Experiences of families with children and adolescents after completing a cancer treatment: support for the nursing care

Ortíz, Mario A.; Lima, Regina Aparecida Garcia de

doi:10.1590/s0104-11692007000300008

Cited by 18 publications

(29 citation statements)

References 8 publications

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“…In general, parents confronting the child's illness and the many difficult moments they encounter, eventually require medical and psychological assistance, among others. (4,5) Although caregivers recognize the importance of participation during treatment, they may exhibit caregiver burden as a consequence of the care provided consistently to children / adolescents, which is still poorly studied and understood. The impact experienced by caregivers of children with other chronic diseases has been investigated, and some studies have related the existence of caregiver burden to the impairment of quality of life (QOL) of caregivers, (6)(7)(8) because the requirements deriving from the care may lead parents to neglect their own health.…”

Section: Introductionmentioning

confidence: 99%

Sobrecarga e qualidade de vida de cuidadores de criança e adolescentes com câncer em tratamento quimioterápico

et al. 2012

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Objective: To evaluate the burden of care and quality of life (QOL) of caregivers of children/adolescents with cancer during chemotherapy treatment, and to relate them to each other and sociodemographic data. Methods: A transversal study, with 160 caregivers. We collected sociodemographic data, burden of care using the Caregiver Burden Scale and QOL using the SF-36. Results: 88.7% of caregivers were mothers, with the mean age of 34.9 years, overall burden score 2.09 ± 0.04 and the SF-36 scores most compromised were: emotional aspects, vitality, mental health and physical aspects. The regression model accounted for 36.0% of the burden. Conclusion: The QOL of caregivers and burden of care experienced showed compromise in various domains, and these alterations may affect the quality of care provided to children and adolescents, and lead to imbalances in their own health. Keywords: Caregivers; Quality of life; Neoplasms/drug therapy; Child care; Adolescent RESUMOObjetivo: Avaliar a sobrecarga de cuidado e a qualidade de vida (QV) de cuidadores de crianças/adolescentes com câncer durante tratamento quimioterápico e relacioná-las entre si e aos dados sociodemográficos. Métodos: Estudo transversal, com 160 cuidadores. Foram coletados dados sociodemográficos, sobrecarga de cuidado, conforme "Caregiver Burden Scale" e de QV pelo SF-36. Resultados: 88,7% dos cuidadores eram mães, idade média 34,9 anos, escore geral de sobrecarga 2,09±0,04 e escores do SF-36 mais comprometidos: aspectos emocionais, vitalidade, saúde mental e aspectos físicos. O modelo de regressão respondeu 36,0% da sobrecarga. Conclusão: A QV dos cuidadores e sobrecarga de cuidados vivenciada mostram-se comprometidas em diversos domínios, e essas alterações podem afetar a qualidade da assistência prestada às crianças e adolescentes e propiciar desajustes na própria saúde. Descritores: Cuidadores; Qualidade de vida; Neoplasias/quimioterapia; Cuidado da criança; Adolescente RESUMEN Objetivo: Evaluar la sobrecarga del cuidado y la calidad de vida (CV) de cuidadores de niños/adolescentes con cáncer durante el tratamiento quimioterápico y relacionarlas entre sí y a los datos sociodemográficos. Métodos: Estudio transversal, realizado con 160 cuidadores. Fueron recolectados datos sociodemográficos, sobrecarga de cuidado, conforme "Caregiver Burden Scale" y de CV por el SF-36. Resultados: 88,7% de los cuidadores eran madres, edad promedio 34,9 años, scores general de sobrecarga 2,09±0,04 y scores del SF-36 más comprometidos: aspectos emocionales, vitalidad, salud mental y aspectos físicos. El modelo de regresión respondió a 36,0% de la sobrecarga. Conclusión: La CV de los cuidadores y sobrecarga de cuidados vivenciada se muestran comprometidas en diversos dominios, y esas alteraciones pueden afectar a la calidad de la asistencia prestada a los niños y adolescentes, propiciando desajustes en la propia salud. Descriptores: Cuidadores; Calidad de vida; Neoplasias/quimioterapia; Cuidado del niño; Adolescente

