Parental Quality of Life: Caring for an Infant or Toddler with a Tracheostomy at Home

2014 ◽  
Vol 33 (2) ◽  
pp. 86-94 ◽  
Author(s):  
Rachel A. Joseph ◽  
Linda M. Goodfellow ◽  
Lynn M. Simko

Purpose: To explore the relationships between stress, coping, duration of tracheostomy, and quality of life (QOL) of parental caregivers who care for a child with a tracheostomy at home.Design: A cross-sectional correlational design was used to study parents who care for a child with a tracheostomy at home. Family Inventory of Life Events, Family Crisis Oriented Personal Evaluation Scale, and Psychological General Well-Being Index were used to measure stress, coping, and QOL, respectively. Data were collected using both online and paper-pencil format.Main Outcome Variable: quality of life.Results: Parents who care for their infants/toddlers with a tracheostomy at home were found to be in moderate distress. Mean age of the participants was 33 years (N = 71), and the average duration of the child’s tracheotomy was 18.22 (SD = 9.59) months. Multivariate analysis showed a significant inverse relationship between QOL and stress. QOL was significantly associated with coping, B = 19.91, β = .43, p<.001.

GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.


Nutrients ◽  
2021 ◽  
Vol 13 (8) ◽  
pp. 2648
Author(s):  
Shila Minari Hargreaves ◽  
Eduardo Yoshio Nakano ◽  
Heesup Han ◽  
António Raposo ◽  
Antonio Ariza-Montes ◽  
...  

This study aimed to evaluate the general quality of life (QoL) of Brazilian vegetarians. A cross-sectional study was conducted with Brazilian vegetarian adults (18 years old and above). Individuals were recruited to participate in a nationwide online survey that comprised the WHOQOL-BREF as well as sociodemographic and characterization questions related to vegetarianism. The WHOQOL-BREF is composed of 24 items which are divided into four domains (domain 1: physical health; domain 2: psychological well-being; domain 3: social relationships; and domain 4: environment), plus two general items which were analyzed separately, totaling 26 items. The answers from the questionnaire were converted into scores with a 0–100 scale range, with separate analyses for each domain. Results were compared among groups based on the different characteristics of the vegetarian population. A total of 4375 individuals completed the survey. General average score results were 74.67 (domain 1), 66.71 (domain 2), 63.66 (domain 3) and 65.76 (domain 4). Vegans showed better scores when compared to the other vegetarians, except in domain four, where the statistical difference was observed only for semi-vegetarians (lower score). Individuals adopting a vegetarian diet for longer (>1 year) showed better results for domains one and two, with no difference for the other domains. Having close people also adopting a vegetarian diet positively influenced the results for all domains. On the other hand, it was not possible to distinguish any clear influence of the motivation for adopting a vegetarian diet on the scores’ results. Adopting a vegetarian diet does not have detrimental effects on one’s QoL. In fact, the more plant-based the diet, and the longer it was adopted, the better the results were.


Author(s):  
Anna Lee ◽  
Kathleen Knafl ◽  
Marcia Van Riper

The purpose of this scoping review was to identify the family and child quality of life variables that have been studied in relation to one another in children with Down syndrome, the frequency with which different relationships have been studied, and the extent to which family variables were the focus of the research aims. A literature search was conducted to find studies published between January 2007 and June 2018. The initial search yielded 2314 studies; of these, 43 were selected for a final review. Researchers most often addressed family resources and family problem-solving and coping concerning child personal development and physical well-being. Little attention to child emotional well-being was observed, with none considering family appraisal of child emotional well-being. The relationship between family variables and child QoL rarely was the primary focus of the study. Methodologically, most reviewed studies used cross-sectional designs, were conducted in North America and based on maternal report. From future research considering the issues found in this review, healthcare providers can obtain an in-depth understanding of relationships between children and family variables.


2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.


2003 ◽  
Vol 21 (14) ◽  
pp. 2754-2759 ◽  
Author(s):  
Michael J. Fisch ◽  
Michael L. Titzer ◽  
Jean L. Kristeller ◽  
Jianzhao Shen ◽  
Patrick J. Loehrer ◽  
...  

