Retaining Parental Role Despite the Presence of Hematological Neoplastic Diseases: The Emanuela Project and the Role of the Hematologist

Introduction

The diagnosis of a hematological neoplastic disease (HND) bears a great impact on the patient family, which suffers abrupt changes in living patterns because of prognosis, prolonged hospitalization and therapy related adverse events.

Parents often believe that the best way to protect their children from suffering is to avoid communications about the disease, as "they wouldn't understand".

Many hospitals offer family support, usually managed by psychologists; we hypothesized that the hematologist can play a key role in this process, being the one who primarily takes care of the patient, possesses the scientific skills necessary to explain the disease and is viewed by the family members as the key player.

Since 2010, patients admitted to the Hematology Division at San Gerardo Hospital in Monza - Italy, who have minors in their family can participate in the "Emanuela Project" (see below).

Methods

The aim of this pilot study is to evaluate the impact of this intervention on children health status as perceived by their parents either affected or unaffected by HND. Ten hospitalized patients with a HND disease diagnosed between November 2017 and May 2018, with at least one child aged 0-18 years were recruited after signing an informed consent.

Intervention: children can visit their parents in a dedicated hospital room in the days after diagnosis and an informal talk with a hematologist and a psychologist is organized; the hematologist, using simple images and metaphors (e.g. "flowered garden" to represent the normal bone marrow), explains the illness and answers questions, while the psychologist helps children to express emotions about the situation. A questionnaire, administered 30-60 days after the intervention to all parents, explores their perceptions about changes in each child; itconsists of 18 multiple choice questions and 15 open questions.

Data were analyzed with statistical software STATA. Open questions were fully read and interpreted by authors; T-LAB software was used to evaluate relevant recurring words .

Results

All 10 patients that were offered the intervention consented to it; 9 out of 10 patients have returned their questionnaires by July 2018 Five of them were fathers (55.56%) and 4 mothers (44.44%), with a mean age 50.22+/- 9.19 (SD). Diagnoses were Acute Leukemia (5), Lymphoma (2) and Multiple Myeloma (2). Mean duration of hospital stay was 26.2 days (+/- 12.8 SD) .

The study included 16 children, aged 4 to 18 (mean 10 +/- 5 SD). We analyzed 28 questionnaires. Data from multiple choice questions exploring changes in children behavior suggest that, according to both parents there was no substantial worsening in school performance, appetite, sleep patterns (see table 1). These findings suggest that talking to children about the disease didn't traumatize them, and gave some concrete and reassuring answers to unexpressed fears. An interesting finding is that 44% of children increased their need to be in contact with the ill parent, showing a strengthening of relationships inside the family. One relevant finding concerns the possibility to talk about HND inside the family: 93% of parents gave a score of 3 (=often) or 4(=always) to this question. 100% of parents stated that it was never necessary to keep clinic visits or hospital admissions hidden from their children; 80% never had to hide side effects of therapies. All healthy parents and 87.5% of sick ones found that communicating with their children was a correct strategy, and that this intervention by hematologist and psychologist was useful. According to 88% of them, such a difficult task is responsibility of parents and of a specific professional figure, the hematologist. The use of simple images and metaphors helped 85.7% of healthy parents and 62.5% of ill ones to understand the illness better. According to 75% of parents, the intervention also played a key role in improving their relationship with doctors. The T-Lab analysis of recurring words is presented in Tab 2.

Conclusions

Data indicate that for parent it is important to be supported by their hematologist in the difficult task of explaining their illness to their children. The Emanuela Project allows parents to retain a parental role despite their illness; communication contributes also to increase trust in the medical staff and compliance to physically and emotionally demanding treatments.

These data will be compared to those obtained in nearby hospitals who do not offer such a service.

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