La experiencia del diagnóstico y la atención en progenitores de niños diagnosticados con el Síndrome de Phelan-McDermid: Un estudio cualitativo.

OBJETIVO: El Síndrome de Phelan-McDermid (SPMD) es una enfermedad rara, infradiagnosticada y sin cura. El propósito de este estudio fue explorar la experiencia de los progenitores con niños diagnosticados con el Síndrome de Phelan-McDermid, en relación con el proceso de diagnóstico, el tratamiento y la atención médica. MÉTODO: Se realizó un estudio cualitativo descriptivo. Los participantes fueron reclutados mediante un muestreo intencional no probabilístico. En total, se incluyeron 32 progenitores con hijos con SPMD. Se utilizaron entrevistas en profundidad y notas de campo de los investigadores. Se realizó un análisis temático inductivo. RESULTADOS: Se identificaron cinco temas: "El proceso diagnóstico", se describe el proceso diagnóstico y la forma de comunicarlo a los progenitores; "El tratamiento y sus expectativas" describe las expectativas y esperanzas construidas sobre un futuro tratamiento; "Planificación familiar", describe como los progenitores se enfrentan al consejo genético, para la planificación de tener más hijos tras el diagnóstico de SPMD; "El mundo de la discapacidad", describe la entrada de los progenitores en el entorno de la dependencia y discapacidad tras el diagnóstico; "La economía familiar", muestra las dificultades económicas debido al elevado coste de las terapias y los productos del cuidado diario. INTERPRETACIÓN: Nuestros resultados proporcionan una visión de cómo el diagnóstico y sus consecuencias son experimentados por los progenitores con niños con SPMD. Estos resultados pueden ser utilizados por los profesionales de la salud para ayudar y apoyar a los progenitores.

Relatives experiences during the COVID-19 pandemic: A qualitative study set in Spanish locked-down nursing homes.

AIM: To describe the experience of relatives of residents with dementia residing in locked-down nursing homes during the first outbreak of the COVID-19 pandemic, concerning their relationships with nurses and the nursing care applied. METHODS: A qualitative descriptive study was carried out and purposive sampling was applied. Participants were first- and second-degree relatives of residents with dementia, who lived permanently in a nursing home and who were admitted prior to the COVID-19 pandemic. Sixteen participants, of which 10 were women (mean age 57.1 years), participated in the study. Data were collected through in-depth interviews and reflective notes, using a digital platform. An inductive thematic analysis was carried out. This study was approved by the University Research Ethics Committee and followed the COREQ guidelines. The Guba and Lincoln criteria (credibility, transferability, dependability, and confirmability) were applied for quality control. RESULTS: Families' relationships with nurses before the first wave relied on closeness and involvement in care. Families had difficulty maintaining a close relationship with nurses due to turnover and lack of time. The nursing care applied in the first wave resulted in limited family access to the nursing home, limited contact time with residents, and limited close physical contact. CONCLUSIONS: The first outbreak has affected the relationships among relatives and nurses in nursing homes. Changes should be made in the organization of care within nursing homes in order to adapt to restrictions due to the pandemic.

Effects of COVID-19 home confinement on sleep in children: A systematic review.

Our main aim was to examine the evidence of the effects of coronavirus disease confinement on the sleep of children aged 12 years and younger. A systematic review was conducted following the recommendations for Preferred Reporting Items for Systematic Reviews and Meta-Analyses. MEDLINE, Cumulative Index for Nursing and Allied Health Literature, Excerpta Medica Database, Psychological Information Database, and Web Of Science were systematically searched between the period of January 2020 and March 2021. The quality assessment was analysed with the Newcastle-Ottawa quality assessment scale and the National Institutes of Health quality assessment tool for observational cohort and cross-sectional studies. The appraisal tool for cross-sectional studies was applied to cross-sectional studies and each longitudinal study was assessed with the critical appraisal skills programme. Data analysis was carried out through a narrative review. Eight studies were included in the review. Seven studies reported changes in sleep routines and five studies focused on sleep disturbances during confinement. The most important findings were a longer duration of sleep time, an increase in sleep latency, and daytime sleepiness. Whether or not the adverse changes to sleep patterns and bedtime routines seen during the home confinement period have any long-term consequences for children's sleep and daytime functioning remains unknown.

