Hearing Loss–Related Issues Affecting Quality of Life in Preschool Children

2020 ◽  
pp. 019459982096247
Author(s):  
Miranda Lindburg ◽  
Banan Ead ◽  
Donna B. Jeffe ◽  
Judith E. C. Lieu
Keyword(s):  
Quality Of Life ◽  
Hearing Loss ◽  
Focus Group ◽  
Young Children ◽  
Focus Groups ◽  
Academic Medical Center ◽  
Schools For The Deaf ◽  
The Impact ◽  
Parent Proxy

Objective The impact of hearing loss (HL) on quality of life (QOL) in young children has not been examined systematically. The objective of this study was to examine patient, parent, and professional perspectives on experiences and situations that affect the QOL in young children with HL and to identify themes that emerged from coded data to develop a parent-proxy QOL measure for young children with HL. Study Design Qualitative study with 6 focus groups followed by semistructured interviews with other parents and professionals as stakeholder checks. Setting Academic medical center and local schools for the deaf. Methods Audiology department clinic lists were used to identify eligible participants, who included 5- to 7-year-old children with permanent HL and parents of 2- to 7-year-old children with permanent HL. A sample of 6 children and 12 parents participated in focus groups. An audiology department and multiple schools for the deaf in the area were contacted to recruit for professional participants, resulting in a sample of 10 professionals who participated in focus groups. Focus groups and interviews were audiotaped and transcribed verbatim. Inductive thematic analysis of focus group transcripts identified key concepts and emerging themes of how HL affects young children. Results Six themes emerged from the data: behavior, feelings, environments, social/activities, family, and hearing equipment. Child, parent, and professional focus group themes overlapped well, and data saturation was reached. Conclusion These qualitative data provided insight into HL-related issues affecting young children’s QOL and were used to create items for a new parent-proxy QOL questionnaire.

Validation of a Parent Proxy Quality‐of‐Life Measure for Young Children With Hearing Loss

2020 ◽  
Author(s):  
Cathy Y. Yu ◽  
Donna B. Jeffe ◽  
Margaret A. Kenna ◽  
John A. Germiller ◽  
Judith E.C. Lieu
Keyword(s):  
Quality Of Life ◽  
Hearing Loss ◽  
Young Children ◽  
Life Measure ◽  
Children With Hearing Loss ◽  
Parent Proxy

scholarly journals Impact and cost-effectiveness evaluation of a community-based rehabilitation intervention on quality of life among Chinese adults with hearing loss: study protocol for a randomized controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Xin Ye ◽  
Dawei Zhu ◽  
Siyuan Chen ◽  
Xuefeng Shi ◽  
Rui Gong ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hearing Loss ◽  
Cost Effectiveness ◽  
Treatment Group ◽  
Hearing Aids ◽  
Control Group ◽  
Chinese Adults ◽  
Community Based ◽  
The Impact

Abstract Background Hearing loss is quite prevalent and can be related to people’s quality of life. To our knowledge, there are limited studies assessing the efficacy of hearing interventions on quality of life in adults. Therefore, we aim to conduct a randomized controlled trial (RCT) to determine the impact and cost-effectiveness of community-based hearing rehabilitation on quality of life among Chinese adults with hearing loss. Methods/design In this two-arm feasibility study, participants aged 16 and above with some degree of hearing loss (n = 464) will be recruited from Linyi City, Shandong Province. They are randomly assigned to the treatment group or the control group. Those in the treatment group are prescribed with hearing aids, while those in the control group receive no intervention. Reinstruction in use of devices is provided for the treatment group during booster visits held 12 months post-randomization or unscheduled interim visits when necessary. Data are collected at baseline and the follow-up 20 months later. The primary outcome is changes in quality of life over a 20-month study period. Secondary outcomes include sub-dimensions in quality of life, physical functioning, chronic diseases, cognitive function, depression, social support, hospitalizations, falls, and healthcare costs. Finally, we will evaluate whether hearing aids intervention is cost-effective to apply in a large scale. Discussion The trial is designed to evaluate the impact and cost-effectiveness of a community-based rehabilitation intervention on quality of life among Chinese adults with hearing loss. We hope that it would help improve the well-being for Chinese adults and provide references in policy and practice for China and other countries. Trial registration Chinese Clinical Trial Registry ChiCTR1900024739. Registered on 26 July 2019.

