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'Living in the Present' mindfulness for parents of children with skin conditions: a single group case series.
Behav Cogn Psychother
November 2024
School of Psychology, Cardiff University, Cardiff, UK.
Article Synopsis
- - Parents of children with skin conditions often experience high levels of stress, and current psychological support for these families is limited.
- - The 'Living in the Present' mindfulness program was tested on ten parents to see if it could lower stress levels and improve the quality of life for both parents and their children.
- - Results showed mixed improvements in stress and quality of life, with some participants benefiting while others struggled with anxiety, indicating the need for more thorough research on such interventions.
Living with ichthyosis: a journey through the years.
Clin Exp Dermatol
December 2024
Department of Dermatology, Royal Victoria Hospital, Belfast Health and Social Care Trust, Belfast, UK.
Patient-Reported Burden of Severe Alopecia Areata: First Results from the Multinational Alopecia Areata Unmet Need Survey.
Clin Cosmet Investig Dermatol
March 2024
Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Department of Dermatology, Venereology and Allergology, Berlin, Germany.
Purpose: Alopecia areata (AA) is an autoimmune disease characterized by hair loss that has significant psychosocial implications. This study aims to describe the patient-reported burden of severe AA, coping mechanism and information needs using data from the multinational AA Patient Satisfaction and Unmet Need Survey.
Patients And Methods: Participants with current or previous ≥50% scalp hair loss (n = 747) were recruited from 11 countries and completed a web-based survey that assessed demographics, clinical characteristics, disease burden and psychosocial impact.
Evaluating the challenges and needs of parents caring for children with Williams syndrome: A preliminary study from Poland.
Res Dev Disabil
February 2024
Department of Organization and Management in Health Care, Poznan University of Medical Sciences, Poznań, Poland.
Article Synopsis
- A study in Poland explored the experiences of 32 caregivers of children with Williams syndrome (WS), revealing significant challenges they face in daily life.
- Caregivers reported issues such as managing their child's behaviors and health, leading to fatigue, mental health decline, and difficulties in personal relationships.
- Despite acknowledging positive aspects of raising a WS child, many parents experienced role overload and a lack of support from the healthcare system, impacting their overall well-being and social life.
A Unique Case of Harlequin Ichthyosis in the Tertiary Health Care System in a Rural Area.
Cureus
August 2023
Internal Medicine, Bhaarath Medical College & Hospital, Chennai, IND.
Article Synopsis
- Harlequin ichthyosis (HI) is a rare and severe genetic disorder caused by mutations in the ABCA12 gene, leading to abnormal skin development characterized by thick, diamond-shaped plates of keratinized skin.
- Affected infants typically show symptoms at birth, including tight skin, deep cracks, and increased risks for complications like breathing and feeding challenges, infections, dehydration, and temperature issues.
- While HI has a high mortality rate, especially in newborns, early detection and better understanding of the condition can improve management and quality of life for those affected.
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