conclusion: We have received a unique material about parents' perspectives on losing a child with life-limiting diagnoses. The relatively low response-rate was expected due to the sensitive nature of the questionnaire; however, future planning of specialized pediatric palliative care in Denmark can be enriched by the parents' perspectives.
Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjogren P
Palliative 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).
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>
Satisfaction with information provided to Danish cancer patients: validation and survey results
adolescent; Cross-Sectional Studies; Female; Humans; Male; Neoplasms; Adult; Interviews as Topic; Questionnaires; Aged; Middle Aged; Patient Satisfaction; Patient Education as Topic; Denmark; 80 and over
OBJECTIVES: To validate five items (CPWQ-inf) regarding satisfaction with information provided to cancer patients from health care staff, assess the prevalence of dissatisfaction with this information, and identify factors predicting dissatisfaction. METHODS: The questionnaire was validated by patient-observer agreement and cognitive interviews. The prevalence of dissatisfaction was assessed in a cross-sectional sample of all cancer patients in contact with hospitals during the past year in three Danish counties. RESULTS: The validation showed that the CPWQ performed well. Between 3 and 23% of the 1490 participating patients were dissatisfied with each of the measured aspects of information. The highest level of dissatisfaction was reported regarding the guidance, support and help provided when the diagnosis was given. Younger patients were consistently more dissatisfied than older patients. CONCLUSIONS: The brief CPWQ performs well for survey purposes. The survey depicts the heterogeneous patient population encountered by hospital staff and showed that younger patients probably had higher expectations or a higher need for information and that those with more severe diagnoses/prognoses require extra care in providing information. PRACTICAL IMPLICATIONS: Four brief questions can efficiently assess information needs. With increasing demands for information, a wide range of innovative initiatives is needed.
2013-11
Ross L; Petersen MA; Johnsen AT; Lundstrøm LH; Groenvold M
Patient Education And Counseling
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/10.1016/j.pec.2013.05.018" target="_blank" rel="noreferrer">10.1016/j.pec.2013.05.018</a>
Paediatric palliative care in Denmark should be strengthened
standards; adolescent; Child; complication; Denmark; Family; Human; infant; neoplasm/ep [Epidemiology]; neoplasm/th [Therapy]; Palliative therapy; Patient Care; preschool child
Paediatric palliative care is the total care for the child's body, mind and spirit, and involves support to the family. It begins when a life-threatening disease is diagnosed and depends on an interdisciplinary team approach. In 2013, 295 children under the age of 16 years died in Denmark. Of these, 195 were less than one year old. Most children and their families may prefer death at home if possible. Early planning allows for better integration of home-care services and ensures that death occurs at the place that is best for the child and family.
2014
Jespersen BA; Clausen N; Sjogren P
Ugeskrift For Laeger
2014
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Using drugs to end life without an explicit request of the patient
Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; Netherlands; Intention; Informed Consent; Ethics; Suicide; Medical; Belgium; Denmark; adolescent; 80 and over; decision making; Switzerland; Assisted/ethics/legislation & jurisprudence/psychology; Euthanasia/ethics/legislation & jurisprudence/psychology; Mental Competency/legislation & jurisprudence; Patient Participation/legislation & jurisprudence/psychology; Physician's Practice Patterns/ethics; Terminal Care/ethics/legislation & jurisprudence/psychology
A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001, questionnaires were mailed to physicians that addressed the decision making that preceded their patient's death. Cases of ending life without an explicit request of the patient were compared with similar cases from 1995 and with cases from Belgium, Denmark, and Switzerland. In the Netherlands in 2001, patients receiving life-ending drugs without their explicit request were most often 80+ years old and had cancer. Most of them were incompetent patients nearing death. Characteristics of this practice in 1995 were quite comparable, as were characteristics of this practice in Belgium, Denmark, and Switzerland. The use of drugs with the intention to hasten death without an explicit request of the patient is part of medical end-of-life practice in the studied countries, regardless of their legal framework, and it occurs in similar fashion.
2007
Rietjens JA; Bilsen J; Fischer S; van der Heide A; van der Maas PJ; Miccinessi G; Norup M; Onwuteaka-Philipsen BD; Vrakking AM; van der Wal G
Death Studies
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1080/07481180601152443" target="_blank" rel="noreferrer">10.1080/07481180601152443</a>
Association of mortality with the death of a sibling in childhood
Animals; bereavement; causes of death; Children; Chordata; Cohort Studies; Death; death rate; Denmark; Developed Countries; eukaryotes; Europe; European Union Countries; Hominidae; Homo; mammals; man; mortality; Nordic Countries; Northern Europe; OECD Countries; primates; Risk Factors; Scandinavia; Siblings; Sweden; vertebrates
Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective: To examine the association between sibling death in childhood and subsequent mortality risk. Design, Setting, and Participants: This population-based cohort study of 5 005 029 participants evaluated linked national registers in Denmark (January 1, 1973, through December 31, 2009) and Sweden (January 1, 1973, through December 31, 2008). A total of 2 060 354 Danish and 2 944 675 Swedish children who survived the first 6 months of their life were included. We excluded 14 children who died of the same external cause as their siblings within 30 days. Data were analyzed from November 2, 2015, through October 14, 2016. Exposures: Participants were classified as exposed if a sibling died in childhood (age <18 years). Main Outcomes and Measures: Poisson regression was used to estimate mortality rate ratio (MRR) with the exposure as a time-varying variable. Results: Among the 55 818 participants who experienced sibling death in childhood (51.5% male and 48.5% female; median age at loss, 7.0 [interquartile range, 3.3-12.1] years), all-cause mortality risk was increased by 71% (MRR, 1.71; 95% CI, 1.57-1.87) during the follow-up of 37 years. The excess mortality risk was observed for groups with specific causes of death, and the higher MRRs were found when the sibling pairs died of the same cause (death due to disease [MRR, 2.16; 95% CI, 1.87-2.49]; death due to external cause [MRR, 1.91; 95% CI, 1.54-2.37]). The increased mortality risk after sibling death was seen across the follow-up period, regardless of the age at bereavement and the type of death among bereaved siblings, but the magnitude of association was stronger during the first year after sibling death (MRR, 2.51; 95% CI, 1.79-3.54). Higher MRRs were found among sibling pairs with the same sex (MRR, 1.92; 95% CI, 1.70-2.18) and close age (MRR, 1.94; 95% CI, 1.58-2.37). Conclusions and Relevance: Bereavement in childhood because of the death of a sibling was associated with an increased risk for mortality in the short and long term. Health care professionals should be aware of individuals' vulnerability due to sibling death, especially for sibling pairs of close age or the same sex. Social and health care support may help to minimize the potential adverse effects on the bereaved sibling.
Yu YongFu; Liew ZeYan; Cnattingius S; Olsen J; Vestergaard M; Fu Bo; Parner ET; Qin GuoYou; Zhao NaiQing; Li Jiong
Jama Pediatrics
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/10.1001/jamapediatrics.2017.0197" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2017.0197</a>