Supportive Care Needs of Parents of Children With Cancer: Transition From Diagnosis to Treatment

Kerr, Laura; Harrison, Margaret B.; Medves, Jennifer; Tranmer, Joan

doi:10.1188/04.onf.e116-e126

Cited by 78 publications

(116 citation statements)

References 43 publications

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“…They reported that parents had information needs especially on fertility and posttreatment challenges and the desire to receive the information in a written format, like an information booklet. Other studies assessed needs in a broader way and found that information need was the most prevalent unmet need [19,20].…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life in young survivors of childhood cancer

et al. 2015

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PURPOSE Childhood cancer and its treatment may affect health-related quality of life (HRQoL) in childhood cancer survivors, but population-based studies in young survivors are scarce. We aimed to: (1) compare HRQoL between young survivors and population norms and (2) find factors that influence parent-reported HRQoL in survivors. METHODS As part of the Swiss Childhood Cancer Survivor Study, a questionnaire was mailed to parents of survivors aged 8-16 years, registered in the Swiss Childhood Cancer Registry, 5 years after diagnosis. We used the KIDSCREEN-27 instrument to compare self-and parent-reported HRQoL between survivors (N = 425) and standardized norms in the five dimensions of physical well-being, psychological well-being, autonomy, peers and school environment (mean = 50, SD = 10). We then used multivariable linear regressions to test the influence of socio-demographic and cancer-related factors on HRQoL. RESULTS Self-reported physical well-being was comparable to norms. Other HRQoL dimensions were higher than norms, with the highest mean = 52.2 (p < 0.001) for school environment. Parent-reported HRQoL in survivors was comparable to population norms; only physical well-being was lower (mean = 47.1, p < 0.001), and school environment was higher (mean = 51.1, p = 0.035). Parent-reported HRQoL was lower for survivors of CNS tumors (physical well-being: = -5.27, p = 0.007; psychological well-being: = -4.39, p = 0.044; peers = -5.17, p = 0.028), survivors of neuroblastoma (psychological well-being = -5.20, p = 0.047), and survivors who had had a relapse (physical well-being = -5.41, p = 0.005). CONCLUSIONS Assessing HRQoL during follow-up care, with a focus on physical well-being, specific diagnoses (e.g., CNS tumor) and late complications (e.g., relapse) might help to early identify problems and offer support to survivors with reduced HRQoL.

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Section: Discussionmentioning

confidence: 99%

Health-related quality of life in young survivors of childhood cancer

et al. 2015

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“…In general, the treatment of childhood cancer negatively impacts the social and professional routines of parents, often requiring them to leave their jobs and give priority to treatment (Björk et al, 2005;Earle, Clarke, Eiser, & Sheppard, 2006;Kerr, Harrison, Medves, & Tranmer, 2004;Ljungman et al, 2003;McGrath, 2001;Steffen & Castoldi, 2006;Young et al, 2002). Attention totally focused on a child may lead to marital conflict, impair communication and/or the self-care of parents (Costa & Lima, 2002;James et al, 2002;Steffen & Castoldi, 2006).…”

Section: The Psychosocial Impact Of Childhood Cancer On Parentsmentioning

confidence: 99%

“…Access to information concerning the disease, the child's physical condition, procedures, benefits and side effects are stressed by the parents to be crucial over the course of the treatment (Ferreira, 2005;Kerr, Harrison, Medves, & Tranmer, 2004;Kerr, Harrison, Medves, Tranmer, & Fitch, 2007;Mendonça, 2007). The availability of social support from family members, friends, co-workers, and neighborhoods is also extremely important (Bayat et al, 2008;James et al, 2002;Kerr, Harrison, Medves, & Tranmer, 2004;McGrath, 2001;McGrath et al, 2005;Wijnberg-Williams et al, 2006).…”

Section: Psychosocial Distressmentioning

confidence: 99%

“…The availability of social support from family members, friends, co-workers, and neighborhoods is also extremely important (Bayat et al, 2008;James et al, 2002;Kerr, Harrison, Medves, & Tranmer, 2004;McGrath, 2001;McGrath et al, 2005;Wijnberg-Williams et al, 2006). Higher levels of social support are generally available at the time the diagnosis is disclosed and decline over the treatment period, while mothers tend to receive more support than fathers (Hoekstra-Weebers et al, 2001;Holm, Patterson, & Gurney, 2003;Iobst et al, 2009;Wijnberg-Williams et al, 2006).…”

Section: Psychosocial Distressmentioning

confidence: 99%

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Impacto psicossocial do câncer pediátrico para pais: revisão da literatura

Kohlsdorf

Costa

2012

Paidéia (Ribeirão Preto)

