作为一种招募工具的系谱图，用于识别为镰状细胞病青少年准备过渡的主要照顾者。
The genogram as a recruitment tool for identifying primary caregivers of youth living with sickle cell disease preparing for transition.
作者信息
Varty Maureen, Speller-Brown Barbara, Patterson Kelly Katherine
机构信息
UCHealth University of Colorado Hospital, Aurora, Colorado, USA.
University of Colorado College of Nursing, Aurora, Colorado, USA.
出版信息
J Adv Nurs. 2023 Jan 30. doi: 10.1111/jan.15570.
AIMS
The purpose of this secondary analysis was to describe the impact of using genograms to identify family caregivers from an original research study which used family caregiver-adolescents/young adults (AYA) dyads.
BACKGROUND
Research to improve transition preparation for AYA with chronic disease is essential as 90% will survive into adulthood. Family-based transition research is specifically needed as a majority of transition preparation will occur in the home setting. Dyadic research on transition has not previously described strategies for recruiting appropriate family caregivers.
DESIGN
A descriptive, secondary analysis was conducted using genograms developed during the original study conducted between October 2019 and February 2020.
METHODS
For this secondary analysis conducted between July 2020 and August 2021, 50 genograms were analysed using descriptive statistics to describe family structures, relationships and responsibilities in families of AYAs living with sickle cell disease.
RESULTS
In 43 genograms, there was only one primary caregiver in the family. In seven genograms, there were multiple primary caregivers who met the inclusion criteria for primary caregiver in a single family. In five genograms, there were two appropriate primary caregivers in a single family, and in two genograms, there were three appropriate individuals in a single family who met study criteria as a primary caregiver.
CONCLUSIONS
Findings from the analysis of the genograms used in the original study demonstrated potential ability to improve on dyad recruitment by more specifically identifying the family member most involved in supporting the AYA's disease management.
IMPACT
Genograms are an established tool for gathering information on families and application with recruitment could improve research in the realm of transition and other family-based research.
NO PATIENT OR PUBLIC CONTRIBUTION
This was a secondary analysis that assessed already existing data.
目的
本次二次分析的目的是描述使用系谱图从一项原研究中识别家庭照顾者的影响，该原研究使用了家庭照顾者-青少年/青年（AYA）二元组。
背景
改善慢性病AYA的过渡准备研究至关重要，因为90%的患者将存活至成年。由于大多数过渡准备将在家庭环境中进行，因此特别需要基于家庭的过渡研究。此前，关于过渡的二元研究尚未描述招募合适家庭照顾者的策略。
设计
使用2019年10月至2020年2月进行的原研究中绘制的系谱图进行描述性二次分析。
方法
在2020年7月至2021年8月进行的本次二次分析中，使用描述性统计分析了50个系谱图，以描述患有镰状细胞病的AYA家庭的家庭结构、关系和责任。
结果
在43个系谱图中，家庭中只有一名主要照顾者。在7个系谱图中，有多名主要照顾者符合单个家庭中主要照顾者的纳入标准。在5个系谱图中，单个家庭中有两名合适的主要照顾者，在2个系谱图中，单个家庭中有三名符合主要照顾者研究标准的合适人选。
结论
对原研究中使用的系谱图的分析结果表明，通过更具体地识别最参与支持AYA疾病管理的家庭成员，有可能改进二元组招募。
影响
系谱图是收集家庭信息的既定工具，将其应用于招募可以改善过渡领域及其他基于家庭的研究。
无患者或公众参与
这是一项评估现有数据的二次分析。
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