Psychosocial Needs of Families With a Child With Cancer

Ljungman, Gustaf; McGrath, Patrick J.; Cooper, Elisabeth J.; Widger, Kimberley; Ceccolini, Jill; Fernandez, Conrad V.; Frager, Gerri; Wilkins, Krista L.

doi:10.1097/00043426-200303000-00008

Cited by 50 publications

(44 citation statements)

References 36 publications

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“…These results are in line with previous studies that highlight the importance of training health professionals to pro-vide social support throughout the oncological process and therefore, helping families to cope with the shock of the diagnosis and subsequent treatment demands, until its end with either remission or palliative care (Askins & Moore, 2008;Decker, 2007;Dixon-Woods, Findlay, Young, Cox & Heney, 2001;Haluska et al, 2002;Ljungman et al, 2003;Maru, Gibson & Hinds, 2013;Norberg & Boman, 2007;Schor, 2003). It is expected that this will lead to a higher emotional adjustment and arguably, better coping with the various stressful situations to which both, patient and parents and/or primary caregivers may be subjected.…”

Section: Discussionsupporting

confidence: 91%

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Social support during childhood cancer treatment enhances quality of life at survival [El apoyo social durante el cáncer infantil favorece la calidad de vida en periodo de supervivencia]

et al. 2015

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Título: El apoyo social durante el cáncer infantil favorece la calidad de vida en periodo de supervivencia. Resumen. Introducción: La calidad de vida en relación a la salud (CVRS) en cáncer se ha relacionado con distintos factores de riesgo y protección tales como el apoyo social percibido (ASP) y el afrontamiento. Sin embargo, la investigación acerca de los efectos de dichos factores sobre la CVRS de supervivientes pediátricos sigue siendo no concluyente. Objetivo: Describir y explorar la relación entre CVRS en periodo de supervivencia y factores presentes durante el periodo de hospitalización (ASP y afrontamiento). Métodos: Diseño transversal. 41 supervivientes de cáncer infanto-juvenil respondieron medidas de CVRS en referencia al periodo actual de supervivencia, así como medidas de ASP y afrontamiento en relación al periodo de hospitalización. Resultados: La función discriminante obtenida logró clasificar correctamente al 78% de la muestra. Los supervivientes con mayores puntuaciones en CVRS, fueron aquellos que, en los peores momentos durante su hospitalización, percibieron un apoyo emocional satisfactorio (por parte del personal de enfermería) y no desplegaron un gran número de recursos de afrontamiento para hacer frente al evento estresante (sólo la estrategia de afrontamiento de acción social mostró relación estadísticamente significativa con CVRS). Conclusiones e implicaciones: Considerando estos resultados, parece adecuado el llevar a cabo intervenciones de tipo psicoeducativo destinadas a fortalecer la red de apoyo social, sobre todo por parte del personal sanitario (enfermería). Estos resultados ponen de manifiesto la importancia de considerar todas las oportunidades para abordar las necesidades emocionales de los pacientes durante su hospitalización, ya que se ha observado que esto puede tener un efecto positivo perdurable en periodo de supervivencia. Palabras clave: Cáncer infanto-juvenil; calidad de vida en relación a la salud; apoyo social; afrontamiento. Abstract. Background:Health-related quality of life (HRQoL) in cancer has been related to several protective and risk factors such as perceived social support (PSS) and coping. However, their effects on HRQoL once patients are in survivorship have not been fully described in pediatric samples. Objective: To describe and explore the relationship between HRQoL in survivorship and some factors (PSS, coping) present while active treatment. Methods: Cross-sectional study. Forty-one pediatric cancer survivors answered HRQoL measures referred to survivorship, as well as PSS and coping measures referred to treatment period. Results: The discriminant function obtained succeeds to correctly classify 78% of the sample. Survivors who showed high HRQoL were those who, in the hardest moment while hospitalization, perceived satisfactory emotional support (from nurses) and did not deploy a wide range of active coping resources to cope with stressful events (only social action coping strategy showed a significant relationship with HRQoL). Conclusions and implica...

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Section: Discussionsupporting

confidence: 91%

“…However, in many cases, caregivers could experience even greater distress than patients themselves (Ljungman et al, 2003), hampering the provision of effective support to patients. Such situation may increase vulnerability of both patients and their caregivers (Grootenhuis & Last, 1997;Patenaude & Kupst, 2005).…”

Section: *) Introductionmentioning

confidence: 99%

Social support during childhood cancer treatment enhances quality of life at survival [El apoyo social durante el cáncer infantil favorece la calidad de vida en periodo de supervivencia]

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%

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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“…However, studies concerning PPC often include only one diagnostic group, mainly cancer [12,16,18,23,29], and may, therefore, not differentiate between the needs of families affected by children with different diseases. There is a paucity of research concerning PPC for children with neurological or metabolic diseases [5,7,25].…”

Section: Introductionmentioning

confidence: 99%

Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups

2011

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The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions. Fifteen parents whose child had been treated in one of four children's hospitals and received palliative care or had died within the previous 2 years were interviewed. The main interview topics were: communication with professionals, need for support in care (at home or hospital), and bereavement support. Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support. Our findings demonstrate shortcomings in pediatric palliative care in Switzerland and outline basic needs of affected families including psychosocial support, coordination of care and bereavement support. Based on these findings we formulate some suggestions on how to initiate pediatric palliative care in a most efficient way and tailored to the needs of families in Switzerland.

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Psychosocial Needs of Families With a Child With Cancer

Cited by 50 publications

References 36 publications

Social support during childhood cancer treatment enhances quality of life at survival [El apoyo social durante el cáncer infantil favorece la calidad de vida en periodo de supervivencia]

Social support during childhood cancer treatment enhances quality of life at survival [El apoyo social durante el cáncer infantil favorece la calidad de vida en periodo de supervivencia]

Impacto psicossocial do câncer pediátrico para pais: revisão da literatura

Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups

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