Patients’ perspective of the impact of COPD on quality of life: a focus group study for patients with COPD

2018 ◽  
Vol 40 (3) ◽  
pp. 573-579 ◽  
Author(s):  
Anan Jarab ◽  
Eman Alefishat ◽  
Tareq Mukattash ◽  
Karem Alzoubi ◽  
Sharrel Pinto
Keyword(s):  
Quality Of Life ◽  
Focus Group ◽  
Focus Group Study ◽  
The Impact ◽  
Patients Perspective

Patient perspectives

2010 ◽  
pp. 181-187
Author(s):  
S. Jos Closs
Keyword(s):  
Quality Of Life ◽  
Neuropathic Pain ◽  
Suicidal Ideation ◽  
Side Effects ◽  
Focus Group ◽  
Drug Treatment ◽  
Sleep Disturbance ◽  
Focus Group Research ◽  
The Impact

The impact of neuropathic pain on quality of life has been under-researched and poorly understood though survey and focus group research is helping to gain better insights into what patients suffer Neuropathic pain can result in significant sleep disturbance, fatigue, and low mood (that sometimes leads to suicidal ideation), and side-effects from drug treatment are common...

scholarly journals Importance and Assessment of Quality of Life in Symptomatic Permanent Atrial Fibrillation: Patient Focus Groups from the RATE-AF Trial

Cardiology ◽  
2020 ◽  
Vol 145 (10) ◽  
pp. 666-675 ◽  
Author(s):  
Jacqueline Jones ◽  
Mary Stanbury ◽  
Sandra Haynes ◽  
Karina V. Bunting ◽  
Trudie Lobban ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Focus Groups ◽  
Atrial Fibrillation Patient ◽  
Beta Blockers ◽  
Nyha Class ◽  
Symptom Burden ◽  
Routine Practice ◽  
The Impact

Aims: To establish the extent and impact of symptoms in patients with atrial fibrillation (AF), the importance of different aspects of quality of life (QoL), and how we should assess wellbeing. Methods: Focus groups of patients with symptomatic permanent AF in a trial of heart rate control; the RATE-AF trial randomised 160 patients aged ≥60 years with permanent AF and at least NYHA class II dyspnoea to either digoxin or beta-blockers. Patient and public representatives led the focus groups and performed all data acquisition and analysis, using thematic approaches to interpret patient views about QoL and its measurement. Results: Substantial impairment of health-related QoL was noted in 160 trial patients, with impact on all domains apart from mental health. Eight women and 11 men aged 61–87 years participated in the focus groups. Common themes were a lack of information from healthcare professionals about AF, a lack of focus on QoL in consultations, and a sense of frustration, isolation, and reduced confidence. There was marked variability in symptoms in individual patients, with some describing severe impact on activities of daily living, and profound interaction with comorbidities such as arthritis. Day-to-day variation in QoL and difficulty in attributing symptom burden to AF or other comorbidities led to challenges in questionnaire completion. Consensus was reached that collecting both general and AF-specific QoL would be useful in routine practice, along with participation in peer support, which was empowering for the patients. Conclusions: The impact of comorbidities is poorly appreciated in the context of AF, with considerable variability in QoL that requires both generic and AF-specific assessment. Improvement in QoL should direct the appraisal, and reappraisal, of treatment decisions for patients with permanent AF.

The Importance of the Patient-Physician Relationship in Myelodysplastic Syndromes.

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1340-1340 ◽  
Author(s):  
Mary L. Thomas ◽  
Kathleen Heptinstall ◽  
Audrey Hassan
Keyword(s):  
Quality Of Life ◽  
Focus Groups ◽  
Myelodysplastic Syndromes ◽  
Treatment Options ◽  
The United States ◽  
Significant Finding ◽  
Physician Relationship ◽  
The Impact ◽  
The Relationship

