Impact of the COVID-19 pandemic on health-related quality of life and anxiety in pediatric hematology/oncology patients.

Since the World Health Organization declared the COVID-19 pandemic in March 2020, the strain on healthcare services affected patients suffering from various comorbidities and added to the psychological burden. The study aimed to assess the health-related quality of life (HRQoL) and anxiety levels of pediatric Hematology/Oncology patients during the COVID19 pandemic and evaluate the association between anxiety levels and physical, emotional, and social aspects of HRQoL. A cross-sectional study was conducted on 292 children between 2.5 - 13 years with chronic hematological/oncological disorders. Pediatric Quality of Life Generic Core Scale and Spence Children's Anxiety Scale were used for assessment of HRQoL and anxiety, respectively. Linear regression was performed to assess the association between background and COVID-19 related factors with anxiety level. Multivariate Analysis of Variance (MANOVA) was performed to assess the association between the three HRQoL dimensions with child anxiety and different independent variables. Transfusion-dependent patients had lower anxiety levels than patients receiving chemotherapy (B=-14.45, 95% CI=-21.94,-6.95).Children who were aware of the pandemic had lower anxiety scores than those who were not, while those suffering from canceled clinic days had higher anxiety levels (B=-8.66,95% CI=-14.86,-2.45, and B = 7.33,95% CI =1.22,13.45, respectively). Anxiety significantly reduced the three HRQoL domains (B=-0.36, 95% CI=-0.47, -0.24 for physical functioning, B=-0.45, 95% CI =-0.56, -0.33 for social functioning and B=-0.50, 95% CI=-0.63,-0.38 for emotional functioning). This study highlights the effect of the pandemic on the anxiety level and hence the HRQoL of chronic hematological/oncological pediatric patients for guiding policies and interventions to maintain their psychological well-being.

El dolor: algunos criterios desde la Psicología / Pain: some psychological criteria

Introducción: El dolor como experiencia subjetiva desagradable es un síntoma frecuente en los pacientes atendidos en el servicio de Hematología. Este afecta al individuo a nivel psicológico y provoca la aparición de dificultades en las áreas laboral, educacional, familiar y en las relaciones interpersonales. La percepción del dolor puede verse distorsionada como resultado de esta alteración provocada en el paciente. Objetivo: Analizar los factores psicológicos que median la percepción del dolor de los pacientes. Métodos: Se realizó una revisión de la literatura, a través del sitio web PubMed y el motor de búsqueda Google Académico. Se emplearon las palabras clave: dolor, manejo del dolor, evaluación del dolor, psicología del dolor, dolor en hematología, dolor en drepanocitosis, dolor en hemofilia, dolor en leucemia. Análisis y síntesis de la información: Se evidencia el carácter multifacético de esta experiencia subjetiva. Los determinantes y mecanismos del dolor son diversos, lo cual implica que su enfrentamiento requiera un enfoque integral que ayude a los pacientes a desarrollar conciencia acerca de los efectos de la enfermedad que padece y los síntomas del dolor. También es necesario guiarlos en la comprensión de los factores que contribuyen a su magnificación, crear estrategias que les ayuden a minimizar la exposición a estos, y orientarlos para que desarrollen métodos personales que les permitan lidiar con el dolor con un mínimo estrés psicológico. Conclusiones: El dolor es un fenómeno complejo que involucra diversas variables y factores en su funcionamiento. Su manejo requiere un enfoque integral para la atención de los pacientes en su enfrentamiento al dolor(AU)

