ASM Fung, LCK Low, SY Ha, PWH Lee

Abstract

Objectives: Chronic childhood illness may be a risk factor for psychosocial or psychiatric disturbances. Yet, children with chronic illnesses may also show resilience and active coping with varying degrees of success or failure. The present study aims to outline the patterns of coping and adjustment of patients with thalassaemia major, and identify specific developmental issues associated with living with the chronic illness. Method: Seventy-three patients receiving treatments at Queen Mary Hospital were assessed with a set of semi-structured interview and questionnaires instruments covering the children's perceptions of their quality of life, illness and treatment. Their psychological adjustment was assessed through measures on life satisfaction, the extent and nature to which they felt they had been adversely affected by the illness and treatment, and their views of the future and of themselves. Results: The patients had multiple concerns and dissatisfactions with their illness, treatments, and health status, but many of their concerns were also commonly noted in normal healthy children. Resilience is demonstrated in a proportion of patients. There were clear developmental trends showing that patients had changing concerns over different stages of their development. Older patients had more adverse impact as chronicity and mental exhaustion in coping with the illness seemed to be an important factor affecting adjustment. Conclusions: The results indicate the need for psychosocial interventions, especially for the older patients with thalassaemia major.

目的：兒童慢性疾病可能是造成其心理社會障礙或精神障礙的一個危險因素。而患慢性疾病的兒童又顯示出應對不同程度成功或失敗的應變能力和積極性。本研究旨在概述重型地中海貧血患兒應對慢性疾病和調整的方式以及闡述與慢性疾病患兒有關的特殊發育問題。方法：利用一套涵蓋了兒童對其生活品質、疾病和治療認知的半結構訪談和問卷系統，對在瑪麗醫院接受治療的73名患兒進行評估。通過他們對生活滿意度、對其所患疾病及治療負面影響的感受程度和性質、對未來及自己的展望來評估其心理調整狀況。結果：患兒對其疾病、治療和健康狀況存在諸多不滿和關注，但許多他們關注的問題與健康正常兒童一樣。部分患兒顯示了良好的應變能力。發育趨勢顯示他們所關注的問題在不同發育階段是不同的。病程長的患兒因應對疾病的長期性及精力的消耗受到更多的負面影響，這可能是影響他們自我調整的一個重要因素。結論：對重型地中海貧血的患兒，尤其是病程較長的患兒進行心理干預是非常必要的。