Psychological Distress Care Research Articles

Psychological distress and convergence of own and proxy health-related quality of life in carers of adults with an intellectual disability.

In adults with an intellectual disability, health-related quality of life (HRQoL) is often measured by proxy report. This cross-sectional study investigated whether the mental health of proxy raters impacts the way they rate HRQoL. In this study, 110 carers of adults with an intellectual disability completed measures of psychological distress (Kessler-6) and HRQoL (EQ-5D-3L) about their own HRQoL and that of the care recipient. Differences between HRQoL scores as rated by the carer about themselves and the care recipient were calculated (convergence scores) and multiple regression models were fitted to estimate the association between proxy psychological distress and convergence scores for subjective/objective HRQoL controlling for support needs of the care recipient, carer age and gender of care recipient. There was a significant association between psychological distress and subjective HRQoL convergence scores (r=.92; P=0.03; 95%; CI: -1.76 to -0.09). There was no association between psychological distress and objective HRQoL convergence scores (r=.01; CI -0.02 to 0.001; P=0.08). The association between psychological distress and HRQoL scores was no longer present when models did not include convergence scores. Carers experiencing more psychological distress tended to rate their own and the care recipients' subjective HRQoL more similarly. Objective HRQoL measures did not show this convergence in scores with increasing carer psychological distress. Findings differed when the analysis approach was changed, suggesting the results above require replication in future studies.

The relationship between perceived social support and psychological distress in carers of older relatives: A longitudinal cross-lagged analysis

Background and objectivesAlthough a large body of research has examined the relationship between social support and psychological health of family carers of frail older people, the exact nature and direction of this relationship is not well understood with most research to date being cross-sectional. This longitudinal study explored the relationship between perceived social support and psychological distress in carers of older relatives. MethodsWe used data from two longitudinal cohorts which included a total of 332 family carers of frail older people. We used cross-lagged panel analysis to investigate the longitudinal association between perceived social support and carer psychological distress controlling for a number of covariates over time. ResultsFully-adjusted Generalised Estimating Equations (GEE) and cross-lagged models indicated that higher social support was significantly associated with lower carer psychological distress over time (regression coefficient [B] = -0.178, standard error [SE] = 0.028), with levels of perceived social support exerting an effect on psychological distress rather than vice versa (β = 0.03, p = 0.32). LimitationsAll observations were based on self-report data, and there may be other variables that may explain the results that we did not account for. Discussion and implicationsOur study finds that the directionality of the relationship appears to be from perceived social support to carer psychological distress suggesting that social support directly affects carer psychological health but not vice versa. This finding has important implications for the provision of social support interventions for carers of frail older people at risk of experiencing psychological distress.

Coping strategies and psychological distress in family carers of frail older people: A longitudinal study

BackgroundCarers of dependent older people experience high levels of psychological distress. However, little is known about the effects of coping on carer distress over time. In this one year longitudinal study we investigated the relationship between distress, and coping strategies in a representative sample of family carers living in Spain. MethodsPrimary carers of older people were recruited (N = 200). We used probability sampling and collected data via individual interviews from 2013 to 2015. Variables investigated included psychological distress, coping, and levels of objective and subjective burden. Panel data analysis was used to test a model of association of psychological distress, and coping strategies controlling for key confounders. ResultsAcceptance and emotional support were the most frequently used strategies, whereas behavioural disengagement and humour were the least used. In the panel data regressions, positive reframing (B = -0.79, p < 0.001), self-distraction (B = -0.46, p = 0.034), substance use (B = 0.57, p < 0.001) and denial (B = 0.57, p = 0,049) were significantly related to psychological distress at one year follow-up. LimitationsLimitations include participant drop out and assessing substance use coping via a brief measure. ConclusionsPositive reframing and self-distraction were longitudinally associated with lower levels of carer psychological distress. Using denial and substance use coping increased distress long-term. Our results suggest that interventions that focus on positive reframing and assisting carers in decreasing dysfunctional coping may be useful therapeutic targets mitigating carer psychological morbidity.

