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Background: The COVID‐19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic. Method: Surveys were administered to three samples of relatives in the Netherlands in 2019 (N = 105) and during the first waves of COVID‐19 in June (N = 207) and October 2020 (N = 332). Associations between QoL and care burden, care competence, social support, and resilience, and changes over time were analysed using (logistic) regressions. Results: No significant changes in overall QoL nor its domains were found. Care burden was negatively associated with QoL and increased during the pandemic. Care competence was lower than in 2019. Competence, social support, and resilience were positively associated with QoL. Conclusions: Although relatives' QoL remained stable, the pandemic poses non‐negligible risks to their wellbeing. It is, therefore, crucial to provide relatives with adequate support. [ABSTRACT FROM AUTHOR]

Accessible Summary: In the past 30 years, many people with (intellectual) learning disabilities have been moved out of large "institutions" and into their own home in their local communityThese people are now often between 30 and 50 years oldWe asked people with learning disabilities aged between 30 and 50 and who are living in their local community what things, including work, that they enjoyed doingWe asked people with learning disabilities aged between 30 and 50 and who are living in their local community whether they felt that they could make decisions about their lifeWe found out the things that make their life good, and also what might stop people enjoying their lifeWe learnt that people with learning disabilities should receive more support to assist them before they retireWe learnt that people with learning disabilities still need more support and choice around who they live with Background: This study investigated perceived quality of life (QoL) of community‐dwelling middle‐aged adults (30–50 years) with an intellectual disability and/or developmental disability living in rural or urban areas in New South Wales and Queensland, Australia. The specific aim of the current paper was to provide a descriptive evidence base of QoL and its specific domains by various key demographic characteristics of middle‐aged individuals. This cohort is likely to have either experienced or reached adulthood during and after large‐scale deinstitutionalisation in Australia. Methods and procedures: A cross‐sectional design was utilised, based on the QoL‐Q survey, testing domains of satisfaction; Competence/Productivity; Empowerment/Independence; and social belonging/community integration. The survey included demographic questions and was distributed to participants through disability support agencies across two states. The final sample included 291 respondents. Results: The overall QoL‐Q scores ranged from 3.0 to 29.5 (Mean = 20.4, SD, 4.1), with considerable variation in mean scores both across and within domains. The two demographic areas that showed greatest predictive value for QoL were work status and accommodation issues. The loss of agency and control in choice of co‐residents influenced perceived QoL for empowerment and independence domain of QoL‐Q. Conclusions: The findings highlight QoL issues associated with policy decisions and support programmes for middle‐aged adults. The two key recommendations arising from the project are that future planning for post‐retirement or reduced working hours needs to commence at a much younger age than currently expected, and more attention needs to focus on facilitating individual decision‐making and choice within shared accommodation options. [ABSTRACT FROM AUTHOR]

Accessible summary: Dialectical Behaviour Therapy (DBT) is a therapy to help people manage their feelings.We ran a DBT group for people with an intellectual disability. The group seemed to help people feel better and manage their feelings, even after the group ended.The group was 2 years ago. We talked to three people who went to the group to see what people still remembered from the group and if DBT was still helping them.We think having a top‐up session might help people to remember and practise ideas from the group. Background: This paper reports quantitative and qualitative follow‐up data from three participants who attended a Dialectical Behaviour Therapy (DBT) group for people with an intellectual disability. Materials and Methods: Quantitative data regarding psychological well‐being, psychological distress (measured using the Psychological Therapies Outcome Scales; PTOS) and quality of life (measured using the Health of the Nation Outcome Scales—Learning Disability; HONOS‐LD) are reported for pre‐group, post‐group and at 6‐month and 2‐year follow‐up. Interviews were conducted with participants post‐group and at 2‐year follow‐up. Data were analysed using thematic analysis. Results: Improvements in scores on measures of psychological well‐being, psychological distress and quality of life appear to be maintained at 6‐month follow‐up, but scores at 2‐year follow‐up suggest a return to baseline. Qualitative self‐report data suggest a number of interesting ways participants adapted and individualised techniques from the group, as well as suggesting possible barriers to maintaining change in the longer term. Conclusions: Clinical implications are considered to improve effectiveness of similar interventions, as well research implications in order to improve knowledge about the longer term impact of group DBT interventions. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Aim. This paper is a report of a study to examine the degree to which socio-demographic variables, clinical variables and health-related quality of life are related to perceptions of disease severity and changes in disease severity in patients with multiple sclerosis. Background. Studies have shown that patients with multiple sclerosis report lower quality of life than the general population. Method. Questionnaires measuring health-related quality of life and perceived multiple sclerosis severity were mailed twice, 1 year apart, in May/June of 2000 and 2001, (t1 and t2), to patients with confirmed multiple sclerosis in Oslo, Norway ( n = 502). Clinical data about disease onset and course were retrieved from the Oslo City Multiple Sclerosis Registry. Findings. Among the 313 (62·4%) people who responded at both times, those with primary progressive disease course reported higher perceived multiple sclerosis severity ( P < 0·001), more mental health problems ( P = 0·004) and lower physical functioning ( P < 0·001) than those with a relapsing remitting/secondary progressive disease course. Patients with primary progressive disease course reported higher mean scores for multiple sclerosis severity at t2 than at t1. Multivariate regression analysis showed that social functioning was the only factor with statistically significant relationships to perceived multiple sclerosis severity among all sub-domains of health-related quality of life or personal factors. However, physical impairment was also independently related to patients' ratings of changes in multiple sclerosis severity during the year and illness severity 1 year later. Conclusion. In addition to patients' physical impairment, healthcare workers should pay special attention to issues related to their social functioning. [ABSTRACT FROM AUTHOR]

Aims: There are sex differences in the excess risk of diabetes‐associated cardiovascular disease. However, it is not clear whether these sex differences exist with regard to other complications like mental health aspects. Therefore, we investigated sex differences in the association of prediabetes and type 2 diabetes (T2D) with cognitive function, depression, and quality of life (QoL). Materials and Methods: In a population‐based cross‐sectional cohort study (n = 7639; age 40–75 years, 50% women, 25% T2D), we estimated sex‐specific associations, and differences therein, of prediabetes and T2D (reference: normal glucose metabolism) with measures of cognitive function, depression, and physical and mental QoL. Sex differences were analysed using multiple regression models with interaction terms. Results: In general, T2D, but not prediabetes, was associated with higher odds of cognitive impairment, major depressive disorder, and poorer QoL. The odds ratio (OR) of cognitive impairment associated with T2D was 1.29 (95% CI: 0.96–1.72) for women and 1.39 (1.10–1.75) for men. The OR of major depressive disorder associated with T2D was 1.19 (0.69–2.04) for women and 1.68 (1.02–2.75) for men. The mean difference of the physical QoL score (ranging from 0 to 100, with 100 indicating the best possible QoL) associated with T2D was −2.09 (−2.92 to −1.25) for women and −1.81 (−2.48 to −1.13) for men. The mean difference of the mental QoL score associated with T2D was −0.90 (−1.79 to −0.02) for women and −0.52 (−1.23 to 0.20) for men. There was no clear pattern of sex differences in the associations of either prediabetes or T2D with measures of cognitive function, depression, or QoL. Conclusions: In general, T2D was associated with worse cognitive function, depression, and poorer QoL. The strength of these associations was similar among women and men. [ABSTRACT FROM AUTHOR]

