The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research

ABSTRACT

Objective: A systematic meta-synthesis of qualitative studies was conducted to interpret and synthesise findings from studies investigating the experiences, quality of life, and psychosocial impact of caregiving on adult informal caregivers of people with dementia.

Design: The meta-synthesis was conducted according to the principles of meta-ethnography.

Results: Fourteen studies describing the experiences of 265 informal caregivers were reviewed. The meta-synthesis elicited the following themes: (1) understanding and making sense of the dementia diagnosis, changing symptoms, and the caregiver role; (2) coping strategies, psychological facilitators and rewards of caregiver role; (3) challenges of caring for a person with dementia and their behaviour; (4) caregivers' relationships with care-recipient and other informal caregivers; and (5) caregivers’ experiences of formal support services and material resources.

Conclusion: Our findings highlight the need for a person-centred approach to care planning that also accounts for the needs of the informal caregiver to promote better caregiver well-being and quality of life. Caregivers’ emotional support, coping, resilience, need for information and respite care and adjustment to caregiver identity should be reviewed as part of the care package for the person with dementia.     

The Brief Family Distress Scale: A Measure of Crisis in Caregivers of Individuals with Autism Spectrum Disorders

Parents of individuals with autism spectrum disorders (ASD) often experience stressors associated with caring for their child. These stressors can cause considerable distress for families, which at times can develop into full blown crisis, and it is important that professionals be able to quickly identify when families are approaching or are in crisis to respond appropriately. The current study presents an initial attempt at measuring the subjective experience of crisis in 164 caregivers of people with ASD through a single item instrument, the Brief Family Distress Scale. The BFDS was negatively correlated with helpful coping mechanisms (family hardiness, and parent empowerment), and positive adjustment (caregiver quality of life and positive parenting experiences), and positively correlated with known stressors (severity of aggressive behavior, negative life events) and problematic coping and outcomes (caregiver burden, worry, mental health problems). As expected, caregivers at Marked levels of distress (approaching or in crisis) were significantly different from caregivers at lower levels of distress in nearly all of the dependent variables. Having a quick way of measuring where families are in terms of distress and crisis can be helpful for researchers and clinicians alike.     

Psychological adjustment of children in the pretransplant phase of bone marrow transplantation: Relationships with parent distress,parent stress,and child coping

Families of 22 children preparing to undergo bone marrow transplantation (BMT) provided information concerning parent-reported major negative life stress, child coping strategies, parental psychological symptomatology, and child adjustment. Immediately prior to BMT, children and families are confronted with multiple stresses which challenge the child's coping and strain the parents' ability to assist the child with coping. Hence, stress, parental adjustment (distress), and child coping may be important factors affecting the child's overall psychological adjustment. Results showed that 15–25% of children and parents experienced clinically significant levels of psychological distress. Parent and child psychological distress were closely related. Major negative life stresses experienced by the parent and use of avoidant coping by the child significantly predicted child adjustment problems in the pretransplant period. Coping skills interventions targeting avoidant coping and management of parental stress/distress may reduce child psychosocial risk prior to BMT.     

Family caregivers of older relatives: ways of coping and change in distress

The aim of this secondary analysis was to examine the relationships between the ways in which caregivers coped with caregiving stressors and their experience of distress over time. Three coping subscales were derived from the Carers' Assessment of Management Index (CAMI) coping scale: "maintaining balance", "focusing on caregiving" and "avoidance". A proportional (relative) scoring technique was applied. The analysis was based on the responses of 115 pairs of caregivers and care recipients. Care recipients were aged 66-92 years, with no symptoms of dementia, and the majority had mild to moderate hearing impairment. Data were collected at baseline and 6 months later. Caregivers who increased the proportion of strategies endorsed in the "maintaining balance" subscale experienced a decrease in distress, irrespective of change in the proportion of strategies endorsed in the "avoidance" subscale. "Focusing on caregiving" was not significantly related to distress. The results highlight the potential benefits to these caregivers of maintaining a balance in their lives by taking breaks from caregiving.     

