scholarly journals Physicians’ perceptions on Quality of Life of persons with profound intellectual and multiple disabilities: A qualitative study

2019 ◽  
Vol 45 (2) ◽  
pp. 176-183 ◽  
Author(s):  
Appolonia M. Nieuwenhuijse ◽  
Dick L. Willems ◽  
Erik Olsman
2021 ◽  
Vol 8 ◽  
pp. 2333794X2110123
Author(s):  
Inese Stars ◽  
Liene Smane ◽  
Zanda Pucuka ◽  
Ieva Roge ◽  
Jana Pavare

Information on family health-related quality of life (FHRQoL) among families of children with the coronavirus disease 2019 (COVID-19) is limited. This qualitative study explores the impact of pediatric COVID-19 on FHRQoL from the parents’ perspective. Semi-structured interviews were conducted with parents (n = 20) whose children had tested positive for the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Inductive thematic analysis revealed the following 10 themes that represented parents’ perception of FHRQoL while taking care of a child with COVID-19: pediatric COVID-19 as a disease with many unknowns; emotional saturation; internal family relationships in the context of “a new experience”; routine household activities and daily regimen while family is in lockdown; plenty of free time; a wide social support network; social stigma associated with COVID-19; different options for work; savings and debts; challenges with family housing and transport availability. Our results show that parents experience multiple effects of pediatric COVID-19 with regard to FHRQoL.


2021 ◽  
pp. 073346482199686
Author(s):  
Candace L. Kemp ◽  
Alexis A. Bender ◽  
Joy Ciofi ◽  
Jennifer Craft Morgan ◽  
Elisabeth O. Burgess ◽  
...  

Meaningful engagement is an important dimension of quality of life and care for persons living with dementia, including the growing number who reside in assisted living communities. This report presents preliminary findings from an ongoing qualitative study aimed at identifying best care practices to create and maintain meaningful engagement among persons with dementia. Over a 1-year period, we conducted interviews, residents’ record review, and participant observations in four diverse care communities. Our analysis identified four approaches that successfully promote meaningful engagement: (a) knowing the person, (b) connecting with and meeting people where they are, (c) being in the moment, and (d) viewing all encounters as opportunity. Incorporation of these approaches in care routines and adoption by all care partners can promote meaningful engagement, including during crises such as COVID-19.


2021 ◽  
Vol 6 (1) ◽  
pp. 151-162
Author(s):  
Steffany M. Chleboun ◽  
Kathryn Brady ◽  
Jennie Zelenak

Much of what we know about stroke is limited to the first 5 years postinjury; however, the effects of having a stroke remain several years, even decades, postinjury, and the impact this has on an individual's quality of life over a long period of time is not completely understood. Purpose The purpose of this study was to understand one woman's experience living with the effects of stroke over multiple decades postinjury and to explore factors that affected her quality of life during this time. Method Using Grounded Theory methodology, data were drawn from 28 years of journals kept by the participant and from semistructured family interviews. Results Four major interacting themes emerged from the data: family support, faith, personality, and journaling. Findings are discussed in the context of resilience theory.


2018 ◽  
Vol 32 (2) ◽  
pp. 413-426 ◽  
Author(s):  
Stephania A. Rodrigues ◽  
Bruno J. B. Fontanella ◽  
Lucimar R. S. de Avó ◽  
Carla M. R. Germano ◽  
Débora G. Melo

2021 ◽  
Vol 108 (Supplement_8) ◽  
Author(s):  
Olivia Smith ◽  
Srinivas Chintapatla ◽  
Praminthra Chitsabesan

Abstract Aim determine themes reported as important to Quality of Life (QoL) in Complex Abdominal Wall Hernia (CAWH) patients Material and Methods 15 purposively sampled CAWH patients were interviewed using topic guides (8 men and 7 women aged between 36 to 85 years [median = 65 years] covering all VHWG grades). All verbatim transcripts were coded and analysed using NVIVO12 software and Interpretative Phenomenological Analysis (IPA) until thematic saturation. Results 3 overarching groupings and 5 superordinate themes were identified. Each superordinate theme is associated with several subordinate themes: Conclusions This is the first phenomenological qualitative study in CAWH patients. The themes presented are interrelated and should shape our understanding of QoL in CAWH. Current QoL tools do not incorporate all aspects identified by this study. Further research is needed in order to generate a standardised CAWH QoL instrument which incorporates bio-psycho-emotional-social processes important to patients as identified by patients.


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