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1.
Eur J Pediatr ; 2024 Jul 05.
Article in English | MEDLINE | ID: mdl-38965081

ABSTRACT

Developmental and epileptic encephalopathies (DEEs) cause disability and dependence affecting both children and the family. The aim of the study was to describe the perspective of parents of children with DEEs regarding the impact of the disease on the family. We carried out a qualitative study based on the interpretivist paradigm. Twenty-one participants were selected using purposive sampling. Parents of children with DEEs of SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included. In-depth interviews and researcher notes were used for data collection. A thematic analysis was performed on the data. Three themes were identified in the results: (a) Assuming conflicts and changes within the couple, causing them to distance themselves, reducing their time and intimacy and leading them to reconsider having more children; (b) impact of the disorder on siblings and grandparents, where siblings perceived DEE as a burden in their lives, felt neglected, and needed to grow and mature alone; conversely, the grandparents suffered for their grandchildren and the parents, in addition to perceiving that their health worsened, and (c) reconciling the care of the child with family life and work; this led the parents to share tasks, abandon or reduce working hours and ask for help.Conclusions: Caring for a child with DEE can result in neglect of social, psychological, emotional, recreational, educational, or occupational needs and obligations that ultimately impact all family members. What is Known: • Children with DEE may develop seizures and experience developmental and cognitive problems. • Caring for a child with DEE has a social and psychological impact on the entire family.

Caring for a child with DEE has a social and psychological impact on the entire family.
What is New: • Within the couple, there are tensions due to a lack of time, which could be alleviated by alternating childcare duties. • It is necessary to implement programs that address the physical and mental needs of the couple, as well as cater to the needs of siblings and alleviate the suffering of grandparents.

2.
Healthcare (Basel) ; 12(7)2024 Mar 30.
Article in English | MEDLINE | ID: mdl-38610176

ABSTRACT

Taste and smell disorders are common symptoms of SARS-CoV-2 acute infection. In post-COVID-19 condition, symptoms can persist leading to disruption in patients' lives, to changes in their coping skills, and to the need to develop strategies for everyday life. This study aimed to describe the perspective of a group of patients with Long-COVID-19, a condition where loss of taste and/or smell was the most predominant symptom. A qualitative descriptive study was conducted. Participants who had suffered SARS-CoV-2 infection and had Long-COVID-19 loss of taste and/or smell were recruited. Purposive sampling was applied, and participants were recruited until data redundancy was reached. In-depth interviews were used for data collection and thematic analysis was applied. Twelve COVID-19 survivors (75% women) were recruited. The mean age of the participants was 55 years, and the mean duration of post-COVID-19 symptoms was 25 months. Three themes were identified: (a) Living with taste and smell disorders, describing the disorders they experience on a daily basis, how their life has changed and the accompanying emotions, (b) Changes and challenges resulting from the loss of taste and smell, changes in habits, self-care and risk in certain jobs or daily activities, (c) Coping with taste and smell disorders, describing the daily strategies used and the health care received. In conclusion, Long-COVID-19 taste and/or smell disorders limit daily life and involve changes in habits, meal preparation, and the ability to detect potentially dangerous situations.

3.
J Hand Ther ; 36(4): 817-824, 2023.
Article in English | MEDLINE | ID: mdl-37591728

ABSTRACT

BACKGROUND: Carpal tunnel syndrome (CTS) may lead to significant work limitations, especially in female manual workers. There is scarce evidence on the perspective of female manual workers with CTS. PURPOSE: To explore the perspective of female workers who suffer from CTS regarding triggers, coping strategies, and economic impact. STUDY DESIGN: A qualitative phenomenological study was conducted involving 18 manual workers with CTS diagnosed by the neurology service of a public hospital. METHODS: Purposive sampling was applied, and data were collected using in-depth interviews and researchers' notes. An inductive thematic analysis was applied to identify themes reflecting the participants' experience. Guba and Lincoln criteria were applied to establish the trustworthiness of the data. RESULTS: The mean age of participants was 40.06 years (SD 9.86). Four themes were identified: (a) coping with work limitations; (b) work activities that aggravate symptoms; (c) relationships at work; and (d) the economic burden of CTS. The effect of work on CTS, daily constraints, work situations that trigger the symptoms, and the strategies used by participants to adapt to their work are described. In addition, they recounted how relationships with managers and coworkers are modified and how CTS affects family finances. CONCLUSIONS: The findings describe aggravating factors among working women, coping strategies used, and the social and occupational impact of CTS.


Subject(s)
Carpal Tunnel Syndrome , Humans , Female , Adult , Carpal Tunnel Syndrome/diagnosis , Coping Skills , Workplace , Research Design , Risk Factors
4.
Dermatology ; 235(2): 156-163, 2019.
Article in English | MEDLINE | ID: mdl-30650420

ABSTRACT

OBJECTIVE: Dermal fillers are an important tool in the field of aesthetic dermatology. Fillers are relatively noninvasive and easy to use but are not free of secondary complications. The main complications are vascular and are due to either the compression of an artery or the direct introduction of the product into the arterial lumen. The aim of this study is to provide an overview of the vascular territories of the face to avoid many possible complications when using facial fillings. Anatomical localization of the main arterial supply to the face has been described to assess the risk of vascular injury. METHODS: The authors dissected 17 hemifaces of embalmed adult cadavers that had previously been injected, through the common carotid artery, with latex containing a red dye. RESULTS: A topographic distribution was generated by facial regions following a clinical approach from where the facial fillings were placed and related to the pathways of the arteries. Following these criteria, we established 8 topographic regions (I-VIII) that indicate the main vascular problems of each of these regions. Detailed anatomical localizations of the main arteries in these topographic regions of the face and their relationships are described. CONCLUSIONS: The highest index of vascular lesions and especially visual alterations occurred for fillings of the upper third of the face. To prevent and avoid this type of lesion, it is advisable to avoid, as much as possible, treatments with filling materials in the upper third of the face, mainly including the glabellar and nasal region (III) and supraorbital region (VIII).


Subject(s)
Dermal Fillers/adverse effects , Face/blood supply , Skin/blood supply , Cadaver , Cheek/blood supply , Dissection , Eye/blood supply , Forehead/blood supply , Humans , Lip/blood supply , Nose/blood supply , Rhytidoplasty/adverse effects
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