Introduction: Pain as an unpleasant subjective experience is a frequent symptom in patients treated by the Hematology service. This affects the individual on a psychological level and causes the onset of difficulties in the work, educational, family and interpersonal relationships. The perception of pain can be distorted as a result of this alteration caused in the patient. Objective: To analyze the psychological factors that mediate patients' perception of pain. Methods: A literature review was carried out through the PubMed website and the search engine of Google Scholar. The following keywords were used: dolor [pain], manejo del dolor [pain management], evaluación del dolor [pain assessment], psicología del dolor [pain psychology], dolor en hematología [pain in hematology], dolor en drepanocitosis [pain in sickle cell disease], dolor en hemofilia [pain in hemophilia], dolor en leucemia [pain in leukemia]. Information analysis and synthesis: The multifaceted nature of this subjective experience is evidenced. Pain determinants and mechanisms are diverse, which implies that their coping requires a comprehensive approach that helps patients develop awareness about the disease effects and the pain symptoms. It is also necessary to guide them in understanding the factors that contribute to pain magnification, create strategies that help them minimize pain exposure, and guide them to develop personal methods that allow them to deal with pain with minimal psychological stress. Conclusions: Pain is a complex phenomenon involving several variables and factors in its operation. Its management requires a comprehensive approach to patient care regarding coping with pain(AU)

Caregiver-reported clinical characteristics and the burden associated with Kabuki syndrome.

Kabuki syndrome is a genetic disorder that can affect multiple body systems and manifest as congenital abnormalities and both developmental and socio-emotional delays. The condition is largely unknown by most primary care physicians and has no available treatment other than symptomatic management. This research sought to obtain caregiver-reported data about the experience of living with and caring for someone with Kabuki syndrome to fill a gap in the available literature. Fifty-seven caregivers participated in an online survey and reported that Kabuki syndrome affected their children in a wide variety of ways, including a high frequency of visits to various healthcare professionals. Caregivers reported their child experienced problems with hearing, eating, eyes, mouth, immune system, anxiety, depression, autism, teeth, joints, seizures, kidneys, and heart. Caregivers also described the challenges of caring for someone with Kabuki syndrome, including an impact on emotional well-being and the ability to work outside the home. This unique research characterizes the caregiver experience of living with and caring for someone with Kabuki syndrome, both through observed manifestations of Kabuki syndrome in their own children and their experience managing their treatment. Additional research is needed to investigate the patient experience of living with Kabuki syndrome.

Haematopoiesis, or Blood Poetry.

"It was just a few small red dots," I would recount to innumerable sympathetic nurses. They-the dots, not nurses-clustered together on my son's smooth slim neck. I stroked them as I dressed him after the bath. My inner hypochondriac was oddly quiet. Larry, my son, was well, throwing himself through the world with speed, joy, and curiosity. The next day I took him casually to our general practitioner to get these curious freckles checked. Then everything started to tilt. How do I weave it all together? In a string of Facebook posts? In a small impersonal room opposite a stranger while I sip a glass of water? In a series of dark jokes with my husband in the kitchen late at night? In snatches of awkward conversation with friends? In dreams from which I wake gasping? By scouring the sentences of authors and archives? From the discoveries of Paul Ehrlich to the scattered words of Emily Dickinson to the constant mechanical chugging of the IV pump, this interdisciplinary essay delves into the medical and cultural history of blood and bone marrow to tell an acutely personal story.

Lavender Aromatherapy: Examining the Effects of Lavender Oil Patches on Patients in the Hematology-Oncology Setting.

BACKGROUND: Lavender aromatherapy treatment has been used for the general inpatient population to promote relaxation during hospitalization; however, limited research has been conducted on its efficacy with an inpatient hematology-oncology population. OBJECTIVES: The purpose of this mixed-methods study was to determine the feasibility of wearable overnight lavender aromatherapy skin patches as a patient-directed nursing intervention for 40 patients on an inpatient hematology-oncology unit. METHODS: Data were collected during a two-month period using the Lavender Satisfaction Assessment and the Generalized Anxiety Disorder-7 (GAD-7) scale. Patient demographics and open-ended responses were also collected. FINDINGS: After implementing the overnight aromatherapy patches, about half of the participants reported an absence of anxiety or measurable anxiety symptoms, and participants perceived better sleep quality and duration. The results indicate that a nurse- and patient-driven aromatherapy intervention can improve the quality of care on an inpatient hematology-oncology unit.

The Korean-Advance Directive Model and Factors Associated With Its Completion Among Patients With Hematologic Disorders.

