scholarly journals Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Autism ◽  
2020 ◽  
pp. 136236132096236
Author(s):  
Joanne Tarver ◽  
Effie Pearson ◽  
Georgina Edwards ◽  
Aryana Shirazi ◽  
Liana Potter ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Language Use ◽  
Management Strategies ◽  
Assessment Tools ◽  
Evidence Based ◽  
Structured Interviews ◽  
Verbal Language ◽  
Parental Recognition

Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.

scholarly journals Understanding the impact of incontinence on Veterans’ self-management strategies, quality of life and treatment experiences

2020 ◽  
Author(s):  
Linda Cowan ◽  
Sarah Bradley ◽  
Andrew R. Devendorf ◽  
Lelia Barks ◽  
Tatiana Orozco ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Urinary Incontinence ◽  
Fecal Incontinence ◽  
Healthcare Provider ◽  
Caregiver Burden ◽  
Management Strategies ◽  
Self Management ◽  
List Type ◽  
Structured Interviews

AbstractBackgroundUrinary and fecal incontinence contribute to significant quality of life impairments for patients and caregivers. Preliminary research suggests that incontinence rates may be higher among Veterans. However, few studies have examined incontinence experiences among Veterans and their caregivers.ObjectivesWe aimed to demonstrate the feasibility of conducting a one-year, telephone survey with Veterans and their caregivers to help inform larger studies. By including both Veteran and caregiver perspectives, we explored how incontinence impacts Veterans’ self-management strategies, quality of life, and treatment experiences.DesignWe used a mixed methods design, employing quantitative (i.e., cross-sectional survey) and qualitative approaches (i.e., semi-structured interviews).ParticipantsOur sample included 64 Veterans with urinary incontinence, fecal incontinence, or mixed incontinence, and 36 caregivers. A subset of 18 Veterans and 8 caregivers completed semi-structured interviews.MethodsData were collected via telephone surveys over the course of 1-year from a small research team at the Veterans Health Administration (VHA). Participants completed measures about the Veteran’s incontinence severity, quality of life, and VHA treatment experiences. Interviews asked participants about their perceptions and satisfaction in receiving treatment for the Veterans’ incontinence. Qualitative themes were extracted using a Rapid Assessment Process model.ResultsVeterans’ self-reported physical quality of life correlated negatively and significantly with both urinary and fecal incontinence severity, as well as negatively and significantly with urinary continence bother (rs range: −.36 to −.47, ps < .01). Veterans’ mental quality of life correlated negatively and significantly with urinary incontinence bother (r = −.43, p < .001). About 67% Veterans experienced incontinence symptoms for 5-years or more, yet 44% waited at least 1-year to discuss incontinence with a VHA provider. Most Veterans (92%) reported speaking with a VHA provider about incontinence, while only 42% reported speaking with a non-VHA provider. Qualitative findings revealed that, upon speaking to a provider, Veterans felt comfortable but also desired more incontinence education from their providers, including obtaining more appropriate and tailored treatment options. While most Veterans followed their provider’s treatment recommendations, some felt unsatisfied with treatments that they perceived as embarrassing.ConclusionsRecruiting a substantial sample of Veterans with incontinence, and their caregivers, is feasible using our recruitment methods, which can inform larger studies. Our study revealed that incontinence symptoms interfere significantly with the quality of life of Veterans and their caregivers. Intervening at the healthcare level by educating providers and systematizing inquiry into incontinence for higher risk populations would be fruitful to explore.Contribution of the PaperWhat is already known about this topic?Urinary incontinence is more prevalent than fecal incontinence, and both are associated with significant impairments in physical, mental, and social functioning.Urinary and fecal incontinence become more prevalent with older age and additional chronic health conditions.There is a lack of incontinence diagnoses documented in Veteran’s medical records, even when incontinence is present. Few studies have reported on caregiver burden related to incontinence care.What this paper addsThis study is the first to report on the potential delay between Veteran’s experiencing symptoms of incontinence and informing their healthcare provider or caregiver about those symptoms (sometimes 5-years or more).Insights on Veteran and caregiver satisfaction with incontinence care can guide healthcare interventions to improve incontinence care.Both Veteran quality of life and caregiver burden correlated significantly and negatively with satisfaction with incontinence treatments tried and number of treatments tried. Only 21% of Veterans were satisfied with the treatment plan they were given, suggesting a potential knowledge gap or opportunity for improvement in healthcare provider approaches to incontinence management.

