Criticism in the Parkinson’s Caregiving Relationship: A Key Target for Intervention

2021 ◽  
pp. 089198872110491
Author(s):  
Alejandro Interian ◽  
Sarah L. Mann ◽  
Shahrzad Mavandadi ◽  
Lauren M. St Hill ◽  
Rachel Kashan ◽  
...  
Keyword(s):  
Symptom Severity ◽  
Emotional Reactivity ◽  
Emotional Health ◽  
Motor Symptom ◽  
Caregiver Distress ◽  
Psychotherapeutic Intervention ◽  
Caregiver Health ◽  
Perceived Criticism ◽  
Negative Health Outcomes

Introduction: Caregiver distress is prevalent in Parkinson’s disease (PD) and predictive of negative health outcomes for both people with PD and caregivers. To identify future intervention targets, it is important to better elucidate the specific processes, such as criticism, that perpetuate burden. Objective: Evaluate the frequency and impact of criticism and reactivity to criticism in PD caregiving dyads. Methods: Eighty-three people with PD and their caregivers independently completed measures of criticism and physical and emotional health. Results: Criticism in the caregiving relationship was reported by 71.1% (n = 59) of people with PD and 80.7% (n = 67) of caregivers. Both perceived criticism and emotional reactivity to criticism were significant predictors of caregiver distress, adjusting for PD motor and non-motor symptom severity. In contrast, criticism was not related to PD depression. Conclusion: Criticism in the PD caregiving relationship is a clear target for psychotherapeutic intervention and may improve caregiver health and quality of life.

Fatigue, not self-rated motor symptom severity, affects quality of life in functional motor disorders

2018 ◽  
Vol 265 (8) ◽  
pp. 1803-1809 ◽  
Author(s):  
J. M. Gelauff ◽  
E. M. Kingma ◽  
J. S. Kalkman ◽  
R. Bezemer ◽  
B. G. M. van Engelen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Symptom Severity ◽  
Motor Symptom ◽  
Motor Disorders

Associations of Motor Symptom Severity and Quality of Life to Motor Task Performance in Upper and Lower Extremities Across Task Complexity in Parkinson’s Disease

Motor Control ◽  
2019 ◽  
Vol 23 (4) ◽  
pp. 445-460
Author(s):  
Anne Sofie B. Malling ◽  
Bo M. Morberg ◽  
Lene Wermuth ◽  
Ole Gredal ◽  
Per Bech ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Lower Extremity ◽  
Disease Severity ◽  
Symptom Severity ◽  
Task Complexity ◽  
Motor Symptom ◽  
Motor Tasks

The authors examined the associations between the performance of upper- and lower-extremity motor tasks across task complexity and motor symptom severity, overall disease severity, and the physical aspects of quality of life in persons with Parkinson’s disease. The performance was assessed for three lower-extremity tasks and two upper-extremity tasks of different levels of complexity. The motor symptoms and overall disease severity correlated significantly with all motor tasks with higher correlation coefficients in the complex tasks. Thus, the strength of the association between disease severity or severity of motor symptoms and motor performance is task-specific, with higher values in complex motor tasks than in simpler motor tasks. Mobility-related and activity-of-daily-living-related quality of life correlated with lower-extremity tasks of low and medium complexity and with the complex upper-extremity task, respectively; this suggests that Parkinson’s Disease Questionnaire-39 is capable of differentiating between the impact of gross and fine motor function on quality of life.