Objective: Distress screening programs aim to ensure appropriate psychooncological support for cancer patients, but many eligible patients do not use these services. To improve distress management, we need to better understand patients' supportive care needs. In this paper, we report the first key finding from a longitudinal study that focused on patients' intentions to use psychooncological support and its association with distress and uptake of the psychooncology service.Methods: We conducted a prospective, observational study in an Oncology Outpatient Clinic and assessed distress, intention to use psychooncological support, and uptake of the psychooncology service by using the Distress Thermometer, a semistructured interview, and hospital records. We analyzed data with a mixed-methods approach.Results: Of 333 patients (mean age 61 years; 55% male; 54% Distress Thermometer ≥ 5), 25% intended to use the psychooncology service (yes), 33% were ambivalent (maybe), and 42% reported no intention (no). Overall, 23% had attended the psychooncology service 4 months later. Ambivalent patients reported higher distress than patients with no intention (odds ratio = 1.18, 95% confidence interval [1.06-1.32]) but showed significantly lower uptake behavior than patients with an intention (odds ratio = 14.04, 95% confidence interval [6.74-29.24]). Qualitative analyses revealed that ambivalent patients (maybe) emphasized fears and uncertainties, while patients with clear intentions (yes/no) emphasized knowledge, attitudes, and coping concepts.Conclusions: We identified a vulnerable group of ambivalent patients with high distress levels and low uptake behavior. To optimize distress screening programs, we suggest addressing and discussing patients' supportive care needs in routine clinical practice. [ABSTRACT FROM AUTHOR]

Objective: Perinatal emotional well‐being is more than the presence or absence of depressive and anxiety disorders; it encompasses a wide range of factors that contribute to emotional well‐being. This study compares perinatal well‐being between women living in metropolitan and rural regions. Design: Prospective, longitudinal cohort. Participants/setting: Eight hundred and six women from Victoria and Western Australia recruited before 20 weeks of pregnancy and followed up to 12 months postpartum. Main outcome measures: Rurality was assessed using the Modified Monash Model (MM Model) with 578 in metropolitan cities MM1, 185 in regional and large rural towns MM2‐MM3 and 43 in rural to remote MM4‐MM7. The Structured Clinical Interview for DSM‐IV (SCID‐IV) was administered at recruitment to assess depression, and symptoms of depression and anxiety were measured using the Edinburgh Post‐natal Depression Scale and the State and Trait Anxiety Scale, respectively. Other measures included stressful events, diet, exercise, partner support, parenting and sleep. Results: The prevalence of depressive disorders did not differ across rurality. There was also no difference in breastfeeding cessation, exercise, sleep or partner support. Women living in rural communities and who also had depression reported significantly higher parenting stress than metropolitan women and lower access to parenting activities. Conclusions: Our study suggests while many of the challenges of the perinatal period were shared between women in all areas, there were important differences in parenting stress and access to activities. Furthermore, these findings suggest that guidelines and interventions designed for perinatal mental health should consider rurality. [ABSTRACT FROM AUTHOR]

Motivated by the analysis of quality of life data from a clinical trial on early breast cancer, we propose in this paper a generalized partially linear mean-covariance regression model for longitudinal proportional data, which are bounded in a closed interval. Cholesky decomposition of the covariance matrix for within-subject responses and generalized estimation equations are used to estimate unknown parameters and the nonlinear function in the model. Simulation studies are performed to evaluate the performance of the proposed estimation procedures. Our new model is also applied to analyze the data from the cancer clinical trial that motivated this research. In comparison with available models in the literature, the proposed model does not require specific parametric assumptions on the density function of the longitudinal responses and the probability function of the boundary values and can capture dynamic changes of time or other interested variables on both mean and covariance of the correlated proportional responses. Copyright © 2017 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Fibromyalgia is a complex pain‐focused syndrome. Previous studies showed that Cannabis is efficacious in promoting sleep, deepening and lengthening the sleep cycle, and good pain relief (compared with the SSRIs and SNRIs). Purpose: This study aimed to use the World Health Organization Quality of Life Bref questionnaire (WhoQoL‐bref) to characterize the impact of Cannabis Treatment initiation on the quality of life in women suffering from treatment‐resistant fibromyalgia. Methods: A prospective cohort study involving 30 women aged 18–70 years old diagnosed with fibromyalgia, exhausted pharmacological fibromyalgia treatment, and started Cannabis treatment. Pregnant women were excluded. WhoQoL‐bref was filled before Cannabis treatment initiation and 1 month following treatment. Results: Women's average age was 46 years (±5), with a poor general quality of life (1.47 ± 0.63), poor general health (1.47 ± 0.78), pain and discomfort, and dependence on medication (3.77 ± 1.3 and 3.07 ± 1.74, respectively) prior to Cannabis intervention. Cannabis treatment for 30 days showed a marked improvement in general quality of life (1.97 scores, p < 0.01), general health (1.83, p < 0.01), physical health (1.5, p < 0.01), and psychological domain (1.3, p < 0.01). Financial resources and home environment were not influenced by cannabis treatment (p = 0.07, p = 0.31, respectively). Conclusion: Results suggest a potentially significant role of Cannabis in treatment‐resistant Fibromyalgia women. Early Cannabis treatment may result in a beneficial short‐term effect on the quality of life through its influence on pain, sleep, and physical and psychological domains. Further studies are still indicated to understand this potential and its long‐term beneficial impact. [ABSTRACT FROM AUTHOR]

Institutional discrimination matters. The purpose of this longitudinal community‐based participatory research study was to examine institutional procedural discrimination, institutional racism, and other institutional discrimination, and their relationships with participants' health during a maternal and child health program in a municipal initiative. Twenty participants from nine multilingual, multicultural community‐based organizations were included. Overall reported incidences of institutional procedural discrimination decreased from April 2019 (18.6%) to November 2019 (11.8%) although changes were not statistically significant and participants reporting incidences remained high (n = 15 in April and n = 14 in November). Participants reported experiencing significantly less "[when] different cultural ways of doing things were shared, the project did not support my way" from April 2019 (23.5%, n = 4) to November 2019 (0%, n = 0), Wilcoxon signed‐rank test Z = −2.00, p < 0.05. Some participants reported experiencing institutional racism (29.4%, n = 5) and other institutional discrimination (5.9%, n = 1). Participants experiencing institutional racism, compared to those who did not, reported a higher impact of the Initiative's program on their quality of life (t = 3.62, p < 0.01). Participatory survey designs enable nurse researchers to identify hidden pathways of institutional procedural discrimination, describe the impacts experienced, and examine types of institutional discrimination in health systems. [ABSTRACT FROM AUTHOR]

