与癌症共存:巴基斯坦一家私立三级甲等医院的儿童-父母二人组的观点和经验。

IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Qualitative Health Research Pub Date : 2024-08-07 DOI:10.1177/10497323241255636
Sehrish Sajjad, Rubina Barolia, Raisa B Gul
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引用次数: 0

摘要

关于癌症儿童及其父母的个人生活经历,已有大量文献记载。然而,在巴基斯坦,人们对这些儿童作为儿童-父母二人组在生活质量方面的经历知之甚少。因此,本研究是在巴基斯坦以家庭为中心的社会背景下进行的。研究人员对 28 名参与者(14 名儿童-家长二人组)进行了深入访谈,其中包括 9 名女性和 5 名男性接受癌症治疗的儿童,以及 8 名母亲和 6 名父亲(主要照顾者)。所有参与者都是穆斯林,来自不同的种族背景,大多数属于中等社会经济背景。采用 Braun 和 Clarke(2006 年)的框架进行了主题分析,发现了四个主题:(1) 压力、恐惧和乐观;(2) 对限制的反应;(3) 适应和应对;(4) 支持结构和机制。研究结果表明,在儿童罹患癌症的过程中,儿童和家长的日常生活受到了不同程度的影响。他们面临着一些挑战,这些挑战影响了他们的福祉。特别是,儿童认为他们的症状限制了他们的日常生活。不过,儿童和家长也详细阐述了如何使用不同的应对策略,如游戏、回忆过去、将宗教习俗融入日常生活,以及以家庭为中心的儿童护理方法。家长们还建议提供癌症专业服务和支持小组。总之,这些研究结果有助于医疗服务提供者为患儿家庭提供以家庭为中心的护理,并设计创新的干预措施,以满足癌症患儿的需求,提高他们的生活质量。
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Living With Cancer: Child-Parent Dyads' Perspectives and Experiences From a Private Tertiary Care Hospital in Pakistan.

The life experiences of children with cancer and their parents as individuals have been well documented in literature. However, little is known about their experiences as child-parent dyads in Pakistan regarding these children's quality of life. Thus, the study was conducted in the context of the family-centric society of Pakistan. In-depth interviews were conducted with 28 participants (14 child-parent dyads), comprising 9 female and 5 male children receiving cancer treatment and 8 mothers and 6 fathers (primary caregivers). All the participants were Muslims and hailed from diverse ethnic backgrounds, and most belonged to middle socioeconomic backgrounds. Thematic analysis was performed using Braun and Clarke's (2006) framework, which revealed four themes: (1) Stress, Fears, and Optimism; (2) Reactions to Restrictions; (3) Adaptation and Coping; and (4) Support Structure and Mechanisms. The findings indicated that children's and parents' daily lives were affected in various ways during the children's cancer journey. They faced several challenges which impacted their well-being. Particularly, the children considered their symptoms as restrictions in the way of carrying out their routine lives. However, children and parents also elaborated on using different coping strategies, such as play, reminiscing the past, incorporating religious practices into their daily routines, and keeping a family-centred approach towards the child's care. The parents also recommended that cancer-specialised services and support groups should be accessible. Conclusively, these findings are useful for healthcare providers in giving family-centred care to afflicted families and devising innovative interventions that address the needs of children with cancer and improve their quality of life.

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来源期刊
CiteScore
6.80
自引率
6.20%
发文量
109
期刊介绍: QUALITATIVE HEALTH RESEARCH is an international, interdisciplinary, refereed journal for the enhancement of health care and to further the development and understanding of qualitative research methods in health care settings. We welcome manuscripts in the following areas: the description and analysis of the illness experience, health and health-seeking behaviors, the experiences of caregivers, the sociocultural organization of health care, health care policy, and related topics. We also seek critical reviews and commentaries addressing conceptual, theoretical, methodological, and ethical issues pertaining to qualitative enquiry.
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