Development and Adaptation of a Patient-Centered Communication Survey for Parents of Children With Cancer in Guatemala (original) (raw)
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Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala
JCO Global Oncology, 2021
PURPOSE Although > 90% of children with cancer live in low- and middle-income countries, little is known about communication priorities and experiences of families in these settings. We examined communication priorities and the quality of information exchange for Guatemalan caregivers of children with cancer during diagnostic communication. METHODS A cross-sectional survey including items used in pediatric communication studies from high-income countries and novel questions was verbally administered to 100 caregivers of children with cancer in Guatemala. RESULTS Guatemalan caregivers prioritized communication functions of exchanging information (99%), fostering healing relationships (98%), decision making (97%), enabling self-management (96%), and managing uncertainty (94%) over responding to emotions (66%) and cultural awareness (48%). Almost all caregivers wanted as many details as possible about their child's diagnosis and treatment (96%), likelihood of cure (99%), and lat...
BMJ Global Health, 2021
IntroductionFatalistic cancer beliefs may contribute to delayed diagnosis and poor outcomes, including treatment abandonment, for children with cancer. This study explored Guatemalan parents’ cancer beliefs during initial paediatric cancer communication, and the sociocultural and contextual factors that influence these beliefs.MethodsTwenty families of children with cancer were included in this study. We audio-recorded psychosocial conversations with psychologists and diagnostic conversations with oncologists, then conducted semi-structured interviews with parents to explore the evolution of their cancer beliefs. Audio-recordings were transcribed and translated from Spanish into English, with additional review in both languages by bilingual team members. All 60 transcripts were thematically analysed using a priori and novel codes.ResultsGuatemalan parents’ beliefs evolve as they learn about cancer through various sources. Sources of information external to the cancer centre, includi...
Journal of Global Oncology, 2019
PURPOSE The educational needs of parents at the time of their child’s cancer diagnosis are often unclear, and research on this topic in low- and middle-income countries is limited. This study evaluated the educational needs of families at major pediatric oncology centers in Central America and Mexico. METHODS A qualitative study involving 72 in-person interviews and 4 focus groups was conducted using a semistructured interview guide. Key informants included family members, physicians, nurses, psychosocial providers, foundation leadership, volunteers, and communication professionals. The study sites included pediatric oncology centers in El Salvador, Guatemala, Mexico, and Panama. NVivo was used for thematic analysis. RESULTS Across all sites, parents had common questions and educational needs. Questions from families focused on their child’s likelihood of dying from cancer and feelings of guilt that were based on their perception that they caused the disease. The origin of cancer, n...
Cancer, 2019
Background: High quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish if informational needs were met and identify opportunities for enhanced communication throughout cancer care. Methods: An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18, and their parents, at three cancer centers from 2011-2015. Statistical analysis of survey items about perceived communication, related associations, and patient/parent concordance, was performed. Results: A greater percentage of participants reported "a lot" of discussion about the physical impact of cancer (patients-58.1%(N=75), parents-69.8%(N=90)) compared to impact on quality of
Role of communication for pediatric cancer patients and their family
Indian Journal of Palliative Care, 2015
Background: Communication is a key component in medical practice. The area of pediatric palliative care is emotionally distressing for families and healthcare providers. Inadequate communication can increase the stress and lead to mistrust or miscommunication. Materials and Methods: Reviewing the literature on communication between physicians, patients, and their family; we identified several barriers to communication such as paternalism in medicine, inadequate training in communication skills, knowledge of the grieving process, special issues related to care of children, and cultural barriers. In order to fill the gap in area of cultural communication, a study questionnaire was administered to consecutive families of children receiving chemotherapy at a large, north Indian referral hospital to elicit parental views on communication. Results: Most parents had a protective attitude and favored collusion; however, appreciated truthfulness in prognostication and counseling by physicians; though parents expressed dissatisfaction on timing and lack of prior information by counseling team. Conclusion: Training programs in communication skills should teach doctors how to elicit patients' preferences for information. Systematic training programs with feedback can decrease physicians stress and burnout. More research for understanding a culturally appropriate communication framework is needed.