Abstract Most physicians presume their relationship with the patient is a crucial component when managing chronic illness, such as myelodysplastic syndromes (MDS). This assumption was validated in a convenience sample of 70 adults with MDS who participated in five focus groups throughout the United States. The primary purpose of this qualitative study was to explore the impact of MDS on patients’ quality of life (QOL). The groups were facilitated by an advanced practice nurse with clinical expertise in MDS and qualitative research experience. Given the exploratory nature of the study design, discussions proceeded in differing directions; however, core questions were asked at each session (based on Ferrell’s work exploring QOL in patients with cancer (Oncology Nursing Forum, 1996). Sessions were audio-taped and professionally transcribed. Transcripts were coded and emerging themes identified using thematic analysis methods aided by the qualitative analysis program N5 (QSR International). The sample was 93% Caucasian, 51% male, with a mean age of 69 ± 9 years; 26% lived alone. Known MDS subtype was: 19 RA, 19 RARS, 11 RAEB, 3 5q-, 2 other (16 unknown); median time since diagnosis was 26 months (3 - 276). 73% received growth factors, 61% transfusions, 19% azacitidine, 16% thalidomide, 14% iron chelation; 29% all other; many patients received multiple (often concurrent) therapies. A significant finding from the focus groups revealed a detailed depiction of the patient-physician relationship from the patient’s perspective (discussed by 46 of the 62 patients who actively participated). Patients acknowledged many barriers that interfered with the relationship. These barriers were system related (e.g., extreme time constraints for physicians, priority to others who were more ill) or treatment related (e.g., lack of cure, limited treatment options). In addition, patients identified physician attributes that adversely impacted the relationship, including seeming indifference to the patient’s concerns, displays of arrogance, limited knowledge about MDS and its treatment, and especially, lack of confidence in managing the illness. In contrast, positive physician attributes that enhanced the relationship included: providing comprehensible explanations, willingness to seek assistance or opinions from MDS experts when the physician was unsure of the best treatment approach, and displays of compassion and concern. Patients identified displaying respect and interest in them as individuals as essential elements in establishing and maintaining a therapeutic relationship. Patients reacted to a difficult patient-physician relationship in various ways. Those patients who ascribed to the view that a physician had a revered position and was not to be challenged tended to suffer in silence, and remained anxious or depressed. Other patients described a more proactive position, where they continually sought new information about the disease and managing side effects and even felt responsible to explore other treatment options. However, this approach required much work and energy, and did not consistently alleviate the patient’s anxiety. MDS is a complex disease, where advances in understanding its pathology and identifying new treatments are beginning to have an impact in routine clinical practice. Data from this study suggest that physicians need to be aware of the barriers present in the patient-physician relationship and strive to ameliorate them. In so doing, patient’s anxiety, depression, and hyper-vigilance may be diminished, and quality of life enhanced.

scholarly journals Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group

2018 ◽  
Vol 76 (4) ◽  
pp. 399-408
Author(s):  
Alberto Mota
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Atopic Dermatitis ◽  
Focus Group ◽  
Adult Patients ◽  
Personal Experiences ◽  
Topical Treatments ◽  
Item Price ◽  
The Impact

Introduction: Important dimensions such as personal experiences, attitudes toward disease, its causes and treatments, are not fully addressed in clinical trials. Focus group (FG) has emerged as an interesting and valuable tool in clinical research complementing this gap. The aim of this qualitative research was to assess in both caregivers and patients dealing with atopic dermatitis (AD) their attitudes, personal experiences and perspectives toward the disease and its topical treatment as well as the impact in quality of life (QoL).Material and Methods: For discussion sessions, 10 caregivers of children and 10 adult patients were recruited. Two sessions of FG took place with 3 main themes discussed: perspectives toward AD, topical treatments and the impact in QoL. All activities were recorded in video and the discussions and notes were then transcribed to a document, followed by transcripts analysis.Results: The best descriptive feelings in the moment of diagnosis where “concern” (30%) and “quality of life” (30%) for caregivers and patients, respectively. The actual “positive” emotion or state of mind toward the disease was “overcoming” for caregivers (21%) and “control” for patients (17%). The main “negative or neutral” emotion was “fear” for caregivers (13%) and “resignation” for patients (18%), but when projecting to their child, “frustration” (19%) was the most mentioned. In relation to topical treatments, the mean global satisfaction of caregivers was high for tacrolimus (8.5/10), except in the item “price”. In the case of patients, corticosteroids received a better score (8.0/10), with exception for “tolerability/adverse effects”. Features like “preventive treatment with reduction of flares” and “free of cortisone” were important for both participants in an “ideal topical medicine” setting. All participants showed high levels of negative impact in their QoL due to AD, with 47% and 64.6% considering scores of “very much” and “a lot” of interference, respectively.Conclusion: Qualitative studies in AD by FG are scarce and to our knowledge this is the first one gathering both adult patients and caregivers. The dimensions yielded by this approach are useful to complement data retrieved from clinical trials and to drive decisions from researchers and health authorities.

scholarly journals Parent proxy assessment of sibling quality of life following pediatric hematopoietic cell transplantation

2019 ◽  
Vol 17 (1) ◽  
Author(s):  
David Buchbinder ◽  
Sunita K. Patel ◽  
Jacqueline N. Casillas ◽  
Diane J. Nugent ◽  
Steven Neudorf ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Cell Transplantation ◽  
Hematopoietic Cell Transplantation ◽  
Short Form ◽  
Hematopoietic Cell ◽  
Family Function ◽  
The Impact ◽  
Parent Proxy

