Marta Tremolada

Conversational strategies with parents of newly diagnosed leukaemic children: An analysis of 4880 conversational turns

Goals of workCommunication with parents of children newly diagnosed with cancer poses a number of problems, mostly due to the psychological effects of parental trauma. This study was designed to answer the following questions: How can we sustain the flow of communication with parents of children newly diagnosed with leukaemia so that it may become easier and more effective? What should we say to gather more reliable information from parents? How can we help empower their coping strategies?Patients and methodsWe analysed 4880 conversational turns in individual conversations carried out between psychologists and 21 parents of children with leukaemia. The conversations were aimed at gathering information of the families’ daily routines. Dialogues were audiotaped and fully transcribed. The type and frequency of speech acts present in each turn were coded along 18 categories by two independent judges (inter-rater agreement, Cohen Kappa =0.73).Main resultsThe parental speech acts expressing emotion in various ways go up to 58% of the total number of their speech acts. The lag-sequential analysis showed that such expressions are not associated with any of the interviewer’s speech act. The same analysis showed that, by contrast, the interviewer’s style has an effect upon the cognitive aspects of parents’ conversation. Support of hope favoured parental ability to identify their coping strategies. Explicit requests, confirmations such as “sure” and key words summarizing parents’ viewpoints are followed by parental factual and objective narratives.ConclusionsBased on these results, a few practical recommendations for health care professionals are given in order to better communicate with parents of children newly diagnosed with cancer.

Perceived social support and health-related quality of life in AYA cancer survivors and controls.

This study compared education levels, health‐related quality of life (HRQoL) and perceived social support of adolescent and young adult (AYA) cancer survivors with those of a control group of peers with no history of serious illness. The links between socio‐demographic and medical factors and AYA cancer survivor outcomes were investigated.

Parental perceptions of health-related quality of life in children with leukemia in the second week after the diagnosis: a quantitative model

PurposeThe focus is on describing the child’s health-related quality of life (HRQL) at the time of diagnosis as perceived by parents, by using an empirical model of their psychosocial context.Patients and methodsPatients were 128 leukemic children and their families recruited at the Haematology–Oncology Clinic of the Department of Pediatrics, University of Padova. The families were interviewed by a clinical psychologist during the first hospitalization of their children using the Ecocultural Family Interview—Cancer (EFI-C). This interview aimed at understanding the family daily routines as it relates to the child with cancer and the meaning and experience of the situation. Demographic data about children and their families also were collected.ResultsThe EFI-C interviews were read for content and then coded; these items were grouped into 11 major dimensions, three dealing with the child in the hospital and eight concerning the family. An empirical model of path analysis was estimated to evaluate perceived child’s HRQL at the second week from the diagnosis inside the psychosocial context. This model shows that perceived child’s HRQL is predicted by parental trust in the medical staff, perceived child coping, and perceived child adaptability. These last two predictors are in turn moderated by the fixed factor child age and mediated by parenting.ConclusionA better knowledge of parents’ views and expectations regarding their children’s HRQL during the first treatments for pediatric leukemia may facilitate the communication processes in the hospital and may help to provide improved psychosocial care for the child during the first treatments for leukemia.

Quality of life and psychosocial sequelae in children undergoing hematopoietic stem‐cell transplantation: A review

Abstract:  This paper reviews the research published in the last 18 yr on QoL and psycho‐social sequelae in pediatric patients who have undergone HSCT. A corpus of 47 empirical studies was selected and is presented here. From this selection five main topics linked to psychological adjustment to HSCT emerged: QoL; psychological symptoms; cognitive sequelae; social adaptation; psycho‐social interventions for children. The information which emerged from the review of the literature is discussed with special attention to methodological issues. Directions for future research are proposed.

Post‐traumatic stress symptoms among mothers of children with leukemia undergoing treatment: a longitudinal study

To assess post‐traumatic stress symptoms (PTSS) in mothers of children over 2 years of leukemia treatment, to identify possible early family and child predictors of this symptomatology and to indicate the temporal trajectory of PTSS.

Perceived social support and health related quality of life in AYA cancer survivors of childhood and controls

This study compared education levels, health‐related quality of life (HRQoL) and perceived social support of adolescent and young adult (AYA) cancer survivors with those of a control group of peers with no history of serious illness. The links between socio‐demographic and medical factors and AYA cancer survivor outcomes were investigated.