A Population-Based Study of the Behavioral and Emotional Adjustment of Older Siblings of Children with and without Intellectual Disability

This is the first study on the behavioral and emotional adjustment of siblings of children with intellectual disabilities (ID) to use a population-based sample, from the third wave of the Millennium Cohort Study (MCS); a UK longitudinal birth cohort study. We examined differences between nearest-in-age older siblings (age 5–15) of MCS children (likely mainly with mild to moderate ID) identified with ID (n = 257 siblings) or not (n = 7246 siblings). The Strengths and Difficulties Questionnaire (SDQ) measured all children’s adjustment. For SDQ total problems, 13.9% of siblings of children with ID and 8.9% of siblings of children without had elevated scores (OR 1.65; 95% CI 1.04, 2.62; p = 0.031). Similar group differences were found for SDQ peer and conduct problems. In logistic regression models, variables consistently associated with older sibling adjustment were: adjustment of the MCS cohort child, older sibling being male, family socio-economic position, primary carer psychological distress, and being from a single parent household. The ID grouping variable was no longer associated with adjustment for all SDQ domains, except siblings of children with ID were less likely to be identified as hyperactive (OR 0.30; 95% CI 0.10, 0.87; p = 0.027). Some older siblings of children with ID may be at additional risk for behavioral and emotional problems. Group differences were related mainly to social and family contextual factors. Future longitudinal research should address developmental pathways by which children with ID may affect sibling adjustment.

Study protocol of the Going to Stay at Home program: evaluation of a residential carer training program to reduce dementia carer distress and burden.

BackgroundCaring for a person with dementia has profound physical, psychological, social and financial impacts on the carer, while morbidity in carers has detrimental effects on outcomes in people with dementia. A 10-day hospital-based residential carer training program (BMJ 299(6712):1375–1379, 1989) delayed residential care placement, delayed mortality, reduced carer’s psychological morbidity and lowered care costs. This study aims to evaluate the effects of a similar program adapted for use with residential respite.Methods/DesignThis is a single-arm longitudinal study conducted at a residential aged care facility involving 100 people with dementia and their primary carers. In a 7-day residential program, carers will attend intensive training sessions while the people with dementia are engaged in daily activities. Data will be collected at the start of the residential program (baseline), at 6 months (post 1) and at 12 months (post 2) after completion of the program. The primary outcome is carer psychological distress. Secondary outcomes include carer burden, carer quality of life and time to residential care placement.DiscussionThis study will provide evidence on the effectiveness of the program in reducing carer distress and burden as well as delaying institutionalisation of the person with dementia, which may have important implications for policy.

A longitudinal examination of burden and psychological distress in carers of people with an eating disorder

Eating disorders are chronic conditions that require ongoing, high level care. Despite the chronic nature of eating disorders, to date, previous research examining eating disorder carer burden and psychological distress has been cross-sectional only. Therefore, the current study aimed to conduct a preliminary longitudinal examination of the predictors of carer burden and psychological distress for carers of those with an eating disorder. A self-report, quantitative questionnaire approach was utilised. Forty-two carers completed three self-report questionnaires over a period of 9 months (initial, 4½ and 9 months) assessing carer burden, psychological distress, carer needs, expressed emotion, coping strategies and social support. Maladaptive coping, expressed emotion and carer needs were significant longitudinal predictors of carer burden. Carer psychological distress could not be predicted longitudinally. In order to reduce carer burden, interventions should test whether reducing maladaptive coping strategies, expressed emotion and addressing carer needs lead to lower carer burden and distress.

Gender differences in cancer carer psychological distress: an analysis of moderators and mediators

Women cancer carers report higher rates of distress than men; however, there is little understanding of the mechanisms underlying these gender differences. The aim of this study was to examine the potential mediating roles of burden of care, unmet needs, self-silencing, self-efficacy and optimism, and the potential moderating influence of social support, cancer stage, patient gender, time spent caring and other responsibilities, on gender differences in carer distress. Of 329 informal cancer carers (245 women, 119 men), women reported significantly more anxiety, burden of care and unmet needs than men. In the mediation analysis, gender differences in anxiety were fully explained by both the independent contribution and combination of: Disrupted Schedule, Health Problems and Emotional and Spiritual Unmet Needs. Women cared for both men and women patients, across a broad range of relationships, whereas men predominantly cared for their female partner. There was no gender difference in number of hours spent caring or in companionship, amount of support received, and additional responsibilities for children, housework or studies, and none of these factors acted as moderators of gender differences in anxiety. It is concluded that women's gendered role is associated with unmet needs and burden of care, resulting in greater anxiety.

