Nahal Maha Sudki Hmeidan, Wigert Helena, Imam Asma, Axelsson Åsa B
Faculty of Nursing, College of Health Professions, Al-Quds University, Abu Dies Campus, Jerusalem, Palestine.
Faculty of Nursing, Institute of Health and Care Sciences, Sahlgrenska Academy at Gothenburg University and Division of Neonatology, Sahlgrenska University Hospital, Gothenburg, Sweden.
Disabil Rehabil. 2022 Sep;44(19):5479-5486. doi: 10.1080/09638288.2021.1936660. Epub 2021 Jun 9.
To assess self-perceived health and sense of coherence (SOC) in adolescents with spina bifida (SB) in the West Bank, Palestine, compared to a healthy reference group. Further, to assess the association between impairment levels in the adolescents with SB and their self-perceived health and SOC.
Fifty adolescents with SB and 150 healthy adolescents completed measures of self-perceived health - the Pediatric Quality of Life Inventory (PedsQL 4.0) - and SOC. The rehabilitation center nurses identified the physical impairments of the adolescents with SB from their medical records, and classified them by impairment severity.
Adolescents with SB reported lower self-perceived health (PedsQL median 55, IQR 42-67), than the reference group (median 85, IQR 74-90), < 0.001, and lower SOC (median 47, IQR 44-50) than the reference group (median 55, IQR 44-61), < 0.001. Impairment level was inversely associated with both self-perceived health and SOC.
The low self-perceived health and SOC among adolescents with SB in Palestine indicate the need for collaboration between policy makers and providers to improve these adolescents' physical and social environment and to promote the rehabilitation services provided for them.Implications for rehabilitationThe low self-perceived health and SOC among adolescents with SB in Palestine highlight the need to develop appropriate interventions to promote their health, independency, and self-care management.Collaboration of the caregivers and health care providers is required to develop, implement, and evaluate intervention programs that might promote coping abilities of the adolescents with SB.A multidisciplinary approach is needed to set goals that have a meaningful impact on social, emotional, behavioral, and educational conditions of the adolescents with SB and in different settings, for example, home, school, and community.The environment in Palestine presents barriers to the social engagement of adolescents with SB, and new ways are needed to enhance their participation in the society to promote their self-concept and wellbeing.
与健康对照组相比，评估巴勒斯坦约旦河西岸患有脊柱裂（SB）的青少年的自我感知健康和连贯感（SOC）。此外，评估患有SB的青少年的损伤程度与其自我感知健康和SOC之间的关联。
50名患有SB的青少年和150名健康青少年完成了自我感知健康测量——儿童生活质量量表（PedsQL 4.0）——以及SOC测量。康复中心的护士从病历中确定了患有SB的青少年的身体损伤情况，并根据损伤严重程度对他们进行了分类。
患有SB的青少年报告的自我感知健康水平（PedsQL中位数55，四分位间距42 - 67）低于对照组（中位数85，四分位间距74 - 90），P < 0.001，且SOC（中位数47，四分位间距44 - 50）低于对照组（中位数55，四分位间距44 - 61），P < 0.001。损伤程度与自我感知健康和SOC均呈负相关。
巴勒斯坦患有SB的青少年自我感知健康和SOC较低，这表明政策制定者和服务提供者需要合作，以改善这些青少年的身体和社会环境，并促进为他们提供的康复服务。康复启示巴勒斯坦患有SB的青少年自我感知健康和SOC较低，这突出表明需要制定适当的干预措施来促进他们的健康、独立性和自我护理管理。需要护理人员和医疗服务提供者合作，制定、实施和评估可能促进患有SB的青少年应对能力的干预项目。需要采用多学科方法来设定目标，这些目标要对患有SB的青少年在不同环境（如家庭、学校和社区）中的社会、情感、行为和教育状况产生有意义的影响。巴勒斯坦的环境给患有SB的青少年的社会参与带来了障碍，需要新的方法来增强他们对社会的参与，以提升他们的自我概念和幸福感。
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