Impact of a structured educational programme for caregivers of children with cancer on parental knowledge of the disease and paediatric clinical outcomes during the first year of treatment

Maza, Verónica De la; Manriquez, Macarena; Castro, Magdalena; Viveros, Paola; Fernández, María E.; Vogel, Evelyn; Pena, Érica Dumont; Santolaya, Marı́a Elena; Villarroel, Milena; Torres, Juan Pablo

doi:10.1111/ecc.13294

Cited by 11 publications

(12 citation statements)

References 16 publications

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“…Beyond meeting patients’ and parents’ stated needs, and supporting decision‐making, 33 an interactive resource may help improve clinical outcomes. A structured caregiver educational program for parents of children with cancer in Chile improved parent knowledge, and was also associated with decreased rates of central line infections and fewer visits to the emergency department 34 . Similarly, suboptimal adherence to oral 6‐mercaptopurine throughout ALL therapy is a risk factor for relapse, and strategies to increase adherence that combine education and automated reminders have been tried 35,36 .…”

Section: Discussionmentioning

confidence: 99%

“…A structured caregiver educational program for parents of children with cancer in Chile improved parent knowledge, and was also associated with decreased rates of central line infections and fewer visits to the emergency department. 34 Similarly, suboptimal adherence to oral 6-mercaptopurine throughout ALL therapy is a risk factor for relapse, and strategies to increase adherence that combine education and automated reminders have been tried. 35,36 Some of these existing approaches could be integrated into the eHealth resource we are currently developing.…”

Section: Discussionmentioning

confidence: 99%

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“There's no playbook for when your kid has cancer”: Desired elements of an electronic resource to support pediatric cancer communication

Greenzang

Revette

Schlegel

et al. 2023

Pediatric Blood & Cancer

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Introduction: Acute lymphoblastic leukemia (ALL), the most common childhood malignancy, has a relatively favorable long-term prognosis. Yet the complexity of treatment and the emotionality of the diagnosis leave families feeling unprepared for many aspects of therapy. This qualitative study aimed to identify desired elements and format of a communication resource to support patients and families facing a diagnosis of ALL. Methods: Semi-structured interviews of 12 parents of children receiving ALL treatment, 10 parents of survivors of ALL, and eight adolescent and young adult (AYA) survivors of ALL were conducted between February and June 2021. The interviews focused on communication experiences throughout treatment and identified domains to be addressed in a resource in development. Results: All participants supported the development of an interactive, electronic health (eHealth) resource to help navigate ALL treatment. They felt a website would be helpful in addressing information gaps and mitigating pervasive feelings of overwhelm. Participants specifically sought: (a) information resources to address feelings of cognitive overload; (b) practical tips to help navigate logistical challenges; (c) clear depictions of treatment choices and trajectories to facilitate decision-making; and (d) additional psychosocial resources and support. Two overarching themes that families felt should be interwoven throughout the eHealth resource were connections with other patients/families and extra support at transitions between phases of treatment. Conclusions: A new diagnosis of ALL and its treatment are extremely overwhelming. Patients and families unanimously supported an eHealth resource to provide additional information and connect them with emotional support, starting at diagnosis and extending throughout treatment.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“There's no playbook for when your kid has cancer”: Desired elements of an electronic resource to support pediatric cancer communication

Greenzang

Revette

Schlegel

et al. 2023

Pediatric Blood & Cancer

View full text Add to dashboard Cite

show abstract

“…These have emphasized the importance of enhancing the parents’ self‐sufficiency by combining different information formats; for example, oral information should be accompanied by written information and a follow‐up contact by a nurse. Movie clips can also be used to educate parents on complicated topics 1,5,23,25–28 …”

Section: Discussionmentioning

confidence: 99%

“…Movie clips can also be used to educate parents on complicated topics. 1,5,23,[25][26][27][28] Parents from non-Swedish-speaking backgrounds expressed their wish to be provided with information in their mother tongue so as to be able to fully understand and process the information. It is well known that parents from different ethical backgrounds are often underinformed by HCPs and that both language ability and culture can be barriers to understanding the provided information.…”

Section: Discussionmentioning

confidence: 99%

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Parents' experiences of handling oral anticancer drugs at home: ‘It all falls on me …’

Edelbi

Eksborg

Kreicbergs

et al. 2022

Evaluation Clinical Practice

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Aim The aim of this study was to describe the experiences of parents handling oral anticancer drugs in a home setting. Methods Parents of children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis. Results We found the following categories and subcategories: parents’ views on the provided information—lack of, too little or contradictory information, and parents’ preferences for information delivery; safety over time; correct drug dose; and drug administration. As time passed, most parents adapted to their child's illness, felt safer and found it easier to take in and process any given information. Parents preferred information in different formats (written, movie clips and orally) and in their mother tongue. Many parents were aware of the importance of giving an accurate dose to their child and described the process of drug administration as overwhelming. Conclusion Parents need to be provided with accurate, timely, nonconflicting and repeated information—in different forms and in their mother tongue—on how to handle oral anticancer drugs at home.

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Experiences of caregivers of children with cancer in Malawi: A qualitative study

Phiri,

Li,

Phiri

et al. 2024

Cancer Medicine

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BackgroundStudies have shown that caregivers of children with cancer experience challenges when caring for their children. To date, no studies have examined the experience of caregivers of children with cancer in Malawi, a low‐income country in sub‐Saharan Africa. Hence, this study aimed to explore the experiences of caregivers of Malawian children receiving cancer treatment.MethodsThis explorative qualitative study used semi‐structured interviews to collect data from 22 caregivers of children receiving cancer treatment. The data were analysed using qualitative content analysis.ResultsFive themes emerged from the QCA. The caregivers perceived their children's cancer as a burden, a form of psychological torture and a disruptor of family routines and social lifestyles. They also reported self‐isolation due to the stigma that they faced in the course of caring for their children and a need for informational, psychosocial, spiritual and financial support.ConclusionCaregivers of Malawian children with cancer experience physical and psychosocial challenges as they are caring for their children with cancer. Developing appropriate interventions would enable nurses to offer optimal support to these caregivers in dealing with these challenges and meeting their needs effectively.

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Impact of a structured educational programme for caregivers of children with cancer on parental knowledge of the disease and paediatric clinical outcomes during the first year of treatment

Cited by 11 publications

References 16 publications

“There's no playbook for when your kid has cancer”: Desired elements of an electronic resource to support pediatric cancer communication

“There's no playbook for when your kid has cancer”: Desired elements of an electronic resource to support pediatric cancer communication

Parents' experiences of handling oral anticancer drugs at home: ‘It all falls on me …’

Experiences of caregivers of children with cancer in Malawi: A qualitative study

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