Dataset Information

Medical, welfare, and educational challenges and psychological distress in parents caring for an individual with 22q11.2 deletion syndrome: A cross-sectional survey in Japan.

ABSTRACT: Parents of children with 22q11.2 deletion syndrome (22q11DS) experience distress not only due to multimorbidity in the patients, but also due to professionals' lack of understanding about 22q11DS and insufficient support systems. This study investigated relationships between medical, welfare, and educational challenges and parental psychological distress. A cross-sectional survey was conducted on primary caregivers of children with 22q11DS. Participants included 125 parents (114 mothers, 91.2%; average age = 44.3 years) who reported their challenges, psychological distress, and child's comorbidities of 22q11DS. Results showed that the difficulty in going to multiple medical institutions (β = 0.181, p < 0.05) and lack of understanding by welfare staff and insufficient welfare support systems for 22q11DS (β = 0.220-0.316, all p < 0.05) were associated with parental psychological distress, even after adjusting for child's comorbidities. In the subsample of parents whose child attended an educational institution, inadequate management in classroom and mismatch between service and users in educational settings were associated with psychological distress (β = 0.222-0.296, all p < 0.05). This study reveals the importance of assessing not only severity of comorbidities in 22q11DS, but also the medical, welfare, and educational challenges for parental mental health.

SUBMITTER: Morishima R

PROVIDER: S-EPMC9290134 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature

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Medical, welfare, and educational challenges and psychological distress in parents caring for an individual with 22q11.2 deletion syndrome: A cross-sectional survey in Japan.

Morishima Ryo R Kumakura Yousuke Y Usami Satoshi S Kanehara Akiko A Tanaka Miho M Okochi Noriko N Nakajima Naomi N Hamada Junko J Ogawa Tomoko T Ando Shuntaro S Tamune Hidetaka H Nakahara Mutsumi M Jinde Seiichiro S Kano Yukiko Y Tanaka Kyoko K Hirata Yoichiro Y Oka Akira A Kasai Kiyoto K

American journal of medical genetics. Part A 20210903 1

Parents of children with 22q11.2 deletion syndrome (22q11DS) experience distress not only due to multimorbidity in the patients, but also due to professionals' lack of understanding about 22q11DS and insufficient support systems. This study investigated relationships between medical, welfare, and educational challenges and parental psychological distress. A cross-sectional survey was conducted on primary caregivers of children with 22q11DS. Participants included 125 parents (114 mothers, 91.2%; ...[more]

PMID: 34480405

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Project description:BackgroundPublic health emergencies and epidemics shatter the assumptions of the world as a safe place. Healthcare workers are at the forefront of such pressures resulting from a persistent threat to their safety and well being. It is therefore important to study such mechanisms that can influence and predict the psychological distress of nurses OBJECTIVES: While there is an increasing number of studies on positive outcomes of leadership styles, their influence on curbing unwanted adverse outcomes is scarce. This study aims to observe the influence of an inclusive leadership style on psychological distress while assessing the mediating role of psychological safety. It uses the theoretical lens of job demands-resources theory and the theory of shattered assumptions to develop and test hypotheses.DesignCross-Sectional Study with Temporal Separation SETTINGS AND PARTICIPANTS: The researchers recruited 451 on-duty registered nurses from 5 hospitals providing patient care during the highly infectious phase of COVID-19 in January 2020 in Wuhan city, the epicentre of the outbreak in China METHODS: After obtaining permission from hospital administration, data were collected through an online questionnaire survey in three stages with temporal separation to avoid common method bias. Partial least square structural equation modelling was used to analyze data. The study controlled for effects of age, gender, experience, working hours and education.ResultsHypothesized relationships proved significant. Inclusive leadership has an inverse relationship with psychological distress with a strong path-coefficient. Psychological safety mediates the relationship between inclusive leadership and psychological distress while explaining 28.6% variance. Multi-group analysis results indicate no significant differences between respondents based on these control variables CONCLUSIONS: Recurring or prolonged experiences of stress and anxiety at the workplace, without a mechanism to counter such effects, can culminate into psychological distress. Inclusive leadership style can serve as such a mechanism to curb psychological distress for healthcare workers by creating a psychologically safe environment.

Dataset Information

Medical, welfare, and educational challenges and psychological distress in parents caring for an individual with 22q11.2 deletion syndrome: A cross-sectional survey in Japan.

Publications

Medical, welfare, and educational challenges and psychological distress in parents caring for an individual with 22q11.2 deletion syndrome: A cross-sectional survey in Japan.

Similar Datasets

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