Losing a child due to a life-limiting diagnosis-parental well-being and quality of life: nationwide survey
terminal care; quality of life; paediatrics; bereavement
OBJECTIVE: Losing a child is burdensome with potential long-term impact on the parents' well-being and quality of life. The aim was to investigate parental well-being and quality of life 3-5 years after losing a child due to life-limiting diagnoses and to identify associated factors in order to target future interventions. METHODS: All parents, who lost a child (<18 years) due to life-limiting diagnoses in the period 2012-2014 in Denmark, were invited to complete a self-administered questionnaire. A seven-point Visual Digital Scale (VDS) was used to assess issues of well-being and quality of life including physical health, anxiety, depression and sleep quality which were combined into a cumulative symptom index. Associations were assessed by means of ordinal logistic regression models. RESULTS: In all, 152 (38%) children were represented by 136 mothers and 57 fathers. Totally, 17.6% of the mothers and 14.0% of the fathers had ≥2 symptoms (assessed by the symptom index). Parents with lower education had 2.11 (95% CI: 1.01 to 4.40) times higher odds of having more symptoms than parents with higher education. Unmarried parents had 2.14 (95% CI: 1.03 to 4.42) times higher odds of having more symptoms than married parents. Ten per cent of the parents reported poor overall quality of life. CONCLUSION: According to the VDS, 1 out of 10 parents experienced poor overall quality of life 3-5 years after the loss. Every sixth had two or more symptoms assessed by the symptom index. Associated factors for poor quality of life suggest attention to particularly unmarried parents and parents with lower education.
Lykke C; Sjøgren P; Ekholm O
BMJ Supportive & Palliative Care
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/10.1136/bmjspcare-2021-003251" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003251</a>
Paediatric end-of-life care - symptoms and problems: parent assessment
children; end-of-life care; paediatric; parent assessment; symptom experiences and/or burden
OBJECTIVE: Symptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care. METHOD(S): All parents, who lost a child under the age of 18 years due to life-limiting diagnoses in the period 2012-2014 in Denmark, were invited to complete a self-administered questionnaire in 2017. In all, 152 (38%) children were represented by 136 mothers and 57 fathers. In the present study, parents' assessments of S&P during the last month of life were restricted to children aged 3-18 years. Data were analyses by means of descriptive statistics. RESULT(S): Children >=3 years at the time of death were represented by 71 parents (48 mothers and 23 fathers) representing 56 out of the 152 children. Physical fatigue (93%), sleepiness (90%), poor appetite (87%), pain (84%) and nausea (84%) were the five most frequent symptoms reported by the parents. In all, 65% of the parents reported that satisfactory pain relief was obtained and 64% of the parents reported that the healthcare services to a large extent reacted quickly, when the child and/or family needed help. However, 46% of the parents experienced 'mess-ups' or sloppy services in the primary ward and 27% experienced that the children suffered from fear of death. CONCLUSION(S): According to the parents, children with life-limiting diagnosis are highly symptomatic and have substantial problems during end-of-life care. Our findings indicate that systematic screening of S&P in children should be considered. Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.
Lykke C; Ekholm O; Olsen M; Sjogren P
BMJ Supportive & Palliative Care
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/10.1136/bmjspcare-2021-002891" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-002891</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>
All cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
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; Sjagren P
Acta Paediatrica
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<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>