Multiple sclerosis: disability profile and quality of life in an Australian community cohort

The objective of this study was to determine the experience of disability and reported symptoms in multiple sclerosis in an Australian community sample, comparing the perceptions of patients, carers and treating doctors, and to examine effects on quality of life, carer stress and utilization of health services. The study design used a prospective cross sectional community survey. The participants were persons with a confirmed diagnosis of multiple sclerosis, with quantified neurological, mobility and cognitive deficits, from a tertiary hospital database (n=101), who lived at home, and their carers and doctors. The study method used demographic, diagnostic and disease severity data extracted from the database. Structured interviews conducted at home included: (1) open questionnaires for participant, carer and general practitioner, prioritizing symptoms/problems affecting daily living; and (2) standardized assessments for patient quality of life, caregiver strain and perceived burden of care. The mean age was 49 years (range 28-64). Those more severely affected had a significantly reduced quality of life and increased carer burden than those with milder disability, but discordance between patients, carers and doctors was noted in their perception of problems and symptom experience. Rates of depression (67%) and work-related problems were high, but vocational support was rarely provided. Forty persons used interferon, of whom 20 had secondary progressive multiple sclerosis; 39% reported difficulty in accessing rehabilitation services and only 10% were referred to medical rehabilitation units. In conclusion, the rates of disability and symptom experience were similar to other series; however, access and utilization of appropriate rehabilitation and support services appears to be lacking. There were higher reported rates of depression and poor quality of life. Opportunities may possibly exist to re-deploy resources to develop vocational support, counselling and rehabilitation.     

Cognition and adjustment among children of separated or divorced parents

The current study tested the hypothesis that coping with stress is associated with the individual's cognitive appraisals of the stressor and of their resources for coping with the stressor. Fifty-two children between 8.5 and 12 years of age who were experiencing the separation or divorce of their parents were given a measure of appraisals of divorce and a measure of appraisals of coping options. Their parents and teachers filled out behavior checklists, and teachers reported their classroom grades. For boys, appraisals of divorce situations were related to behavior in the home but not in the school. Boys' adaptive appraisals tended to be more strongly associated with behavior than were maladaptive appraisals. Their appraisals of coping options were related to personal adjustment in both the home and the school, but not to academic performance. For girls, only a few of the relationships between cognition and psychosocial adjustment were significant, possibly because of their restricted range of grades and scores on the behavior checklists. These findings provide partial support for the prediction that coping is related to appraisals of stressful events and of one's resources for coping with the events.     

Impact of Caring for a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of the Literature

The implications of caring for a child with cerebral palsy (CP) are considerable, and parents have to cope with many changing demands related to the specific needs of their child. A new research field, devoted to the consequences of these caring tasks, has recently emerged. However, an overall vision is lacking, one that would enable us to understand how research is evolving and the relevant data that should be taken into account when planning interventions with these families. In this paper, we review the literature on the effects of caregiving on parents of children with CP, and summarize the factors related to these effects. A systematic search of online databases was performed and further studies were identified based on the reference lists of selected articles. Forty six articles that met the inclusion criteria were analysed. The review shows that caregivers of children with CP tend to have high levels of stress and depression and lower quality of life than parents of healthy children. We identify child behaviour and cognitive problems, low caregiver self-efficacy and low social support as factors that are consistently related with higher levels of stress and depression. The implications of these findings are discussed, especially those related to interventions that should be addressed to the family as a whole and which should aim to enhance parents’ competence and resources to better cope with the demands of the caring task.     

Predictors of depression and life satisfaction among spousal caregivers in hospice: application of a stress process model

Using a stress process model, risk factors (caregiving stressors, caregiver health, and negative social interactions) and protective factors (caregiving appraisals and social resources) were examined as predictors of family caregiver well-being (depression and life satisfaction). Eighty spousal caregivers of hospice patients with dementia or lung cancer completed structured interviews and self-report measures assessing components of the stress process model. Results suggest that objective measures of patient impairment or amount of care provided are not strong predictors of caregiver depression or life satisfaction. Female gender, caregiver health problems, and negative social interactions were risk factors for poorer caregiver well-being. Caregivers who subjectively appraised caregiving tasks as less stressful, who found meaning and subjective benefits from caregiving, and with more social resources had lower depression and higher life satisfaction, even after controlling for patient impairment and caregiver appraisal variables. Regression models accounted for 42% of variance in caregiver depression and 52% of variance in caregiver life satisfaction. Counseling for hospice family caregivers could utilize the stress process framework, and pay particular attention to finding meaning or subjective benefits from caregiving, and remaining active in social roles. Further research providing evidence on caregiver risk and protective factors could improve the conceptual and empirical basis for psychosocial interventions for hospice family caregivers.     