The objectives of this study were to investigate the status and influence factors of caregiver's quality of life (QOL) on caring for patients with chronic wound during COVID‐19 epidemic. A prospective cross‐sectional study of 83 informal caregivers was included. The characteristics of informal caregivers as well as their QOL assessment by the Family Dermatology Life Quality Index (FDLQI) were measured, respectively. Single‐factor analysis and multiple regression analysis were carried out to explore the independent influence factors of QOL of caregiver on caring for patient with chronic wound. 62.65% of the caregivers were female with a mean age of (54.24 ± 12.6) years, and 34.9% of the caregivers were parents. The mean FDLQI score was 13.01 ± 7.53 at a high level. The following variables influenced the FDLQI scores of caregivers: self‐care ability of patients, patient's satisfaction of home‐based wound care, and home‐based wound care need of caregivers. The model was able to explain 29.9% of variance in QOL of caregiver (F = 6.561, P =.000, R2 = 0.299, adjusted R2 = 0.253). In conclusion, the impact of chronic wound disease on the QOL of caregivers is heavy during COVID‐19 epidemic. Wound professionals are suggested to pay attention to wound care need at home and QOL of caregiver on caring for patients with chronic wound during COVID‐19 epidemic and develop tailored wound health education and support programme in order to improve the QOL of caregivers. [ABSTRACT FROM AUTHOR]

The 'Experienced Involvement' (EX‐IN) training programme prepares and certifies individuals who have experienced mental health problems to work as peer support workers and to support others challenged by similar conditions. We aimed to assess the impact of the EX‐IN training on hope, self‐efficacy, introspection, stigma resistance, personal recovery, health‐related quality of life and employment in participants. Data was collected using standardized assessment instruments before the training started (t1) and upon course completion (t2). Data from 103 participants who participated in both measurement times were included into data analysis. Participants significantly improved their recovery, stigma resistance and introspection during the EX‐IN training. In addition, a significant higher proportion of participants were employed at t2. Participants whose last inpatient stay was 0–1 year before the start of the EX‐IN training showed significantly lower levels of stigma resistance, and self‐efficacy at t1 than participants with two or more years since the last inpatient stay. There were no significant changes in mean values over time, or in the mean values at t2 between the two groups. EX‐IN training has a positive influence on the handling of stigma, on one's recovery path and introspection. This indicates that EX‐IN training has a therapeutic effect on the participants. EX‐IN training seems to meet the challenges of peer support work. Therefore, the training can be recommended as preparation for working as a peer support worker as well as an intervention to improve one´s recovery process. [ABSTRACT FROM AUTHOR]

Abstract: While there exists an extensive body of knowledge regarding the risks associated with youth homelessness, very little work has addressed the process of exiting street contexts. This paper reports baseline findings from an ongoing longitudinal study assessing factors associated with a successful transition out of homelessness. Fifty-one formerly homeless youth who obtained stable housing in the past 2 months to 2 years participated in this study which took place in two Canadian urban centres. Findings include poorer functioning across all domains for youth residing in housing contexts without supports, a lack of relationship between psychological and behavioural aspects of community integration, and the central role of self-concept in mental health and quality of life. These findings suggest the need for ongoing support for youth exiting street spaces and social contexts, with attention to the importance of self-concept and psychological aspects of community integration. [Copyright &y& Elsevier]

Aim: To examine the evolution of child-parent discrepancy in reporting quality of life (QoL) between childhood and adolescence in children with cerebral palsy (CP) and to investigate potential factors associated with such a discrepancy.Method: We used data from the SPARCLE (Study of PARticipation of Children with CP Living in Europe) study, a population-based cohort study of children with CP, aged 8 to 12 years at baseline (in 2004-2005), in nine European centres, who were followed up at the age of 13 to 17 years. The KIDSCREEN-52 Quality of Life measure was used at baseline and follow-up; 354 child-parent dyads out of 500 eligible dyads were followed up (201 males, 153 females). We used intraclass correlation coefficients (ICCs) to examine agreement between parent proxy-reports and self-reported QoL. We used linear regression to examine factors associated with child-parent discrepancy in QoL reporting.Results: Agreement was low to moderate (ICC=0.16-0.48) in childhood and in adolescence across all QoL domains. In four domains (moods and emotions, self-perception, relationship with parents and home life, and social support and peers), the extent of the discrepancy increased significantly between childhood and adolescence. Parenting stress, child pain, and child behaviour problems influenced parent proxy-reports during both childhood and adolescence.Interpretation: The points of view of the child and their parents should be treated as complementary to obtain better knowledge regarding the QoL of children and adolescents with CP. [ABSTRACT FROM AUTHOR]

Objective: Prolonged grief disorder (PGD) and major depressive disorder (MDD) are common syndromes shaping bereaved caregivers' quality of life (QOL). However, distinctiveness of these syndromes warrants confirmation, and the temporal relationship of PGD and MDD symptoms has not been established. To fill these knowledge gaps, we conducted this longitudinal study.Methods: PGD symptoms, depressive symptoms, and psychological QOL were measured over 398 caregivers' first 2 years of bereavement using the Prolonged Grief-13 (PG-13) scale, Center for Epidemiologic Studies-Depression (CES-D) scale, and Short Form-36 Health Survey mental health summary, respectively. To clarify the distinctiveness of PGD and MDD symptoms, we examined their associations with psychological QOL by incremental validity testing. Distinctiveness and temporal relationship of PGD and MDD symptoms were also examined using longitudinal, lower-level mediation analysis with a lagged approach.Results: After the variance in psychological QOL was explained by CES-D scores (pseudo-R2 = 44.19%, P < .001), PG-13 scores significantly, incrementally increased the explained variance in psychological QOL (pseudo-R2 = 0.21%, P < .001), confirming the distinctiveness of PGD and MDD symptoms. CES-D scores mediated 40.7% of the time vs PG-13 score relationship, whereas PG-13 scores mediated 78.2% of the time vs CES-D score relationship with a better model fit, indicating that PG-13 scores assessed earlier mediated caregivers' current depressive status rather than vice versa.Conclusions: PGD and MDD are distinct constructs, and PGD precedes onset of MDD. Clinicians should distinguish between these two disorders and address bereaved caregivers' PGD to reduce PGD-associated distress and morbidity and to prevent MDD onset, thereby improving their QOL. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study was to examine health‐related quality of life (HRQoL) in Korean tuberculosis (TB) patients and to identify factors associated with HRQoL. Design: A longitudinal study design was employed with a six‐month tracking period. Sample: Fifty patients were enrolled from a single TB clinic. Measurements: Data on physical and mental HRQoL domains, physical symptoms, self‐esteem, stigma, treatment adherence and social support were collected on the day of TB diagnosis, and then again at 2‐ and 6‐months' post‐TB diagnosis. Results: Mental HRQoL scores did not change over time (p =.500) although changes in the physical HRQoL significantly improved over 6 months (p <.001); these changes were small and not considered clinically meaningful. Worse physical symptoms (p <.001) but better treatment adherence (p =.006) were associated with lower physical HRQoL. Similarly, worse physical symptoms but better self‐esteem (p <.001) and social support (p =.015) were associated with higher mental HRQoL. Conclusions: It is important that nurses caring for TB patients understand the physical and mental impact of TB and its treatment. [ABSTRACT FROM AUTHOR]

