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The Functional Assessment of Cancer Therapy–Bone Marrow Transplant Version 4 (FACT-BMT) is a widely used instrument to assess quality of life in individuals treated with bone marrow transplantation (BMT). Our aim was to determine the reliability and validity of the Turkish version of the FACT-BMT in patients undergoing BMT.
Patients between the age of 20 and 65 years and who had undergone BMT at least 3 months before the study were included. Validity was determined using exploratory and confirmatory factor analysis. To determine convergent validity, the European Cancer Research and Treatment Organization Quality of Life Questionnaire–Cancer30 (EORTC QLQ-C30), the Brief Fatigue Inventory (BFI), and the Eastern Cooperative Oncology Group (ECOG) performance score were used. Cronbach's alpha, intra-class correlation coefficient (ICC), and item-total correlation (ITC) values were calculated to assess the reliability of the FACT-BMT.
Totally, 114 patients (F/M: 47/67) treated with BMT (mean age: 49.50 ± 12.50 years) were included. Confirmatory and exploratory factor analysis revealed that the FACT-BMT and the Bone Marrow Transplantation Subscale (BMTS) had sufficient fit. The FACT-BMT was moderately to strongly correlated with the EORTC QLQ-C30, the BFI, and the ECOG performance score (p < 0.001). Cronbach's alpha and ICC values of the FACT-BMT were acceptable (0.925 and 0.956, respectively). The ITC values of each item of the FACT-BMT were also acceptable (ranged from 0.296 to 0.737). Patients undergoing autologous BMT had a significantly higher BMTS score than those undergoing allogeneic BMT (p < 0.05).
Significance of results
The Turkish version of the FACT-BMT is valid, reliable, and sensitive to changes in quality of life in patients undergoing BMT.
The active ageing approach supports a set of roles or activities that are supposed to be beneficial for older adults. This paper reassesses the benefits of activities for the quality of life by (a) analysing many activities at the same time to control each other, (b) using panel data to detect the effects of activities over time, and (c) performing separate analyses for four European regions to test the context-specificity of the effects. The effects of roles in later life are tested on panel data from three waves of the Survey of Health, Ageing and Retirement in Europe (SHARE) project. The results of fixed-effects regression show that only some activities – volunteering, participating in a club and physical activity – increase the quality of life, and that care-giving within the household has the opposite effect. Moreover, the beneficial effects are much weaker and less stable than the other types of regression suggest; they are beneficial only in some regions, and their effect is much weaker than the effects of age, health and economic situation. Therefore, the active ageing approach and activity theory should reflect the diverse conditions and needs of older adults to formulate more-context-sensitive and less-normative policy recommendations.
Health-related quality of life (HRQoL) is severely impaired in persons receiving dialysis. Malnutrition has been associated with some measures of poor HRQoL in cross-sectional analyses in dialysis populations, but no studies have assessed the impact of malnutrition and dietary intake on change in multiple measures of HRQoL over time. We investigated the most important determinants of poor HRQoL and the predictors of change in HRQoL over time using several measures of HRQoL. We enrolled 119 haemodialysis and 31 peritoneal dialysis patients in this prospective study. Nutritional assessments (Subjective Global Assessment [SGA], anthropometry and 24-hour dietary recalls) and HRQoL questionnaires (Short Form-36 [SF-36] mental [MCS] and physical component scores [PCS] and European QoL-5 Dimensions [EQ5D] health state [HSS] and visual analogue scores [VAS]) were performed at baseline, 6 and 12 months. Mean age was 64(14) years. Malnutrition was present in 37% of the population. At baseline, malnutrition assessed by SGA was the only factor independently (and negatively) associated with all four measures of HRQoL. No single factor was independently associated with decrease in all measures of HRQoL over 1 year. However, prevalence/development of malnutrition over one year was an independent predictor of 1-year decrease in EQ5D HSS and 1-year decrease in fat intake independently predicted the 1-year decline in SF-36 MCS and PCS, and EQ5D VAS. These findings strengthen the importance of monitoring for malnutrition and providing nutritional advice to all persons on dialysis. Future studies are needed to evaluate the impact of nutritional interventions on HRQoL and other long-term outcomes.
End-stage kidney disease and hemodialysis (HD) treatment are associated with a high symptom burden in many patients. This study aimed at updating patient-reported outcomes concerning quality of life, fatigue, anxiety, and depression in HD patients treated in a single center in order to assess the need for palliative care provision.
