Punpanich Warunee, Detels Roger, Gorbach Pamina M, Leowsrisook Pimsiri
Queen Sirikit National Institute of Child Health, College of Medicine, Rangsit University, Bangkok 10400, Thailand.
J Med Assoc Thai. 2008 Oct;91 Suppl 3(Suppl 3):S76-84.
This study aims to engage children living with HIV/AIDS and their caregivers in a qualitative assessment to address psychosocial needs pertaining to this population. The purpose is to identify unique situations and concerns they experienced in dealing with the disease and ongoing treatment process.
Individual in-depth interviews using a semi-structured interview guide were employed.
Thirty-four children (12 boys and 22 girls) aged 8-16 and thirty-five primary caretakers (6 males and 29 females) aged 21-66 participated in this study. Results identified some of the common concerns and challenges shared among this population, including impact of the illness on loved ones, disclosure, adherence, behavioural problems, discrimination, treatment affordability, and financial constraints. Certain issues that emerged as important themes specific to this population include unwarranted concerns about certain aspects of the illness, misinterpretation of the nonverbal clues within families, future child guardianship and placement planning, treatment availability during transitional period, and the challenge of maintaining the confidentiality of the diagnosis.
The needs and suggestions of the target groups provided the framework for improving the current services such as the provision of private sessions with children separated from their caregivers (especially for older children and adolescents), disclosure intervention, behavioral screening, life skills building, and empowerment mobilization. Thus, the information gained can be used to facilitate the holistic and humanized health care provision for children living with HIV/AIDS.
本研究旨在让感染艾滋病毒/艾滋病的儿童及其照料者参与定性评估,以满足该人群的心理社会需求。目的是确定他们在应对疾病和持续治疗过程中所经历的独特情况和担忧。
采用半结构化访谈指南进行个体深入访谈。
34名年龄在8至16岁的儿童(12名男孩和22名女孩)以及35名年龄在21至66岁的主要照料者(6名男性和29名女性)参与了本研究。结果确定了该人群共有的一些常见担忧和挑战,包括疾病对亲人的影响、信息披露、依从性、行为问题、歧视、治疗可承受性和经济限制。作为该人群特有的重要主题出现的某些问题包括对疾病某些方面的无端担忧、家庭内部对非语言线索的误解、未来儿童监护和安置计划、过渡期间的治疗可及性以及维持诊断保密性的挑战。
目标群体的需求和建议为改进当前服务提供了框架,例如为与照料者分开的儿童提供单独辅导课程(特别是对于年龄较大的儿童和青少年)、信息披露干预、行为筛查、生活技能培养和赋权动员。因此,所获得的信息可用于促进为感染艾滋病毒/艾滋病的儿童提供全面和人性化的医疗保健。