Purpose: To evaluate the association between quality-of-life (QOL) impairment as reported by patients and QOL impairment as judged by nurses or physicians, with and without consideration of spiritual well-being (SWB). Patients and Methods: A total of 163 patients with advanced cancer were enrolled onto a therapeutic trial, and cross-sectional data were derived from clinical and demographic questionnaires obtained at baseline, including assessment of patient QOL and SWB. Clinicians rated the QOL impairment of their patients as mild, moderate, or severe. Clinician-estimated QOL impairment and patient-derived QOL categories were compared. Correlation coefficients were estimated to associate QOL scores using different instruments. The analysis of variance method was used to compare Functional Assessment of Cancer Therapy–General scores on categorical variables. Results: There was no significant association between self-assessment scores and marital status, education level, performance status, or predicted life expectancy. However, a strong relationship between SWB and QOL was noted (P < .0001). Clinician-estimated QOL impairment matched the level of patient-derived QOL correctly in approximately 60% of cases, with only slight variation depending on the method of categorizing patient-derived QOL scores. The accuracy of clinician estimates was not associated with the level of SWB. Interestingly, a subset analysis of the inaccurate estimates revealed an association between lower SWB and clinician underestimation of QOL impairment (P = .0025). Conclusion: Clinician estimates of QOL impairment were accurate in more than 60% of patients. SWB is strongly associated with QOL, but it is not associated with the overall accuracy of clinicians’ judgments about QOL impairment.


Author(s):  
Carolina Mendoza ◽  
Helena Poggi ◽  
Mónica Flores ◽  
Cristóbal Morales ◽  
Alejandro Martínez-Aguayo

Introduction: Transgender (TG) children and adolescents experience problems in school as well as with family and social relationships that can adversely affect their physical and psychosocial health and impair their quality of life (QOL). This study aims to assess health-related quality of life (HRQOL) in TG children. Methods: We performed a cross-sectional study comparing HRQoL in gender nonconforming (Trans) and gender conforming (CIS) children and adolescents using the Spanish version of KIDSCREEN-52 in 120 Chilean Trans and CIS children (aged 8–18 years) and their parents. All scores were standardized according to the KIDSCREEN manual. Results: Among the 100 questionnaires answered, 38 corresponded to children and adolescents aged 8.4–18 years. Twenty-one of them were TG (71% trans males) and 17 were CIS (76% females). Sixty-two parents answered the questionnaires: 33 from families of TG children (PTrans) and 29 from families of CIS children (PCis). Trans children had lower HRQOL scores in all domains compared to CIS children. The lowest-scoring domains for TG children were “Moods and Emotions”, “Psychological Well-Being” and “Social Acceptance”, and the highest-scoring domain was “School Environment”. The PTrans group had significantly higher scores than the Trans group for 3 of the 10 domains: “Psychological Well-Being”, “Moods and Emotions”, and “Parent Relations and Home Life”. Conclusion: Our results revealed that TG children and adolescents have lower QOL than their CIS counterparts, especially regarding items related to mental health. Furthermore, their parents may underestimate their well-being, confirming the vulnerability of the TG population. This finding underlies the need to perform early assessments of QOL for early detection and intervention in aspects that could deteriorate their quality of life.


2018 ◽  
Vol 103 (9) ◽  
pp. 1314-1319 ◽  
Author(s):  
Eva K Fenwick ◽  
Ryan E K Man ◽  
Alfred Tau Liang Gan ◽  
Neelam Kumari ◽  
Charlene Wong ◽  
...  