Hydrocephalus-related quality of life as assessed by children and their caregivers

2020 ◽  
Vol 26 (4) ◽  
pp. 353-363 ◽  
Author(s):  
Kathrin Zimmerman ◽  
Bobby May ◽  
Katherine Barnes ◽  
Anastasia Arynchyna ◽  
Elizabeth N. Alford ◽  
...  
Keyword(s):  
Posttraumatic Stress ◽  
Traumatic Stress ◽  
Pediatric Patients ◽  
Emotional Health ◽  
Social Emotional ◽  
Proxy Report ◽  
Cognitive Health ◽  
The Mean ◽  
Anxiety Depression

OBJECTIVEHydrocephalus is a chronic medical condition that has a significant impact on children and their caregivers. The objective of this study was to measure the quality of life (QOL) of children with hydrocephalus, as assessed by both caregivers and patients.METHODSPediatric patients with hydrocephalus and their caregivers were enrolled during routine neurosurgery clinic visits. The Hydrocephalus Outcomes Questionnaire (HOQ), a report of hydrocephalus-related QOL, was administered to both children with hydrocephalus (self-report) and their caregivers (proxy report about the child). Patients with hydrocephalus also completed measures of anxiety, depression, fatigue, traumatic stress, and headache. Caregivers completed a proxy report of child traumatic stress and a measure of caregiver burden. Demographic information was collected from administration of the Psychosocial Assessment Tool (version 2.0) and from the medical record. Child and caregiver HOQ scores were analyzed and correlated with clinical, demographic, and psychological variables.RESULTSThe mean overall HOQ score (parent assessment of child QOL) was 0.68. HOQ Physical Health, Social-Emotional Health, and Cognitive Health subscore averages were 0.69, 0.73, and 0.54, respectively. The mean overall child self-assessment (cHOQ) score was 0.77, with cHOQ Physical Health, Social-Emotional Health, and Cognitive Health subscore means of 0.84, 0.79, and 0.66, respectively. Thirty-nine dyads were analyzed, in which both a child with hydrocephalus and his or her caregiver completed the cHOQ and HOQ. There was a positive correlation between parent and child scores (p < 0.004 for all subscores). Child scores were consistently higher than parent scores. Variables that showed association with caregiver-assessed QOL in at least one domain included child age, etiology of hydrocephalus, and history of endoscopic third ventriculostomy. There was a significant negative relationship (rho −0.48 to −0.60) between child-reported cHOQ score and child-reported measures of posttraumatic stress, anxiety, depression, and fatigue. There was a similar significant relationship between caregiver report of child’s QOL (HOQ) and caregiver assessment of the child’s posttraumatic stress symptoms as well as their assessment of burden of care (rho = −0.59 and rho = −0.51, respectively). No relationship between parent-reported HOQ and child-reported psychosocial factors was significant. No clinical or demographic variables were associated with child self-assessed cHOQ.CONCLUSIONSPediatric patients with hydrocephalus consistently rate their own QOL higher than their caregivers do. Psychological factors such as anxiety and posttraumatic stress may be associated with lower QOL. These findings warrant further exploration.

The Factors of the Holistic Health Status of Thai Elders in the 21st Century

2020 ◽  
Vol 13 ◽  
Author(s):  
Manyat Ruchiwit ◽  
Kanjanee Phanphairoj ◽  
Tipsuda Sumneangsanor ◽  
Jinpitcha Mamom
Keyword(s):  
Health Status ◽  
21St Century ◽  
Emotional Health ◽  
Holistic Health ◽  
Alpha Coefficient ◽  
Factors Affecting ◽  
Stress Prevention ◽  
The Social ◽  
Whole Person

Background: Holistic health is important to life, perhaps especially for elders. Focus should not only be placed on illness or the physical part of their lives, but the whole person should also be considered, emphasizing the connection of their mind, body, and the environment. Objective: The aims of this research were to study the factors of the holistic health status (HHS) of the Thai elderly in the 21st century, and to predict the factors affecting the development of HHS in 3 aspects; physical health status, mental and emotional health status, and the social and environmental health status. Method: The data were collected from 928 Thai elderly aged 60 and over in the central part of Thailand. The research instrument was a questionnaire whose reliability was confirmed using a Cronbach alpha coefficient of .904. Multiple regression analysis was used for predicting the factors of HHS. Results: The results indicated that stress, increased age, gender, and social participation can predict the HHS of Thai elders, and stress can predict each 3 aspects. Therefore, stress prevention activities are very important for enhancing the HHS of Thai elders. Conclusion: The findings of this research can be used to improve the quality of life of elders in the 21st century.