The objective of this pilot study was to examine factors associated with the completion of advance directives (ADs) among patients with hematologic disorders in Korea. Using a descriptive design, patients with largely hematologic malignancies completed the questionnaires, including the Korean-Advance Directive (K-AD) model, which pertains to values, treatment wishes, and proxy appointment. Of 45 patients (aged 48.7 ± 10.7 years, 51.1% men), two-thirds had leukemia (40.0%) and lymphoma (26.7%). "Dying comfortably" was the most frequently selected value (n = 20). Regarding treatment wishes, hospice care was the most desired type (n = 22), whereas aggressive treatments, such as cardiopulmonary resuscitation, were less preferred (n = 3). The patient's spouse was most frequently appointed as a proxy (n = 27). Patients who completed all the 3 components of the K-AD model (51.1%) were less depressed (t = -2.31; P = .028) and more likely to perceive the benefits of the K-AD model (t = 2.07; P = .045), compared with the noncompleters (48.9%). Further, being male (odds ratio [OR], 6.42; P = .031), having higher scores on depressive symptoms (OR, 1.28; P = .016), and perceived barriers (OR, 1.08; P = .040) were associated with lower tendency to complete the K-AD model. These findings support the need for earlier introduction of ADs in hematologic disorders, with consideration of modifiable factors such as depression or barriers to end-of-life care decisions.

Caring Through Web-Based Communication: A Qualitative Evaluation of a Nursing Intervention to Create Holistic Well-Being Among Patients With Hematological Disease.

PURPOSE: To examine how written communication between patients with hematological diseases and a nurse within a web-based communication service can be caring. DESIGN: The study is based on qualitative deductive content analysis of 109 written messages between 10 patients and a responding nurse. The evaluated nursing intervention is a web-based communication service where patients could request support from a responding nurse during 2 months of use. A structured theoretical matrix based on Swanson's theory of caring including compassion, competence, and upholding trust is used for the analysis. FINDINGS: Nursing compassion emerges when patients share personal matters and the nurse has an opportunity to explicitly display genuine interest and understanding. Nursing competence is required when patients ask for or are in need of information, advice, and emotional support. The nurse can uphold trust when compassion and competence are exhibited and patients share their innermost feelings. CONCLUSIONS: Web-based communication has the potential to contribute to holistic well-being according to Swanson's theory of caring. The written word lasts, can be read repeatedly, and in connection with writing there is time for reflection. However, the lack of nonverbal cues makes it important that the nurse answers in a fully accurate and explicitly caring way.

Spiritual Needs and Perception of Quality of Care and Satisfaction With Care in Hematology/Medical Oncology Patients: A Multicultural Assessment.

CONTEXT: Assessment and response to patients' spiritual concerns are crucial components of high-quality supportive care. Better measures of spiritual needs across the cultural spectrum may help direct necessary interventions. OBJECTIVES: The objective of this study was to assess spiritual needs in a racially/ethnically and religiously mixed sample of hematology and oncology outpatients and examine the association between spiritual needs and perception of quality of care and satisfaction with care. METHODS: This is an observational study of 727 racially/ethnically and religiously diverse outpatients. Spiritual needs were measured using a validated, 23-item questionnaire, the Spiritual Needs Assessment for Patients. Scales were administered in four languages. RESULTS: Forty-four percent were white, 13% Hispanic, 25% black, and 14% Asian. English was the primary language for 57%; 59% considered themselves "spiritual but not religious." At least one spiritual need was reported by 79%. Forty-eight percent were comfortable having their physician inquire about spiritual needs. Compared with English-speaking patients, Russian-speaking patients reported lower spiritual needs (P = 0.003). Patients who considered themselves "spiritual but not religious" (P = 0.006) reported a higher level of spiritual needs. Higher spiritual needs were associated with less satisfaction with care (P = 0.018) and lower perception of quality of care (P = 0.002). CONCLUSION: Spiritual needs are common in an ethnically, religiously, and linguistically diverse cancer patient population but may differ by cultural background. High levels of spiritual need are associated with lower levels of satisfaction and diminished perception of quality of care. Training clinicians to address patients' spiritual concerns, with attention to cultural differences, may improve patients' experiences of care.

