Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals’ support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s). Conclusion : Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies. What is Known: • In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child’s symptoms, a life worth living and a family balance. What is New: • Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship. • Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes. • To provide tailored support, professionals need to understand parents’ perceptions, relationship with their child and coping strategies. Electronic supplementary material The online version of this article (10.1007/s00431-019-03393-w) contains supplementary material, which is available to authorized users.

Purpose Illness cognitions are an important mediator between disease and psychological adjustment. This study assessed the psychometric properties of the Illness Cognition Questionnaire (ICQ), adjusted for the parents of an ill child. Methods Participants were recruited from two multicenter studies: sample 1 included 128 parents of a child diagnosed with acute lymphoblastic leukemia (ALL) (response rate 82 %) and sample 2 included 114 parents of a child diagnosed with cancer (response rate 74 %). Parents completed an a d a p t e d ve r s i o n o f t h e I C Q ( I l l ne s s C o g ni t i o n Questionnaire-Parent version (ICQ-P)), together with the Profile of Mood States (POMS; sample 1) or the Hospital Anxiety and Depression Scale (HADS; sample 2). The factor structure of the ICQ-P was examined by means of principal component analysis. Cronbach's alpha for each subscale and correlations between the ICQ-P scales and the HADS and POMS were calculated. The illness cognitions of parents with and without psychological distress were compared.Results Factor analysis confirmed the hypothesized structure of the ICQ-P in our sample (n=242). The three scales Helplessness, Acceptance, and Perceived Benefits explained 9.8, 31.4, and 17.9 % of the variance, respectively. Cronbach's alpha showed adequate internal consistency (.80-.88). Concurrent and criterion-related validity were appropriate. Conclusions The results confirm that the ICQ-P reliably assesses the illness cognitions of the parents of a child with cancer. Psychologically distressed parents showed less acceptance and more helplessness. The availability of a short and valid illness cognition questionnaire will help clinicians gain insight into parental cognitions regarding the illness of their child, information that might be helpful for targeting interventions.

PurposeThe Psychosocial Assessment Tool (PAT) is a brief family screener, identifying families at universal or elevated risk for psychosocial problems. This study aimed to determine the feasibility and usability of the electronic PAT (ePAT) in pediatric cancer care.MethodsEighty-six parents of newly diagnosed children with cancer (0–18 years) agreed to participate and registered at the website www.hetklikt.nu (58%). Seventy-five families completed the ePAT at approximately 1 month post-diagnosis. Answers were transformed into an electronic PROfile (PAT ePROfile) and fed back to the psychosocial team. Team members completed a semi-structured evaluation questionnaire. Feasibility was measured as the percentage of website registrations, completed ePATs, and PAT ePROfiles reviewed or discussed by the team. Usability included perceived match of the PAT ePROfile with the team’s own risk estimation, perceived added value, and perceived actions undertaken as a result of the PAT ePROfile.ResultsFeasibility was 70% for website registration, 87% for completed ePATs, 85% for PAT ePROfile reviewing, and 67% for ePROfile discussion. Team members reported that the PAT ePROfile matched with their own risk estimation (M = 7.92, SD = 1.88) and did not provide additional information (M = 2.18, SD = 2.30). According to the team, actions were undertaken for 25% of the families as a result of the PAT ePROfile. More actions were undertaken for families with elevated risk scores compared to universal risk scores (p = .007).ConclusionsImplementation of the ePAT seems generally feasible, but it is not always clear how this screener adds to current clinical practice. Strategies should be developed together with team members to improve quick exchange of ePAT results and allocate care according to the needs of the families.

PurposePrevious research showed that children with cancer are at risk for developing behavioral adjustment problems after successful treatment; however, the course of adjustment remains unclear. This study focuses on adjustment trajectories of children during treatment for acute lymphoblastic leukemia (ALL) and aims to distinguish subgroups of patients showing different trajectories during active treatment, and to identify sociodemographic, medical, and psychosocial predictors of the distinct adjustment trajectories.MethodsIn a multicenter longitudinal study, 108 parents of a child (response rate 80 %) diagnosed with ALL were assessed during induction treatment (T0), after induction/consolidation treatment (T1), and after end of treatment (T2). Trajectories of child behavioral adjustment (Child Behavior Checklist; CBCL) were tested with latent class growth modeling (LCGM) analyses.ResultsFor internalizing behavior, a three-trajectory model was found: a group that experienced no problems (60 %), a group that experienced only initial problems (30 %), and a group that experienced chronic problems (10 %). For externalizing behavior, a three-trajectory model was also found: a group that experienced no problems (83 %), a group that experienced chronic problems (12 %), and a group that experienced increasing problems (5 %). Only parenting stress and baseline QoL (cancer related) were found to contribute uniquely to adjustment trajectories.ConclusionsThe majority of the children (77 %) showed no or transient behavioral problems during the entire treatment as reported by parents. A substantial group (23 %) shows maladaptive trajectories of internalizing behavioral problems and/or externalizing behavioral problems. Screening for risk factors for developing problems might be helpful in early identification of these children.Electronic supplementary materialThe online version of this article (doi:10.1007/s00520-016-3289-9) contains supplementary material, which is available to authorized users.

This study showed that families at risk, based on standardized risk assessment with the PAT, received more specialized care than families without risk. However, still 14% of the families with high risks only received basic care, and 63% of the families with standard risk got specialized care. Standardized risk assessment can be used as part of comprehensive care delivery, complementing the team.