Background: Health for people with cerebral palsy (CP) must extend beyond physical impairments to include social, environmental, and psychological factors that are rarely captured by quantitative research alone. This qualitative study sought to explore the lived experience of young people with CP with their physical, mental, and emotional health in the context of a larger longitudinal Canadian study focusing on brain function, physical and mental health, and well‐being. Methods: An integrated research team (including people with CP or other impairments, clinicians, and researchers) was formed to study participant‐identified research needs. A purposive sample of 16 people with CP (seven female), aged 17–29, Gross Motor Function Classification System (GMFCS) levels I–V, participated in three focus groups that were conceptualized and analysed using interpretive description methodology. Results: This study reports the experiences of people with CP across GMFCS levels and identifies some consequences of growing up with the condition: physical and mental health issues, importance of meaningful participation, impact of the environment, and identity formation. Participants shared challenges related to accessibility, healthcare, social/environmental supports, relationships, and sustainable employment. Discussion Body structure and function challenges impact participation in activities of daily living, threatening participants' ability to form positive identities and live meaningful lives. People with CP desire to work but may require additional training, accommodation, and support to do so. Environmental conditions, including relationships, supportive people, and accessibility, shape participants' health, well‐being, and social/civic engagement. This study confirms the need for improved care for adults with CP, including multidisciplinary adult health team(s) and community services. [ABSTRACT FROM AUTHOR]

ABSTRACT: The purpose of this study was to determine how the health‐related quality of life (HRQoL) of patients with prostate cancer and their spouses change during the 6 months after diagnosis and which factors explain the changes. Patients with prostate cancer and their spouses have reported a decrease in HRQoL, but simultaneous follow‐up of the HRQoL of patients with prostate cancer and their spouses is rare. The sample consisted of 186 couples. The participants personally filled in the RAND‐36‐Item Health Survey, both at the time of diagnosis and 6 months later. Changes in the HRQoL were analysed statistically using descriptive statistics and non‐parametric tests. Linear regression models were used to identify the factors associated with the changes in HRQoL in the patients and their spouses. The HRQoL of patients with prostate cancer and their spouses did not change significantly during the first 6 months after diagnosis. Changes in the patients’ bodily pain and physical functioning were explained by their background variables. The spouses’ background variables did not explain the changes in HRQoL during the follow‐up period. In addition, the changes in the HRQoL of patients and their spouses are very similar. There is a need for long‐term assessment of changes in the HRQoL of patients with prostate cancer and their spouses. The findings indicate that attention should be paid to spouses with regard to the nursing of patients with prostate cancer, as spouses seem to be an important resource for patients with prostate cancer. [ABSTRACT FROM AUTHOR]

Copyright of Family Process is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Abstract: The individual process of resilience has been related to positive outcomes in mental disorders. We aimed (a) to identify the resilience domains from the Resilience Questionnaire for Bipolar Disorder that are associated cross sectionally and longitudinally with mental health outcomes in bipolar disorder (BD) and (b) to explore cross‐lagged associations among resilience factors. A clinical adult sample of 125 patients diagnosed with BD (62.10% female, mean age = 46.13, SD = 10.89) gave their informed consent and completed a battery of disease‐specific tools on resilience, personal recovery, symptomatology, psychosocial functioning, and quality of life, at baseline and at follow‐up (n = 63, 58.10% female, mean age = 45.13, SD = 11.06, participation rate = 50.40%). Resilience domains of self‐management of BD, turning point, self‐care, and self‐confidence were significantly associated with mental health indicators at baseline. In addition, self‐confidence at baseline directly predicted an increase in personal recovery at follow‐up, and self‐confidence improvement mediated the relationship between interpersonal support and self‐care at baseline and personal recovery at follow‐up. These findings highlight that resilience domains are significantly associated with positive mental health outcomes in BD and that some predict personal recovery at follow‐up. Moreover, some resilience factors improve other resilience factors over time. [ABSTRACT FROM AUTHOR]

Objective: Negative intrusive thoughts about one's prostate cancer have been associated with depressive mood and impaired quality of life among prostate cancer patients. However, little is known about possible predictors for negative intrusive thoughts among this group. We aimed to identify health- and care-related predictors for such thoughts among a population of men newly diagnosed with prostate cancer and undergoing radical prostatectomy.Methods: In the LAPPRO-trial, 3154 men (80%) answered study-specific questionnaires at admission and 3 months after surgery. Questions concerned socio-demographics, health, uncertainty, preparedness for symptoms, and the outcome-negative intrusive thoughts. Associations between variables were analyzed by log-binominal and multivariable approach.Results: The strongest predictor of negative intrusive thoughts at admission to surgery was uncertainty of cure, followed by binge drinking, poor physical health, antidepressant medication, not being prepared for urinary symptoms, age under 55, and physical pain. Reporting it not probable to obtain urinary symptoms after surgery lowered the odds. Negative intrusive thoughts before surgery were the strongest predictor for such thoughts 3 months later followed by uncertainty of cure, physical pain, younger age, living alone, and poor self-reported physical health.Conclusions: Our findings showed an association of preoperative uncertainty of cure as well as low preparedness for well-known surgery-induced symptoms with higher occurrence of negative intrusive thoughts about prostate cancer. Future studies should examine if interventions designed to have healthcare professionals inform patients about their upcoming prostatectomy reduce patients' negative intrusive thoughts and thereby, improve their psychological well-being. [ABSTRACT FROM AUTHOR]

Background: The experience of children undergoing hematopoietic stem cell transplantation (HSCT), including the ways in which different participants (ie, children, parents, and nurses) contribute to the overall picture of a child's experience, is poorly characterized. This study evaluated parent, child, and nurse perspectives on the experience of children during HSCT and factors contributing to interrater differences.Methods: Participants were enrolled in a multicenter, prospective study evaluating child and parent health-related quality of life over the year after HSCT. Children (n = 165) and their parents and nurses completed the Behavioral, Affective, and Somatic Experiences Scale (BASES) at baseline (before/during conditioning), 7 days after the stem cell infusion (day+7), and 21 days after the stem cell infusion (day+21). The BASES domains included Somatic Distress, Mood Disturbance, Cooperation, and Getting Along. Higher scores indicated more distress/impairment. Repeated measures models by domain assessed differences by raters and changes over time and identified other factors associated with raters' scores.Results: Completion rates were high (≥73% across times and raters). Multivariate models revealed significant time-rater interactions, which varied by domain. For example, parent-rated Somatic Distress scores increased from baseline to day+7 and remained elevated at day+21 (P < .001); children's scores were lower than parents' scores across time points. Nurses' baseline scores were lower than parents' baseline scores, although by day+21 they were similar. Older child age was associated with higher Somatic Distress and Mood Disturbance scores. Worse parent emotional functioning was associated with lower scores across raters and domains except for Cooperation.Conclusions: Multirater assessments are highly feasible during HSCT. Ratings differ by several factors; considering ratings in light of such factors may deepen our understanding of the child's experience. Cancer 2017;123:3159-66. © 2017 American Cancer Society. [ABSTRACT FROM AUTHOR]