Espiritualidade e religiosidade em mães de crianças com câncer hematológico / Spirituality and religiosity in mothers of children with hematologic cancer / Espiritualidad y religiosidad en madres de niños con cáncer hematológico

Espiritualidade e religiosidade constituem fontes significativas de suporte emocional e social para familiares de crianças gravemente doentes, sobretudo no caso de doenças potencialmente terminais. O transplante de células-tronco hematopoiéticas (TCTH) é um dos tratamentos mais arrojados e promissores que surgiram nas últimas décadas para doenças onco-hematológicas. Trata-se de procedimento altamente invasivo e que envolve risco de morte em decorrência de seus efeitos adversos. Por isso, exige o envolvimento intenso de um cuidador familiar durante todas as suas etapas, o que expõe esse membro da família a estressores contínuos. O objetivo deste estudo foi investigar o sentido atribuído à espiritualidade e religiosidade por mães de crianças com câncer hematológico submetidas ao transplante de células-tronco hematopoéticas.Trata-se de uma pesquisa qualitativa, de delineamento descritivo-exploratório, com fundamentação fenomenológica. Foram entrevistadas dez mães. As entrevistas individuais foram audio gravadas e, posteriormente, transcritas e submetidas à análise compreensiva dos relatos. Espiritualidade e religiosidade emergiram nas falas das participantes, coloridas pelas diferentes crenças religiosas professadas, como fonte de apoio e alento para a cuidadora familiar, auxiliando-a a suportar as adversidades inerentes à situação de ser acompanhante de paciente submetido a procedimento de alto risco. Os resultados corroboram a importância da religiosidade e da espiritualidade como recursos de enfrentamento.

Spirituality and religiosity are important sources of emotional and social support for families of severely ill children, specially when it comes to potentially terminal illnesses. Hematopoietic stem cell transplantation is one of the most daring and promising alternatives that have emerged in the last decades to treat onco-hematological diseases. It is a highly invasive procedure and involves risk of death due to its adverse effects, therefore, it requires close involvement of a family caregiver during allof its stages, which exposes this family member to continuous stressors. The goal of this study was to investigate the meaning attributed to spirituality and religiosity by mothers of hematologic cancer patients undergoing hematopoietic stem cell transplantation. This is a qualitative research, with a descriptive-exploratory design and a phenomenological fundamentation. Ten mothers whose children had undergone hematopoietic stem cell tranplantation were interviewed. Individual interviews were audio-taped and later transcribed and subjected to the comprehensive analysis of the reports. Spirituality and religiosity emerged from the speeches of the participants colored by different professed religious beliefs as a source of support and encouragement for familycaregivers, helping them to deal with the adverse situation of being companion of a patient undergoing a high-risk procedure. Results corroborated that spirituality and religiosity are important coping resources.

Espiritualidad y religiosidad constituyen una importante fuente de apoyo emocional y social para las familias de niños gravemente enfermos, especialmente en lo que se refiere a enfermedades potencialmente terminales. El trasplante de células madre hematopoyéticas es uno de los tratamientos más audaces y más prometedores que han surgido en las últimas décadas para enfermedades onco-hematológicas. Es un procedimiento altamente invasivo que implica riesgo de muerte debido a sus efectos adversos. Por lo tanto, se requiere la participación activa de un cuidador familiar durante todas sus fases, lo que expone a este miembro de la familia a continuos factores de estrés. El objetivo de este estudio fue investigar el significado dado a la espiritualidad y la religiosidad de las madres de niños con cáncer hematológico sometidos a trasplante de células madre hematopoyéticas. Se trata de un estudio cualitativo, con diseño descriptivo y exploratorio y fundamentación fenomenológica. Se entrevistaron a diez madres. Las entrevistas individuales fueron grabadas en audio y posteriormente transcritas y sometidas a análisis comprehensiva de los informes. La espiritualidad y la religiosidad surgieron en los discursos de las participantes, coloreado por las diferentes creencias religiosas profesas como fuente de apoyo y aliento a las madres cuidadoras, lo que ayuda a soportar las dificultades inherentes a la situación de ser compañera de un paciente sometido a un procedimiento de alto riesgo. Los resultados confirman la importancia de la espiritualidad y la religiosidad como recurso de afrontamiento

[Blood representations associated to chronic transfused patients: Symbolic interpretations and ethical perspectives]. / Lectures des représentations du sang chez les receveurs chroniques de produits sanguins labiles : interprétations symboliques et perspectives éthiques.

