EPIUnit - Instituto de Saúde Pública, Universidade do Porto, Rua das Taipas, n° 135, 4050-600, Porto, Portugal.
Departamento de Ciências da Saúde Pública e Forenses e Educação Médica, Faculdade de Medicina, Universidade do Porto, Al. Prof. Hernâni Monteiro, 4200 - 319, Porto, Portugal.
Health Qual Life Outcomes. 2018 Sep 10;16(1):178. doi: 10.1186/s12955-018-1011-y.
Knowledge about parental quality of life (QoL) is paramount to family-centred and integrated healthcare on prematurity, but evidence is limited. We aimed to explore mothers' and fathers' perspectives about their QoL 4 months after a very preterm childbirth.
This is a cross-sectional mixed methods study using a convergent design. Parents of very preterm infants were systematically recruited at all level III neonatal intensive care units in the Northern health region of Portugal for one year. Four months after childbirth, 61 mothers and 56 fathers filled-in the World Health Organization Quality of Life - BREF Inventory, and 26 couples were interviewed. Linear regression models were computed to assess the association between participants' characteristics and the QoL. Qualitative data were thematically analysed.
A quantitative analysis revealed that the perception of QoL was not significantly different by gender. QoL scores increased slightly from the environment (Mean (SD): 72.1 (14.2)) to the psychological domains (Mean (SD): 78.7 (14.4)). All scores were influenced by psychological characteristics. Socioeconomic position influenced both parents' perceptions concerning the environment domain, and maternal physical and psychological QoL. Infant-related factors were associated with overall QoL among women and with the physical, psychological, social and environment domains among men. Qualitative findings indicated accommodation mechanisms that intertwine the focus on constraining factors (surveillance, sleep disturbances, non-supportive healthcare policies, hygienization) with facilitating factors (social support, accessibility/quality of healthcare, opportunities for developing parental skills). These processes were anchored in child-centredness and a framework that construct hierarchies of hope and expectations about infant's health and development.
To capture parental QoL using mixed methods raises awareness for developing intersectoral family-centred policies, integrated health services and focused-interventions to decrease the disempowering effects of surveillance and hygienization.
了解父母的生活质量（QoL）对于早产儿的以家庭为中心和综合医疗至关重要，但证据有限。我们旨在探讨母亲和父亲在极早产儿出生后 4 个月时对自己生活质量的看法。
这是一项使用收敛设计的横截面混合方法研究。在葡萄牙北部卫生区的所有三级新生儿重症监护病房中，对早产儿的父母进行了系统招募，持续了一年。在分娩后 4 个月，61 名母亲和 56 名父亲填写了世界卫生组织生活质量 - BREF 量表，26 对夫妇接受了采访。计算线性回归模型以评估参与者特征与 QoL 之间的关联。对定性数据进行主题分析。
定量分析表明，性别对 QoL 的感知没有显着差异。QoL 评分从环境（均值（SD）：72.1（14.2））略有增加到心理领域（均值（SD）：78.7（14.4））。所有分数都受到心理特征的影响。社会经济地位影响父母双方对环境领域的看法，以及母亲的身体和心理 QoL。与婴儿相关的因素与女性的整体 QoL 以及男性的身体、心理、社会和环境领域相关。定性研究结果表明，适应机制交织了对限制因素（监测、睡眠障碍、非支持性医疗保健政策、卫生化）和促进因素（社会支持、医疗保健的可及性/质量、发展父母技能的机会）的关注。这些过程以以儿童为中心为基础，并构建了关于婴儿健康和发育的希望和期望的层次结构。
使用混合方法捕捉父母的 QoL 意识，以制定以家庭为中心的跨部门政策、综合卫生服务和重点干预措施，减少监测和卫生化的削弱作用。