Coping strategies and social support as predictors and mediators of eating disorder carer burden and psychological distress

Caring for someone with an eating disorder is associated with a high level of burden and psychological distress. While models for the prediction of carer burden have previously been investigated, these have typically neglected the role of coping strategies and social support. Thus, the current study will examine predictors of both carer burden and carer psychological distress in eating disorder carers. Further, the mediating roles of coping strategies and social support will be investigated. Fifty-six carers completed a self-report questionnaire assessing burden, psychological distress, needs, expressed emotion, coping strategies and social support. Use of maladaptive coping strategies was a unique predictor of both burden and psychological distress. Further, maladaptive coping was a consistent mediator on the outcome of carer burden. Social support, however, did not significantly predict, or mediate, carer burden. Interventions focusing on teaching appropriate coping strategies would benefit carers.

Effect of a residential respite admission for older people on regional Queensland family carers

This study undertaken in regional Queensland aimed to determine the effect of a residential respite care (RRC) admission for older people on family carers. The study used a repeated measures, prospective design. The participants were 100 family carers and their older dependants who were studied before and after the RRC admission. Family carer psychological distress increased after a period of RRC [F(1, 57) = 250.9, p < .001] as did the level of caregiver burden [F(1, 57) = 189.8, p < .001]. The presence of dementia and hearing problems in the RRC recipients, the psychological distress of the family carer, being younger and a spouse of the RRC recipient all predicted carer burden. It is not surprising that RRC, once over, does not necessarily reduce psychological distress and carer burden if this is associated with ongoing caring responsibilities that are resumed after RRC. Nurses need to discuss these issues with family carers and inform them of the likely outcomes of RRC and how they may better utilise the 'break' provided by RRC to counteract some of this response.

Helping carers to care—The 10/66 dementia research group's randomized control trial of a caregiver intervention in Russia

Dementia is a rapidly growing public health problem in low and middle income countries. There is an urgent need, in the absence of formal services, to develop interventions designed to improve the lives of people with dementia, and their families. This study tests the effectiveness of the 10/66 caregiver intervention among people with dementia, and their carers. A single blind parallel group randomized controlled trial (ISRCTN41039907). Moscow. Sixty family caregivers of people aged 65 and over with dementia were randomized to receive the intervention and medical care as usual (n = 30) or medical care as usual only (n = 30). Caregiver and person with dementia outcomes were assessed at baseline and after 6 months. The caregiver education and training intervention was delivered over five, weekly, half-hour sessions and was made up of three modules: (i) assessment (one session); (ii) basic education about dementia (two sessions); and (iii) training regarding specific problem behaviors (two sessions). Dementia was diagnosed using DSM-IV criteria. Caregiver: Zarit Carer Burden Interview; carer psychological distress (SRQ 20); and carer Quality of Life (WHOQOL-BREF). Person with dementia: Behavioural and Psychological symptoms (NPI-Q); quality of life (DEMQOL). Caregivers in the intervention group reported large and statistically significant net improvements at 6-month follow-up in burden compared to controls. No group differences were found on caregiver psychological distress and patient and caregiver quality of life. The low-level intervention seems to be as, if not more, effective than similar interventions applied in high income countries.

A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers

The identification of factors that might affect the relationship between patients’ and carers’ psychological distress has received insufficient attention to date. A meta-analysis was conducted with 21 independent samples of cancer patients and their carers, to quantify the relationship and difference between respective measures of psychological distress. Correlation coefficients and standard differences were extracted from 21 studies that met pre-defined inclusion criteria. Random effects models were used. Variables that modified this relationship were examined with potential causes of heterogeneity explored. Analysis confirmed the positive association between patient and carer psychological distress ( r=0.35, P<0.0001), and indicated that patients and carers did not experience significantly more or less psychological distress than one another ( P=0.64). Subgroup analysis was performed to explore potential sources of heterogeneity, and initial findings indicated a relationship between time since diagnosis and the strength of correlation between patient and carer psychological distress. The meta-analysis was limited by the large clinical and methodological variability between studies, and further systematic prospective research is required. This preliminary evidence suggests that early intervention with the patient and their carer could prevent later development of psychological distress in both members.