Family members and health professionals’ perspectives on future life planning of ageing people with Down syndrome: a qualitative study

2017 ◽  
Vol 40 (24) ◽  
pp. 2867-2874 ◽  
Author(s):  
Venusia Covelli ◽  
Alberto Raggi ◽  
Chiara Paganelli ◽  
Matilde Leonardi
Keyword(s):  
Down Syndrome ◽  
Qualitative Study ◽  
Health Professionals ◽  
Family Members ◽  
Life Planning

scholarly journals Experiences of mothers of disabled children: a phenomenological study

2008 ◽  
Vol 21 (1) ◽  
pp. 46-52 ◽  
Author(s):  
Maria Angélica Marcheti Barbosa ◽  
Massae Noda Chaud ◽  
Maria Magda Ferreira Gomes
Keyword(s):  
Qualitative Study ◽  
Health Professionals ◽  
Phenomenological Study ◽  
Daily Life ◽  
Family Members ◽  
Phenomenological Approach ◽  
Disabled Children ◽  
The World ◽  
The Disabled ◽  
The Impact

OBJECTIVE: To unveil the experiences of mothers of disabled children, with a view to understand the meaning of that experience. METHODS: This is a qualitative study using phenomenological approach based on Heidegger. The study subjects were five mothers with a disabled child. The interviews were performed at the women's homes, guided by the question "To you, what does it mean to have a disabled child? RESULTS: Five categories came into focus: "meeting one's actual infant," "the impact of disability," "treading a new path with one's disabled child," "experiencing maternal altruism in the care of the disabled child," and "altering one's family daily life." CONCLUSIONS: The discourses revealed emotionally moved beings experiencing a painful, sorrowful manner of being-in-the-world. Mothers find themselves unprepared to deal with the experience of having a disabled child, though perceiving the situation as an opportunity for self-encounter. Changes occurred to the couple's dynamics and family members became distant. When seeking guidance from health professionals, the mothers failed to find the necessary support.

scholarly journals “Very busy”: daily reorganization of mothers to care of children with Congenital Zika Syndrome

2020 ◽  
Vol 41 ◽  
Author(s):  
Paulo Roberto Lima Falcão do Vale ◽  
Deisyane Vitória Alves ◽  
Evanilda Souza de Santana Carvalho
Keyword(s):  
Content Analysis ◽  
Qualitative Study ◽  
Health Professionals ◽  
Family Members ◽  
Social Representation ◽  
Thematic Content Analysis ◽  
The Social ◽  
Congenital Zika Syndrome ◽  
Care Practices ◽  
Depth Interviews

ABSTRACT Objective: To understand the experiences and care practices of mothers of children with congenital Zika syndrome. Methods: A qualitative study with collection held in Feira de Santana - Bahia, between September and November 2017, from in-depth interviews and Story-Drawing with 11 family members of children, using thematic content analysis. Results: Mothers take care from experiences with health professionals and groups of mothers. They reorganize themselves in order to optimize time, streamline domestic activities, teach family members, and navigate care spaces. They experience the routine organizing the home, taking care of the children and, specifically, the child with syndrome, referring to: bedtime; giving a shower; changing diapers; feeding; playing; and, stimulating, actions mediated by intense crying and environmental preparation. Conclusion: The experiences are unique and exceptional, conforming the social representation of the mothers as a group, the “mothers of micro”, an aspect that differs from other experiences.

scholarly journals PRESENCE OF THE FAMILY DURING EMERGENCY CARE: PATIENT AND FAMILY LIVING

2019 ◽  
Vol 28 ◽  
Author(s):  
Mayckel da Silva Barreto ◽  
Cristina Garcia-Vivar ◽  
Laura Misue Matsuda ◽  
Margareth Angelo ◽  
Magda Lúcia Felix de Oliveira ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Emergency Care ◽  
Health Professionals ◽  
Reference Data ◽  
Family Members ◽  
Care Patient ◽  
Patient Relationship ◽  
Southern Brazil ◽  
Emergency Rooms ◽  
The Family

ABSTRACT Objective: to understand how family members and adult patients perceive the family's presence in emergency care. Method: qualitative study that used Symbolic Interactionism as a theoretical reference and the Data Grounded Theory as a methodological reference. Data collection took place in two emergency rooms, located in southern Brazil, between October 2016 and February 2017, through open interviews with four patients and eight relatives. Results: the relative presence in the emergency care was signified/perceived as positive, due to the benefits identified for patients, family members and health professionals. However, the experience was also marked by mishaps for the family-patient relationship, such as fear, doubts, anguish about the forced separation of family members and the experience of feelings of regret. Conclusion: due to the fact that the presence of the family in the emergency room is perceived as positive and beneficial, it is suggested that the health services, to the extent of their possibilities, implement this practice. However, such units need to be better prepared to mitigate the pitfalls faced by patients and their families.

scholarly journals Medication Experience and Adherence to Oral Chemotherapy: A Qualitative Study of Patients’ and Health Professionals’ Perspectives

2021 ◽  
Vol 18 (8) ◽  
pp. 4266
Author(s):  
Amparo Talens ◽  
Mercedes Guilabert ◽  
Blanca Lumbreras ◽  
María Teresa Aznar ◽  
Elsa López-Pintor
Keyword(s):  
Qualitative Study ◽  
Health Professionals ◽  
Real Life ◽  
Positive Influence ◽  
Barriers And Facilitators ◽  
University Hospital ◽  
Nominal Group ◽  
Care Plans ◽  
Individualized Care ◽  
Medication Experience

Lack of adherence constitutes one of the most important challenges in patients undergoing treatment with oral antineoplastic drugs (ANEO). Understanding cancer patients’ experiences with respect to their medication is key for optimizing adherence and therapeutic results. We aimed to assess the medication experience (ME) in patients with cancer in treatment with ANEO, to describe the barriers and facilitators related to the disease and its treatment and to compare them with the healthcare professionals’ perspectives. We carried out an exploratory qualitative study in the University Hospital of San Juan de Alicante, Spain. Three focus groups and two nominal group discussions were conducted with 23 onco-hematological patients treated with ANEO and 18 health professionals, respectively. The data were analyzed using content analyses and were eventually triangulated. The most impactful aspects in patients’ ME were the presence of adverse effects; lack of information about treatment; beliefs, needs and expectations regarding medications; social and family support; and the relationship with the health professionals. Both patients and professionals agreed on considering the negative side effects and the information about treatment as the main barriers and facilitators of adherence, respectively, although the approaches differed between both profiles. The professionals offered a more technical vision while patients prioritized the emotional burden and motivation associated with the disease and medication. This study allowed us to understand the real-life experiences of patients being treated with ANEO and explore the factors which had an impact on adherence to treatment. This understanding enables professionals to have a positive influence on patients’ behavior and provide individualized care plans. Pharmacists’ assistance is relevant to support patients’ adherence and self-management.

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