Children with palliative care needs - the landscape of the nordic countries.

BACKGROUND: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. METHODS: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. RESULTS: In total, the Nordic child population comprises around six million children (0-19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. CONCLUSION: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context.

Co-Occurrence of Prevalent Symptoms in Patients Receiving Hemodialysis - A Cross-Sectional Survey.

Patients with chronic kidney disease undergoing hemodialysis generally have a significant symptom burden, which may interfere with their quality of life. The aim of this study was to identify the prevalence of fatigue, pain, anxiety, and depression in patients on hemodialysis and analyze their co-occurrence. A cross-sectional study used self-reported measures. A total of 242 patients aged 18 years or older were initially screened; 141 were included in the study; 129 answered the questionnaires (response rate 91%). Preva lences were 24.8% had moderate to severe fatigue, 38.0% had pain, 32.6% had anxiety, and 29.5% had depression. The prevalence of coexistent moderate to severe symptoms ranged from 15.5% to 25.6%. Further research is needed to better understand the symptom burden and their co-occurrence in patients receiving hemodialysis.

Paediatric end-of-life care - symptoms and problems: parent assessment.

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. METHODS: 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. RESULTS: 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: 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.

[Specialised palliative care for children and adolescents and their families].

This is a review of palliative care for children in Denmark which remains a relatively new area. Studies have shown a high prevalence of symptoms and problems in children with life-limiting diagnoses during the last month of life. Psychological distress also seems to have high impact on their suffering. Bereaved parents had unmet needs for treatment and support both during the child's illness and after the child's death. Increased knowledge of palliative care requires a strengthened focus on clinical interventions, education and research in order to improve treatment and care for the children and their families.

End-of-life communication: a nationwide study of bereaved parents' perceptions.

OBJECTIVE: To investigate bereaved parents' perception of end-of-life communication with healthcare professionals after losing a child due to life-limiting diagnoses. METHODS: A national register identified the causes of death of 951 children aged 0-18 years during the period 2012-2014. A previously described classification of life-limiting diagnoses identified 402 children. A modified version of the self-administered questionnaire 'To Lose a Child' was distributed to the parents of these 402 children, capturing their perceptions of communication with the healthcare professionals throughout the child's disease trajectory and imminent death. RESULTS: A total of 193 bereaved parents, representing 38% of the identified children, participated in the study. Overall, 98% of the parents expressed the view that physicians should immediately disclose when curatively intended treatment options were exhausted. Some 79% of parents reported that information about their child's incurable illness was given in an appropriate manner; however, 42% said that information about the child's imminent death was given too late. Finally, 31% felt deprived of the option to say goodbye to their child in their preferred manner, and 56% said that their child's death was "a shock". CONCLUSIONS: Parents request accurate and timely information. However, a substantial number of the parents surveyed reported that healthcare professionals communicated too late about palliative care and end-of-life issues. Even though healthcare professionals strive to communicate effectively with dying children and their parents, barriers were identified that may hinder even the best of intentions. National guidelines addressing communication issues and improved education of healthcare professionals should form part of any future agenda.

Losing a child due to a life-limiting diagnosis-parental well-being and quality of life: nationwide survey.

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.

Anxiety and Depression in Bereaved Parents After Losing a Child due to Life-Limiting Diagnoses: A Danish Nationwide Questionnaire Survey.

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.

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.