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Perinatal palliative care: what to aim for and what to expect
PREPARE - Advance care planning in children
THE MENTAL HEALTH OF MOTHERS OF CHILDREN WITH A LIFE-LIMITING CONDITION; A COMPARATIVE COHORT STUDY
Abstract
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Background and aims
There are growing numbers of children with a life-limiting condition (LLC) in the UK. Mothers of these children often become a healthcare provider as well as a parent. Little is known about the effect on the mother’s mental health so this study aimed to quantify the incidence of maternal mental health morbidity.
Methods
A comparative cohort study using linked primary and secondary care data included three groups of children and their mothers (those with a LLC, those with a chronic condition and those with no long term health condition). Outcomes were identified using diagnostic codes in these datasets and incidence rates and incidence rate ratios were used to quantify and compare the outcomes between groups.
Results
35,699 mothers; 8950 whose child had a LLC, 8868 whose child had a chronic condition and 17865 whose child had no long term condition.
The adjusted IRR are shown:
anxiety were 1.13 (95%cI 1.04,1.23) LLC, 1.09 (95%CI 1.01,1.17) chronic with ‘heathy group as reference.
depression were 1.19 (95%cI 1.11,1.28) LLC, 1.08 (95%CI 1.01,1.16) chronic with ‘heathy group as reference.
severe mental illness were 1.70 (95%cI 1.21,2.41) LLC, 1.40 (95%CI 0.98,1.99) chronic with ‘heathy group as reference.
Conclusions
The incidence of both common and severe mental health diagnoses were higher in the mothers of those with a life-limiting condition compared to those of healthy children. This highlights the need for prevention, screening and treatment for these mothers.
NO VIDEO AVAILABLE - SUPPORTING SIBLINGS OF CHILDREN WITH CANCER: A MULTIPROFESSIONAL APPROACH
Abstract
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Background and aims
When a child is diagnosed with cancer, the entire family including siblings is affected and exposed to stress.
In a multidisciplinary approach comprising paediatric oncology, nursing, exercise therapy and psycho-oncology, various support measures for siblings were established at the childhood cancer centre Mainz. To improve comprehensive care for siblings of children with cancer, we aimed at analysing need and utilization of existing supportive services.
Methods
Fifty-two families of childhood cancer patients (diagnosed 2018-2020) with at least one sibling were approached. Stress burden endured by siblings and parents was assessed using a distress thermometer ranging from 0 (no distress) to 10 (extreme distress). Support measures for siblings were evaluated by means of questionnaires using school marks from 1 (very good) to 6 (inadequate).
Results
Questionnaires from 71 individuals out of 25 families were analysed (mean time since childhood cancer diagnosis 13.2 months).
Mean distress level in siblings (n=34, mean age 10.4y, range 3-19y) was 5.9±2.8 compared to a mean distress level of 8.2±1.8 in parents (n=37, mean age 41y). Online-video-tutorials were used by 80% of the families and evaluated with a mean mark of 1.7. Further, 64% of the families had participated in telemedicine-consultations for siblings (mean mark 1.6).
Conclusions
Siblings of children with cancer are at high risk for stress and need to be provided with appropriate support measures. Thus, families and health care professionals should be advised about ways to meet siblings’ needs, especially when they cannot visit the hospital regularly.
DOES HAVING A SIBLING WITH CHRONIC ILLNESS IMPACT EMOTIONAL AND BEHAVIOURAL ADJUSTMENT OF CHILDREN WITH CONGENITAL HEART DISEASE?
Abstract
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Background: Emotional and behavioural adjustment problems are well-documented in children with congenital heart disease (CHD). However, the evidence is limited concerning the impact of having a sibling with chronic illness and/or CHD on these outcomes, despite strong association with parental psychological distress. Thus, the aim of this study was to compare emotional and behavioural adjustment outcomes of children with CHD with a sibling with and without chronic illness and/or CHD.