Working life and stress symptoms among caregivers in elderly care with formal and no formal competence

engström m. , skytt b. & nilsson a. (2011) Journal of Nursing Management 19, 732–741
Working life and stress symptoms among caregivers in elderly care with formal and no formal competence Aim The aim of the present study was to describe and compare caregivers with formal and no formal competence on job satisfaction, psychosomatic health, structural and psychological empowerment and perceptions of care quality. A further aim was to study relationships among study variables. Methods A convenience sample of 572 caregivers in elderly care participated. Results Caregivers with no formal competence perceived higher workload, more communication obstacles, less competence, poorer sleep and more stress symptoms than did their colleagues. Linear regression analyses revealed that the factor self-determination was an explanatory variable of stress levels among caregivers with no formal competence, and self-determination and impact among caregivers with formal competence. Linear regression analysis revealed that different dimensions in structural and psychological empowerment explained the variance in staff job satisfaction, perceived stress symptoms and quality of care. Conclusions No formal competence seems to be a risk factor for psychosomatic health problems. Implications for nursing management Managers need to have a strategic plan for how to create a working environment for caregivers with no formal competence. Caregivers’ self-determination seems to be important for stress symptoms. Meaning, self-determination, impact and opportunities appear to be important for job satisfaction and competence, opportunities, resources and formal power for quality of care.     

Ageing with spinal cord injury: the impact of spousal support

Purpose: Research has offered ample evidence that spousal support can be seen as an important contributing factor to the ongoing health and well-being of ageing individuals, whether or not they have a spinal cord injury (SCI) or disability. In fact, spouses may be the most important element in successful rehabilitation and long-term home care for people with spinal cord injuries. This longitudinal study, which describes 225 British SCI long-term survivors, offers insight into marital status and its impact on general quality of life, depression, stress and community integration for individuals with SCI. Results: The results demonstrate married individuals having less depression, greater life satisfaction and psychological wellbeing, and having better perceived quality of life. When controlling for age, duration of injury, and gender, marital status was a significant predictor of better perceived life satisfaction and quality of life.     

Ageing with spinal cord injury: the impact of spousal support

Purpose: Research has offered ample evidence that spousal support can be seen as an important contributing factor to the ongoing health and well-being of ageing individuals, whether or not they have a spinal cord injury (SCI) or disability. In fact, spouses may be the most important element in successful rehabilitation and long-term home care for people with spinal cord injuries. This longitudinal study, which describes 225 British SCI long-term survivors, offers insight into marital status and its impact on general quality of life, depression, stress and community integration for individuals with SCI. Results: The results demonstrate married individuals having less depression, greater life satisfaction and psychological wellbeing, and having better perceived quality of life. When controlling for age, duration of injury, and gender, marital status was a significant predictor of better perceived life satisfaction and quality of life.     

Ageing with spinal cord injury: the impact of spousal support.

PURPOSE: Research has offered ample evidence that spousal support can be seen as an important contributing factor to the ongoing health and well-being of ageing individuals, whether or not they have a spinal cord injury (SCI) or disability. In fact, spouses may be the most important element in successful rehabilitation and long-term home care for people with spinal cord injuries. This longitudinal study, which describes 225 British SCI long-term survivors, offers insight into marital status and its impact on general quality of life, depression, stress and community integration for individuals with SCI. RESULTS: The results demonstrate married individuals having less depression, greater life satisfaction and psychological well-being, and having better perceived quality of life. When controlling for age, duration of injury, and gender, marital status was a significant predictor of better perceived life satisfaction and quality of life.     

Carer mentoring: A mixed methods investigation of a carer mentoring service

Background

Worldwide with ageing populations, the numbers of informal carers are likely to increase. Although being a carer is often satisfying, it can be challenging and require support. Volunteer-provided carer mentoring services where carers are supported by volunteer mentors are one such intervention. However, little is known about the impact of mentoring, carers’ experiences or the mechanisms by which these schemes may work. Previous quantitative findings have been inconsistent suggesting a different, mixed methods approach using qualitative and quantitative methods may be valuable.

