Taib Fahisham, Beng Khoo Teik, Chan Lee Chee
Department of Paediatrics, Hospital Universiti Sains Malaysia, Kubang Kerian, Kelantan, Malaysia.
Department of Paediatrics, Hospital Tunku Azizah, Kuala Lumpur, Malaysia.
Indian J Palliat Care. 2021 Oct-Dec;27(4):483-489. doi: 10.25259/IJPC_3_21. Epub 2021 Nov 11.
Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to explore the challenges faced by parents with children who have complex neurological conditions, their coping strategies, needs, and expectations.
A semi-structured, in-depth interviews were conducted in the either Malay or English language among the parents of children with complex lifelong neurological conditions and have been on long-term in-patient hospital care. The interviews were audio-recorded and transcribed for thematic analysis. The qualitative study was conducted from October to November 2016 at the Paediatric Institute of Hospital Kuala Lumpur. Grounded theory was used to examine the qualitative data with inductive and deductive types of coding. The transcripts were read repeatedly to allow familiarity to the themes presented by the participants. Further discussions were conducted among the researchers to triangulate the information.
A total of 11 parents were interviewed for this study. The thematic analysis resulted in 8 challenges: Physical wellbeing, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual. Coping strategies comprised problem focused issues related to the key challenges in the caregivers' context. Similar to the needs and expectations, the key themes were derived from the key understandings of the challenges and looking at the palliative care impacts for these children.
There are various challenges faced by parents of children with life-limiting neurological disorders. Physical, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual Wellbeing can be a platform for the assessment of the caregivers' needs and the planning for palliative care support.
那些孩子患有复杂的终身性和危及生命的神经疾病的父母，在其作为照顾者的一生中经历了诸多压力和焦虑。然而，这方面的信息仍然非常有限。本研究旨在探讨孩子患有复杂神经疾病的父母所面临的挑战、他们的应对策略、需求及期望。
对孩子患有复杂的终身性神经疾病且长期住院治疗的父母，以马来语或英语进行了半结构化的深入访谈。访谈进行了录音，并转录以便进行主题分析。该定性研究于2016年10月至11月在吉隆坡医院儿科研究所开展。运用扎根理论，通过归纳式和演绎式编码来分析定性数据。反复阅读转录文本，以便熟悉参与者所呈现的主题。研究人员之间进一步展开讨论，以对信息进行三角互证。
本研究共访谈了11位父母。主题分析得出了8个挑战：身体健康、环境、人际关系、经济、职业、理性、心理和精神。应对策略包括与照顾者背景下的关键挑战相关的聚焦问题。与需求和期望类似，关键主题源自对挑战的关键理解，并着眼于这些孩子的姑息治疗影响。
患有危及生命的神经疾病的孩子的父母面临着各种各样的挑战。身体健康、环境、人际关系、经济、职业、理性、心理和精神健康可以作为评估照顾者需求以及规划姑息治疗支持的一个平台。