A cross-sectional design, in which a sample of patients treated at a single HD department (Rigshospitalet, Denmark) between January and June 2019, was analyzed using the Kidney Disease Quality of Life Short Form, the Multidimensional Fatigue Inventory, and the Hospital Anxiety and Depression Scale. In addition, we compared the results with previously published data from the same department (2000) and with an age- and sex-matched sample from the Danish general population (1997/2014). Chi-square and t-tests were used for comparisons.
Screened patients = 242, included = 141, analyzed = 131 (70.2% male, mean age = 61.3 years). HD patients reported low scores for quality of life, high scores for fatigue, and approximately 30% had anxiety/depression. Regarding quality of life, they had significantly lower scores on general health (P ≤ 0.000), vitality (P = 0.009), social functioning (P = 0.001), mental health (P = 0.007), and mental component (P = 0.005) compared with former data of HD patients. Moreover, they reported significantly poorer quality of life and worse fatigue compared with the general Danish population.
Significance of results
In the patients undergoing HD, quality of life was poor and worsened when compared with former HD patients’ data. Additionally, fatigue, depression, and anxiety in HD patients were prevalent. A clear need for palliative care provision was observed.
To investigate global and momentary effects of a tablet-based non-pharmacological intervention for nursing home residents living with dementia.
Cluster-randomized controlled trial.
Ten nursing homes in Germany were randomly allocated to the tablet-based intervention (TBI, 5 units) or conventional activity sessions (CAS, 5 units).
N = 162 residents with dementia.
Participants received regular TBI (n = 80) with stimulating activities developed to engage people with dementia or CAS (n = 82) for 8 weeks.
Apathy Evaluation Scale (AES-I, primary outcome), Quality of Life in Alzheimer’s Disease scale, QUALIDEM scale, Neuropsychiatric Inventory, Geriatric Depression Scale, and psychotropic medication (secondary outcomes). Momentary quality of life was assessed before and after each activity session. Participants and staff were blinded until the collection of baseline data was completed. Data were analyzed with linear mixed-effects models.
Levels of apathy decreased slightly in both groups (mean decrease in AES-I of .61 points, 95% CI −3.54, 2.33 for TBI and .36 points, 95% CI −3.27, 2.55 for CAS). Group difference in change of apathy was not statistically significant (β = .25; 95% CI 3.89, 4.38, p = .91). This corresponds to a standardized effect size (Cohen’s d) of .02. A reduction of psychotropic medication was found for TBI compared to CAS. Further analyses revealed a post-intervention improvement in QUALIDEM scores across both groups and short-term improvements of momentary quality of life in the CAS group.
Our findings suggest that interventions involving tailored activities have a beneficial impact on global and momentary quality of life in nursing home residents with dementia. Although we found no clear advantage of TBI compared to CAS, tablet computers can support delivery of non-pharmacological interventions in nursing homes and facilitate regular assessments of fluctuating momentary states.
The relationship between adherence to a Mediterranean diet (MedDiet) and health-related quality of life (HRQoL) is unclear, particularly in vulnerable older adults. This cross-sectional analysis explored the association between adherence to a MedDiet and subscales of HRQoL in two independent cohorts of overweight and obese middle-aged to older adults with and without type 2 diabetes mellitus (T2DM). Both cohorts were community-dwelling (T2DM aged ≥ 50 years; non-T2DM aged ≥ 60 years) with a BMI ≥ 25 kg/m2. Adherence to a MedDiet was assessed using the Mediterranean Diet Adherence Screener, and HRQoL was determined using the 36-item short-form health survey. Multiple regression analysis was used to examine the association between adherence to a MedDiet and HRQoL subscales. A total of 152 middle-aged to older adults were included (T2DM: n 87, 71·2 (sd 8·2) years, BMI: 29·5 (sd 5·9) kg/m2; non-T2DM: n 65, 68·7 (sd 5·6) years, BMI: 33·7 (sd 4·9) kg/m2). Mean adherence scores for the entire cohort were 5·3 (sd 2·2) (T2DM cohort: 5·6(sd 2·3); non-T2DM cohort: 4·9 (sd 2·0)). In the adjusted model, using pooled data from both study cohorts, adherence to a MedDiet was significantly associated with the general health subscale of HRQoL (β = 0·223; 95 % CI 0·006, 0·044; P = 0·001). Similar findings were also observed in the T2DM cohort (β = 0·280; 95 % CI 0·007, 0·054; P = 0·001). However, no additional significant associations between adherence to a MedDiet and HRQoL subscales were observed. We showed that adherence to a MedDiet was positively associated with the general health subscale of HRQoL in middle-aged to older adults with T2DM. However, larger longitudinal data in older adults with a wider range of adherence scores, particularly higher adherence, are required to better understand the direction of this relationship.