Since the beginning of the 20th century, major technological developments have been made in blood transfusion. Although numerous sociological studies have been conducted on donors, few have highlighted transfused patients, and in this case, the attention has almost exclusively been focused on transfusion risks in patients. Conversely, blood representations associated with the chronically transfused patients have not really been explored in the literature. Based on interviews conducted among chronically transfused patients (patients with hemoglobinopathy, malignant hemopathy or cancer), this present study enables to understand their needs and their expectations through their symbolic representations and their interpretations of blood transfusion, raising tensions as well ethical perspectives.

Emotional distress and burden among caregivers of children with oncological/hematological disorders.

INTRODUCTION: Caring for children with oncological and hematological disorders may lead to caregiver emotional distress and caregiver burden; however, little work has examined the relationship between children's symptoms and caregiver's distress and burden. METHOD: This study used self-report survey data from caregivers (N = 96) and a cross-sectional design to examine correlates of caregiver emotional distress and burden. Data collected included caregiver and child demographic data, child symptoms (i.e., sleep problems, pain, and emotional/behavioral problems), caregiver emotional distress, and caregiver burden. RESULTS: Multiple linear regression found that parent reported financial difficulty (ß = 0.29, t = 3.13, p = .003), greater child sleep problems (ß = 0.29 t = 2.81, p = .007), greater child pain (ß = 0.33 t = 3.48, p = .001), and greater child emotional/behavioral problems (ß = 0.27, t = 2.71, p = .009) were all related to higher levels of caregiver emotional distress. Only financial difficulties (ß = -0.35, t = -2.03, p = .04) and child pain (ß = -0.30, t = -2.33, p = .02) were related to caregiver burden. DISCUSSION: Child symptoms may play an important role in the development of caregiver distress and caregiver burden; future research should utilize longitudinal designs to examine temporal and casual relationships. (PsycINFO Database Record

The choice dilemma in chronic hematological conditions: Why choosing is not only a medical issue? A psycho-cognitive perspective.

Research in cognitive psychology focused on risk perception and decision making was shown to facilitate treatment choice and patient's satisfaction with decision in a number of medical conditions, increasing perceived alliance between patient and physician, and adherence to treatment. However, this aspect has been mostly neglected in the literature investigating choice of treatment for chronic hematological conditions. In this paper, a patient centered model and a shared decision making (SDM) approach to treatment switch in chronic hematological conditions, in particular chronic myeloid leukemia, atrial fibrillation, and ß-thalassemia is proposed. These pathologies have a series of implications requiring important decisions about new available treatments. Although new generation treatments may provide a significant improvement in patient's health and health-related quality of life (HrQoL), a significant percentage of them is uncertain about or refuse treatment switch, even when strongly suggested by healthcare guidelines. Possible cognitive and emotional factors which may influence decision making in this field and may prevent appropriate risk-and-benefits evaluation of new treatment approaches are reviewed. Possible adaptive strategies to improve quality of care, patient participation, adherence to treatment and final satisfaction are proposed, and implications relatively to new treatment options available are discussed.

'You never leave work when you live on a cattle property': Special problems for rural property owners who have to relocate for specialist treatment.

OBJECTIVE: This paper contributes to the literature on relocation for specialist care by providing findings on specific issues impacting on rural farmers and property owners who have to travel to the metropolitan area for specialist care for a haematological malignancy. DESIGN AND SETTING: This paper uses descriptive qualitative research based on 45 interviews with patients with haematology in Queensland. The interviews were audio-recorded, transcribed verbatim, coded and thematically analysed. RESULTS: In addition to issues of distance, farmers and rural property owners who have to relocate for specialist care must deal with problems associated with the lack of opportunity to take absence from the property because of the inescapable pressure of daily farm and property responsibilities and the high cost of, or lack of opportunity to, outsource daily maintenance. Further concerns include the cost of relocation in the context of continuing drought, serious problems sustaining the travel and time away required, and the lack of choice for some but to deal with treatment alone. CONCLUSION: In recent years there has been considerable progress with regard to overcoming the distance barrier for rural and remote patients with cancer through innovative clinical models using technology and telemedicine. However, there has been limited uptake of such models for patients with haematology. The present findings indicate that from the perspective of rural farmers and property owners there are important reasons why the use of innovative strategies should be fostered and expanded.

