End-of-life perspectives according to family caregivers of older adults with dementia: A qualitative study.

BACKGROUND: Family caregivers are primarily responsible for the care of older adults with dementia, and the demands of this care increase as the end of life approaches. Experiencing the end of a family member's life can be stressful, and caregivers consider important to know how to identify when their loved one is approaching the end of life in order to prepare for this moment. Thus, as the family is primarily responsible for the older adult with dementia, it is essential to know the meanings of the end of life attributed by family caregivers. OBJECTIVE: To analyze the perceptions of family caregivers of older adults with dementia about the end of life. METHODS: This is a qualitative, descriptive and exploratory study. The convenience sample consisted of family caregivers of older adults with dementia. The inclusion criteria were being a family member directly involved in the care of the older adult with dementia and being 18 years of age or older. Data were collected from individual semi-structured interviews. The number of participants was defined during the interviews using the saturation criterion. Data were analyzed using the thematic analysis technique. RESULTS: A total of 63 family caregivers participated, 74.6% of whom were women, predominantly wives and daughters. Two themes resulted from the data analysis: (i) Different perspectives on the end of life: from death itself to a sad, painful and long grief process; and (ii) End of life in the perspective of transcendence. The meaning of the end of life was perceived in different ways by family caregivers. Understanding how they perceive and experience the end-of-life process of the older adult with dementia helps to clarify the best ways for the health professionals to approach and intervene with these families.

Perception of patients with interstitial lung diseases submitted to inspiratory muscle training.

BACKGROUND: Although inspiratory muscle training reduces dyspnea in patients with chronic respiratory diseases, it was not yet evaluated in a sample composed exclusively of patients with interstitial lung diseases. OBJECTIVE: To discuss the perception of patients with interstitial lung diseases about inspiratory muscle training intervention. METHODS: This is a qualitative study. Data were collected using semi-structured interviews, transcribed, and analyzed by thematic analysis. RESULTS: Fourteen patients (64 ± 7 years) with interstitial lung disease were interviewed. Average participation in the inspiratory muscle training program was 90% (range, 66-100%). Three themes were elaborated: 1) dyspnea and other symptoms in daily life (e.g. "I could not carry out a bag; I was very uncomfortable"); 2) less symptom and greater performance (e.g. "I wash and change my clothes, house cleaning, do everything without feeling anything"); and 3) IMT: a time dedicated to my health (e.g. "For me it was great because I saw my evolution every day"). CONCLUSION: Patients noticed improvements in symptoms and performance related to daily activities. Despite initial difficulties, patients continued training as planned.

'What if it were like this?' Perception of mothers of children with cerebral palsy about the ankle-foot orthosis of their children: A qualitative study.

BACKGROUND: The family-centred approach is fundamental in the therapeutic process of children with cerebral palsy (CP), and the increased competence of parents about therapeutic devices, especially orthoses, can facilitate its implementation, thus intensifying the benefits that this device provides. The aim of this study was to understand the perception of mothers of children with CP in relation to their children's ankle-foot orthosis. METHODS: This is a qualitative study using thematic content analysis technique. Data were collected using semi-structured interviews from 24 mothers of children with Levels IV and V of CP according to the Gross Motor Function Classification System (GMFCS), who were attended at a philanthropic rehabilitation centre. RESULTS: Three categories were identified from analyzing the interviews: benefits of the orthosis, the orthosis in the child's daily life and 'What if it were like this?' CONCLUSIONS: According to the mothers' perceptions, the ankle-foot orthosis improved their child's mobility. The orthoses are used in different contexts in the child's daily life, and the mothers pointed out suggestions regarding personalizing the orthosis with different colors and patterns, increasing comfort and facilitating the way in which the device is placed.