Parenting stress related to raising infants receiving treatment for retinoblastoma

Nagayoshi, Michie; Hirose, Taiko; Toju, Kyoko; Suzuki, Shigenobu; Okamitsu, Motoko; Omori, Takahiro; Kawamura, Aki; Takeo, Naoko

doi:10.1002/pon.4062

Cited by 6 publications

(8 citation statements)

References 6 publications

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“…Results of this study are somewhat in contrast with the qualitative reports previously published as well as a recent quantitative study from Japan, which suggested that parents of children with retinoblastoma experience elevated levels of stress around the time of their child's diagnosis. It may be that the PSI is not equipped to assess the particular stressors associated with the retinoblastoma diagnosis, and that illness‐specific measures might have been more appropriate .…”

Section: Discussioncontrasting

confidence: 99%

A longitudinal investigation of parenting stress in caregivers of children with retinoblastoma

Willard

Qaddoumi

Zhang

et al. 2016

Pediatr Blood Cancer

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Background Retinoblastoma is typically diagnosed in young children and may present unique parenting challenges. Qualitative research suggests that parents experience distress related to the initial diagnosis and treatment that subsequently resolves. The objectives were to systematically assess parenting stress over time in parents of young children with retinoblastoma and to examine associations between parenting stress and child outcomes. Procedures Parents of children with retinoblastoma completed the Parenting Stress Index (PSI) during serial psychological assessments scheduled based on the child’s age (age 6 months to 5 years). Caregivers of 92 patients (85.9% mothers) completed the assessments. Child outcomes included developmental functioning and parent-reported adaptive functioning. Results At baseline and age 5, all subscales on the PSI were within normal limits, and most were significantly below normative means (i.e., demonstrating low levels of stress). All domains remained relatively stable over time. Associations between parenting stress and child outcomes were much stronger at age 5 than at baseline. Child-directed parenting stress was a small but significant contributor to declines in child functioning over time. Conclusions Parents of children with retinoblastoma report normal levels of parenting stress while their children are young. However, baseline parenting stress appears to contribute to changes in child functioning over time. Future studies should assess illness-related aspects of adjustment to further understand the parenting experience of young children with cancer and/or having a visually-impaired child.

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Section: Discussioncontrasting

confidence: 99%

A longitudinal investigation of parenting stress in caregivers of children with retinoblastoma

Willard

Qaddoumi

Zhang

et al. 2016

Pediatr Blood Cancer

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“…In case the survivor of hereditary retinoblastoma is planning for a baby or is pregnant, creating an atmosphere for open dialog, and asking the right questions to probe for any parental concern regarding screening may be especially important to elicit participation in early detection of retinoblastoma. [40]…”

Section: Special Issuesmentioning

confidence: 99%

“…[40] The oncology nurse can provide educational and psychological support to alleviate it, which is especially important when a neonatal retinoblastoma has been diagnosed. Parenting stress is more intense if the child has visual impairment from the tumor.…”

Section: Special Issuesmentioning

confidence: 99%

“…Parenting stress is more intense if the child has visual impairment from the tumor. [40] This is an excellent reason to pursue prompt screening and early treatment when the time of delivery of a neonate at risk is approaching, to minimize chances of poor vision. Furthermore, it is useful for the oncology nurse to familiarize oneself with any community group and other available outside resources so as to know where to refer parents when they need additional information and support, especially is the child has become visually impaired.…”

Section: Special Issuesmentioning

confidence: 99%

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Neonatal retinoblastoma

Kivelä

Hadjistilianou

2017

Asia-Pacific Journal of Oncology Nursing

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From 7% to 10% of all retinoblastomas and from 44% to 71% of familial retinoblastomas in developed countries are diagnosed in the neonatal period, usually through pre- or post-natal screening prompted by a positive family history and sometimes serendipitously during screening for retinopathy of prematurity or other reasons. In developing countries, neonatal diagnosis of retinoblastoma has been less common. Neonatal retinoblastoma generally develops from a germline mutation of RB1, the retinoblastoma gene, even when the family history is negative and is thus usually hereditary. At least one-half of infants with neonatal retinoblastoma have unilateral tumors when the diagnosis is made, typically the International Intraocular Retinoblastoma Classification (Murphree) Group B or higher, but most germline mutation carriers will progress to bilateral involvement, typically Group A in the fellow eye. Neonatal leukokoria usually leads to the diagnosis in children without a family history of retinoblastoma, and a Group C tumor or higher is typical in the more advanced involved eye. Almost all infants with neonatal retinoblastoma have at least one eye with a tumor in proximity to the foveola, but the macula of the fellow eye is frequently spared. Consequently, loss of reading vision from both eyes is exceptional. A primary ectopic intracranial neuroblastic tumor known as trilateral retinoblastoma is no more common after neonatal than other retinoblastoma. For many reasons, neonatal retinoblastoma may be a challenge to eradicate, and the early age at diagnosis and relatively small tumors do not guarantee the preservation of both eyes of every involved child. Oncology nurses can be instrumental in contributing to better outcomes by ensuring that hereditary retinoblastoma survivors receive genetic counseling, by referring families of survivors to early screening programs when they are planning for a baby, and by providing psychological and practical support for parents when neonatal retinoblastoma has been diagnosed.

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“…Interventions that leads to long-term improvement in biomarkers of neuroplasticity such as brain derived neurotrophic factor (BDNF), dehydroepiandrosterone sulphate (DHEAS), sirtuin1, cortisol and Interleukin-6 (IL-6) are essential for healthy individuals as well as patients with neuropsychiatric ailments [20,24,25]. Very few studies in the literature have focussed on the psychological stress in the parents of children with retinoblastoma [14,[26][27][28][29]. In a developing country like India where the incidence of retinoblastoma is quite high (6-10% of all childhood cancers) as compared to developed nations (incidence being 2.5-4% of all childhood cancers) and advanced form of retinoblastoma contributes to nearly 35-40% of all the cases, no studies have reported the psychosomatic illness in the parents' of retinoblastoma children in the Indian scenario [30].…”

Section: Introductionmentioning

confidence: 99%

Impact of yoga based lifestyle intervention on psychological stress and quality of life in the parents of children with retinoblastoma

Bisht

Chawla

Tolahunase

et al. 2019

Annals of Neurosciences

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Background: Childhood cancers are associated with a psychological burden to the parents and hence, decline their mental and physical health and overall quality of life. Purpose: The purpose of the present study is to investigate the impact of 12-weeks yoga based lifestyle intervention on psychological stress and quality of life in the parents of children affected with retinoblastoma. Method: Single arm prospective clinical trial conducted from

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Parenting stress related to raising infants receiving treatment for retinoblastoma

Cited by 6 publications

References 6 publications

A longitudinal investigation of parenting stress in caregivers of children with retinoblastoma

A longitudinal investigation of parenting stress in caregivers of children with retinoblastoma

Neonatal retinoblastoma

Impact of yoga based lifestyle intervention on psychological stress and quality of life in the parents of children with retinoblastoma

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