Relatives are often central in caring for patients with amyotrophic lateral sclerosis (ALS), involving considerable physical, emotional, and social challenges. The aim of this study was to describe individual quality of life (iQoL) among relatives of patients with ALS, from diagnosis through disease progression.
A total of 31 relatives were included. Data collection was performed at five time points: 1–3 months after their relatives had been diagnosed with ALS and every 6 months for 2 years. Quality of life was determined using the Schedule of Evaluation of Individual Quality of Life — Direct Weighting (SEIQoL-DW), emotional distress with the Hospital Anxiety and Depression Scale (HADS), and the illness severity of the patients was determined with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R).
The SEIQoL-DW involves participants nominating the important life areas. The most nominated areas were family, friends, health, and leisure. Although most relatives had overall good and stable iQoL, several had scores indicating poor iQoL on some occasions during the disease trajectory. The relatives’ iQoL correlated with emotional well-being and the patient's physical function at different time points.
Significant of result
Social relations, emotional well-being, and rapid decline in the patient's physical function influence the relatives’ iQoL. Measuring both emotional well-being and iQoL, with a focus on the relatives’ own descriptions of perceived iQoL and those factors contributing to their iQoL during the disease trajectory may improve the possibility of identifying and supporting those relatives with poor iQoL.
This study investigated death anxiety in patients with primary brain tumor (PBT). We examined the psychometric properties of two validated death anxiety measures and determined the prevalence and possible determinants of death anxiety in this often-overlooked population.
Two cross-sectional studies in neuro-oncology were conducted. In Study 1, 81 patients with PBT completed psychological questionnaires, including the Templer Death Anxiety Scale (DAS). In Study 2, 109 patients with PBT completed similar questionnaires, including the Death and Dying Distress Scale (DADDS). Medical and disease-specific variables were collected across participants in both studies. Psychometric properties, including construct validity, internal consistency, and concurrent validity, were investigated. Levels of distress were analyzed using frequencies, and determinants of death anxiety were identified using logistic regression.
The DADDS was more psychometrically sound than the DAS in patients with PBT. Overall, 66% of PBT patients endorsed at least one symptom of distress about death and dying, with 48% experiencing moderate-severe death anxiety. Generalized anxiety symptoms and the fear of recurrence significantly predicted death anxiety.
Significance of results
The DADDS is a more appropriate instrument than the DAS to assess death anxiety in neuro-oncology. The proportion of patients with PBT who experience death anxiety appears to be higher than in other advanced cancer populations. Death anxiety is a highly distressing symptom, especially when coupled with generalized anxiety and fears of disease progression, which appears to be the case in patients with PBT. Our findings call for routine monitoring and the treatment of death anxiety in neuro-oncology.
Palliative care (PC) is patient and family-centered supportive care intended to improve symptom management, reduce caregiver burden, coordinate care, and improve quality of life for patients diagnosed with serious illness. Optimally, PC is begun close to initial diagnosis and delivered in synchrony with disease-specific treatment until symptom relief or patient death. The purpose of this study was to examine cancer survivors’ knowledge and perceptions of PC using a nationally representative sample of US adults from the Health Information National Trends Survey (HINTS).
A total of 593 HINTS respondents reported a personal history of cancer and were included in the sample (55.56% female; mean age of 65.88 years, SD = 18.21; mean time from diagnosis 13.83 years, SD = 18.21). Weighted logistic regression models were conducted to identify correlates of PC knowledge.
Of the 593 cancer survivors in the sample, 66% (N = 378) reported that they had never heard of PC, 18% (N = 112) reported knowing a little bit about PC, and 17% (N = 95) reported knowing what PC is and could explain it to someone else. In multivariable analysis, survivors of color (Hispanic/Latino, Black, Asian, American Indian, and Pacific Islander), males, and those less educated were significantly less likely to report knowledge of PC. Among survivors who did report knowledge of PC, a lack of distinction between differing modes of supportive care exists.
Significance of results
These findings suggest a need to increase PC knowledge among cancer survivors with the ultimate goal of addressing disparities in PC acceptance and utilization.