Background/aimsTo assess the independent impact of diabetic retinopathy (DR) on three domains of vision-related quality of life (VRQoL) in a Chinese Singapore population.MethodsThe Singapore Chinese Eye Study (n=3353; 2009–2011) was a population-based, prospective, cross-sectional study conducted at the Singapore Eye Research Institute. The study population included 292 adults with diabetes, with and without DR. DR (better eye) was categorised as presence and absence of any DR; severity of DR (no vision-threatening DR (VTDR); severe non-proliferative DR (NPDR); PDR and/or clinically significant macular oedema and VTDR). Our main outcome was VRQoL which was measured using Rasch-calibrated scores from the ‘Reading’, ‘Mobility’ and ‘Emotional’ domains of the Impact of Vision Impairment questionnaire. The relationship between DR and VRQoL was assessed using multiple linear regression models.ResultsOf the 292 individuals (mean age 61.35 ± 9.66 years; 55.8% male), 201 (68.8%), 49 (16.8%), 20 (6.8%), 22 (7.5%) and 27 (9.2%) had no DR, minimal-mild NPDR, moderate-severe NPDR, PDR and VTDR, respectively. Any DR and VTDR were independently associated with 6% and 12% worse Reading scores and 7% and 18% poorer Emotional well-being, respectively, compared with those without DR. These associations persisted after separate adjustment for visual impairment and presenting visual acuity. No significant difference was found in the Mobility domain between persons with and without DR.ConclusionsWe documented that DR, particularly VTDR, was independently associated with restrictions in Reading and Emotional well-being. Understanding factors underlying the detrimental DR-VRQoL relationship may optimise rehabilitation outcomes for individuals with DR.


2013 ◽  
Vol 69 (4) ◽  
Author(s):  
J. Hilton ◽  
W. Mudzi ◽  
V. Ntsiea ◽  
S. Olorunju

Background: Caregivers of patients with stroke are central in providing for the patient’s needs post stroke. The well-being and quality of life of the caregiver is important in the rehabilitation of the patient with stroke. This study sought to establish the: functional level of patients, level of strain and quality of life of the caregiver, and the factors that influence caregivers’ quality of life six to 36 months post stroke. Methods: This was a cross-sectional study which included 35 patients six to 36 months post stroke and their primary caregiver utilising a sample of convenience from local clinics/hospitals in Johannesburg. Demographic information was obtained from the patient and the caregiver using a questionnaire. The Barthel Index (BI), Caregiver Strain Index (CSI) and the EQ-5D were also administered. Results: On the BI, 60% of the patients were moderately dependent to independent while 77% of the caregivers were strained. Older caregivers were 81% more likely to experience a decrease in quality of life than younger caregivers. Conclusion: A large proportion of patients are discharged from hospital without receving rehabilitation and are still dependent on caregivers six to 36 months post stroke. Caregivers of patients with stroke need more support from health professionals to mitigate against the high strain and low quality of life that they experience when caring for patients six to 36 months post stroke.


2020 ◽  
Vol 5 (3) ◽  
pp. 211-216
Author(s):  
Dolly Bansal ◽  
Vijendra Nath Pathak ◽  
J. Pradhan ◽  
Anu Chaudhary

The study aims to highlight the occupation level on occupational stress, psychological well-being, and quality of life of Indian Army Personnel. The study was conducted on one hundred fifty Indian male Army Personnel of different rank belonging to 25 years to 45 years of age group. The cross-sectional design was used. The sample was selected through the purposive sampling technique. The tools measures like the Occupational Stress Index, Psychological Well-Being Scale and WHO Quality of Life-BREF Hindi was individually administered. The data were analysed using descriptive and inferential statistics. One way Analysis of Variance results revealed that there is a significant difference in occupational levels on occupational stress, psychological well-being, and quality of life among Indian Army personnel. Pearson product-moment correlations coefficient showed a significant negative relationship between occupational stress with psychological well-being and quality of life and showed a significant positive relationship between psychological well-being and quality of life among Indian Army Personnel.


2021 ◽  
Author(s):  
Aidos K. Bolatov

Abstract The study aimed to investigate the relationships between academic motivation and the psychological well-being of 1st-year medical students during the COVID-19 pandemic. The total number of respondents in the cross-sectional study was 273. Intrinsic motivation was positively correlated with fear of COVID-19 and negatively correlated with psychological collapse and negative changes in quality of life due to the COVID-19. Extrinsic motivation positively associated with fear of COVID-19. Amotivation positively correlated with psychological collapse and negative changes in quality of life. In conclusion, COVID-19-related changes in quality of life and psychological destruction were predictors of academic motivation among 1st-year medical students.


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