The Use of Neck Support Pillows and Postural Exercises in the Management of Chronic Neck Pain

2016 ◽  
Vol 43 (10) ◽  
pp. 1871-1873 ◽  
Author(s):  
Alisha N. Jamal ◽  
Brian M. Feldman ◽  
Eleanor Pullenayegum
Keyword(s):  
Quality Of Life ◽  
Neck Pain ◽  
Patient Outcomes ◽  
Management Strategies ◽  
Chronic Neck Pain ◽  
Evidence Based ◽  
Factorial Model ◽  
Pain Symptoms ◽  
Full Factorial

Objective.Chronic neck pain is a common problem with a profound effect on quality of life. Identifying evidence-based management strategies is fundamental in improving patient outcomes. This study is a reanalysis of the data from Helewa, et al to further characterize the effects of postural exercises and neck support pillows on neck pain.Methods.A full factorial model was used. All interactions were analyzed adjusting for the Northwick Park Neck Pain Questionnaire (NPQ) at baseline.Results.Postural exercises significantly decreased NPQ scores at ≥ 3 weeks, and the use of a neck support pillow significantly decreased NPQ scores at ≥ 12 weeks.Conclusion.These interventions could be beneficial in reducing neck pain symptoms.

scholarly journals Estudio cualitativo sobre discapacidad intelectual y trabajo protegido. La orientación como herramienta para mejorar la calidad de vida/Qualitative study of intellectual disability and sheltered work. Vocational guidance as a tool to improve quality of life

2018 ◽  
Vol 28 (3) ◽  
pp. 82
Author(s):  
Cristina Laborda Molla ◽  
Henar González Fernández
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Intellectual Disability ◽  
Social Inclusion ◽  
Well Being ◽  
Improve Quality ◽  
Structured Interviews ◽  
Calidad De Vida ◽  
Discapacidad Intelectual

RESUMEN Introducción: El empleo es una herramienta clave para optimizar la inserción social y mejorar la calidad de vida (CV) de las personas con discapacidad intelectual (DI). Esta investigación estudia la calidad del empleo de personas con DI en Centros Especiales de Empleo (CEE) y en Centros Ocupacionales (CO). Método: Se desarrollaron 186 entrevistas semiestructuradas; 157 a empleados y 32 a empleadores de las dos tipologías de centros. Se recogió información referente a la naturaleza del centro, su organización, posibilidades de promoción y el nivel de bienestar de los trabajadores. Resultados: Los primeros datos muestran que existen tres elementos que determinan las posibilidades de desarrollo profesional de personas con DI y el nivel en la calidad de su empleo: la orientación profesional, la formación a lo largo de la vida y la intervención en procesos participativos. En función de ello se ha detectado que carecen de oportunidades para implicarse en los procesos de decisión de su vida sociolaboral, no tienen acceso generalizado a estudios postobligatorios reglados o de formación permanente y no existe el apoyo natural como elemento normalizador, entre otras. Conclusiones: La mejor ocupabilidad del colectivo depende de un proceso de orientación vital que abarque no sólo períodos de toma de decisiones y transición al mundo laboral, sino que se extienda a lo largo de toda su vida profesional. La finalidad es la mejora laboral para avanzar hacia la optimización de la calidad de vida.ABSTRACTIntroduction: Employment is a key tool to optimize social inclusion and improve quality of life (QoL) of people with Intellectual Disability (ID). This study explores the employment’s quality of workplace of people with ID in Special Employment Centers and Occupational Centers. Method: 186 semi-structured interviews were developed; 157 to employees and 32 to employers of the two types of centers. Information was collected regarding the nature of the center, its organization, possibilities for promotion and the level of workers well-being. Results: First data shows that there are three elements that determine the possibilities of professional development of people with ID and the level of quality of their employment: professional guidance, lifelong learning and intervention in participatory processes. As a result, they have been found to lack opportunities to become involved in the decision-making processes of their socio-labor life; they do not have widespread access to regulated post-compulsory studies or permanent training and there is no natural support as a normalizing element, among others. Conclusions: The better job placement of the collective depends on a process of vital orientation that includes not only periods of decision making and transition to work, but also extends throughout their professional life. The aim is to improve their work situation to advance towards the optimization of the quality of life.