Objectives

Objectives were to explore two main questions: whether mentoring had a significant positive effect on carer mentees in terms of mental health, quality of life and confidence in caring and to explore how carers experience and perceive the process and benefits of mentoring. In addition, the study aimed to suggest possible mechanisms to understand how mentoring may benefit carers.

Methods and setting

Mixed methods (quantitative questionnaires and depth interviews) investigated an established mentoring service provided by volunteer mentors. During the study period, 28 carers received mentoring. Of these, 25 carers completed structured questionnaires both before and after mentoring, to determine whether mentoring had an impact on carer wellbeing and confidence in caring. Depth interviews were also undertaken with 11 purposively sampled carers to explore how carers experience and perceive the process and benefits of mentoring.

Results

Statistically significant improvements in carer anxiety (p < 0.001), depression (p < 0.001), quality of life (p = 0.02) and confidence in caring (p < 0.05 on all dimensions except one) were found. Depth interviews revealed that carers were very positive about mentoring and highlighted many benefits. Findings suggested emotional support, information provision, problem solving facilitation and gaining new perspectives may be mechanisms by which mentoring achieves positive outcomes. Mentor personal characteristics, experiences and training are possible facilitators of the process.

Conclusions

Carer mentoring services can be a valuable form of carer support that falls somewhere between formal and informal support. Adopting mixed methods permitted greater understanding of how mentoring may benefit carers and has implications for mentor recruitment and training. The fact that mentoring can be provided by volunteer mentors makes it an attractive, potentially cost-effective means of supporting carers.     

The relationship of maternal attributes, resources, and perceptions of postpartum experiences to depression

The relationships of maternal attributes, resources, and perceptions of the postpartum experience to postpartum depression (PPD) were examined. One hundred and forty-three mothers completed measures of maternal attributes, resources, and perceptions of the postpartum experience, as well as depressed mood and clinical depression symptoms. Results from canonical correlation analysis revealed two patterns. Pattern 1: Women without history of depression, more emotional support from partners, higher parenting evaluation, lower centrality of the infant in the mother's thoughts and actions, and fewer life changes had lower depressed mood and fewer clinical depression symptoms than their counterparts. Pattern 2: Mothers without history of depression who were married, with higher financial stress, and lower parenting evaluation had higher depressed mood, but not more clinical depression symptoms. Maternal age, parity, time since delivery, income, and help from partner were unrelated to either depression indicator. These patterns suggest multiple paths to PPD, and the need for routine mental health assessment and exploration of women's perceptions of their postpartum experience.     

Stress and depression in family carers following traumatic brain injury: the influence of beliefs about difficult behaviours

OBJECTIVE: Difficult behaviours are significant contributors to the distress experienced by carers of people with a traumatic brain injury. This study investigated whether the beliefs carers hold about such behaviours also contribute to the distress. DESIGN: Questionnaire survey. PARTICIPANTS: Forty family carers recruited from Headway, a traumatic brain injury support organization. MAIN MEASURES: Zung's Self-Rating Depression Scale, Perceived Stress Scale, Social Support Questionnaire, a measure of the severity of difficult behaviours shown by the person cared for and two measures of carer beliefs about the behaviour (including the Controlling Beliefs Scale). RESULTS: Higher depression and stress scores were associated with more severe behaviours and less social support. Carer belief in their own ability to control the behaviours was associated with less stress. Belief that the behaviour was under the control of the person with traumatic brain injury and/or was motivated by hostile intentions was associated with more depression but less stress. Taken together, severity of behaviour and social support accounted for about 19% of the variance in both depression and stress scores. Carer beliefs accounted for another 5% of the depression scores, and another 11% of the stress scores. CONCLUSIONS: The results were consistent with the idea that carer beliefs about difficult behaviour contribute to carer distress, but longitudinal and treatment studies are needed to establish causality.     

Perceptions of caring among patients with cancer and their staff. Differences and disagreements

The current dyadic study investigated (a) patient and staff perceptions of the importance of caring behaviors, patient health, quality of life, and greatest health-related concern; (b) patient anxiety and depression (Hospital Anxiety and Depression Scale); and (c) staff views of patient perceptions of the importance of caring behaviors. The study included 21 matched patient-staff dyads. Three questionnaire versions of the Caring Assessment Instrument were used to tap patient (CARE-P) and staff (CARE-S) perceptions, and staff views of patient perceptions (CARE-SP). There were no correlations between patient and staff perceptions of the importance of caring behaviors, patient health, quality of life, or greatest health-related concern. However, staff views of patient perceptions about the importance of caring behaviors were strongly correlated with their own perceptions. Staff ratings of the importance of caring behaviors were not related to patient anxiety, depression, health, and/or quality of life. Patient depression was negatively correlated with three CARE-Q subscales. The results indicate that staff are not successful in judging the importance of caring behaviors, health, quality of life, and greatest health-related concern for individual patients. The major implication is that staff must be open to patient perceptions of what caring behaviors are important, and must validate their own perceptions of patient needs and concerns.     

