Quality of Life in Children and Their Primary Caregiver Post Hematopoietic Stem Cell Transplantation and its Related Factors
Date Issued
2009
Date
2009
Author(s)
Chang, Chiao-Fang
Abstract
More and more children have gone through hematopoietic stem cell transplantation (HSCT) to treat their diseases, and thanks to the advancement of technology and practice of HSTC, mortality rates of Children have greatly decreased in recent years. However, the negative impacts of post HSCT on children and their families’ quality of life are tremendous. How to help patients recover not only from the disease but physically, socially and psychologically after the treatment is imperative. It is equally important to help children and their primary caregiver lives return normal sooner. The purpose of this study is to understand the quality of life and its related factors in children post HSCT and their primary caregivers. This research was designed as a cross-sectional study with structured questionnaire, and the data were collected by purposive sampling. The questionnaire was divided into two parts: the children post HSCT and their primary caregivers. There are three main categories in the part of the children post HSCT- (1) General information, (2) Quality Of Life for Children with Cancer (QOLCC), and (3) Physical Symptoms scales. The other part of the questionnaire for the primary caregivers is adopted from WHOQOL-BREF. From November 15, 2008, to February 28, 2009, 37 post-HSCT children/ caregiver pairs within 11 years of HSCT were recruited from a medical center in Taipei, Taiwan. Age of children ranged from 7 to 20, and the data were analyzed by the software SPSS 13.0 for windows. The major findings are as below:. Quality of life in Children：1) They got the best quality of life in Physical Scale Domain (average score 2.70±3.81), and the worst in Cognitive Problem Module Domain (average score 4.35±4.11) among the six domains of QOLCC scale.2) The quality of life of children transplanted prior to six months ago was better than those transplanted within six months in terms of Physical Scale, Psychological Scale, Disease and Treatment-Related Symptoms/Problems domains on the scale sheet of QOLCC. Children’s overall quality of life was worse for those suspended from school than those either returned to school or home-schooled themselves in the domains of Physical Scale and Social Scale. Children who had been off medications were found to have better quality of life than whom were still on regular medications. If their mothers were primary caregivers, they owned a superior overall quality of life in the domains of Physical Scale and Psychological Scale. The shorter period of post-transplant and higher frequency of clinic visits were associated with the worse quality of life in the domain of physical Scale.. Quality of life of the primary caregivers：1) They got the best score (15.18±1.95) in the domain of Physical Domain, and the worst score (13.39±2.33) in the Psychological Domain.2) The frequency of clinic visits lowered the quality of life in the Psychological and Social Relation Domain. 3) In terms of patients’ bothersome physical symptoms, the severity of parageusia was reversely correlated with the primary caregivers’ quality of life in the Physical Domain and Psychological Domain. Similarly, the severity of pain was harmful for the primary caregivers’ quality of life in the physical, Psychological Domain and overall scores of quality of life (total QOL), too.4) For higher-educated primary caregivers with bachelor degree or above, they had better quality of life. We also find that primary caregivers’ health status influence the quality of life, eg, diseased primary caregivers had impaired quality of life in the Physical Domain, Social Relation Domain and overall quality of life. 5) The children’s and their primary caregivers’ quality of life disclosed a positive correlation significantly in all Domains. he results of this study pointed out that children and their primary caregivers were demanded for further information and nursing, and they should be followed indefinitely. As we knew more about the physical symptoms of children, it is helpful to amend nursing instructions. We hope that children and their primary caregivers will obtain a continuous and comprehensive nursing care and improve their quality of life in the future.
Subjects
children
hematopoietic stem cell transplant
primary caregiver
quality of life
SDGs
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