The effect of positive thinking training on the quality of life of parents of adolescent with thalassemia

2019 ◽  
Vol 0 (0) ◽  
Author(s):  
Adeleh Sadeghloo ◽  
Parna Shamsaee ◽  
Elham Hesari ◽  
Golbanhar Akhondzadeh ◽  
Hamid Hojjati
Keyword(s):  
Quality Of Life ◽  
Emotional Health ◽  
Intervention Group ◽  
T Test ◽  
World Health ◽  
Positive Thinking ◽  
Significant Difference ◽  
And Control ◽  
Paired T Test

Abstract Introduction Thalassemia, as the most common chronic hereditary blood disorder in humans, can impose many adverse effects on parents and their affected children. On the other hand, positive thinking is the method or the result of a positive focus on a constructive issue, so by teaching positive thinking, we can improve physical and social function, and promote emotional health and overall quality of life. The aim of this study was to determine the effect of positive thinking training on the quality of life of parents of adolescents with thalassemia. Methods This quasi-experimental study was performed on 52 parents of adolescents with thalassemia who attended Taleghani Hospital in Golestan province, Iran in 2017. Samples were randomly assigned into two groups of intervention and control. The positive thinking training (based on the theory of Martin Seligman) was carried out in the intervention group in 10 (45–60 min) sessions over a 5-week period. Data collection tools in this study were the World Health Organization (WHO) quality of life questionnaire (WHOQOL-BREF) and a demographic information questionnaire. Data were analyzed by SPSS-16 software using independent t-test, the paired t-test and a covariance test. Results The results of paired t-test showed a significant difference in the score of quality of life in intervention group before and after the intervention (p < 0.001). However, this test did not show any significant difference in the control group (p = 0.11). The covariance test, after removing the pre-test score, showed a significant difference between the intervention and control groups in terms of the score of quality of life, so that 13% of the changes after the intervention were due to the intervention (p = 0.009, η = 0.13). Conclusion The positive thinking training increased the quality of life of parents of adolescents with thalassemia. Therefore, using this program can be an effective way of improving the quality of life of parents. Thus, positive thinking training is suggested to be used as an effective strategy for increasing the quality of life of parents with ill children.

510 A Profile of Physical Performance Variables in an Out-Patient Adult Population with Narcolepsy

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A201-A201
Author(s):  
Ragy Tadrous ◽  
Julie Broderick ◽  
Niamh Murphy ◽  
Lisa Slattery ◽  
Gillian Quinn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Physical Performance ◽  
Symptom Severity ◽  
Health Related Quality ◽  
Cardiopulmonary Fitness ◽  
Performance Variables ◽  
Related Quality ◽  
Health Related

Abstract Introduction Narcolepsy can significantly impact the physical and mental wellbeing of people with narcolepsy, and has been associated with significant reductions in quality of life and physical performance. People with narcolepsy demonstrate many barriers to being physically fit and active, such as sleepiness and social isolation. Despite physical functioning and vitality being the most affected domains of health-related quality of life in this cohort, little is known about how physical performance variables are affected in people with narcolepsy. Methods This cross-sectional study profiled the physical performance of adults with narcolepsy attending the Narcolepsy Centre located in St. James’s Hospital. Participants underwent a physical performance test battery that investigated cardiopulmonary fitness, physical activity, muscle strength and endurance. Furthermore, health-related quality of life (HRQoL), symptom severity and sedentary behaviour was ascertained through self-report questionnaires. Results A total of 23 participants were recruited in this study. The majority of participants were female (n=13, 56.52%) and the mean age was 31.53 (± 13.17) years. Physical performance was generally found to be lower than age-and-gender matched normative values for cardiopulmonary fitness, physical activity and muscle strength and endurance. Participants’ completed 42.20 ± 21.41 minutes of moderate-vigorous physical activity daily as measured by actigraphy. Considerable sedentary behaviour was objectively measured in this sample (10.21 hours). Symptom severity was high as measured by the Epworth Sleepiness Scale and the Narcolepsy Severity Scale, and participants reported reduced quality of life when compared to general population norms (US, UK, France and Norway). Conclusion Markedly reduced physical performance was identified in this sample of people with narcolepsy, irrespective of participant age, gender and BMI. Future research should explore the role of exercise in improving the physical fitness in people with narcolepsy, and the influence of exercise on HRQoL and symptom severity in this cohort. Support (if any) This study was completed as part of Mr Ragy Tadrous’ Master of Science (MSc) degree in Trinity College Dublin. This degree was co-sponsored by the Physiotherapy Department in St. James’s Hospital, Dublin.