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Understanding the symptom and illness experience of children with advanced cancer facilitates quality care; yet, obtaining this understanding is complicated by the child’s developmental level and physical and psychological health factors that affect communication. The purpose of this study was to describe the symptom and illness experience of English- and Spanish-speaking children with advanced cancer as described by the child and parent. We conducted hermeneutic phenomenological, descriptive, and interpretive interviews with eligible children and parents. The interdisciplinary research team analyzed transcripts hermeneutically until consensus on theme labels was reached. Four themes and associated subthemes were identified from the interviews of the 10 child–parent dyads: 1. symptoms disrupt life (path to diagnosis, life is disrupted), 2. isolation (lack of understanding, family separations/relationships), 3. protection, and 4. death is not for children. Children and parents readil...
International Journal of Cancer Management, 2021
Objectives: Parents’ health literacy plays an important role in the proper management of symptoms and providing appropriate care for their children living with cancer. However, studies conducted on health literacy in Iranian culture is very limited. Therefore, this study will identify the health literacy needs of parents of children with cancer and will design a program for promoting their health literacy. Methods: This exploratory mixed-methods study, using qualitative-quantitative methods including 4 consecutive phases. In the first phase, the literature review will be carried out to conceptualize and determine the domains of health literacy. In the second phase, a qualitative study will be conducted to identify and determine the needs and strategies for promoting the health literacy of parents using deep semi-structured interviews. Participants will be selected by purposive and snowball sampling methods and data will be analyzed using the directed content analysis method. In the ...
Communication within families about advanced pediatric cancer: A qualitative study
Palliative and Supportive Care
Objectives This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage. Methods Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5–19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital. Interviews were completed at enrollment and asked how families share information and emotions about the child’s cancer as a family. Results Saturation was reached at 20 interviews for mothers, fathers, and youth. Analyses revealed 4 major themes: (A) parents managing cancer-related information based on child age/developmental stage and processi...
Parent and Child Preferences and Styles of Communication About Cancer Diagnoses and Treatment
Journal of Pediatric Oncology Nursing, 2019
Communication challenges frequently occur among families and health care providers of children with life-threatening conditions. These obstacles compound concerns related to children’s diagnoses and treatment, the family’s quality of life, and delivery of care. Developmentally appropriate and validated methods of addressing the communication preferences of families with chronically ill children are limited. This study used six focus groups to determine child and parent preferences and styles of communication centering on new diagnoses and changes in prognosis. Hypothetical situations were used to minimize feelings of self-consciousness among school-aged and adolescent participants. Qualitative analyses (interrater reliability 75%) of child and parent responses revealed 3 categories and 11 subcategories or themes. The category of Characteristics of Communication Exchange included (1) how to tell, (2) who should tell, (3) when to tell, (4) who should be included, and (5) what to tell....
Clinics in Mother and Child Health
Objective: This article describes a multidisciplinary intervention dedicated to patients with cancer and with underage children. It is well known that children of severely ill parents can develop emotional and behavioral problems. Different studies underline the efficacy of an open communication with children about the parent's illness to reduce distress but also the difficulties of parents to explain it to their children. The intervention, realized at San Gerardo Hospital, aims to inform or improve the children's knowledge of their parent's cancer, and to open communication about cancer inside the family. Methods: This intervention is characterized by the integration of a psychologist and a pediatric hematooncologist and by the direct involvement of children. After the fact-finding parents sessions, the pediatric hematooncologist and the psychologist meet children in specific settings, without parents present, to describe, with the support of images and metaphors, the parent's cancer and to understand children's needs or fears. In particular the pediatric hemato-oncologyst uses the flowered garden metaphor to explain to children the parent's illness and the treatments. Then the clinicians share the content of the previous sessions with parents. Counseling sessions to parents are also organized to increase the parental competence and the sharing of cancer-related concerns in the family. In addition, a specific questionnaire has been realized to evaluate children's psychological conditions after the intervention, family atmosphere and parents' satisfaction. Results: 36 families and 53 children have participated in the project up to now. The results of the questionnaires have underlined the absence of psychopathological symptoms in children, the presence of more collaboration in the families and more possibilities in the family to have an open communication about the cancer. In addition, most of the parents reported a considerable satisfaction with the intervention. Conclusion: Support for open communication in the family about cancer should be acknowledged as an important aspect of oncology care to reduce family stress.