Quality of life, socioeconomic and psychological concerns in parents of children with tuberous sclerosis complex, STXBP1 and SYNGAP1 encephalopathies: a mixed method study.

Background: Developmental and Epileptic Encephalopathies (DEEs) occur in childhood and are associated with severe epileptic seizures and neurological impairment. The aim of this study was to combine quantitative and qualitative methodologies to comprehensively describe factors related to quality of life, impact on the family and psychosocial factors in parents of children with TSC, STXBP1 and SYNGAP1 variants. Methods: A convergent parallel mixed design including parents of children with DEE. In the cross-sectional study, 20 parents (10STXBP1, five SYNGAP1, five TSC) were given questionnaires on quality of life, impact on the family and psychological factors. In the descriptive qualitative study, in-depth interviews were conducted with 18 parents (nine STXBP1, five TSC, four SYNGAP1) using a semi-structured questionnaire. A thematic analysis was carried out. The results of the two studies were combined by showing similarities and differences through tables, figures, accounts, and joint displays. Results: In terms of quality of life, the integrated results were consistent in highlighting the importance of family interaction, although in the qualitative section the influence of the relationship between the children's siblings, the relationship with health professionals and the difficulties in obtaining public aid were highlighted. In terms of impact, the integrated results show that the illness has a significant impact on the family; the financial burden is highlighted, and the experience of the illness is discussed in depth. Finally, the psychological aspects, symptoms such as anxiety, stress and strain, were consistent. Most of the participants reported sleep disturbance, as identified in the questionnaire, although not mentioned in the interviews. Conclusions: The combined results of the mixed method provide an in-depth analysis of the impact of DEEs on parents of children with STXBP1, SYNGAP1 and TSC.

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.

Understanding the Professional Care Experience of Patients with Stroke: A Qualitative Study Using In-Depth Interviews.

Background: Professional support and communication stimulates the professional-patient relationship and supports the recovery of stroke patients. Objectives: To describe the perspectives of patients with stroke regarding communication, professional support, and their ability to participate in processes and integrated care with health providers. Methods: A qualitative study was conducted. A purposeful sampling and snowball-technique were used. Patients diagnosed with moderate or severe stroke in the post-acute or chronic stage of the disease were included. Data collection consisted of in-depth interviews and researcher field notes. A thematic analysis was performed. Results: Thirty-one patients were included. Three themes were identified: 1) Providing support, with four categories, professional behavior, personalized attention, the heart of the professional and building a bond with the patient; 2) Facilitating communication, with three categories, the patient as the recipient, the content of the message and the channel, and the professional as the person that conveys the message; and 3) Promoting participation, with two categories, barriers, and incentives to participate. Conclusions: When providing support, professionals should consider communicating information and encouraging the participation of stroke patients for integrated care.

Person-centred care in individuals with stroke: a qualitative study using in-depth interviews.

BACKGROUND: Person-centred care (PCC) has considerable effects on the clinical practice of health professionals. The purpose of this study was to describe the perspectives and perceived barriers and enablers of individuals with stroke regarding the PCC model in stroke rehabilitation. METHODS: A qualitative exploratory study was conducted based on an interpretive framework. Participants were recruited using non-probabilistic purposeful sampling and a snowball-technique strategy. The inclusion criteria consisted of: (a) individuals > 18 years, (b) diagnosed with moderate or severe stroke according to the National Institutes of Health Stroke Scale and (c) in the post-acute or chronic stage of the disease. In total, 31 individuals with stroke were included. In-depth interviews and researchers' field notes were used to collect the data. A thematic analysis was performed. Also, credibility, transferability, dependability and confirmability techniques were followed to establish trustworthiness of the data. RESULTS: Thirty-one individuals with stroke (11 women) were included. Three main themes were identified: (a) The person behind the "patient" label, recognizing the person beyond their illness and valuing their identity and individual characteristics, (b) The person at the centre of care, considering themselves as an active agent in their own care and respecting their preferences and expectations for their care process and (c) Training for PCC, providing health professionals with tools to achieve professional skills for the implementation and development of the PCC model. CONCLUSIONS AND SIGNIFICANCE: This paper describes relevant aspects that health professionals should consider when providing PCC in the context of the rehabilitation of individuals with stroke. Key messagesThe individuals' perspective regarding person-centred care (PCC) has considerable effects on the clinical practice of health professionals.Individuals with stroke describe how there is a person behind the "patient" label, with identity, needs and desire to participate in decision making.Training in the PCC model helps healthcare professionals identify the needs of individuals with stroke during rehabilitation.