scholarly journals Life with Parkinson’s Disease During the COVID-19 Pandemic: The Pressure Is “OFF”

2021 ◽  
pp. 1-5
Author(s):  
Trine HØrmann Thomsen ◽  
Susanna M. Wallerstedt ◽  
Kristian Winge ◽  
Filip Bergquist
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Motor Symptom ◽  
Free Text ◽  
Symptom Scores ◽  
Related Quality ◽  
Health Related ◽  
Potential Impact ◽  
Swedish Cohort

People with Parkinson’s disease (PwP) have been suggested to be more vulnerable to negative psychological and psycho-social effects of the COVID-19 pandemic. Our aim was to assess the potential impact of the COVID-19 pandemic in PwP. A Danish/Swedish cohort of 67 PwP was analysed. Health-related quality of life (HRQL), depression, anxiety, apathy, sleep and motor symptom-scores were included in the analysis. Additionally, the Danish participants provided free-text descriptions of life during the pandemic. Overall, the participants reported significantly better HRQL during the COVID-19 period compared with before. Reduced social pressure may be part of the explanation. Despite worsened anxiety, night sleep improved.

scholarly journals Measuring What Matters for Children: A Systematic Review of Frequently Used Pediatric Generic PRO Instruments

2021 ◽  
Author(s):  
Tasneem Arsiwala ◽  
Nuzhat Afroz ◽  
Kattayoun Kordy ◽  
Christel Naujoks ◽  
Francesco Patalano
Keyword(s):  
Quality Of Life ◽  
Child Health ◽  
Clinical Studies ◽  
Task Force ◽  
Emotional Health ◽  
Research Practices ◽  
European Collaboration ◽  
Patient Reported ◽  
Good Research

Abstract Objective To provide an assessment of the quality of the most frequently used self-reported, generic patient-reported outcome measures (PROMs) that measure health-related quality of life (HRQoL) in children against the good research practices recommended by ISPOR task force for the pediatric population. Method Literature search was conducted on OvidSP database to identify the generic pediatric PROMs used in published clinical studies. The quality of PROMs used in more than ten clinical studies were descriptively evaluated against the ISPOR task force’s good research practices. Results Six PROMs were evaluated, namely Pediatric Quality-of-Life inventory 4.0 (PedsQL), Child Health Questionnaire (CHQ), KIDSCREEN, KINDL, DISABKIDS and Child Health and Illness Profile (CHIP). All PROMs, except KIDSCREEN, had versions for different age ranges. Domains of physical, social, emotional health and school activities were common across all the instruments, while domains of family activities, parent relations, independence, and self-esteem were not present in all. Children’s input was sought during the development process of PROMs. Likert scales were used in all the instruments, supplemented with faces (smileys) in instruments for children under 8 years. KIDSCREEN and DISABKIDS were developed in a European collaboration project considering the cross-cultural impact during development. Conclusion The comparison of the instruments highlights differences in the versions for different pediatric age groups. None of the PROMs fulfill all the good research practices recommended by the ISPOR task force. Further research is needed to define which age-appropriate domains are important for older children and adolescents.

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