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Aim: To explore the experience of parents of children diagnosed with Phelan–McDermid syndrome (PMS) with regard to the diagnostic process, treatment, and medical care. Method: A qualitative descriptive study was conducted. Participants were recruited using non‐probabilistic purposeful sampling. In total, 32 parents with children with PMS were included. In‐depth interviews and researcher field notes were used. An inductive thematic analysis was performed. Results: Five themes were identified: (1) the 'diagnostic process' describes the diagnostic process and how it is communicated to the parents; (2) 'treatment and expectations' describes the expectations and hopes placed on future treatment; (3) 'family planning' describes how parents deal with genetic counselling when planning to have more children after a diagnosis of PMS; (4) 'the world of disability' describes the entry of parents into an environment of dependency and disability after the diagnosis; (5) 'family's financial situation' highlights the financial difficulties due to the high cost of therapies and daily care products. Interpretation: Our results provide insight on how a diagnosis of PMS and its consequences are experienced by parents of children with PMS. These results can be used by health professionals to help and support parents. [ABSTRACT FROM AUTHOR]

Carpal tunnel syndrome (CTS) is a neuropathic pain condition characterised by pain, paresthesia, loss of strength and disability. To explore the experiences of women with CTS regarding the management of symptoms and limitations. A qualitative phenomenological study was conducted. Women with a clinical and electromyographic diagnosis of CTS recruited from the Neurology Department of a Public Hospital were included. Purposeful sampling was performed. Data were collected using in-depth interviews and researchers' field notes. Analysis proposed by Giorgi was used. A total of 18 women with CTS were included. Two themes emerged: a) Living with CTS symptoms and limitations: describing the symptoms experienced, triggers of their symptoms and how they define CTS. Also, describing the difficulties that they experience on a daily basis, at home when handling tools, communicating, driving, and at work; and b) developing daily strategies for managing limitations: developing potential daily strategies to overcome daily limitations and/or compensate for them, and seeking professional help. Current results provide insight on how symptoms and daily limitations are experienced by a group of women with CTS. These findings could help occupational therapists to understand the day-to-day difficulties and the reasons for developing certain strategies. [ABSTRACT FROM AUTHOR]

Aims: We aimed to investigate the perspective of primary care nurses on their role with patients who have chronic cardiovascular disease and to identify cultural elements shared by nurses caring for people with chronic cardiovascular disease. In primary care, the role of the nurse is essential to promote self‐efficacy in cardiovascular self‐care. Individuals with chronic cardiovascular disease need to integrate the disease into their life, together with the health recommendations for management and follow‐up. Methods: A qualitative, focused ethnographic study was conducted. Purposeful sampling was used to include nurses who were working in primary care during the study. Data collection took place between 20 January and 20 May 2014 and consisted of semi‐structured interviews. A thematic analysis was applied using the data. Results: Eleven participants were included. Cardiovascular care forces nurses to reflect on their identity and role in primary care. The relationship between the nurse and people with chronic cardiovascular disease is a complex process, which may cause nurses to feel a sense of failure and monotony in their work. Conclusions: Our findings may help to understand the role of the nurse and the care provided in patients with chronic cardiovascular disease. Summary statement: What is already known about this topic? Primary care nursing is necessary for the improvement of cardiovascular risk factors.Chronic cardiovascular patients need training in self‐care.The organizational culture confers different forms of care to patients. What this paper adds? The vision of the socio‐cultural role of the family and community nurse is shown regarding cardiovascular prevention.Information is provided on the differentiating approach to chronic cardiovascular patients in primary care.Our study reflects the influence of routine care in nursing consultations, and what it entails to provide improved nursing care in cardiovascular patients. The implications of this paper: These findings can be used to understand the need to change the focus of nursing care in cardiovascular prevention.The implementation of a follow‐up protocol for the care of cardiovascular patients can improve patients' self‐care and reduce monotony in the nursing consultation.Further training and research is necessary regarding comprehensive chronic cardiovascular care within primary care services. [ABSTRACT FROM AUTHOR]

(1) Background: Parents of children with rare diseases experience great uncertainty and employ different strategies to care for their children and cope with the disease. The purpose of the present study was to describe the perspective of parents with children with Phelan McDermid Syndrome (PMS). (2) Methods: A non-probabilistic purposeful sampling was used to perform this qualitative descriptive study. Thirty-two parents with children with PMS were interviewed. In-depth interviews and research field notes were analyzed using an inductive thematic analysis. (3) Results: Four themes emerged from the data. "Understanding and accepting the disease" described how parents experienced their child's diagnosis and the lack of information. The second theme, called "Living day by day", highlighted the daily difficulties faced when caring for a child with PMS. The third theme, "Expectations versus reality", was based on the parents' expectations of parenthood and the reality they face. Expectations for the future are also included. Finally, "Pain and happiness" describes how parents alternate feelings of distress and suffering but also joy with what they learn from these experiences. (4) Conclusions: Health professionals can use these results to support parents. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]