Subjective well-being (SWB; Diener, 1984) comprises three primary components: life satisfaction (LS), positive affect (PA), and negative affect (NA). Multiple competing conceptualizations of the tripartite structure of SWB have been employed, resulting in widespread ambiguity concerning the definition, operationalization, analysis, and synthesis of SWB-related findings (Busseri & Sadava, 2011). We report two studies evaluating two predominant structural models (as recently identified by Busseri, 2015): a hierarchical model comprising a higher-order latent SWB factor with LS, PA, and NA as indicators; and a causal systems model specifying unidirectional effects of PA and NA on LS. A longitudinal study (N = 452; Mage  = 18.54; 76.5% female) and a lab-based experiment (N = 195; Mage  = 20.42 years; 87.6% female; 81.5% Caucasian) were undertaken. Structural models were evaluated with respect to (a) associations among SWB components across time (three months, three years in Study 1; one week in Study 2) and (b) the impact of manipulating the individual SWB components (Study 2). A hierarchical structural model was supported in both studies; conflicting evidence was found for the causal systems model. A hierarchical model provides a robust conceptualization for the tripartite structure of SWB. [ABSTRACT FROM AUTHOR]

Objective: Case management (CM) programs are intended to improve care coordination for cancer patients. This quasi-experimental, controlled study evaluated whether such a program was effective in improving health-related quality of life and reducing the psychological distress of breast cancer patients.Methods: For the study, 126 patients with CM and 118 patients with treatment as usual (TAU) were surveyed at baseline, a 6-month follow-up and a 12-month follow-up. Comparisons of the two groups with regard to quality of life (Short Form-8, European Organization for Research and Treatment of Cancer-11; primary outcome) and psychological distress (Hospital Anxiety and Depression Scale, distress thermometer; secondary outcome) were conducted.Results: Univariate t-tests regarding the primary and secondary outcomes demonstrated improvements in the relevant outcomes at the 6-month and 12-month follow-ups for the intervention group as well as for the control group. An analysis of covariance revealed that the controls showed a higher level of physical quality of life at the 12-month follow-up than the other time points and no differences at 6 months after the baseline.Conclusions: The tested CM model did not improve the quality of life or psychological well-being of the patients beyond treatment as usual. Possible reasons include that the treatment was already of high standards in the control group or that there are possibly different impacts than found in the literature regarding different forms of organization in CM. The need for and the tailoring of this CM model as well as the transfer of CM to other oncological indications remain to be clarified. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Often considered to be a symptomless condition, hypertension can be associated with a significant emotional burden. To analyze changes of health-related quality of life as well as the emotional burden questions regarding the impact of hypertension were incorporated into the noninterventional SeviTarget study. Comparisons were made between baseline and follow-up findings, and between patients with treatment target achievement and those without. A total of 5831 patients were recruited. At baseline, only 33.3% of patients described their current state of health as good or excellent, while at follow-up this value had risen to 75.8%. Responses regarding symptoms and limitations in activities and mental factors such as anxiety associated with treatment all improved during antihypertensive treatment. Changes to more optimistic responses were more likely for patients who achieved a target BP of <140/90 mm Hg. The study demonstrates that improvements in quality of life and the perceived emotional burden related to hypertension can be achieved with effective management of hypertension. [ABSTRACT FROM AUTHOR]

Objective: To gain understanding of the first-hand experience of women prior to and following repair of a vaginal fistula, to determine the most effective support mechanisms.Design: Qualitative phenomenological study using a series of in-depth semi-structured interviews at two time points: prior to fistula repair and 6 months post-surgery. Data were analysed thematically.Setting: Three fistula clinics in three districts in Kenya.Population: A purposive sample of 16 women suffering with vaginal fistula who were seeking fistula repair.Methods: Thrity-two semi-structured interviews were conducted.Results: The two main themes represented the women's journeys from social isolation to social reintegration. Women felt euphoric following fistula repair, believing that a 'miracle' had occurred. However, the 'post-miracle phase' demonstrated that the social and psychological impact of fistula leaves scars that are not easily healed, even when fistula repair is successful.Conclusion: Women's experiences of living with fistula have an impact beyond that which can be repaired solely by surgery. The findings from this study support the need for more active psychological assessment in the management of women with fistula, and the role of targeted psychological support in any package of care given in the post repair phase. The format of this support requires further study. Engagement by health professionals with the wider community could raise awareness of the causes of fistula, and provide support for significant others who may also be feeling vulnerable. It is likely that the collaborative efforts from health professionals and community members will provide the most effective support.Tweetable Abstract: Fistula surgery alone is insufficient for women's physical, social and psychological recovery. [ABSTRACT FROM AUTHOR]

Objectives: Caregiving can negatively impact well-being. Cancer caregivers face unique challenges given the intense nature of cancer and treatment, which increases their risk for burden, poor quality of life (QOL), and burnout. Studies to reduce caregiver burden demonstrate QOL improvement and distress reduction in the short term. However, few studies exist to address long-term benefits. We assessed changes in various QOL domains after participation in a QOL intervention for caregivers of patients having newly diagnosed advanced cancer.Methods: Our institutional review board-approved study randomized patient-caregiver dyads to either usual care or an in-person group intervention composed of six 90-min sessions of structured multidisciplinary QOL components delivered over 4 weeks, with 10 follow-up phone calls within 20 weeks. Caregivers attended four of the six sessions attended by patients. Sessions included physical therapy, coping and communication strategies, mental health education, spirituality, and social needs. Caregiver QOL (Caregiver Quality of Life Index-Cancer Scale [CQOLC] and Linear Analogue Self-Assessment [LASA]) and mood (Profile of Mood States-Brief [POMS-B]) were measured at baseline and 4, 27, and 52 weeks. Wilcoxon tests and effect sizes were used to compare the caregiver groups.Results: Of the 131 caregivers (65 intervention and 66 usual care), 116 completed the study. Caregivers post-intervention (at 4 weeks) had improved scores on LASA Spiritual Well-being; POMS-B total score, Vigor/Activity, and Fatigue/Inertia; and CQOLC Adaptation. At long term (at 27 weeks), caregivers retained improvement in POMS-B Fatigue/Inertia and gained improvements in CQOLC Disruptiveness and Financial Concerns.Conclusions: Caregivers who received the intervention had higher QOL ratings for specific QOL domains but not for overall QOL. Although a comprehensive intervention was helpful, more specific, targeted interventions tailored for individual needs are recommended. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Spiritual well-being is an important dimension of quality of life (QOL) and is a core component of quality oncology and palliative care. In this analysis, we aimed to describe spiritual well-being outcomes in a National Cancer Institute (NCI)-supported Program Project that tested the effectiveness of an interdisciplinary palliative care intervention in lung cancer patients and their family caregivers (FCGs).Methods: Patients undergoing treatments for NSCLC and their FCGs were enrolled in a prospective, quasi-experimental study. Patients and FCGs in the intervention group were presented at interdisciplinary care meetings and received four educational sessions that included one session focused on spiritual well-being. Spiritual well-being for patients was measured using the FACIT-Sp-12, and FCG spiritual well-being was measured using the COH-QOL-FCG spiritual well-being subscale. Multivariate analysis of covariance was undertaken for subscale and item scores at 12 weeks, controlling for baseline, by religious affiliations (yes or no) and group assignment.Results: Religiously affiliated patients reported better scores in the Faith subscale and items on finding strength and comfort in faith and spiritual beliefs compared to non-affiliated patients. Non-affiliated patients had better scores for feeling a sense of harmony within oneself. By group, patients who received the intervention had significantly better scores for the Meaning/Peace subscale.Conclusions: Our findings support the multidimensionality of spiritual well-being that includes constructs such as meaning and faith for lung cancer patients and FCGs with or without religious affiliations. Palliative care interventions should include content that targets the spiritual needs of both patients and FCGs. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this study was to verify the efficacy of a manualized, cognitively oriented psychological intervention, called Mental Fitness, in improving the mental and physical health of patients with acute coronary syndrome (ACS). Mental Fitness is a small-group four-session treatment aimed at increasing awareness of one's own bodily perceptions, emotions, and thoughts and is overall tailored on participants' perception of control over their health.Design: Prospective randomized controlled single-blind trial.Methods: Patients with ACS were recruited within a week from their acute cardiac event. Patients in the intervention group underwent one of two variants of Mental Fitness, depending on their perceived (internal or external) control over their health. Patients in the control group underwent standard treatment. All the patients were submitted to a clinical and psychological follow-up for 8 months.Results: The patients who underwent the Mental Fitness intervention (N = 31) showed, compared to the control patients (N = 34), increased quality of life in its physical, psychological, social and environmental domains, more functional emotional and problem-centred coping strategies, and higher emotional awareness. They also showed improved high-density lipoprotein cholesterol, triglycerides, heart rate, and left ventricular ejection fraction compared to the controls. In addition, they were more successful in maintaining physical exercise.Conclusions: This study demonstrates the efficacy of Mental Fitness in modifying specific psychological and physical variables conditioning cardiological patients' prognosis. It also confirms the importance of differentiating psychological interventions based on the psychological characteristics of the patients. Statement of contribution What is already known on this subject? Traditional symptom-based interventions in heart disease are aimed at diagnosing and reducing psychological symptomatology (e.g., depression), but recent work has shown the usefulness of orienting psychological interventions to patients' representations of themselves and of the world and to how such representations influence their thoughts, feelings, and behaviours (e.g., Chiavarino et al., ). What does this study add? Mental Fitness, by working on awareness of bodily perceptions, emotions, and thoughts, leads to positive changes in physical and psychological health. Mental Fitness is a cost-effective psychological intervention that adds significantly to the effectiveness of standard medical care. [ABSTRACT FROM AUTHOR]