Survey of Patients Referred to a University Cancer Center for Benign Hematology: Quality Measures and Patient Understanding.

OBJECTIVE: To investigate patients' knowledge and understanding of benign hematology and the potential psychological impact that is associated with referral to outpatient clinics. METHODS: At Mary Babb Randolph Cancer Center, an anonymous and voluntary survey including 28 questions was designed on the basis of information obtained from a single focus group. A participatory pilot survey was performed with 10 patients followed by a full-scale survey from May until November 2013. Statistical software was used for analysis. RESULTS: Among 98 patients who received the questionnaire, 37.6% were men, 62.4% women, 70.9% ≥ 40 years of age, 94.6% white, and 51.6% had some college education or above. Of the patients surveyed, 62.4% were surprised to find that their appointment was at a cancer center, and 36.6% received no explanation before their referral. A total of 61.3% did not know what benign hematology was, and only 61.2% knew that cancer physicians are also frequently trained to see patients with benign hematology conditions. Among the patients, 46.2% and 39.8% had an increase in anxiety and stress, respectively; 30.1% were afraid that they might have cancer; and 32.3% thought that the reason for their referral to the cancer center was for an evaluation for cancer. Knowledge was significantly better in women patients and patients who had been seen by an outside hematologist before or had been to a cancer center before. CONCLUSION: Referral to outpatient clinics in a cancer center for benign hematologic diseases seems to increase psychological stress and anxiety among patients, who may perceive that they are being referred for evaluation of a cancer diagnosis.

Participation in clinical research: perspectives of adult patients and parents of pediatric patients undergoing hematopoietic stem cell transplantation.

Despite major improvements over the past several decades, many patients undergoing hematopoietic stem cell transplantations (HSCT) continue to suffer from significant treatment-related morbidity and mortality. Clinical research studies (trials) have been integral to advancing the standard of care in HSCT. However, 1 of the biggest challenges with clinical trials is the low participation rate. Although barriers to participation in cancer clinical trials have been previously explored, studies specific to HSCT are lacking. The current study was undertaken to examine the knowledge, attitudes, and perceptions of HSCT patients regarding clinical trials. As members of focus groups, participants responded to open-ended questions that assessed factors influencing decision-making about HSCT clinical trials. Suggestions for improvements in the recruitment process were also solicited among participants. Seventeen adult HSCT patients and 6 parents of pediatric HSCT patients participated in the study. The median age was 56 years (range, 18 to 70) and 44 years (range, 28 to 54) for adult patients and parents, respectively. Participants universally indicated that too much information was provided within the informed consents and they were intimidated by the medical and legal language. Despite the large amount of information provided to them at the time of study enrollment, the participants had limited knowledge retention and recall of study details. Nevertheless, participants reported overall positive experiences with clinical trial participation and many would readily choose to participate again. A common concern among participants was the uncertainty of study outcome and general lack of feedback about results at the end of the study. Participants suggested that investigators provide more condensed and easier to understand informed consents and follow-up of study findings. These findings could be used to help guide the development of improved consent documents and enhanced participation in research studies, thereby affecting the future design of HSCT research protocols.

The teen impact experience: a webcast pilot project for teens with cancer and blood diseases.

This article discusses a novel service, webcasting of a live group, implemented in response to the 2009-2010 H1N1 Flu pandemic by Teen Impact, a program geared at providing social therapy to adolescents diagnosed with cancer or a blood disorder. To ensure that services were not disrupted to adolescents on treatment despite flu restrictions, Teen Impact obtained necessary equipment to webcast the group. A total of 6 Teen Impact members participated in the webcast portion of the group. Findings revealed that existing members who had participated in the face-to-face Teen group were left with feelings of dissatisfaction due to lack of physical interaction with other members. New members appeared to enjoy this option admitting that the webcast provided them with the ability to feel supported by others with similar stories without having to face unknown members in person. A positive outcome from this type of intervention resulted in the webcast serving as a stepping stone for future face-to-face participation.

