Common themes and ethnic differences in family caregiving the first year after diagnosis of childhood cancer: Part II

Leavitt, Maribelle; Martinson, Ida M.; Liu, Chong-Yeu; Armstrong, Virginia; Hornberger, Laura; Zhang, Jianqin; Han, Xiao

doi:10.1016/s0882-5963(99)80045-1

Cited by 46 publications

(92 citation statements)

References 19 publications

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“…It can mean a great deal of pressure for parents to take over technically advanced procedures [21] , according to Leavitt et al (1999), which is congruent with the results in the current study. There were situations in which the families hesitated to handle troublesome tasks, but sometimes their reluctance was overcome.…”

Section: Discussionsupporting

confidence: 90%

Family participation in childhood cancer care

Kästel

Enskär

2013

JNEP

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Background: Child cancer care is becoming increasingly successful, the treatment brought more success through intensified therapy, but this development has not been easy to achieve due to the pain and anxiety that the treatment often causes. It is not possible to eliminate the chaos the family experiences, but it can be reduced through a deepened understanding of the situation. Purpose:The aim of the study is to highlight families views on participation in childhood cancer care. Method:A qualitative design, appropriate to gain a holistic view, has been chosen. Eight families with children diagnosed with cancer, of various ages and gender and from various backgrounds, participated in five interviews each during the first year of the child´s illness. Findings:The families constitute a cornerstone in paediatric oncology care today, but the results indicate that all the various tasks and commitments for the families, sometimes entail too heavy a burden. They are in need of better support and clearer instructions to be able to cope with the situation including rules and measures concerning the child. Therefore, it is urgent to clarify who has the formal responsibility for medical consequences that might occur in connection with delegated responsibility. The study shows that there is a lack of pedagogical thought and a need to create a pedagogical model. Conclusion:There is a need for guiding principles and education for the parents, which would contribute to their increased confidence.

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Section: Discussionsupporting

confidence: 90%

Family participation in childhood cancer care

Kästel

Enskär

2013

JNEP

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“…A substantial body of qualitative work reports that accommodating treatment demands for the child with cancer requires reorganization of roles and reallocation of responsibilities among family members (Chesler and Parry 2001;Clarke-Steffen 1997;Clarke 2006;Jones and Neil-Urban 2003;Kars et al 2008;Leavitt et al 1999;Martinson et al 1999;McCubbin et al 2002;McGrath 2001b;Mercer and Ritchie 1997;Neil-Urban and Jones 2002;Nicholas et al 2009;Reay et al 1998;Wong and Chan 2006;Yin and Twinn 2004;Young et al 2002). Fathers and oncology staff members report that the ill child becomes the focus of attention (Harrington et al 2009;Jones and Neil-Urban 2003).…”

Section: Shifts In Roles and Responsibilitiesmentioning

confidence: 99%

“…Qualitative studies indicate that families continuously adjust to changing demands over the treatment trajectory (De Graves and Aranda 2008;Freeman et al 2000;Harrington et al 2009;Jones and Neil-Urban 2003;Leavitt et al 1999;McCubbin et al 2002;McGrath et al 2005;Patterson et al 2004;Ward-Smith et al 2005;Degner 2003, 2004). Parents of children with both active and completed treatment status report that the initial diagnosis and early treatment stages are accompanied by the most pronounced disruptions to daily life (Freeman et al 2000;Harrington et al 2009;Jones and Neil-Urban 2003;McGrath et al 2005;Patterson et al 2004), with parents reporting being consumed by the diagnosis Patterson et al 2004).…”

Section: Family Changes Over the Treatment Trajectorymentioning

confidence: 99%

Family Adjustment to Childhood Cancer: A Systematic Review

Long

Marsland

2011

Clin Child Fam Psychol Rev

311

325

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This systematic review integrates qualitative and quantitative research findings regarding family changes in the context of childhood cancer. Twenty-eight quantitative, 42 qualitative, and one mixed-method studies were reviewed. Included studies focused on family functioning, marital quality, and/or parenting in the context of pediatric cancer, were written in English, and were published between 1996 and 2009. Overall, qualitative findings show that families alter roles, responsibilities, and day-to-day functioning to accommodate the needs of children with cancer. Although some degree of family reorganization is normative, the extent and impact of these changes varies. Quantitative work shows that mean levels of family functioning (e.g., cohesion, flexibility) are similar between families facing cancer and normative or comparison samples. However, families follow different trajectories of improvement, decline, or stability in family closeness and marital quality. Parenting has received limited quantitative research attention, but qualitative work suggests that parents perceive deeper bonds with ill children and may spoil or overprotect them. Conclusions support future work examining the influence of family-level variables on the adjustment of individual family members.

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“…Changes in the domestic routine, and also in the family and professional spheres, along with somatic symptoms are responses common to both groups Lou, 2006;Wong & Chan, 2006;Yeh, 2002). The initial months of treatment demand more from parents regardless of culture; these have to adapt to the treatment requirements (Han, 2003;Leavitt et al, 1999;Ow, 2003). Some elements such as social support and seeking out information are commonly valued (Han, 2003;Ow, 2003;Wong & Chan, 2006).…”

Section: Psychosocial Distressmentioning

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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Common themes and ethnic differences in family caregiving the first year after diagnosis of childhood cancer: Part II

Cited by 46 publications

References 19 publications

Family participation in childhood cancer care

Family participation in childhood cancer care

Family Adjustment to Childhood Cancer: A Systematic Review

Impacto psicossocial do câncer pediátrico para pais: revisão da literatura

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