Sajjad Sehrish, Barolia Rubina, Gul Raisa B
School of Nursing and Midwifery, The Aga Khan University, Karachi, Pakistan.
College of Nursing, Shifa Tameer-e-Millat University, Islamabad, Pakistan.
Qual Health Res. 2025 Feb;35(2):174-189. doi: 10.1177/10497323241255636. Epub 2024 Aug 7.
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.
癌症患儿及其父母作为个体的生活经历在文献中已有详尽记载。然而，在巴基斯坦，对于他们作为亲子二元组在这些孩子生活质量方面的经历却知之甚少。因此，这项研究是在巴基斯坦以家庭为中心的社会背景下进行的。对28名参与者（14个亲子二元组）进行了深入访谈，其中包括9名接受癌症治疗的女童和5名男童，以及8名母亲和6名父亲（主要照顾者）。所有参与者均为穆斯林，来自不同的种族背景，且大多数属于中等社会经济背景。采用布劳恩和克拉克（2006年）的框架进行了主题分析，揭示了四个主题：（1）压力、恐惧和乐观；（2）对限制的反应；（3）适应与应对；（4）支持结构与机制。研究结果表明，在孩子的癌症治疗过程中，孩子和父母的日常生活在各个方面都受到了影响。他们面临着若干影响其幸福感的挑战。特别是，孩子们认为他们的症状是日常生活的限制因素。然而，孩子和父母也阐述了使用不同的应对策略，如玩耍、回忆过去、将宗教活动融入日常生活，以及对孩子的护理采取以家庭为中心的方法。父母们还建议应提供癌症专科服务和支持小组。总之，这些研究结果有助于医疗保健提供者为患病家庭提供以家庭为中心的护理，并设计创新干预措施，以满足癌症患儿的需求并提高他们的生活质量。
