Caregivers reflecting on the early days of childhood cancer

Cox, Terrance

doi:10.1111/ecc.12499

Cited by 27 publications

(42 citation statements)

References 23 publications

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“…Caregivers in this study reported the complex care for their child became routine and normal for them. These findings are consistent with existing literature in caregivers of children with cancer found that the process of becoming a caregiver (mothers and fathers; n = 38) of a child with cancer included new definitions of normality and approaches to the child's care (Cox, ). Cox () described caregivers gained knowledge and confidence in their child's care and adopted nursing roles by monitoring treatment side effects and examining medical results, which were evident in our findings.…”

Section: Discussionsupporting

confidence: 90%

“…These findings are consistent with existing literature in caregivers of children with cancer found that the process of becoming a caregiver (mothers and fathers; n = 38) of a child with cancer included new definitions of normality and approaches to the child's care (Cox, ). Cox () described caregivers gained knowledge and confidence in their child's care and adopted nursing roles by monitoring treatment side effects and examining medical results, which were evident in our findings. Similarly, caregivers (mothers and fathers; n = 48) of children who had solid organ transplant described care as becoming routine and being confident in their child's care (Lerret, Johnson, & Haglund, ).…”

Section: Discussionsupporting

confidence: 90%

“…Mothers ( n = 17) of children with complex needs described pre‐emptive caregiving as being proactive and prepared for any care that their child might need (Nicholl & Begley, ). A study in caregivers of children with cancer also reported caregivers partnered with health care providers to contribute to their child's well‐being and advocated for their child's care (Cox, ). In line with similar populations, caregivers of children who require medical technology proactively sought information about their child's care so that they had as much information as possible to provide the best care for their child.…”

Section: Discussionmentioning

confidence: 99%

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Caregivers experiences in symptom management for their children who require medical technology at home

Spratling

Lee

2019

Specialist Pediatric Nursing

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Purpose: The purpose of this study is to explore the daily care experiences of caregivers of children who require medical technology. Specific aims were to gain an understanding of their perceptions of (a) how caregivers manage symptoms for their children who require medical technology at home, (b) why the caregivers seek emergency department (ED) and hospital care, and (c) what the caregivers need to manage their child's symptoms at home. The research question was asked, what are the education, skills, and support caregivers report needing to effectively manage their child's symptoms and prevent avoidable ED visits and hospitalizations? Design and Methods: Interpretive phenomenology was used to examine how caregivers manage their children's symptoms and technology at home, and their reasons for seeking emergency care through ED visits and/or hospitalizations. Selfidentified nine primary caregivers of children who required medical technology participated in this study. Semi-structured interviews explored the caregiver's perceptions of the child's needs for symptom and technology management, and needs for education, skills, and support.Results: Three themes were found in the participant interviews. Theme 1 was Knowing my child's normal and having confidence with daily caregiving. Theme 1 included a subtheme of Caregivers are proactive and advocates for their child. Theme 2 was This is much different from my child's normal…this is an emergency. Theme 3 was We cannot sleep and we are exhausted. In regard to education, skills, and support, caregivers described their preparation and training in the hospital before their child's discharge from the hospital with a tracheostomy and feeding tube, but lacked knowledge of new situations and symptoms at home with medical technology.Practice Implications: This study confirms the need for interventions for these caregivers to enhance education, skills, and support caregivers need to effectively manage their child's symptoms and prevent avoidable ED visits and hospitalizations, specifically enhancement of care at home. More education for caregivers of children who require medical technology is recommended to facilitate quality care for the child; few interventions have addressed care for these children, and none address education and management of symptoms and medical technology. K E Y W O R D S caregivers, children, home care, medical technology, phenomenology, symptom management

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Section: Discussionsupporting

confidence: 90%

Section: Discussionsupporting

confidence: 90%

Section: Discussionmentioning

confidence: 99%

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Caregivers experiences in symptom management for their children who require medical technology at home

Spratling

Lee

2019

Specialist Pediatric Nursing

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“…Similar results were found in Cox's study (13) , which showed that both parents are impacted by the diagnosis of their children's cancer and both feel like they lost control of the situation and are powerless when faced with the disease, which leads them to seek normality and develop new ways of caring for the child.…”

Section: Discussionsupporting

confidence: 82%

“…Physical, social and emotional overload repercussions are part of the experience of family members who face childhood cancer, especially the father, who deals with his masculine roles in the family and in society (11) . Qualitative studies have been conducted to investigate the experience of the father and other family members with the child or adolescent's cancer diagnosis (9,(12)(13)(14) . Given the above and the importance of further investigate fathers' experience of care, the present study is proposed with the purpose of synthesizing and interpreting results and conclusions of qualitative research addressing the father's experience in the care of the child with cancer.…”