Impact of Surgical and Orthotic Intervention on the Quality of Life of People with Profound Intellectual and Multiple Disabilities and Their Carers

The increasing analysis of quality of life issues for people with disabilities has not been paralleled in relation to people with profound intellectual and multiple disabilities (PIMDs). This is nowhere more the case than with regard to the impact of health status on their quality of life. In addition, people with PIMDs, and the interventions which they require, have not been included within wider considerations of the economics of healthcare and its relation to rational decision‐making regarding medical provision. The present exploratory study considered the impact of a wide range of surgical and orthotic interventions on the quality of life of 27 children and adults with PIMDs. These were explored on a pre–post‐test basis with respect to: (1) the economic costs associated with surgical and orthotic interventions; (2) clinical assessment of function and behaviour; (3) the participants' and carers' quality of life; and (4) carer satisfaction with the interventions. The results are presented with respect to these individual areas and the extent to which the findings are congruent. The need for the development of these measures to meet the specific requirements of this population and the development of a more formal model integrating these steps are considered.     

Quality of Life in Pediatric Patients with Cystic Fibrosis

In order to assess quality of life, we administered the Child Health Questionnaire (CHQ) to 43 pediatric patients diagnosed with cystic fibrosis (CF). Statistical analyses demonstrated that girls with CF perceive themselves to have better general health and report greater optimism regarding their future health than do boys with CF. Findings also revealed that age negatively correlated with general health perception, such that patients report worse general health as they become older. In addition, we administered the parent version of the CHQ to one of each patient's parents for the purpose of comparing their perceptions to those of their children. Results indicated that in each of the domains assessed parents perceive their children to experience greater impairment than that reported by patients. Finally, comparisons of parents' perceptions of the quality of life (QOL) of their children with CF versus parents' perceptions of the QOL of their children who have other chronic illness revealed variable patterns of impairment.     

Caregiving at the end of life: Perceptions of health care quality and quality of life among patients and caregivers

This study explored the association between perceptions of health care quality and quality of life in patients with advanced metastatic cancer and their informal caregivers (n=39). Patients' and caregivers' perceptions of health care quality, mental health, health-related quality of life, symptoms, and burden were measured. The key findings included the following: 1) patients' mental health and depression scores correlated with those of caregivers, suggesting that the mental health of patients and their caregivers are associated; 2) patients and caregivers shared similar perceptions regarding health care quality; 3) the presence of depression in caregivers correlated with caregivers being less satisfied with the health care being given to their patients (this correlation did not exist for patients, a finding that may be due in part to the protective buffering effect that caregivers provide their patients as illness progresses); and 4) a modified Primary Care Assessment Survey, originally designed for primary care patients, was a useful measure of health care assessment for both patients and caregivers. These data suggest that patients with advanced disease and their caregivers share similar perceptions and evolve as a "unit of care," and caregivers, as unique and important members of the patient's health care team, are also in need of care. When depressed, caregivers may unilaterally lose trust by becoming less satisfied with the quality of health care being provided to their patients.     

Battle of the Appraisals: Pain-Related Injustice Versus Catastrophizing as Mediators in the Relationship Between Pain Intensity and 3-Month Outcomes in Adolescents with Chronic Pain