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A diagnosis of childhood cancer represents challenges for patients, family members, and health workers. The parents of a child or adolescent have to play an expanded role because they need to reconcile parental tasks and treatment demands. This study presents an integrative literature review concerning difficulties experienced by pediatric caregivers during onco-hematological treatment. The CAPES periodicals portal and the Scientific Library Online (SciELO) were searched for papers published between 1999 and 2009. Relevant themes are highlighted in Brazilian and international studies published in the field, such as psychological disorders experienced by caregivers, the professional and financial impact associated with treatment, changes in educative practices and family dynamics, and the influence of cultural practices on the experience of treatment. Suggestions for further research are presented to support efficient psychosocial interventions and minimize the psychosocial costs experienced by pediatric caregivers over the course of onco-hematological treatments.Keywords: Childhood Cancer, Caregivers, Children, Psycho-oncology. Impacto Psicossocial do Câncer Pediátrico para Pais: Revisão da LiteraturaResumo: O diagnóstico de câncer infantil representa desafios para pacientes, familiares e profissionais de saúde. Os pais de uma criança ou adolescente em tratamento têm seu papel estendido, pois precisam administrar práticas parentais e exigências do tratamento. Este artigo objetiva realizar revisão integrativa da literatura relacionada a dificuldades vivenciadas pelos cuidadores pediátricos durante tratamento onco-hematológico. Foi realizada revisão da literatura publicada entre 1999 e 2009, a partir da busca em bases de dados Portal de Periódicos CAPES e Scientific Library Online (SciELO). Com base na literatura nacional e internacional recentemente publicada na área destacam-se temas importantes, como perturbações psicológicas vivenciadas pelos cuidadores, impacto profissional e financeiro associado ao tratamento, mudanças em práticas educativas, alterações na dinâmica familiar e influência de práticas culturais na vivência do tratamento. São apresentadas sugestões para pesquisas que possam subsidiar intervenções psicossociais eficientes para diminuir custos psicossociais vivenciados por cuidadores pediátricos ao longo do tratamento onco-hematológico. Palavras-chave:Câncer em Crianças, Cuidadores, Crianças, Psico-oncologia. Impacto Psicosocial del Cáncer en la Infancia para Padres: Revisión de la LiteraturaResumen: El diagnóstico del cáncer en la infancia es desafío para enfermos, familia y profesionales Hoekstra de salud. Los padres del niño o adolescente en tratamiento tienen su papel extendido y necesitan asociar prácticas de paternidad a exigencias del tratamiento. Constituí objetivo de este artículo realizar revisión integrativa de literatura, con atención para dificultades vivenciadas por cuidadores pediátricos en tratamiento onco-hematológico. Fue realizada busca en la literatura publicada entre...

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“…De modo geral, o tratamento do câncer pediátrico tem um impacto adverso sobre a rotina social e profissional dos pais, exigindo muitas vezes que deixem o emprego, dedicando mais atenção ao paciente em tratamento (Björk, Wiebe & Hallström, 2005;Cohn, Goodenough, Foreman & Suneson, 2003;Dockerty, Skegg & Williams, 2003;Kerr, Harrison, Medves & Tranmer, 2004;Steffen & Castoldi, 2006;Young, Dixon-Woods, Findlay & Heney, 2002). A atenção concentrada sobre o filho doente pode contribuir para gerar conflitos maritais e prejuízos à comunicação e autocuidado dos pais (Costa & Lima, 2002;James & cols., 2002;Steffen & Castoldi, 2006).…”

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Dificuldades relatadas por cuidadores de crianças e adolescentes com leucemia: alterações comportamentais e familiares

Kohlsdorf¹,

Costa²

2010

Inter. Psicol.

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RESUMOO tratamento de câncer na infância expõe pacientes e familiares a diversas exigências e desafios, que envolvem alterações na dinâmica familiar, expectativas em relação ao tratamento, medo de recaídas, custos financeiros e mudanças na rotina profissional e familiar. O objetivo deste estudo foi analisar o impacto do semestre inicial de tratamento para leucemia sobre a rotina, dinâmica familiar, práticas educativas parentais e padrões comportamentais de pacientes e de cuidadores, a partir de entrevistas semiestruturadas realizadas em dois momentos durante o tratamento. Participaram deste estudo 30 cuidadores de crianças e adolescentes em tratamento para leucemia. Os resultados indicam alterações importantes no comportamento dos pacientes, tais como agressividade exacerbada e não-colaboração com tratamento. As práticas educativas parentais foram caracterizadas por maior permissividade, ganhos secundários e superproteção. Por outro lado, os cuidadores indicaram a aquisição gradual de habilidades para lidar com procedimentos médicos-invasivos e efeitos colaterais da medicação antineoplásica, ao longo do tratamento. Os participantes destacaram alterações importantes na rotina profissional dos cuidadores e na rotina social-familiar. Os dados indicam a necessidade de investigar de forma específica e sistemática as dificuldades às quais cuidadores e pacientes são expostos ao longo do tratamento, a fim de possibilitar estratégias de intervenção psicossocial mais eficientes. Palavras-chave: câncer pediátrico; leucemia pediátrica; cuidadores. ABSTRACT Difficulties Reported by Caregivers of Children and Adolescents With Leukemia:Behavioral and family changes Childhood cancer treatment exposes patients and their families to several demands and challenges, which involve changes in family dynamics, beliefs related to the treatment, fear of relapse, financial costs, and changes in both professional and family routines. The main goal of this study was to analyze the impact of the first six months of leukemia treatment upon routine, family dynamics, educational parenting patterns, and patients´ and caregivers´ behavioral patterns, using semi-structured interviews carried out at two times during treatment. Thirty caregivers participated in the study. The results indicate relevant changes related to patients' behavior, such as heightened anger and absence of collaboration. Educational parenting patterns were characterized by higher permissiveness during this stage in addition to secondary gains and overprotective behavior. On the other hand, the caregivers indicated the gradual acquisition of skills to deal with invasive procedures and side effects related to antineoplasic medication, during treatment. The participants highlighted relevant changes related to caregivers´ professional and social-family routine. These data indicate the need to investigate, in a specific and systematic way, the difficulties to which caregivers and patients are exposed to during treatment, so as to promote more efficient psychosocial intervention st...

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Supportive Care Needs of Parents of Children With Cancer: Transition From Diagnosis to Treatment

Cited by 78 publications

References 43 publications

Health-related quality of life in young survivors of childhood cancer

Health-related quality of life in young survivors of childhood cancer

Impacto psicossocial do câncer pediátrico para pais: revisão da literatura

Dificuldades relatadas por cuidadores de crianças e adolescentes com leucemia: alterações comportamentais e familiares

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