Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being

Klassen, Anne F.; Raina, Parminder; Reineking, Samantha; Dix, David; Pritchard, Sheila; O’Donnell, Maureen

doi:10.1007/s00520-007-0243-x

Cited by 154 publications

(191 citation statements)

References 78 publications

(145 reference statements)

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“…Indeed, some studies suggest that children's behavioral problems may be a prominent source of stress for the parents, compared to the child's disability [35,37]. This present finding provides additional support to Klassen [5] which identified child characteristics as one of the most important variable in their care giving process and caregiver burden model.…”

Section: Discussionsupporting

confidence: 77%

“…A study reviewed 29 articles on the psychological effects of childhood cancer on parents concluded that they experienced significantly more distress as opposed to a normative group of parents [4]. They reported to experience poorer physical and psychosocial quality of life [5,6]. The majority of studies suggest that, at some point of time, the parents display a range of emotional challenges especially anxiety and stress symptoms [7] and these two were found to be significantly correlated [8].…”

mentioning

confidence: 99%

“…Maternal psychological problems were more frequently identified among mothers whose children displayed problematic behavior and emotions compared to those children who demonstrated well-functioning behavior. For example, a systematic review that sought to understand care giving experiences in parents of children with cancer, revealed that poorer caregiver psychological well-being were associated with a number of child characteristics including behavior problems, anxiety, depression, and emotional or somatic distress [5]. In short, parent and child could both influence each other's functioning.…”

mentioning

confidence: 99%

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Psychological Distress and Associated Factors in Parents of Children with Cancer

Othman¹,

Mohamad²,

Hussin³

et al. 2011

IJSSH

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Abstract-Introduction: Diagnosis of cancer in children poses a challenging situation for parents to cope with. Method: Seventy-nine (N = 79) parents whose children are receiving treatment for cancer in Hospital Universiti Sains Malaysia participated in this cross-sectional descriptive study. They completed a set questionnaire measuring their level of anxiety and stress, knowledge about cancer, and amount of activities they perform with or for the child to enhance the child's coping abilities, in addition to children's psychological problems. Socio-demographic information was obtained. Results: Parents with higher cancer knowledge reported reduced stress (p<0.01) and anxiety (p<0.05). The higher the income (p<0.05) and education (p<0.01), the higher cancer knowledge. Parental stress was negatively correlated with income (p<0.05) and education (p<0.01), indicating that the better educated and higher the salary, less stress symptoms. Highly educated parents engaged in more activities with their children (p<0.05). Parental anxiety was correlated significantly with children's current treatment including chemotherapy procedure (p<0.01), 'In-patient' Vs 'Outpatient' (p<0.01), and children's condition (p<0.01). Parents of hospitalized children who underwent chemotherapy were significantly more anxious than their counterparts. Parents who perceived their children's current condition as 'very good', reported reduced anxiety, compared to those who reported their child's condition as 'ok'. The more psychological problems the children had, the higher parental anxiety (p<0.05) and stress symptoms (p<0.01). Discussion: Some groups of parents reported more psychological difficulties compared to others. Ongoing psychological assessment and intervention may reduce parental stress by increasing coping and reducing children psychological problems.

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Section: Discussionsupporting

confidence: 77%

mentioning

confidence: 99%

mentioning

confidence: 99%

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Psychological Distress and Associated Factors in Parents of Children with Cancer

Othman¹,

Mohamad²,

Hussin³

et al. 2011

IJSSH

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“…Additional work with larger samples will be required to clarify the similarities and differences in maternal and paternal responses regarding the QOL of BT children. Although our reliance on exclusively maternal reports may limit the generalizability of our findings, child and adolescent BT patients are usually under maternal care, 1 and mothers are recognized as the main source of emotional support for children with cancer. 24 We therefore believe that the findings reported herein are culturally appropriate for other country.…”

Section: Discussionmentioning

confidence: 93%

Agreement between pediatric brain tumor patients and parent proxy reports regarding the Pediatric Functional Assessment of Cancer Therapy–Childhood Brain Tumor Survivors questionnaire, version 2

Yoo

Shin

Park

et al. 2010

Cancer

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BACKGROUND: This study investigated the agreement between self-reports from pediatric brain tumor patients and proxy reports from their parents regarding the patients' quality of life (QOL), as assessed using a brain tumor-specific QOL assessment tool, the Pediatric Functional Assessment of Cancer Therapy-Childhood Brain Tumor Survivors (pedsFACT-BrS) questionnaire. The authors expected moderate correlation and similar mean scores between patient and parent reports. METHODS: The pedsFACT-BrS for those aged 7 to 18 years was completed by 351 brain tumor patients (166 children and 185 adolescents), and the parent proxy reports were completed by 351 mother proxies and 37 father proxies. Statistical analyses, including the Pearson product-moment correlation coefficient, intraclass correlation, and comparison of group means, were used to compare the 33 items shared by all 4 versions of the peds-FACT-BrS. RESULTS: The correlation between reports completed by pediatric patients and their parent proxies was significant (P ¼.59-.84), whereas that between the reports of adolescent patients and their parent proxies was slightly weaker (P ¼.47-.78). The patient and parent proxy reports showed moderate-to-good agreement and yielded similar mean scores in both the child and adolescent brain tumor patient groups; the sole exception was a difference in emotional well-being scores. CONCLUSIONS: The results indicate that proper use of the pedsFACT-BrS for patients and their parent proxies can provide clinicians with valid information about the overall QOL of child and adolescent brain tumor patients, including both their general health and their brain tumor-specific well-being. Cancer 2010;116;3674-82.

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“…Difficulties for the patient's parents include fear of relapse, anxiety, the need to assimilate information received, care provided to healthy children, attempts to adapt to the new health condition, provide care in the event of side effects, and care provided for intercurrences, among other situations, which harm the family's quality of life (Beck & Lopes, 2007a, 2007bBjörk, Wiebe, & Hallström, 2005;Clarke, Fletcher, & Schneider, 2005;Eiser & Eiser, 2007;Klassen et al, 2007;McGrath, 2001).…”

mentioning

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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Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being

Cited by 154 publications

References 78 publications

Psychological Distress and Associated Factors in Parents of Children with Cancer

Psychological Distress and Associated Factors in Parents of Children with Cancer

Agreement between pediatric brain tumor patients and parent proxy reports regarding the Pediatric Functional Assessment of Cancer Therapy–Childhood Brain Tumor Survivors questionnaire, version 2

Impacto psicossocial do câncer pediátrico para pais: revisão da literatura

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