Pain appraisals are closely tied to pain and functional outcomes. Pain-related injustice and pain catastrophizing appraisals have both been identified as important cognitive-emotional factors in the pain experience of youth. Although pain-related injustice and catastrophizing have been linked to worse pain outcomes – as primary predictors and intermediary variables – little is known about whether they operate as independent or parallel mediators of the relationship between pain and functioning in youth. We tested pain-related injustice and catastrophizing appraisals as candidate mediators of the relationship between baseline pain intensity and 3-month functional outcomes in adolescents. Youth with chronic pain (N = 89, 76% female, 89% White, average age = 15 years) completed measures assessing pain intensity, pain-related injustice, and catastrophizing at baseline, as well as measures assessing functional disability and overall quality of life 3 months later. Multiple mediation analyses indicated that injustice mediated the relationship between pain intensity and 3 month quality of life. Exploratory analyses of specific quality of life domains indicated that injustice mediated the relationship between pain intensity and 3 month emotional functioning, whereas catastrophizing mediated the relationship between pain intensity and 3 month social functioning. The findings suggest these pain-related appraisals play different intermediary roles in the relationships among pain and future psychosocial outcomes.PerspectivePain-related injustice and catastrophizing appraisals play different intermediary roles in the relationships among pain and future psychosocial outcomes in youth with chronic pain. Treatments targeting pain-related injustice appraisals in pediatric populations are needed to complement existing treatments for catastrophizing.     

Discharge and beyond. A longitudinal study comparing stress and coping in parents of preterm infants

This study compared patterns in the stress, coping and parenting efficacy of mothers and fathers of low risk preterm infants. 25 couples completed a survey about their perceptions of their stress, coping, social support and parenting efficacy just prior to their infant’s discharge from hospital and again three months later. For both mothers and fathers negative stress appraisals decreased and controllability appraisals increased in the three months following discharge. There were also changes in their coping strategies and social support. Psychological distress was higher among mothers than fathers but mothers tended to appraise the situation more optimistically, than fathers. Parenting efficacy also increased for mothers in the three months following discharge but was unchanged for fathers. These findings help us to understand parents’ specific responses to stress and to plan discharge and community follow-up care in order to support families as they adjust to life subsequent to this stressful event.     

Myocardial infarction survivors: age and gender differences in physical health, psychosocial state and regimen adherence

Little is known about women's and older adults' experiences after myocardial infarction (MI). The purpose of this study was to determine if gender and age differences exist in psychosocial condition, health state and therapeutic regimen adherence among MI survivors. Adults aged 40 to 88 years (n = 197) were interviewed 1 to 2 years after their first MI. The Profile of Mood States was used to measure anxiety and depression, the Personal Resources Questionnaire was used to measure social support, the Rosenberg Self-Esteem scale was used to measure self-esteem, the Perceived Quality of Life scale was used to measure quality of life, and the Health Behaviour Scale was used to assess therapeutic regimen adherence. Cardiac rehabilitation participation was recorded from rehabilitation centre records. Subjective health appraisals were assessed using investigator-developed questions. Increased age was associated with higher depression scores, lower quality of life, less social support, less participation in formal cardiac rehabilitation, less therapeutic exercise and poorer general health. Women reported poorer health than men. Findings indicated older males may be at risk for lower social support and continued smoking after infarction. These findings suggest that the often-reported experience of middle-aged males post-MI cannot be generalized to all adults experiencing infarction.     

The Relationship among Young Adult College Students’ Depression,Anxiety, Stress,Demographics, Life Satisfaction,and Coping Styles

Recent research indicates that young adult college students experience increased levels of depression, anxiety, and stress. It is less clear what strategies college health care providers might use to assist students in decreasing these mental health concerns. In this paper, we examine the relative importance of coping style, life satisfaction, and selected demographics in predicting undergraduates’ depression, anxiety, and stress. A total of 508 full-time undergraduate students aged 18–24 years completed the study measures and a short demographics information questionnaire. Coping strategies and life satisfaction were assessed using the Brief COPE Inventory and an adapted version of the Brief Students’ Multidimensional Life Satisfaction Scale. Depression, anxiety, and stress were measured using the Depression Anxiety and Stress Scale-21 (DASS-21). Multiple regression analyses were used to examine the relative influence of each of the independent variables on depression, anxiety, and stress. Maladaptive coping was the main predictor of depression, anxiety, and stress. Adaptive coping was not a significant predictor of any of the three outcome variables. Reducing maladaptive coping behaviors may have the most positive impact on reducing depression, anxiety, and stress in this population.     

Stress and coping among hospice nurses: test of an analytic model

Nursing is a profession with high levels of occupational stress, especially for those employed in hospice settings. This study considered the stressors, mediators, and adaptations evident among 100 hospice nurses from 20 facilities. The research tested an analytic model of stress that included social and predisposing conditioning factors, stress appraisals, coping strategies, social resources, and adaptive status. Entered as sets in a hierarchical regression analysis, stress appraisals and coping strategies proved to be the best predictors of adaptive status. Social resources exerted a more indirect influence.