Background: Mindfulness-based cancer recovery (MBCR) and supportive expressive group therapy (SET) are two well-validated psychosocial interventions, but they have not been directly compared, and little is known about long-term outcomes. This comparative effectiveness study measured the effects of these two interventions immediately following the groups and for 1 year thereafter in distressed breast cancer survivors.Methods: Two hundred fifty-two distressed Stage I-III breast cancer survivors were randomized into either MBCR or SET. Women completed questionnaires addressing mood, stress symptoms, quality of life, social support, spirituality and post-traumatic growth before and after the interventions, and 6 and 12 months later.Results: Immediately following the intervention, women in MBCR reported greater reduction in mood disturbance (primarily fatigue, anxiety and confusion) and stress symptoms including tension, sympathetic arousal and cognitive symptoms than those in SET. They also reported increased emotional and functional quality of life, emotional, affective and positive social support, spirituality (feelings of peace and meaning in life) and post-traumatic growth (appreciation for life and ability to see new possibilities) relative to those in SET, who also improved to a lesser degree on many outcomes. Effect sizes of the time × group interactions were small to medium, and most benefits were maintained over 12 months of follow-up.Conclusions: This study is the first and largest to demonstrate sustained benefits of MBCR in distressed breast cancer survivors relative to an active control. MBCR was superior to SET for improving psychological well-being with lasting benefits over 1 year, suggesting these women gained long-lasting and efficacious tools to cope with cancer.Trial Registration: Registered on clinicaltrials.gov number NCT00390169, October 2006. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Aim: Health-related quality of life (HrQoL) is a multidimensional concept including self-reported measures of physical and mental health. Throughout the last decades, HrQoL has become a more and more important outcome measure not only in clinical conditions. This study evaluates current HrQoL of healthy children and adolescents, determinants of HrQoL, and the agreement between self- and proxy-report.Methods: From April 2012 to July 2013, we prospectively examined 530 healthy children (13.2 ± 2.1 years, 236 girls) and their parents on their childrens HrQoL using the KINDL-R self-report questionnaire and the parent's proxy-report. Data was compared to the established reference value from 2007 and the agreement of self- and parent's proxy-report was assessed by calculation of intraclass correlation coefficient (ICC).Results: In general, the HrQoL improved compared to references in both children's (104.5 ± 12.6 % of predicted reference value, P < .001) and parent's proxy-report (104.3 ± 12.3 % of predicted reference value, P < .001). HrQoL declined with proceeding age (r = -.247, P < .001) but was not associated with BMI (r = -.035, P = .420). There was good accordance between children's reported HrQoL and the parent's proxy-report (ICC: .774). Only in the domains 'self-esteem' (ICC: .558) and 'Emotional well-being' (ICC: .612) the agreements were moderate.Conclusions: HrQoL perception has increased throughout the past 10 years and worsens with increasing age. Moreover, the parent's proxy-report of the KINDL-R questionnaire is a good supplementary method to provide additional information regarding to children's HrQoL. [ABSTRACT FROM AUTHOR]

Objective: To determine the satisfaction with information received by prostate cancer survivors and associations with health-related quality of life (HRQoL) and illness perception.Methods: A cross-sectional study was performed among 999 patients diagnosed between 2006 and 2009. All patients received a questionnaire on HRQoL (EORTC QLQ-C30), illness perception (B-IPQ) and satisfaction with information provision (EORTC QLQ-INFO-25). Multivariate regression analyses were performed to assess the association between satisfaction with information provision and HRQoL as well as illness perception.Results: Response rate was 70% (N = 697), 34% (N = 222) indicated to be dissatisfied with the information received. Multivariate linear regression analyses showed a significant positive association between satisfaction with information provision and global health (P = <0.001), emotional functioning (P = 0.004), social functioning (P = 0.027), physical functioning (P = 0.002) and role functioning (P = 0.001). Satisfaction was negatively associated with illness perception subscales on consequences (P = 0.020), timeline (P = 0.031), personal control (P = 0.013), treatment control (P < 0.001), illness concern (P < 0.001), coherence (P = 0.001) and emotional representation (P = 0.004). Hence, more satisfied patients reported fewer consequences of disease, illness concern and emotional representation, but higher personal and treatment control and coherence.Conclusions: A third of all prostate cancer survivors reported to be dissatisfied with the information received and scored worse on HRQoL and illness perception. A prospective randomized study is needed to study the effect of an intervention that improves information provision on HRQoL and illness perception outcomes. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis.Methods: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development.Results: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety.Conclusions: Development of HRQOL and symptoms of anxiety and depression appears to be non-linear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer. © 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd. [ABSTRACT FROM AUTHOR]