Methods: In a cross-sectional sample of 441 children with CHD (M=9.2, SD=3.6 years; 58% male) recruited across USA through parent support organisations,135 children have at least one sibling with parent-reported chronic illness and/or CHD. Parents completed the 25-item Strengths and Difficulties Questionnaire (SDQ), a standardised screening measure with robust psychometric properties, assessing outcomes across emotional, conduct, inattention/hyperactivity, peer relationships, and prosocial behaviour. A clinically significant problem was defined as sex-specific subscale scores >90th percentile of a normative USA sample.
Results: Children with CHD with a sibling with chronic illness and/or CHD had significantly higher rates of parent-reported emotional (56.3% vs 42.8%, p<.01) and peer problems (40% vs 29.7%, p<.05) relative to those with a sibling without chronic illness and/or CHD. There were no significant between-group differences for conduct problems, inattention/hyperactivity, or prosocial behaviour.
Conclusions: Findings demonstrate that having a sibling with chronic illness and/or CHD increases the risk of emotional and behavioural adjustment difficulties in children with CHD. This highlights the need for additional developmental and psychosocial support for these families to optimise child neurodevelopmental outcomes.
INSIGHT IN KEY ELEMENTS OF INTERVENTIONS SUPPORTING CHILDREN’S PREFERENCES IN PAIN- AND STRESSFUL PROCEDURES: A SCOPING REVIEW
Abstract
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Background and Aim
Children undergoing medical procedures can experience pain and anxiety. Several interventions to support children in medical procedures are known. However, which interventions are effective for the individual child is very personal. Each intervention to reduce pain and anxiety has to be tailored to the situation and preferences of the child. A systematic, evidence-based approach to support children to express their preferences is needed. A scoping review was conducted to discover which interventions support children in expressing their preferences in medical procedures and to gain insight in the key elements of the interventions.
Methods
Searches were conducted in four databases in December 2019: Cinahl, Embase Pubmed and Psycinfo. Studies were selected if they reported interventions, instruments or tools enabling children to choose their preferences before medical procedures and written in English or Dutch.
Results
Of the 1,267 initial results, 14 studies were eligible for inclusion, describing seven interventions. The included studies differed in design, settings and age categories. Included studies showed that the interventions used were acceptable for children. Four important key elements were: 1) Providing information, 2) Asking for feelings, 3) Decision aid and 4) Reflection and reward. This elements correspond with the components of the concept shared decision-making. The given choice options were age-related.
Conclusion
Components of shared decision-making can be used to support children in expressing their preferences for procedures and treatment and to personalize procedural comfort care. Further research is needed to gain insight in the actual use of the interventions in practice.
PAEDIATRIC RESIDENTS AND FELLOWS ETHICS (PERFECT) SURVEY: PERCEPTIONS OF PAEDIATRIC TRAINEES REGARDING ETHICAL DILEMMAS IN THEIR CURRENT AND FUTURE PRACTICE
Abstract
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Background and aim
Ethical dilemmas (EDs) are increasing in paediatrics, and a source of concern for trainees. However, a lack of training on ethics in current paediatric curricula is reported. We aimed to assess perceptions of paediatric trainees on EDs in their current and future practice to support curriculum development and educational provision.
Methods
Online survey study among European paediatric trainees, available in nine languages from 1/11/19-31/1/20, covering: demographics (9 items), current/future EDs (19 items) and current/future ethics training (16 items). Data were analysed using SPSS, applying appropriate descriptive statistics and non-parametric tests of difference.
Results
Totally, 327 participants, mostly female (81%) and resident (68%), from 28 different countries, with a median (IQR) age of 30 (27-32) years, (partly) completed the survey. Most reported ethics training were ethics lectures in medical school (41%) and experience on the job (30%). Respondents reported intermediate confidence n ethics knowledge. Most experienced ED: disagreement with family (26%); most difficult to resolve: withholding/withdrawing life-sustaining treatment (WLST; 19%); most expected future EDs: disagreement with family (13%) and WLST (13%)(fig 1). Participants reported that current and future EDs are not properly addressed during their training and wished for more case-based training. Many participants have been personally affected by EDs, especially about WLST, and often did not feel properly supported(fig 2).
Conclusions
Paediatric trainees reported facing many EDs and state that ethics training about current and future EDs should be improved by e.g. more case-based training. Worryingly, many did not feel properly supported when experiencing challenging EDs.