Cancer disclosure-account from a pediatric oncology ward in Egypt

Malla, Hanan El; Steineck, Gunnar; Helm, Nathalie Ylitalo; Wilderäng, Ulrica; Elborai, Yasser; Elshami, Mohammad; Kreicbergs, Ulrika

doi:10.1002/pon.4207

Cited by 10 publications

(8 citation statements)

References 21 publications

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“…A majority of the studies (60%) addressed challenges around direct or indirect diagnostic disclosure to children, including differences in provider‐caregiver and provider‐patient communication 21,24,25,35,53 and disclosure practice variation based on child age 31,38 . Most studies focused on caregiver perceptions regarding the involvement of their child in communication 35,36,47,53 .…”

Section: Resultsmentioning

confidence: 99%

Pediatric cancer communication in low‐ and middle‐income countries: A scoping review

Graetz

Garza

Rodríguez‐Galindo

et al. 2020

Cancer

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The burden of global childhood cancer lies in low‐ and middle‐income countries (LMICs). Communication is essential to pediatric cancer care, and the National Cancer Institute (NCI) has defined 6 functions of communication between patients, family members, and providers, including 1) fostering healing relationships, 2) responding to emotions, 3) exchanging information, 4) making decisions, 5) managing uncertainty, and 6) enabling self‐management. Nevertheless, communication needs and practices in LMICs remain incompletely understood. For this review, the Web of Science, Scopus, PubMed, and Turning Research Into Practice databases were searched according to the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis Extension for Scoping Reviews. Searching identified 2988 articles, with 11 added through snowballing. Forty articles met the inclusion criteria. Two reviewers extracted data on study characteristics, communication functions, enablers, barriers, and additional major themes. This review included work from 17 countries. Most studies (85%) used qualitative methodology; the number of participants ranged from 7 to 304. All 6 of the NCI‐defined communication functions were identified in included studies, with rates ranging from 100% of studies for information exchange to 28% of studies for decision making. Communication barriers included cancer misconceptions, stigma, and hierarchy between parents and providers. Provider training and community education facilitated communication. Additional themes included disclosure to children, family dynamics, and the multidisciplinary health care team. In conclusion, all 6 of the communication functions defined by the NCI were applied by pediatric cancer researchers in LMICs. Additional barriers, enablers, and communication themes noted in LMICs deserve further exploration, and a relative paucity of research in comparison with high‐income countries highlights the need for further work.

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Section: Resultsmentioning

confidence: 99%

Pediatric cancer communication in low‐ and middle‐income countries: A scoping review

Graetz

Garza

Rodríguez‐Galindo

et al. 2020

Cancer

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“…This explains, to some extent, why the caregivers exhibit a horrendous feeling when they receive the diagnosis which could be comparable to receiving a death sentence of one’s child. This phenomenon is addressed in a study by El Malla et al which found the caregivers refrained from, and deliberately avoided, using the word cancer [ 5 ]. It is also addressed in several other studies on adult cancer patients in this region such as the study in Saudi Arabia where family members desired more information but clearly discouraged disclosure and information provision to the adult patients [ 14 , 15 , 16 , 17 , 18 ] or Pakistan where similar patterns were found among adult cancer patients and their family members [ 19 ].…”

Section: Discussionmentioning

confidence: 99%

“…Based on this study, a large-scale prospective study was conducted in 2008 and was followed up in 2013 [ 3 , 4 , 5 , 6 ] including two comprehensive, structured interview questionnaires with 304 caregivers to newly diagnosed children with cancer starting their first chemotherapy treatment, followed again by the third chemotherapy treatment, and finally surveyed five years later as a mean of a five-years survival rate follow-up [ 6 ]. The study was conducted at the Children’s Cancer Hospital in Egypt (CCHE), the largest pediatric oncology hospital in the region.…”

Section: Methodsmentioning

confidence: 99%

“…The medical efforts are visible, yet, very little is known of the psychosocial experiences of the caregivers who carry an extraordinary burden and play a significant role for the child. Thus, recognizing the thoughts, needs, and concerns of the caregivers is very important as it reflects on the child’s emotional and physical well-being, which affects adherence to medication, disclosure of information, and even survival [ 3 , 4 , 5 , 6 ]. To our knowledge, there are very few published studies in international journals addressing the concerns of caregivers of sick children with cancer in Egypt.…”

Section: Introductionmentioning

confidence: 99%

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Having a Child Diagnosed with Cancer: Raising the Challenges Encountered by the Caregivers at the Pediatric Oncology Ward in Egypt

Malla

2017

Diseases

Self Cite

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Having a child diagnosed with a life-threatening illness, and undergoing a severe treatment regimen, is a massive challenge for many caregivers, not the least of who are those with low socioeconomic status and living in a society where deeply rooted cultural and societal misconceptions are immensely noticeable. The aim of the study is to raise the great concerns experienced by the caregivers at the pediatric oncology ward in Egypt. The study is comprised of 24 caregivers of children with cancer undergoing treatment at the inpatient ward. Semi-structured interviews and participant observations were used as a means of data collection. Numerous concerns are addressed in this study which are all related to fear of the illness and guilty feelings of having caused the child this illness. The fears and concerns addressed in this paper seem to obstruct the caregivers’ overall psychosocial wellbeing, which is known to have multiple effects on the child’s overall wellbeing. Thus, it is very important to take into consideration caregivers in the child’s cancer treatment.

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“…This explains why breaking the news to the child's family is an important step. 24 It is not surprising, then, that after their child's diagnosis, parents often reprogram their lives to adjust to the new situation and often begin to look for solutions-both inside or outside hospitals. Nurses may not be happy with pursuit of alternative therapies, 25 so they feel a moral duty, which goes beyond the scope of their job, to warn against practices that may pose a danger or harm.…”

Section: Nature Of Cancermentioning

confidence: 99%

Ethical Challenges of Pediatric Cancer Care: Interviews With Nurses in Saudi Arabia

2020

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Despite rapid and successful development in pediatric cancer treatment, many ethical challenges remain. These challenges have been, and continue to be, the subject of much research, but few qualitative studies have explored the views of nurses, especially in the Middle East. This study, therefore, seeks to fill a knowledge gap in this area and to better understand the concerns of nurses—particularly those in Saudi Arabia and the Middle East. Face-to-face, in-depth interviews were conducted with 17 male and female nurses working in pediatric units at 2 hospitals in Saudi Arabia to explore their views on the ethical challenges in caring for children with cancer. All interviews were recorded and transcribed, then line-by-line encoded, merged, and categorized into themes. Our results show that pediatric cancer is perceived as being “different” from other diseases, and from cancer in adults. Nurses are an integral part of the medical care team and are aware of the importance of their role, as well as the special relationships that they develop with the children. Consent is mandatory and necessary and can be signed by any parent. Assent is important when children become able to give it. Pediatric cancer is seen as a different disease by nurses for various reasons. Their roles and relationships with children and families pose many challenges. Though parental consent and child assent are essential, nurses’ collaboration is important for shared decision-making. Our study paves the way for broader studies to understand the concerns of nurses and other health-care providers about treating children with pediatric cancer.

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Cancer disclosure-account from a pediatric oncology ward in Egypt

Cited by 10 publications

References 21 publications

Pediatric cancer communication in low‐ and middle‐income countries: A scoping review

Pediatric cancer communication in low‐ and middle‐income countries: A scoping review

Having a Child Diagnosed with Cancer: Raising the Challenges Encountered by the Caregivers at the Pediatric Oncology Ward in Egypt

Ethical Challenges of Pediatric Cancer Care: Interviews With Nurses in Saudi Arabia

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