Invented fairy tales in groups with onco-haematological children.

BACKGROUND: The impact of an onco-haematological illness for children is a traumatic event that opens to pain, hospitalizations and interrupts the continuity of daily life. It is difficult for the child to make meaning, to share the pain or ask a question related to the illness because, often, the parents or doctors cannot find a way to communicate in a suitable way for the child who remains in a situation of 'unspoken', where, fear, anxiety and pain cannot find a space to express. METHODS: The present research-intervention uses the methodology of invented fairy tales in groups with onco-haematological children, in the hospital, in order to explore the organization of the meanings at the base of the tales co-constructed by the participants underlying weaknesses and strengths of the invented fairy tales in groups intervention. The invented fairy tales in groups is used as a tool, such as a play, to express, share and support the experience of the illness of children. Forty-nine children participated to the invented fairy tales in groups in an onco-haematological hospital. Within a quali-quantitative framework we performed a thematic analysis of elementary context, cluster analysis, on the fairy tales considered as a unique narrative corpus of the thought of the group. RESULTS: The analysis shows four thematic clusters: fantasy as search for a meaning, 29.71%, the group as a space for illusions, 27.90%, the illness as a family problem, 25.72%, anchoring reality, 16.67%. The results highlighted three main carriers of sense: the representation of illness/the relational world/the representation of the institution. CONCLUSIONS: The use of invented-fairy-tales groups allowed the onco-haematological children to tell and share the experience of illness through a different way, which let them express symbolically their pain. The invented fairy tale in groups becomes a mediator of psychic processes which offer new solutions while improving interpersonal relationships/communication between the participants in group.

Validación concurrente para Chile de un cuestionario multidimensional de adaptación a la enfermedad para pacientes de una unidad de hematología intensiva / Concurrent validation a multidimensional adaptation questionnaire for Illness to patients in a intensive hematology unit in Chile

El objetivo de esta investigación fue adaptar y validar para Chile el Cuestionario Multidimensional de Adaptación a la Enfermedad para Pacientes Onco-hematológicos (CMAE-OH) en la Unidad de Hematología Intensiva de un hospital general de Santiago de Chile. Este instrumento diseñado en España, es semiestructurado, consta de ítems cualitativos y cuantitativos, que proporcionan información para intervención preventiva, evalúan bienestar psicológico y adaptación a la enfermedad en los pacientes hemato-oncológicos. La metodología de trabajo fue la validación de contenido realizada por un panel de expertos. La muestra total fue de 42 pacientes hospitalizados, con 62 por ciento de hombres y 38 por ciento de mujeres, entre 15 y 56 años de edad. Se comparan los índices de una muestra de Santiago de Chile con una muestra de Madrid a través de análisis factoriales e índice de confiabilidad. Tanto en Chile como en España la variable información sobre la enfermedad, que mide el nivel de conocimiento del diagnóstico, tratamiento y pronóstico, es la variable que presenta más alta correlación con la adaptación a la enfermedad...

The purpose of this research was to adapt and validate the “Cuestionario Multidimensional de Adaptación a la Enfermedad para Pacientes Onco hematológicos (CMAE-OH)” in the Intensive Hematology Unit of a general hospital in Santiago de Chile. This instrument was designed in Spain as a semi-structured format with qualitative and quantitative items. These give information for preventive interventions, evaluate subjective well-being, and measure adaptation to hemato-oncologic diseases. The methodology consisted in content validation using an expert panel. The total simple were 42 inpatients, 62 percent males and 38 percent females, with ages between 15 and 56 years. The Santiago de Chile results are compared with a Madrid sample through a factor analysis. In Chile and in Spain the variable information of the disease, which measures the level of knowledge of the diagnosis, treatment and prognosis, is the variable that has the highest correlation with adaptation to the disease...