The Mediterranean diet (MD) is a model of a healthy diet and healthy lifestyle. Adherence to the MD has been correlated with a reduction in many metabolic disorders including cancers. The factors associated with adolescents’ adherence to the MD in North Lebanon using the KIDMED index have never been explored. Therefore, we thought to examine these factors amongst a sample of them. A cross-sectional survey was conducted in the city of Tripoli, North Lebanon. A total of 798 adolescents aged 11–18 years were randomly selected to participate in this study. All participants completed a questionnaire assessing adherence to the MD (KIDMED index), physical activity (physical activity questionnaires for older children and adolescents), health-related quality of life (KIDSCREEN-27 index) and sociodemographic characteristics (age, sex, grade level and parents’ educational status). Anthropometric measurements, including weight, height and waist circumference, were also collected. Adherence to the MD was good amongst only 13·3 % of the adolescents. The prevalence rate of overweight and obesity was elevated, affecting 36·9 % of the students. Lower adherence to the MD was significantly correlated with skipping meals (P = 0·001). Meanwhile, adolescents who were engaged in a high level of physical activity, those who consumed more meals with their families and those who benefited from better physical well-being had a better diet quality (P < 0·001). Nutrition intervention programmes, as well as public health policies, would be of interest in order to improve diet quality amongst Lebanese adolescents.
Despite the need for a common definition of severe and enduring anorexia nervosa (SE-AN) with the overarching goal to optimize treatments, this definition still is being debated. Therefore, in this study we conducted an in-depth investigation of the history of AN and its clinical outcomes on inpatients with AN to ascertain the eventual “profiles” for individuals with varying durations of the illness (DOI).
We recruited 169 inpatients with AN, grouping them according to DOI: <3 years (short duration, SD-AN); 3–6.99 years (medium duration, MD-AN); and ≥7 years (long duration, LD-AN). We then performed a self-report and interview-based investigation of AN history, clinical data, eating, and general psychopathology, including personality, premorbid traits, stage of change, and quality of life. We measured the clinical outcomes for hospitalization as well.
The majority of the measures did not differ across groups. Those with LD-AN were older and diagnosed mostly with the binge-purging AN subtype, failed more previous AN-related treatments, reported a lower lifetime body mass index, and trended toward a younger age at onset when compared to the other groups. All patients responded equally well to hospitalization, but patients with SD-AN improved less in drive for thinness and body-related concerns.
We did not find the “enduringness” of AN to be a specifier of severity. Hospitalization was effective for those with LD-AN and MD-AN, while interventions for the core cognitive aspects of over-evaluation of body shape should be offered to patients with SD-AN.
The main purpose of the present study was to evaluate whether complications related to surgery for exostoses are associated with a decrease in patients’ quality of life.
This was a retrospective study for which the following information was collected: sex, age, pre- and post-operative symptoms, pre- and post-operative audiological evaluation results, surgical approach, instruments used, complications, and Glasgow Benefit Inventory score.
The study included 67 patients (94 ears). The three main complaints reported were wax retention, otitis externa and hearing loss. Surgical complications occurred in 14.9 per cent of patients. Patients experienced a significant benefit from surgery, especially in relation to somatic state, with a global Glasgow Benefit Inventory score of + 44.3. No significant difference was found between the global Glasgow Benefit Inventory changes and surgery-related complications (p = 0.093).
After surgery for exostoses, the vast majority of patients showed improvement. Complications related to surgery in general do not seem to influence patients’ satisfaction with surgery.
Metacognitive knowledge (MK; general awareness of cognitive functioning) and metacognitive experience (ME; awareness of cognitive performance on a specific cognitive task) represent two facets of metacognition that are critical for daily functioning, but are understudied in bipolar disorder. This study was conducted to evaluate MK and ME across multiple cognitive domains in individuals diagnosed with bipolar disorder and unaffected volunteers, and to investigate the association between metacognition and quality of life (QoL).
Fifty-seven euthymic participants with bipolar disorder and 55 demographically similar unaffected volunteers provided prediction and postdiction ratings of cognitive task performance across multiple cognitive domains. Self-ratings were compared to objective task performance, and indices of MK and ME accuracy were generated and compared between groups. Participants rated QoL on the Quality of Life in Bipolar Disorder Scale (QoL.BD).
Metacognitive inaccuracies in both MK and ME were observed in participants with bipolar disorder, but only in select cognitive domains. Furthermore, most metacognitive inaccuracies involved underestimation of cognitive ability. Metacognitive indices were minimally associated with medication variables and mood symptoms, but several indices were related to QoL.