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confidence: 99%

Care provided by the father to the child with cancer under the influence of masculinities: qualitative meta-synthesis

et al. 2018

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Approval: 03-18-2017 ABSTRACT Objective: To synthesize and interpret fi ndings and conclusions of qualitative research addressing the experience of the father in the care of the child with cancer. Method: Meta-synthesis of 16 qualitative studies from six databases, analyzed through taxonomic analysis. Results: Child and adolescent cancer have several repercussions on the daily life of the father, especially related to the stigma around the disease, the fear of the unknown and the social and family role. Faced with the illness and the need to care for the child, the father seeks to recover normality in the family and transitions between hegemonic masculine behaviors and practices culturally recognized as female. Final Considerations: The complex experience of the father, infl uenced by masculinities, was evidenced. The limitations regard the restricted understanding of the contextual specifi cities of the experiences, due to the limited characteristics of the parents and children described in the studies. The knowledge produced is useful to promote involvement of fathers in the care of the child, as well as to strengthen and assist him in this task. Descriptors: Fathers; Pediatric Nursing; Qualitative Research; Cancer; Family Nursing. RESUMO Objetivo: Sintetizar e interpretar resultados e conclusões de pesquisas qualitativas sobre a experiência do pai no cuidado do fi lho com câncer. Método: Metassíntese de 16 estudos qualitativos capturados em seis bases de dados e analisados por meio da análise taxonômica. Resultados: O câncer infantojuvenil impõe inúmeras repercussões ao cotidiano do pai, sobretudo relacionadas ao estigma da doença, ao medo do desconhecido e ao papel social e familiar. Diante da doença e da necessidade de cuidado do fi lho, o pai busca resgatar a normalidade na família e transita entre comportamentos hegemonicamente masculinizantes e práticas reconhecidas culturalmente como femininas. Considerações fi nais: Evidenciou-se a complexa experiência paterna infl uenciada pelas masculinidades. As limitações referem-se à restrita compreensão das especifi cidades contextuais das experiências, pelas escassas características dos pais e fi lhos descritas nos estudos. O conhecimento produzido revela-se útil para promover o engajamento paterno no cuidado do fi lho, bem como fortalecê-lo e auxiliá-lo nesta tarefa. Descritores: Pai; Enfermagem Pediátrica; Pesquisa Qualitativa; Neoplasia; Enfermagem Familiar. RESUMENObjetivo: Sintetizar e interpretar resultados y conclusiones de investigaciones cualitativas sobre la experiencia del padre en el cuidado del hijo con cáncer. Método: Metasíntesis de 16 estudios cualitativos recogidos en seis bases de datos y examinados mediante análisis taxonómica. Resultados: El cáncer infantojuvenil repercute considerablemente en la vida cotidiana del padre, sobre todo con relación al estigma de la enfermedad, al miedo a lo desconocido y al papel social y familiar. Ante la enfermedad y la necesidad de Care provided by the father to the child with cancer under the infl uence of m...

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Caring for a child with retinoblastoma: Experience of Ethiopian parents

Sherief

Girma

et al. 2022

Pediatric Blood & Cancer

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Objective: This study explored the lived experience of parents of children with retinoblastoma. Design and method:A phenomenological qualitative study design was used, and a purposive sampling technique to recruit parents of children with retinoblastoma.Semi-structured interviews were conducted to document the lived experience of participants, who were asked to narrate their experiences caring for a child with retinoblastoma, thinking back to the day they learned about their child's condition, as well as their thoughts about the future. The interviews were conducted in Amharic and Oromo language, and audio recordings were transcribed and translated to English. Data were analyzed using thematic analysis. Results: Thirteen parents (seven mothers, six fathers) participated in the study. Collectively, the children of the participants represented all the stages of the retinoblastoma journey (i.e., diagnosis, treatment, remission, and recurrence). Five major themes emerged from the thematic data analysis: (a) reactions when learning the child's condition; (b) receiving health care; (c) costs of caregiving; (d) support; and (e) uncertainties. Conclusion:The lived experiences of parents of children with retinoblastoma revealed a significant mental health and psychosocial burden. The sources of mental distress were found to be complex and varied. Holistic care for retinoblastoma should include programs that address the biopsychosocial needs of caregivers.

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Caregivers reflecting on the early days of childhood cancer

Cited by 27 publications

References 23 publications

Caregivers experiences in symptom management for their children who require medical technology at home

Caregivers experiences in symptom management for their children who require medical technology at home

Care provided by the father to the child with cancer under the influence of masculinities: qualitative meta-synthesis

Caring for a child with retinoblastoma: Experience of Ethiopian parents

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