Ignite Creation Date:
2024-05-06 @ 4:02 PM
Last Modification Date:
2024-10-26 @ 2:02 PM
Study NCT ID:
NCT04844697
Status:
COMPLETED
Last Update Posted:
2023-03-01
First Post:
2021-04-12
Brief Title:
Resilience and Coping in a Rare Skeletal Disease Population to Face Coronavirus COVID-19 Outbreak Distress a Longitudinal Study
Sponsor:
Istituto Ortopedico Rizzoli
Organization:
Istituto Ortopedico Rizzoli
Study Overview
Official Title:
Exploring Resilience and Coping Strategies of Young Population in Response to Severe Acute Respiratory Syndrome Corona Virus 2 SARS-CoV-2 Outbreak a Longitudinal Study in a Cohort of Patients Affected by Rare Skeletal Disorders
Status:
COMPLETED
Status Verified Date:
2023-02
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
RELOAD
Brief Summary:
In the COVID-19 outbreak context people living with rare diseases have been highly troubled with anxiety loneliness and depression The project evaluates resilience and coping strategies to address pandemic impact by discussion in a dedicated focus group using a web-based platform The goal is to improve in a sustainable manner the coping skills and psychological well-being of children adolescents and young adults affected by rare skeletal diseases
Detailed Description:
March 11th 2020 the World Health Organization WHO declared the SARS-CoV-2 pandemic accordingly with the spread and size of the infection
The restrictions implemented by the governments have substantially changed peoples lifestyles facilitating the emergence of emotions such as fear anxiety and a sense of loneliness
The age groups most involved by these burdens have been childhood adolescence and young adults These groups have experienced dramatic changes in their daily life in order the relational educational and social networks Nonetheless these links outline the ideal environment for the development of resilience and the promotion of coping strategies to face traumatic events
These lifestyle challenges and their consequences are even more evident in the context of the rare diseases since the outbreak containment measures have emphasized the troubles with which people affected by these conditions are daily forced to confront in terms of access to care and treatments resulting in increased stress and anxiety
The current phase represents a sensitive step for the resumption of the activities in charge of the health and social service aimed at the citizens and especially to people with special needs such as people suffering from rare diseases
The pandemic experience has promoted new forms of meeting and contact between individuals using web-based platforms playing a fundamental role in preserving the community and sociality dimensions
In this scenario the rare diseases could be an attractive model since the pandemic impinges over their bio-psycho-social characteristics at different levels Resilience and coping strategies adopted by rare diseases patients could configure as an exemplum to face the psychological distress resulting from anti-pandemic measures suggesting new approaches of taking charge by health service
This study evaluates resilience and coping strategies to address pandemic impact by discussion in a dedicated focus group using a web-based platform The goal is to improve in a sustainable manner the coping skills and psychological well-being of children adolescents and young adults affected by rare skeletal diseases
The restrictions implemented by the governments have substantially changed peoples lifestyles facilitating the emergence of emotions such as fear anxiety and a sense of loneliness
The age groups most involved by these burdens have been childhood adolescence and young adults These groups have experienced dramatic changes in their daily life in order the relational educational and social networks Nonetheless these links outline the ideal environment for the development of resilience and the promotion of coping strategies to face traumatic events
These lifestyle challenges and their consequences are even more evident in the context of the rare diseases since the outbreak containment measures have emphasized the troubles with which people affected by these conditions are daily forced to confront in terms of access to care and treatments resulting in increased stress and anxiety
The current phase represents a sensitive step for the resumption of the activities in charge of the health and social service aimed at the citizens and especially to people with special needs such as people suffering from rare diseases
The pandemic experience has promoted new forms of meeting and contact between individuals using web-based platforms playing a fundamental role in preserving the community and sociality dimensions
In this scenario the rare diseases could be an attractive model since the pandemic impinges over their bio-psycho-social characteristics at different levels Resilience and coping strategies adopted by rare diseases patients could configure as an exemplum to face the psychological distress resulting from anti-pandemic measures suggesting new approaches of taking charge by health service
This study evaluates resilience and coping strategies to address pandemic impact by discussion in a dedicated focus group using a web-based platform The goal is to improve in a sustainable manner the coping skills and psychological well-being of children adolescents and young adults affected by rare skeletal diseases
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None