Misophonia: An Evidence-Based Case Report

2020 ◽  
Vol 29 (4) ◽  
pp. 685-690
Author(s):  
C. S. Vanaja ◽  
Miriam Soni Abigail
Keyword(s):  
Quality Of Life ◽  
Case Report ◽  
Case History ◽  
Pure Tone ◽  
Physiological Responses ◽  
Evidence Based ◽  
Management Option ◽  
Pure Tone Audiogram

Purpose Misophonia is a sound tolerance disorder condition in certain sounds that trigger intense emotional or physiological responses. While some persons may experience misophonia, a few patients suffer from misophonia. However, there is a dearth of literature on audiological assessment and management of persons with misophonia. The purpose of this report is to discuss the assessment of misophonia and highlight the management option that helped a patient with misophonia. Method A case study of a 26-year-old woman with the complaint of decreased tolerance to specific sounds affecting quality of life is reported. Audiological assessment differentiated misophonia from hyperacusis. Management included retraining counseling as well as desensitization and habituation therapy based on the principles described by P. J. Jastreboff and Jastreboff (2014). A misophonia questionnaire was administered at regular intervals to monitor the effectiveness of therapy. Results A detailed case history and audiological evaluations including pure-tone audiogram and Johnson Hyperacusis Index revealed the presence of misophonia. The patient benefitted from intervention, and the scores of the misophonia questionnaire indicated a decrease in the severity of the problem. Conclusions It is important to differentially diagnose misophonia and hyperacusis in persons with sound tolerance disorders. Retraining counseling as well as desensitization and habituation therapy can help patients who suffer from misophonia.

scholarly journals Evaluation of the efficacy of hearing aids in older adults: a multiparametric longitudinal study protocol

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Domenico Cuda ◽  
Sara Ghiselli ◽  
Alessandra Murri
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Speech Perception ◽  
Hearing Aids ◽  
Assessment Tools ◽  
Elderly Subjects ◽  
Single Subject ◽  
Measurement Tools ◽  
First Time

Abstract Background Prevalence of hearing loss increases with age. Its estimated prevalence is 40–50 % in people over 75 years of age. Recent studies agree that declinein hearing threshold contribute to deterioration in sociality, sensitivity, cognition, and quality of life for elderly subjects. The aim of the study presented in this paper is to verify whether or not rehabilitation using first time applied Hearing Aids (HA) in a cohort of old people with hearing impairment improves both speech perception in a noisy environment over time and the overall health-related quality of life. Methods The monocentric, prospective, repeated measurements, single-subject, clinical observational study is to recruit 100 older adults, first-time HA recipients (≥ 65 years).The evaluation protocol is designed to analyze changes in specific measurement tools a year after the first HA usage in comparison with the evaluation before HA fitting. Evaluations will consist of multiparametric details collected through self-report questionnaires completed by the recipients and a series of commonly used audiometric measures and geriatric assessment tools. The primary indicator of changes in speech perception in noise to be used is the Italian version of Oldenburg Satz (OLSA) test whereas the indicator of changes in overall quality of life will be the Assessment of Quality of Life (AQoL) and Hearing Handicap Inventory for the Elderly (HHIE) questionnaires. The Montreal Cognitive Assessment (MoCA) will help in screening the cognitive state of the subjects. Discussion The protocol is designed to make use of measurement tools that have already been applied to the hearing-impaired population in order to compare the effects of HA rehabilitation in the older adults immediately before first HA usage (Pre) and after 1 year of experience (Post). This broad approach will lead to a greater understanding of how useful hearing influences the quality of life in older individuals, and therefore improves potentials for healthy aging. The data is to be analyzed by using an intrasubject endpoint comparison. Outcomes will be described and analyzed in detail. Trial registration This research was retrospectively registered underno. NCT04333043at ClinicalTrials.gov (http://www.clinicaltrials.gov/) on the 26 March 2020. This research has been registered with the Ethics Committee of the Area Vasta Emilia Nord under number 104, date of approval 17/07/2017.