Post-traumatic stress symptoms in mothers of children with leukaemia undergoing the first 12 months of therapy: Predictive models

The aim of this study consists in the measurement of psychological health and adaptation in mothers of children during the first 12 months of treatment for leukaemia and in the identification of possible early predictors. Ninety-four mothers were followed longitudinally at one week (T1), one month (T2), six months (T3) and 12 months (T4) post-diagnosis. The instruments used were: PTSD symptom checklist, BSI-18, Problem Scale, Ladder of life and an in-depth interview (EFI-C). Couple connectedness, family routine reorganisation, parental communication around the childs illness and trust in the medical care significantly increased from T1 to T4. Two models are proposed concerning possible predictors of mothers’ PTSS at T2 and at T3. Clinical suggestions are proposed on the basis of our empirical findings in order to plan informative, clinical and practical interventions for mothers of children under treatment for leukaemia.

A Review of Demographic, Medical, and Treatment Variables Associated with Health-Related Quality of Life (HRQOL) in Survivors of Hematopoietic Stem Cell (HSCT) and Bone Marrow Transplantation (BMT) during Childhood.

Hematopoietic stem cell transplantation (HSCT) is a standard treatment after disease relapse and failure of conventional treatments for cancer in childhood or as a first line treatment for some high-risk cancers. Since hematopoietic stem cells can be found in the marrow (previously called a bone marrow transplantation) or periphery, we refer to HSCT as inclusive of HSCT regardless of the origin of the stem cells. HSCT is associated with adverse side effects, prolonged hospitalization, and isolation. Previous studies have shown that survivors of HSCT are at particularly high risk for developing late effects and medical complications, and thus, in addition to survival, quality of life in survivors of HSCT is an important outcome. This review summarizes and distills findings on the health-related quality of life (HRQOL) of long-term childhood cancer survivors of HSCT and examines significant sociodemographic, medical, disease and treatment correlates of HRQOL, as well as the methodology of the studies (instruments, type of studies, timing of assessment, type of transplantation). Because previous reviews covered the studies published before 2006, this review searched three databases published between January, 2006, and August, 2016. The search identified nine studies, including 2 prospective cohort studies and 7 cross-sectional studies. All studies reported a follow-up time of >5 years. The review found that HRQOL is significantly impacted over time following childhood HSCT, with salient correlates of HRQOL found to be presence of a severe chronic health or major medical condition, graft vs. host disease (GVHD), or pain. Continual evaluation of HRQOL must be integrated into long-term follow-up after childhood HSCT, and intervention should be offered for those survivors with poor HRQOL. Longitudinal studies should be emphasized in future research to allow for predictor models of resilience and poor HRQOL.

Eliciting Adaptive Emotion in Conversations with Parents of Children Receiving Therapy for Leukemia

Clinician–parent communication may often be difficult, especially soon after the diagnosis. The aims of this article are to identify the communication strategies associated with expressions of adaptive emotions in parents and to explore the effect of the type of leukemia and of parents gender on parents’ expressions of emotions. The data are obtained from 4.622 conversational turns of 20 videotaped interviews with 10 mothers and 10 fathers of children at their first hospitalization for leukemia. A coding scheme for parent emotional expressions was reliably applied by two independent judges. An original self-report questionnaire on parents’ emotional states was used before and after the interview. Positive politeness of interviewer elicits adaptive emotional expressions in parents. Mothers of children with acute myeloid leukemia and fathers of children with acute lymphoblastic leukaemia appear more distressed during the interview. This interview can be identified as an innovative technique of communication with parents of children with cancer.

Self-Esteem and Academic Difficulties in Preadolescents and Adolescents Healed from Paediatric Leukaemia

Adolescents with cancer may demonstrate problems in their self-esteem and schooling. This study aims to screen the preadolescents and adolescents more at risk in their self-esteem perception and schooling difficulties post-five years from the end of therapy. Twenty-five paediatric ex-patients healed from leukaemia were recruited at the Haematology-Oncologic Clinic (University of Padua). The mean age of the children was 13.64 years (Standard Deviation (SD)) = 3.08, range = 10–19 years), most were treated for acute lymphoblastic leukaemia (ALL) (84%) and relatively equally distributed by gender. They filled in the Multidimensional Self-Esteem Test, while parents completed a questionnaire on their child’s schooling. Global self-esteem was mostly below the 50 percentile (58.5%), especially regarding interpersonal relationships (75%). An independent sample t-test showed significant mean differences on the emotionality scale (t = 2.23; degree of freedom (df) = 24; p = 0.03) and in the bodily experience scale (t = 3.02; df = 24; p = 0.006) with survivors of Acute Myeloid Leukaemia (AML) having lower scores. An Analysis of Variance (ANOVA) showed significant mean differences in the bodily experience scale (F = 12.31; df = 2, p = 0.0001) depending on the survivors’ assigned risk band. The parent reports showed that 43.5% of children had difficulties at school. Childhood AML survivors with a high-risk treatment were more at risk in their self-esteem perceptions. Preventive interventions focusing on self-esteem and scholastic wellbeing are suggested in order to help their return to their normal schedules.