Female Family Caregivers' Experiences During Nursing Home Admission: A Phenomenological Qualitative Study.

The experience of nursing home (NH) admission has a significant impact on older adults and their relatives. The aim of the current study is to describe the life experiences of female family caregivers (N = 20) after long-stay NH admission of their relative. A qualitative phenomenological approach was followed with purposeful sampling. Data were collected over 18 months using unstructured interviews, letters, and diaries and were analyzed using systematic text condensation analysis. Three themes emerged: The Value of Experience: Deciding on Admission and Defending One's Criteria; Living on Two Sides of the Same Coin; and Maintaining Contact. Results provide insight into female caregivers' experiences of NH admission, which may improve relationships established between female family caregivers and NH staff and help inform the decision-making process. [Journal of Gerontological Nursing, 45(6), 33-43.].

Expressing sexuality in nursing homes. The experience of older women: A qualitative study.

In nursing homes, a number of barriers to the expression of sexuality exist, such as the lack of privacy, certain attitudes on behalf of the staff and the family, the lack of a sexual partner, and physical limitations. The aim of this study was to describe the lived experience of sexuality in elderly Spanish women residing in nursing homes. A qualitative phenomenological approach was followed. Data were collected over an 18-month period between 2013 and 2015. Purposeful sampling was conducted with Spanish residents in nursing homes in Madrid. Data were collected using unstructured and semi-structured interviews. The data were analyzed using thematic analysis. Twenty female residents participated. Three main themes emerged from the data: a) expressing sexuality, b) sexuality as a duty and c) respecting vows. Female residents reported key elements influencing how they manage their sexuality in Nursing Homes. These results serve to improve our understanding regarding the expression of sexuality in older female nursing home residents.

Experiencing the body during pregnancy: A qualitative research study among Spanish sportswomen.

The aim of the current qualitative phenomenological study was to describe the body experiences during pregnancy among Spanish elite sportswomen. Twenty Spanish sportswomen with the following criteria were included: (1) aged between 18 and 65 years; (2) had been pregnant during their professional sporting career; and (3) after the end of their pregnancy, had returned to their professional sports career for at least 1 year. A qualitative thematic analysis was conducted. Data were collected from May 2010 to April 2012 using in-depth personal interviews, investigator's field notes, and extracts from the participants' personal letters. Identified themes included: (1) a new body; (2) body control; (3) to feel their bodies and communicate with them; and (4) body's beauty ideal. Understanding the meaning of the body experience for elite Spanish sportswomen might provide us with deeper insight into their expectations and might help in the development of training systems focused on them.

[Effectiveness of occupational therapy and other non-pharmacological therapies in cognitive impairment and Alzheimer's disease]. / Eficacia de la terapia ocupacional y otras terapias no farmacológicas en el deterioro cognitivo y la enfermedad de Alzheimer.

A review is presented on the existing knowledge about the usefulness of the occupational therapy in the non-pharmacological treatment of Alzheimer's disease. After conducting a literature search of the period 2010-2015, 25 articles that met the inclusion criteria were selected. The evidence obtained showed the efficiency and effectiveness of OT in delaying the progression of various disorders, especially when structured home OT programs are used. These programs should include aerobic and strengthening, sensory stimulation, and cognitive and memory training exercises based on learning without mistakes. These have shown benefits in the performance of activities of daily living, cognitive and emotional functioning. The importance is stressed of the combined and individual household level intervention and caregiver education. Finally, the need for more studies on the effectiveness of long-term sensory stimulation is highlighted.