scholarly journals 4580 Development of a play-based coaching intervention to improve quality of life and wellbeing for mothers with cancer and their young children

2020 ◽  
Vol 4 (s1) ◽  
pp. 27-27
Author(s):  
Rosa Roman-Oyola ◽  
Anita Bundy ◽  
Eida Castro ◽  
Osiris Castrillo
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Depression Symptoms ◽  
Improve Quality ◽  
Structured Interviews ◽  
Yield Data ◽  
Implementation Phase ◽  
Coaching Intervention ◽  
Phase 1B

OBJECTIVES/GOALS: Mothers with cancer who have young children experience life disruptions when treatment procedures limit mother-child interactions. This study proposes the development of an intervention combining the Coaching approach with the Model of Playfulness to improve Quality of Life (QoL) and wellbeing of these patients and their young children. METHODS/STUDY POPULATION: This embedded mixed method study will be guided by the two initial phases of the ORBIT Model for the development of behavioral interventions for patients with chronic diseases. Participants will be mothers in the post-acute treatment stage of cancer (n = 6) and their children who are between 2 years and a half and 6 years, 11 months. Phase 1A, Definition, builds on qualitative data from a concurrent study exploring the experiences of mothers with cancer playing with their young children. As part of this phase, we will develop a play-based coaching intervention. In Phase 1B, Refinement, we will employ in-depth semi-structured interviews and standardized tools to evaluate acceptability of the intervention and preliminary outcomes. This will serve to further refine the intervention. RESULTS/ANTICIPATED RESULTS: Phase 1A will yield a plan for the intervention and data to enhance its initial implementation. Phase 1B will yield data, from the perspective of the mothers, about acceptability of the intervention procedures (e.g., delivery strategy, place for the intervention, time devoted, and outcome measures). This will enable modifications to the intervention. Additionally, Phase IB will yield preliminary data from specific QoL and wellbeing measures. For the mother, data about anxiety and depression symptoms, stress levels, and parental self-efficacy; for the child, emotional and behavioral indicators; for both: playfulness. DISCUSSION/SIGNIFICANCE OF IMPACT: This study entails the development of an intervention to enhance QoL and wellbeing of mothers with cancer and their children. Play moments as the centerpiece of the intervention, represent an innovative approach. Findings will guide the design of future feasibility studies to advance the development of this outcome driven intervention.

scholarly journals QOLP-04. PILOT STUDY OF A VIDEOCONFERENCE-BASED PSYCHOLOGICAL INTERVENTION FOR FAMILY CAREGIVERS OF PATIENTS WITH MALIGNANT GLIOMAS

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii175-ii175
Author(s):  
Deborah Forst ◽  
Michelle Mesa ◽  
Emilia Kaslow-Zieve ◽  
Areej El-Jawahri ◽  
Joseph Greer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Self Efficacy ◽  
Coping Skills ◽  
Malignant Gliomas ◽  
Anxiety Symptoms ◽  
Structured Interviews ◽  
Post Intervention ◽  
Clinically Significant ◽  
And Coping

