Burden experience of caregivers of acute lymphoblastic leukemia: Impact of coping and spirituality

Chivukula, Usha; Kota, Sirisha; Nandinee, Durgesh

doi:10.4103/ijpc.ijpc_209_17

Cited by 24 publications

(24 citation statements)

References 25 publications

(25 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…these indicators have been seen as a useful resource for coping strategies and improving caregivers' wellbeing [66].…”

Section: Sociodemographic and Psychosocial Pro Le Of Caregiversmentioning

confidence: 99%

See 1 more Smart Citation

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

Berrocoso

Amayra

Lázaro

et al. 2020

Preprint

View full text Add to dashboard Cite

Background: Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being.Results: The sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impact on the parents' QoL and negative relationship with the symptomatology were assessed. The use of engagement strategies such as problem focused coping was associated with improved psychological QoL and social support.Conclusions: WHS caregivers share similarities in their profile and needs with caregivers of children with other rare diseases. Pychosocial support groups involving parents caring for children with the same disease could improve caregivers’ well-being and QoL by strengthening their social support network and using positive coping styles.

show abstract

“…these indicators have been seen as a useful resource for coping strategies and improving caregivers' wellbeing [66].…”

Section: Sociodemographic and Psychosocial Pro Le Of Caregiversmentioning

confidence: 99%

“…In fact, some authors, such as Chivukula [66], suggest that spirituality taken as a multidimensional construct could be a valuable resource for improving caregiver coping and well-being.…”

Section: Caregivers' Psychosocial and Clinical Statusmentioning

confidence: 99%

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

Berrocoso

Amayra

Lázaro

et al. 2020

Preprint

View full text Add to dashboard Cite

show abstract

“…Thus, when faced with a larger deletion size, the parents reported more distress but perceived a stronger social support network and used more coping strategies such as problem solving. Moreover, they experienced a greater sense of gratitude, peace and serenity in their lives; these indicators have been seen as a useful resource for coping strategies and improving caregivers' well-being [66].…”

Section: Sociodemographic and Psychosocial Profile Of Caregiversmentioning

confidence: 99%

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

Berrocoso

Amayra

Lázaro

et al. 2020

Preprint

View full text Add to dashboard Cite

Background : Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being. Results: The sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impact on the parents' QoL and negative relationship with the symptomatology were assessed. The use of engagement strategies such as problem focused coping was associated with improved psychological QoL and social support. Conclusions: WHS caregivers share similarities in their profile and needs with caregivers of children with other rare diseases. Pychosocial support groups involving parents caring for children with the same disease could improve caregivers’ well-being and QoL by strengthening their social support network and using positive coping styles. Keywords: Wolf-Hirschhorn syndrome; 4p deletion; caregivers; quality of life; coping; depression; social support; spirituality.

show abstract

“…(6,7) Çocuğa kanser tanısı konulduğunda, bakım veren ebeveynler ciddi anksiyete, travma, belirsizlik ve üzüntü yaşarlar. (8) Aynı zamanda kronik hastalığa sahip çocukların bakım verenlerinin de orta ve şiddetli derecede anksiyete yaşadıkları bildirilmiştir. (9) Çocuğa konulan kanser teşhisi sonrasında yapılan çalışmalar, ebeveynlerin anksiyete, konsantrasyon zorlukları, suçluluk duyguları, karamsarlık, travma sonrası stres belirtileri, üzüntü ve uyku bozuklukları gibi belirtiler yaşadıklarını göstermiştir.…”

unclassified

“…Bakım yükü ve anksiyete arasındaki ilişkiyi incelemek, bunları etkileyen faktörler üzerinde ne yapılabileceğinin düşünülmesi ve bu konuda ebeveynleri desteklemek, planlı eğitimlerin uygulanması önemlidir. (8,12) Bu tür araştırmaların yapılması, kanser tanısı konmuş çocuğa sahip ebeveynlerin psikolojik ve davranışsal durumlarının değerlendirilerek sorunların erken belirlenmesinin önemini vurgulanmaktadır. (3,14,15) (16) İnci ve ark.…”

unclassified

The Relationship Between Care Burden and Anxiety Levels of Parents Who Have Child Who were Diagnosed With Cancer

Köse¹,

Arar²,

Yıldırım³

2019

HEAD

View full text Add to dashboard Cite

Aim: The purpose of this study is to analyze the relationship between the care burden and anxiety levels of parents whose child has cancer. Methods: Research was made between September 2017 and January 2018 after taking the necessary permission from the ethics board at a training and research hospital. The population of this descriptive research consisted of parents of children who had been diagnosed with cancer and who were staying in the hospital on the dates the research was conducted, and the sample comprised parents who met the research criteria and who agreed to participate into the research. A Data Question Form was obtained by using the Burden Interview and Beck Anxiety Scale. The data were analyzed using the SPSS 22.0 package program. Results: In this study, it was found that the parents of a low economic status had a higher care burden and higher point averages on the Beck Anxiety Scale (p<0.05 and p<0.01 respectively). Parents of children who had been recently diagnosed with cancer had higher Beck Anxiety Scale point averages (p<0.01). Parents of children who had another child with a chronic disease had a higher care burden as well as Beck Anxiety Scale point averages (p<0.01). Burden and anxiety levels of parents showed a positive linear relation (r=0.512, p<0.001). Conclusion: It was concluded that poor parents and parents who had another child with chronic disease had a higher care burden and more anxiety, and parents of children who had been recently diagnosed with cancer had more anxiety. Also, a simultaneous increase and a positive linear relation was shown in the care burden and anxieties of parents whose children had cancer.

show abstract

Burden experience of caregivers of acute lymphoblastic leukemia: Impact of coping and spirituality

Cited by 24 publications

References 25 publications

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

The Relationship Between Care Burden and Anxiety Levels of Parents Who Have Child Who were Diagnosed With Cancer

Contact Info

Product

Resources

About