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Section: Introductionmentioning

confidence: 99%

Sobrecarga e qualidade de vida de cuidadores de criança e adolescentes com câncer em tratamento quimioterápico

et al. 2012

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“…It is understood that such a stance is understandable, due to the idea that talking can somehow mean re-living the suffering constructed in the history of the disease. The existence of deep pain is therefore highlighted, which could not even be signifi ed, possibly due to the psychological impact that the knowledge of the disease causes, generating experiences of despair, fear, denial, guilt and anger (Ortiz & Lima, 2007;Silva et al, 2009;Tarr & Pickler, 1999). The posture of denial of the parents regarding the disease is also demonstrated in the attempt to hide the diagnosis from the family and the child him/herself.…”

Section: To Deny: Between Wanting and Not Wanting To Talkmentioning

confidence: 99%

“…Cancer is a disease that brings with it devastating consequences, since despite the cure, a recurrence of the disease is possible (Misko & Bousso, 2007;Ortiz & Lima, 2007). Thus, the concept of a cure in oncology can have a sense of uncertainty, with the term survivor being used.…”

Section: About the Future: The Fear And Hope For Healthmentioning

confidence: 99%

“…The situation of illness is permeated by high expectations and uncertainties, as the possibility of a recurrence is always present (Arrais & Araújo, 1999;Misko & Bousso, 2007;Ortiz & Lima, 2007). For some, plans for the future can cease to exist, a view where the emphasis is on coping with the disease in the present (Beck & Lopes, 2007).…”

mentioning

confidence: 99%

“…From the diagnosis of the disease, there are reports of the experience of despair, fear, denial, guilt, and anger (Ortiz & Lima, 2007;Silva et al, 2009;Tarr & Pickler, 1999). In this context, Kübler-Ross (1926 defi ned fi ve emotional stages, whereby the patient and the family can move to become aware of the severity of the disease and face the struggle for a healthy body: denial, anger, bargaining, depression, and acceptance.…”

mentioning

confidence: 99%

See 2 more Smart Citations

Childhood Cancer: Meanings Attributed to the Disease by Parent Caregivers

Quintana

Wottrich

Camargo

et al. 2013

Paidéia (Ribeirão Preto)

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This study aimed to comprehend the meanings that parents/caregivers of children and adolescents diagnosed with cancer attribute to their child’s disease. It is a qualitative, exploratory/descriptive study. Data were collected through group discussions and individual interviews with the parents/caregivers of children/adolescents and categorized using content analysis. The impressions of the researchers were recorded in a field diary, contributing to the data analysis. The results indicate that the disease and treatment involve periods of psychological suffering that affect the family structure. Cancer was reported as a real enemy to be fought through coping or avoidance, which generates expectations about the future and causes feelings of fear, as well as hope. It was concluded that the childhood cancer causes repercussions in the family relationships, the recognition of which can contribute to both the preparation of professional teams who work with this population, as well as the public health policies developed.

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Parental adjustment to the completion of their child's cancer treatment

Wakefield

McLoone

Butow

et al. 2010

Pediatric Blood & Cancer

155

194

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Childhood cancer treatment completion is a significant milestone. However, coming off treatment may be a time of psychological vulnerability for parents. This review assesses published research (1979-2009) on the psychosocial impact of treatment completion on parents. Fifteen articles met all inclusion criteria and demonstrated that while they celebrate treatment completion, parents (particularly mothers) can experience significant distress, including fear of recurrence, fatigue, and loneliness. Distress appears to ease with time, possibly as the perceived risk of relapse declines. Continued psychosocial support specifically targeting parents' risk perceptions, physical and emotional fatigue, social isolation, and parenting concerns post-treatment is warranted.

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Experiences of families with children and adolescents after completing a cancer treatment: support for the nursing care

Cited by 18 publications

References 8 publications

Sobrecarga e qualidade de vida de cuidadores de criança e adolescentes com câncer em tratamento quimioterápico

Sobrecarga e qualidade de vida de cuidadores de criança e adolescentes com câncer em tratamento quimioterápico

Childhood Cancer: Meanings Attributed to the Disease by Parent Caregivers

Parental adjustment to the completion of their child's cancer treatment

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