Abstract BACKGROUND Caregivers of patients with malignant gliomas experience substantial anxiety symptoms while caring for someone with progressive neurological decline. Yet, interventions to reduce psychological distress and improve quality of life (QoL) in this caregiver population are lacking. METHODS We conducted an open pilot study evaluating feasibility and acceptability of a cognitive behavioral therapy-based intervention for caregivers of patients with malignant gliomas with clinically significant anxiety (Generalized Anxiety Disorder [GAD-7] score ≥ 5). Caregivers participated in six videoconference sessions with a mental health provider. We defined the intervention as feasible if ≥ 70% of eligible caregivers enrolled and ≥ 70% of those enrolled completed ≥ 50% of sessions. We evaluated intervention acceptability in semi-structured interviews. Caregivers completed baseline and post-intervention surveys assessing anxiety and depression symptoms (Hospital Anxiety and Depression Scale), QoL (Caregiver Oncology Quality of Life Questionnaire), caregiving burden (Caregiver Reaction Assessment), self-efficacy (Lewis Cancer Self-Efficacy Scale), and perceived coping skills (Measure of Current Status-Part A). We explored post-intervention changes using paired t-tests. RESULTS We obtained consent from 70.0% (21/30) of caregivers approached, of which 66.7% (14/21) had clinically significant anxiety and thus were eligible to participate (mean age=55.7 years, 64.3% female). Among enrolled caregivers, 71.4% (10/14) completed ≥ 50% of sessions. In semi-structured interviews, all participants found the intervention helpful and valued the ability to participate remotely via videoconference. Among caregivers who completed at least one session, 80.0% (8/10) completed all assessments and were included in analyses. Post-intervention, caregivers reported reduced anxiety symptoms (P=.02) and improved QoL (P=.03) and coping skills (P=.001). We found no significant change in depression, caregiving burden, or self-efficacy. CONCLUSION Our videoconference-based intervention is feasible and acceptable to caregivers. Participants reported significant improvements in anxiety symptoms, quality of life, and coping skills post-intervention, supporting further investigation of the intervention in a randomized controlled trial.

scholarly journals How to Intervene in the Health Management of the Oncological Patient and of Their Caregiver? A Narrative Review in the Psycho-Oncology Field

2021 ◽  
Vol 11 (7) ◽  
pp. 99
Author(s):  
Gian Piero Turchi ◽  
Marta Silvia Dalla Riva ◽  
Luisa Orrù ◽  
Eleonora Pinto
Keyword(s):  
Quality Of Life ◽  
Health Management ◽  
Psychological Treatment ◽  
Management Strategies ◽  
Well Being ◽  
Narrative Review ◽  
Treatment Modalities ◽  
Oncological Patient ◽  
Post Surgery

Starting from statistical data derived from the oncological field, some articles have highlighted the importance of communication in the patient–caregiver dyad and have considered the various roles involved in a cancer diagnosis situation. Thus, the question of how to intervene in terms of “quality of life” from the time of diagnosis to the recovery or death of a cancer patient, beyond the sanitary and physical dimensions, has become relevant. Therefore, the present narrative review aims to offer an overview of the state of the art in terms of the psychological treatment modalities of cancer patients, from the diagnosis to the post-surgery period. A total of 67 articles were collected and analyzed, in relation to (1) psychological constructs employed in the oncological field, (2) intervention models and (3) quality of life and well-being measurement and evaluation tools. We described these articles, differentiating between those focusing on the role of (1) the patient, (2) the caregiver, (3) the patient–caregiver dyad and (4) healthcare professional roles. The oncological diagnosis and its repercussions in the lives of the patient and caregiver were explored and critical aspects that emerged from the literature were highlighted. In conclusion, the analysis allowed some considerations about the need to define research protocols and useful management strategies for increasing the overall health of patients with cancer diagnoses and the people who surround them.

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