Background: The long-term impact of cancer caregiving on the family caregivers' quality of life (QOL) is currently not known. This study aimed (a) to characterize family caregivers of cancer survivors at 8 years post-diagnosis in terms of multidimensional aspects of QOL and (b) to identify demographic and early caregiving experience characteristics that may play significant roles in predicting the caregivers' longer-term QOL.Methods: A total of 1087 caregivers participated in the 8-year follow-up National Quality of Life Survey for Caregivers. Demographics and early caregiving experiences were measured 2 years post-diagnosis of their relative's cancer. Multidimensional aspects of QOL were assessed, including mental and physical health, psychological adjustment, and spirituality at both 2-year and 8-year post-diagnosis.Results: Approximately 90% of family caregivers ceased the caregiver role by 8 years. One-fourth of them were due to bereavement. Caregivers' demographic and early caregiving characteristics were significantly associated with QOL. In addition, being bereaved by the 8-year mark predicted poorer mental health and greater psychological distress independent of contributions of demographic and early caregiving characteristics.Conclusions: Findings provided the first evidence that 8 years after the initial cancer diagnosis in the family, family members who became bereaved suffer from poorer mental health and greater psychological distress. Findings have theoretical implications for better understanding bereavement to cancer and practical implications for developing integrative programs to improve QOL among family members in the various phases of caregivership. [ABSTRACT FROM AUTHOR]

Objectives: Quality of Life (QoL) at baseline is frequently found to be a prognostic factor in cancer studies. However, little is known about the relationship of the trajectory of QoL and survival in patients with advanced cancer. This study evaluates the effects of both level and change of QoL on survival to explore the potential of utilizing longitudinal information of QoL for prognosis.Methods: A series of joint models were used in a sample (N = 512) of patients diagnosed with advanced cancer (sample consisted of nine different cancer sites) with assessments of QoL across six time points and with survival information recorded up to 28 months after diagnosis. We used FACT-G as the QoL measure, and we evaluated the effects of change in QoL controlling for the time-dependent effects of chemotherapy and radiation.Results: The median survival for patients was 14.2 months, and 10% of the sample had survived beyond 28 months after the diagnosis of advanced cancer. The effect of change of QoL on survival was significant (hazard ratio = 0.98; p < 0.001) controlling for time-dependent treatment effects. Also, the slope of the trajectory in QoL was found to be a significant predictor of survival (hazard ratio = 0.18; p < 0.001).Conclusion: These preliminary findings suggest that the patient's longitudinal experience in QoL may be a significant prognostic factor of survival, a novel finding with potentially important implications in medical decision making. Longitudinal information on QoL can be used for updating the patient's prognosis of survival. [ABSTRACT FROM AUTHOR]

Background: A lack of longitudinal studies has hampered the understanding of the development of posttraumatic stress symptoms (PTSS) in parents of children diagnosed with cancer. This study examines level of PTSS and prevalence of posttraumatic stress disorder (PTSD) from shortly after diagnosis up to 5 years after end of treatment or child's death, in mothers and fathers.Methods: A design with seven assessments (T1-T7) was used. T1-T3 were administered during treatment and T4-T7 after end of treatment or child's death. Parents (N = 259 at T1; n = 169 at T7) completed the PTSD Checklist Civilian Version. Latent growth curve modeling was used to analyze the development of PTSS.Results: A consistent decline in PTSS occurred during the first months after diagnosis; thereafter the decline abated, and from 3 months after end of treatment only minimal decline occurred. Five years after end of treatment, 19% of mothers and 8% of fathers of survivors reported partial PTSD. Among bereaved parents, corresponding figures were 20% for mothers and 35% for fathers, 5 years after the child's death.Conclusions: From 3 months after end of treatment the level of PTSS is stable. Mothers and bereaved parents are at particular risk for PTSD. The results are the first to describe the development of PTSS in parents of children diagnosed with cancer, illustrate that end of treatment is a period of vulnerability, and that a subgroup reports PTSD 5 years after end of treatment or child's death. [ABSTRACT FROM AUTHOR]

Introduction: In this study we performed a longitudinal investigation to assess the impact of early introduction of assistive communication devices (ACDs) on quality of life (QoL) in amyotrophic lateral sclerosis (ALS) patients and their caregivers.Methods: Patients were followed for 7-10 months (3 evaluation periods). Bulbar-onset ALS patients (N = 27) and paired caregivers (N = 17) were included. Fifteen randomly selected patients received early support in ACD use. Patients were assessed using the ALS Functional Rating Scale-revised (ALSFRS-R), the McGill QoL (MQoL), the Communication Effectiveness Index (CETI), and performance in writing; and caregivers were assessed with the MQoL and World Health Organization Quality of Life questionnaire (WHOQOL-BREF).Results: Patients with early support had higher MQoL Psychological and MQoL Existential well-being domains; caregivers had higher MQoL Support domain and their MQoL Psychological domain positively associated with patient CETI. Most patients could communicate using a touchscreen keyboard to write, even when handwriting and speech were not possible.Conclusion: Early intervention with an ACD seems to have a positive impact on QoL and gives patients the opportunity to improve skills for communication in later disease stages. [ABSTRACT FROM AUTHOR]

Objective: The Effects of Youngsters' Eyesight on Quality of Life (EYE-Q) is a novel measure of vision-related quality of life (QOL) and function in children. We aim to determine the validity of the EYE-Q in childhood uveitis.Methods: We abstracted medical record data on arthritis and uveitis in a convenience sample of children with juvenile idiopathic arthritis (JIA) and/or uveitis. In addition to the EYE-Q, parents and patients completed questionnaires on overall QOL (Pediatric Quality of Life Inventory [PedsQL]), and physical functioning (Childhood Health Assessment Questionnaire [C-HAQ]).Results: Among 57 children (8 JIA, 24 JIA and uveitis, 25 uveitis alone), 102 ocular examinations were performed within 1 month of completing questionnaires. Uveitis patients had bilateral disease (69%), anterior involvement (78%), synechiae (51%), and cataracts (49%). Children with vision loss in their better eye (visual acuity [VA] 20/50 or worse) had worse EYE-Q (P = 0.006) and PedsQL (P = 0.028) scores, but not C-HAQ scores. The EYE-Q moderately correlated with logMAR VA (rs  = -0.43), PedsQL (rs  = 0.43), and C-HAQ (rs  = -0.45), but was not correlated with anterior chamber cells or intraocular pressure. The PedsQL and C-HAQ did not correlate with VA or cells. There were strong correlations between the parent and child EYE-Q (rs  = 0.62). Cronbach's α for the child report was 0.91. The EYE-Q had strong test-retest reliability (rs  = 0.75).Conclusion: The EYE-Q may be an important tool in the assessment of visual outcomes in childhood uveitis and an improvement over general measures in detecting changes in vision-related function. [ABSTRACT FROM AUTHOR]