Abstract Background When a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. Assessment of the quality of life (QoL) of siblings is challenged by their general lack of availability for regular assessment by clinical providers. Thus, the use of parent proxy reporting may be useful. Our aim was to describe the QoL of siblings of HCT survivors, as reported by their parents, as well as to identify parent and family factors associated with lower sibling QoL. Methods A cross-sectional study was utilized to assess parent-reported QoL of the HCT recipient’s sibling (Short Form (SF)-10 Health Survey for Children and the Pediatric Symptom Checklist (PSC)-17). Parent QoL was assessed using the SF-12. Multivariable linear regression was used to explore hypothesized predictors of sibling QoL, including parent QoL, family impact/function (Impact on Family Scale, Family Adaptability and Cohesion Evaluation Scales, IV, and a question asking about financial problems) while adjusting for demographic and HCT characteristics. Results Ninety-seven siblings (55% males) with a mean age of 12 years (standard deviation [SD] 4 years) were assessed, representing HCT survivors, who were an average of 5 years (SD 4 years) post-HCT. Neither sibling psychosocial (mean 49.84, SD 10.70, p = 0.87) nor physical health scores (mean 51.54, SD 8.42, p = 0.08) differed from norms. Parent proxies reported behavioral/emotional problems (PSC-17 total score > 15) in 24% of siblings. While parental ratings of their own physical health (SF-12 were higher than norms (mean 53.04, SD 8.17, p = 0.0005), mental health scores were lower (mean 45.48, SD 10.45, p < 0.0001). In multivariable analysis, lower parent emotional functioning and adverse family function were associated with lower sibling QoL, as reported by parents. Conclusions While proxy-reported QoL of siblings did not differ significantly from normative data, both parent QoL and family function were associated with sibling QoL. Future research is needed to understand how siblings themselves perceive their QoL following HCT.

The Impact of Hearing Aids on Quality of Life of Hearing Impaired Individuals

2021 ◽  
Vol 3 (2) ◽  
Author(s):  
Fatima Zafar ◽  
Hafiz Muhammad Usama Basheer ◽  
Amber Hassan ◽  
Wajeeha Zaib ◽  
Tehmeena Waheed
Keyword(s):  
Quality Of Life ◽  
Hearing Loss ◽  
Hearing Aids ◽  
Hearing Aid ◽  
Residual Activity ◽  
Hearing Impaired ◽  
P Value ◽  
Daily Routine ◽  
The Impact

The regular use of hearing aids (more than 8 hours a day) benefits people in hearing for bettercommunication than those who are less-likely to use hearing aids Objective: The objective of thestudy was to assess the impact of hearing aids on the quality of life of hearing impaired individualsMethods: In this cross-sectional study total 50 participants were recruited by convenient samplingtechnique from Lahore, Pakistan. 50 patients who were diagnosed with hearing loss and wererecommended with hearing aids of both genders were included in the study. The International OutcomeInventory for Hearing Aids (IOI-HA), questionnaire was used for data collection. Data were analyzedthrough Statistical Package for Social Sciences (SPSS) version 23.0 Results: In this research 50hearing impaired individuals who were hearing aid users, participated. The mean age of participants was64.10+15.88 years. Among which 25 (50%) were males and 25(50%) were females. The average time ofhearing aid use was 3.88 hours, majority of patients responded that hearing aid helped quite a lot in thedaily routine (mean score of IOI-HA, 3.62), have moderate difficulty in residual activity (mean score of IOIHA,3.26), moderately satisfied with their hearing aid (mean score of IOI-HA, 3.28), moderately affect theparticipation restriction (mean score of IOI-HA, 3.20), impact of their hearing loss bothered moderately(mean score of IOI-HA, 3.14) and quality of life (QOL) was very much better (3.90). There was insignificantassociation between the QOL of males and females (p-value>0.05) Conclusions: It was concluded fromthe study that the hearing aids have a greater impact on the quality of life and socio-economic aspectsof hearing impaired individuals. Hearing loss is such a problem, which separates certain community ofhearing impaired individuals from the normal population. Individuals with hearing impairment not onlyhave to face personal communication problems but also it affects their health, independency and qualityof life in their daily routine.

scholarly journals Housing, Health, and Happiness

2009 ◽  
Vol 1 (1) ◽  
pp. 75-105 ◽  
Author(s):  
Matias D Cattaneo ◽  
Sebastian Galiani ◽  
Paul J Gertler ◽  
Sebastian Martinez ◽  
Rocio Titiunik
Keyword(s):  
Quality Of Life ◽  
Cognitive Development ◽  
Child Health ◽  
Young Children ◽  
Perceived Stress ◽  
Large Scale ◽  
The Impact ◽  
Prevalence Of Anemia

We investigate the impact of a large-scale Mexican program to replace dirt floors with cement floors on child health and adult happiness. We find that replacing dirt floors with cement significantly improves the health of young children measured by decreases in the incidence of parasitic infestations, diarrhea, and the prevalence of anemia, and an improvement in children's cognitive development. Additionally, we find significant improvements in adult welfare measured by increased satisfaction with their housing and quality of life, as well as by lower scores on depression and perceived stress scales. (JEL I12, I31, J13, O15)

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