Individuals with bipolar disorder demonstrate inaccuracies in rating their cognitive functioning and in rating their online cognitive task performance, but only on select cognitive functions. The tendency to underestimate performance may reflect a negative information processing bias characteristic of mood disorders. Metacognitive variables were also predictive of QoL, indicating that further understanding of cognitive self-appraisals in persons with bipolar disorder has significant clinical relevance.
Health utility instruments are increasingly being used to measure impairment in health-related quality of life (HRQoL) after stroke. Population-based studies of HRQoL after stroke and assessment of differences by age and functional domain are needed.
We used the Canadian Community Health Survey linked with administrative databases to determine HRQoL using the Health Utilities Index Mark 3 (HUI3) among those with prior hospitalization or emergency department visit for stroke and compared to controls without stroke. We used multivariable linear regression to determine the difference in HUI3 between those with stroke and controls for the global index and individual attributes, with assessment for modification by age (<60, 60–74, and 75+ years) and sex, and we combined estimates across survey years using random effects meta-analysis.
Our cohort contained 1240 stroke survivors and 123,765 controls and was weighted to be representative of the Canadian household population. Mean health utility was 0.63 (95% confidence interval [CI] 0.58, 0.68) for those with stroke and 0.83 (95% CI 0.82, 0.84) for controls. There was significant modification by age, but not sex, with the greatest adjusted reduction in HUI3 among stroke respondents aged 60–74 years. Individual HUI3 attributes with the largest reductions in utility among stroke survivors compared to controls were mobility, cognition, emotion, and pain.
In this population-based study, the reduction in HUI3 among stroke survivors compared to controls was greatest among respondents aged 60–74, and in attributes of mobility, cognition, emotion, and pain. These results highlight the persistent impairment of HRQoL in the chronic phase of stroke and potential targets for community support.
Outcome measurement in forensic mental health services can support service improvement, research, and patient progress evaluation. This systematic review aims to identify instruments available for use as outcome measures in this field and assess the evidence for the most common instruments, specific to the forensic context, which cover multiple outcome domains.
Studies were identified by searching seven online databases. Additional searches were then performed for 10 selected instruments to identify additional information on their psychometric properties. Instrument manuals and gray literature was reviewed for information about instrument development and content validity. The quality of evidence for psychometric properties was summarized for each instrument based on the COnsensus-based Standards for health Measurement INstruments (COSMIN) approach.
A total of 435 different instruments or variants were identified. Psychometric information on the 10 selected instruments was extracted from 103 studies. All 10 instruments had a clinician reported component with only two having patient reported scales. Half of the instruments were primarily focused on risk. No instrument demonstrated adequate psychometric properties in all eight COSMIN categories assessed. Only one instrument, the Camberwell Assessment of Need: Forensic Version, had adequate evidence for its development and content validity. The most evidence was for construct validity, while none was identified for construct stability between groups.
Despite the large number of instruments potentially available, evidence for their use as outcome measures in forensic mental health services is limited. Future research and instrument development should involve patients and carers to ensure adequate content validity.
The mini right axillary thoracotomy is an alternative surgical approach to repair certain congenital heart defects. Quality-of-life metrics and clinical outcomes in children undergoing either the right axillary approach or median sternotomy were compared.
Patients undergoing either approach for the same defects between 2018 and 2020 were included. Demographic details, operative data, and outcomes were compared between both groups. An abbreviated quality of life questionnaire based on the Infant/Toddler/Child Health Questionnaires focused on the patient’s global health, physical activity, and pain/discomfort was administered to all parents/guardians within two post-operative years.
Eighty-seven infants and children underwent surgical repair (right axillary thoracotomy, n = 54; sternotomy, n = 33) during the study period. There were no mortalities in either group. The right axillary thoracotomy group experienced significantly decreased red blood cell transfusion, intubation, intensive care, and hospital durations, and earlier chest tube removal. Up to 1 month, parents’ perception of their child’s degree and frequency of post-operative pain was significantly less after the right axillary thoracotomy approach. No difference was found in the patient’s global health or physical activity limitations beyond a month between the two groups.
With the mini right axillary approach, surrogates of faster clinical recovery and hospital discharge were noted, with a significantly less perceived degree and frequency of post-operative pain initially, but without the quality of life differences at last follow-up. While providing obvious cosmetic advantages, the minimally invasive right axillary thoracotomy approach for the surgical repair of certain congenital heart lesions is a safe alternative to median sternotomy.