Background Caring for a child with intellectual disability can be stressful. No data on the longer-term effects of cognitive-behavioural treatment (CBT) on parents from a Chinese-speaking background who have children with intellectual disabilities are available in the literature. This study attempted to fill this research gap by examining the maintenance effect of CBT among the Chinese parents of such children in Melbourne, Australia. Method Thirty-nine participants took part in our CBT groups and attended follow-up meetings. A questionnaire comprising four instruments, the Parenting Stress Index (PS) - Parent Domain, General Health Questionnaire-12 (GHQ-12), Abbreviated Quality of Life Enjoyment and Satisfaction Questionnaire (Q-LES-Q-18) and Dysfunctional Attitude Scale (DAS), was administered to the participants at the pre- and post-test stage and at the 6-month follow-up. Results One-way repeated-measures analyses of variance revealed significant time and group effects in the PS ( F2,27 = 16.93, P < 0.001), Q-LES-Q-18 ( F2,27 = 15.98, P < 0.001), GHQ-12 ( F2,27 = 81.93, P < 0.001) and DAS ( F2,27 = 15.50, P < 0.001) scores at the three measurement times. The participants continued to maintain significant improvements in mental health and quality of life and declines in the severity of parenting stress and dysfunctional attitudes at the 6-month follow-up. Effect size analyses revealed mostly large differences in the foregoing measurements (Cohen's d = 0.76-2.18) between the pre-test and 6-month follow-up. Employing a cut-off score of 3/4 in the GHQ-12 to identify at-risk and not-at-risk cases, approximately 90.5% of the participants could be classified as not-at-risk at the follow-up. Lastly, regression analyses showed that changes in DAS scores significantly predicted changes in the GHQ-12 and Q-LES-Q-18 scores at the follow-up. Conclusions This study provides preliminary evidence of the 6-month maintenance effect of CBT groups for the Melbourne-resident Chinese parents of children with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Families of children with disabilities experience extra financial strains, and mothers are frequently unable to participate in paid work because of caregiving obligations. A mailed survey and follow-up phone calls were used to gather data about mother's health, workforce participation and barriers to inclusion in the workplace ( n = 152). Verbatim reports of issues that hindered workforce participation were analysed qualitatively to derive themes. Maternal health-related quality of life (HRQoL) was measured using the Short Form Health Survey Version 2 (SF-36v2). Norm-based conversions were used to compare HRQoL between working and non-working mothers and to compare to population norms. Eighty-two per cent of mothers in the sample wanted and needed to work for pay but indicated over 300 issues that prevent their work participation. Data analysis revealed 26 common issues which prevent work participation. These issues fit into three main categories: mother-related reasons (28%), child-related reasons (29%) and service limitations (43%). Mothers who worked ( n = 83) reported significantly better HRQoL than mothers who did not work ( n = 69) on five of the eight SF-36v2 dimensions and overall mental health. Compared to other working Australians, mothers in this study had higher education yet reported poorer health, lower family income and lower workforce participation. Respondents reported that service system limitations were the main barriers to participation in the paid workforce. Investigation of service changes such as increased respite care, availability of outside hours school care, improved professional competency and family-centred services is recommended in order to improve maternal participation in paid work. [ABSTRACT FROM AUTHOR]

Aims Adjunctive treatment with hyperbaric oxygen therapy has recently been shown to improve ulcer healing in patients with chronic diabetic foot ulcer. The aim of the present study is to evaluate whether hyperbaric oxygen therapy improves the health related quality of life in these patients. Methods Prospective randomized placebo-controlled double-blinded study setting using SF-36. Results A total of 75 patients were included in the study; 38 were randomized to hyperbaric oxygen therapy and 37 to placebo (hyperbaric air). The overall mean physical and mental summary scores for the entire study population at baseline were 29.6 ± 8.8 and 47.5 ± 12.4, respectively. There was a significant difference between baseline and 1 year follow-up responses to the mental summary score and two of the eight (SF-36) (?) domains in the -hyperbaric oxygen group, whereas no significant improvement of health related quality of life was seen in the placebo group. Comparing quality of life inpatients who healed their ulcer (healers) with those who did not (non-healers), post-treatment levels of the mental health summary score, social functioning and role limitations due to physical and emotional health were significantly improved in healers. No differences were seen in any SF-36 (?) domain in non-healers. Conclusions Hyperbaric oxygen therapy improves long-term health related quality of life in patients with chronic diabetic foot ulcers, possibly attributable to better ulcer healing. [ABSTRACT FROM AUTHOR]

Mental health consumer-run organizations are alternatives to mainstream mental health services, and they have the dual focus of supporting members and creating systems change. The existing literature suggests that these organizations have beneficial impacts on social support, community integration, personal empowerment, subjective quality of life, symptom distress, utilization of hospitals, and employment/education. However, much of this research is cross-sectional or retrospective and has not used comparison groups, thus limiting conclusions about the effectiveness of these organizations in improving the lives of members. Although many consumer-run organizations also have a focus on social systems change, there has been little research documenting either the nature of these activities or the system changes that result from such activities. We provide an overview of a longitudinal study of four mental health Consumer/Survivor Initiatives. The study examines both individual-level and systems-level activities and impacts by using both quantitative and qualitative methods with a participatory action research framework. © 2006 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

To evaluate the impacts of participation in mental health Consumer/Survivor Initiatives (CSIs), we used a nonequivalent control group design to compare new, active participants in CSIs ( n = 61) with nonactive participants ( n = 57) at baseline, 9-month, and 18-month follow-up intervals. The two groups were comparable at baseline on a wide range of demographic variables, self-reported psychiatric diagnosis, service use, and outcome measures. At 9 months, there was a significant reduction in utilization of emergency room services for active participants, but not for nonactive participants. At 18 months, the active participants showed significant improvement in social support and quality of life (daily activities) and a significant reduction in days of psychiatric hospitalization, whereas the nonactive participants did not show significant changes on these outcomes. Also, active CSI participants were significantly more likely to maintain their involvement in employment (paid or volunteer) and/or education over the 18-month follow-up period when compared with those who were not active in CSIs. These results are discussed in the context of the self-help literature and their policy implications for people with mental illness. © 2006 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

Fatigue describes reduced capacity to sustain force or power output, reduced capacity to perform multiple tasks over time and simply a subjective experience of feeling exhausted, tired, weak or having lack of energy. Pain and fatigue have several components in common, such as being subjective, prevalent in most patients with cancer and caused by multiple factors of both a physical and psychological nature. In order to explore the relationship between fatigue and pain, data from five studies were used: two random samples from the Norwegian population (n=2323 and n=1965), Hodgkin's disease survivors (n=459), palliative care patients (n=434) and patients with bone metastases (n=94). All patients had completed one or more of the following instruments: EORTC QLQ-C30, SF-36 and/or Fatigue Questionnaire. The level of fatigue was much higher in the two palliative care populations (54.4 and 63.2) as compared to the normal population samples (25.0). Patients with bone metastases had significantly more pain (72.0) than the patients in the palliative care trial (47.4) and norms (20.5). In the two palliative care and bone metastases populations fatigue was almost unchanged over time, while pain was reduced. In the palliative care population a high level of fatigue (80.3) and pain (57.8) was reported 0-1 month before death. The relationship between pain, fatigue and the health-related quality of life domains should be explored in more detail, especially in follow-up studies in order to assess possible changes over time. In addition, the validity of the existing instruments measuring fatigue should be investigated for use in patients with advanced disease and short life expectancy. [ABSTRACT FROM AUTHOR]