Although mental distress and quality of life (QoL) impairments because of the pandemic have increased worldwide, the way that each community has been affected has varied.
This study evaluated the impact of social distancing imposed by coronavirus disease-2019 (COVID-19) on Brazilians’ mental health and QoL.
In this cross-sectional community-based online survey, data from 1156 community-dwelling adults were gathered between 11 May and 3 June 2020. We examined independent correlates of depression, anxiety and QoL, including sociodemographic and clinical characteristics, optimism/pessimism and spiritual/religious coping. Dependent variables were assessed using the 9-item Patient Health Questionnaire for depressive symptoms, the 7-item Generalized Anxiety Disorder Scale for anxiety symptoms, and the World Health Organization Quality of Life-BREF for QoL. Correlates of depressive and anxiety disorder were estimated using logistic regression.
There were high levels of depressive symptoms (41.9%) and anxiety symptoms (29.0%) in participants. Negative spiritual/religious coping was positively correlated with depressive disorder (odds ratio (OR) = 2.14 95% CI 1.63–2.80; P < 0.001) and with anxiety disorder (OR = 2.46 95% CI 1.90–3.18; P < 0.001), and associated with worse social and environmental QoL (P < 0.001). Healthcare professionals were less likely to have depressive symptoms (OR = 0.71, 95% CI 0.55–0.93; P < 0.001). Participants with friend/family with COVID-19 scored lower on psychological and environmental QoL (P < 0.05). Participants with a longer duration of social isolation were less likely to experience anxiety disorder (OR = 0.99, 95% CI 0.98–0.99; P = 0.004).
We found high levels of depressive and anxiety symptoms and low levels of QoL in Brazil, which has become a pandemic epicentre. Several characteristics were associated with negative mental health symptoms in this study. This information may contribute to local health policies in dealing with the mental health consequences of COVID-19.
To compare the efficacy of bone pâté versus bioactive glass in mastoid obliteration.
This randomised parallel groups study was conducted at a tertiary care centre between September 2017 and August 2019. Sixty-eight patients, 33 males and 35 females, aged 12–56 years, randomly underwent single-stage canal wall down mastoidectomy with mastoid obliteration using either bone pâté (n = 35) or bioactive glass (n = 33), and were evaluated 12 months after the operation.
A dry epithelised cavity (Merchant's grade 0 or 1) was achieved in 65 patients (95.59 per cent). Three patients (4.41 per cent) showed recidivism. The mean air–bone gap decreased to 16.80 ± 4.23 dB from 35.10 ± 5.21 dB pre-operatively. The mean Glasgow Benefit Inventory score was 30.02 ± 8.23. There was no significant difference between the two groups in these outcomes. However, the duration of surgery was shorter in the bioactive glass group (156.87 ± 7.83 vs 162.28 ± 8.74 minutes; p = 0.01).
Research has shown that long-term care (LTC) volunteers play important roles in enhancing the quality of life (QoL) of older LTC residents, often through providing unique forms of relational care. Guided by Kane’s QoL domains, we used a modified objective hermeneutics method to analyze how unique volunteer roles are represented and supported in provincial policies in Alberta, British Columbia, Ontario, and Nova Scotia. We found that policies define volunteer roles narrowly, which may limit residents’ QoL. This happens through (1) omitting volunteers from most regulatory policy, (2) likening volunteers to supplementary staff rather than to caregivers with unique roles, and (3) overemphasizing residents’ safety, security, and order. We offer insights into promising provincial policy directions for LTC volunteers, yet we argue that further regulating volunteers may be an inadequate or ill-suited approach to addressing the cultural, social, and structural changes required for volunteers to enhance LTC residents’ QoL effectively.
Sleep problems are common among children with autism spectrum disorder (ASD) and can have a negative impact on the child’s behaviour and daytime functioning. The current pilot study examined objective measurements of child and parent sleep as factors associated with the stress, anxiety, depressive symptoms, social support and quality of life of parents of children with ASD.
Participants were nine children with ASD and their parents (nine mothers and three fathers). Participants wore an actigraph for 7 consecutive days and nights. Measures of sleep habits and quality were used to ascertain child and parent sleep. Measures of parenting stress, anxiety, depressive symptoms, quality of life and social support were collated.
Results indicated the emergence of high parental stress, anxiety and depressive symptoms. Significant correlations were observed between parent depressive symptoms, and both subjective sleep quality and child sleep disruptions.
The present study found that parental well-being is affected by child sleep problems.