The Impact of Child Symptom Severity on Stress Among Parents of Children with ASD: The Moderating Role of Coping Styles

We examined the impact of autism severity and parental coping strategies on stress in parents of children with ASD. Children’s autism symptoms and parental coping strategies (task-oriented, emotion-oriented, social diversion, and distraction) were evaluated as predictors of four types of parental stress (parent and family problems, pessimism, child characteristics, and physical incapacity). In order to examine potential buffering effects of coping strategies on stress associated with the child’s symptom severity, the interactive effects of autism symptoms with coping strategies were also examined. Participants included 77 primary caregivers of a child with ASD. Using multiple regression analyses, emotion-oriented coping scores were associated with more parent and family problems, and task-oriented coping was associated with lower physical incapacity scores. The child’s autism severity was the strongest and most consistent predictor of stress. Further, emotion-oriented coping moderated the relationship between pessimism stress and autism symptomatology, and distraction coping was a moderator between parent and family stress and autism symptoms. Results indicate that increasing our knowledge of the coping strategies that are more or less effective and under what conditions some coping strategies may be either beneficial or harmful for this population of parents has direct implications for treatment and parent education efforts.     

A DBT Skills training group for family caregivers of persons with dementia

A Dialectical Behavior Therapy Skills training manual (DBT Skills) was adapted for use with caregivers of individuals with dementia. Implementation occurred in a community clinic with a heterogeneous caregiver group at risk for elder abuse. Sixteen caregivers completed the 9-week group. The results point to improved psychosocial adjustment, particularly increased problem-focused coping, enhanced emotional well-being, and less fatigue. Caregivers tended to utilize individual therapeutic services at a higher rate during the period of group attendance, indicative of appropriate help-seeking behavior in highly demanding situations. Six of the 16 caregivers repeated the training sequence in “booster” groups. Follow-up data from the booster groups suggest that high-risk caregivers may require continuing support to maintain treatment gains. In addition to demonstrating the feasibility of DBT Skills with caregivers, the results warrant a controlled outcome evaluation.     

Family Functioning,Parental Psychological Distress and Child Behaviours: Evidence from the Victorian Child Health and Wellbeing Study

We examined, using data from the 2006 Victorian Child Health and Wellbeing Study (VCHWS), whether family functioning is associated with parental psychological distress and children's behavioural difficulties. The VCHWS was a statewide cross‐sectional telephone survey to 5,000 randomly selected primary caregivers of 0‐ to 12‐year‐old children between October 2005 and March 2006. Only parents or guardians of children aged 4–12 years (n = 3,370) were included in this study. After adjusting for sociodemographic variables and ethnicity, parents or guardians scoring higher on the family functioning scale (i.e., from poorly functioning households) were at greater risk of psychological distress and had children with lower levels of prosocial behaviour and higher levels of behavioural difficulties relative to those from healthily functioning households. Mental health prevention programmes addressing child mental and conduct problems should consider the family environment and target those families functioning poorly.     

The impact of child problem behaviors of children with ASD on parent mental health: the mediating role of acceptance and empowerment

Raising a child with an autism spectrum disorder (ASD) has often been associated with higher levels of parenting stress and psychological distress, and a number of studies have examined the role of psychological processes as mediators of the impact of child problem behavior on parent mental health. The current study examined the relations among child problem behavior, parent mental health, psychological acceptance, and parent empowerment. Participants included 228 parents of children diagnosed with ASD, 6-21 years of age. As expected, psychological acceptance and empowerment were negatively related to the severity of parent mental health problems. When acceptance and empowerment were compared with each other through a test of multiple mediation, only psychological acceptance emerged as a significant partial mediator of the path between child problem behavior and parent mental health problems. As child problem behavior increased, parent psychological acceptance decreased, resulting in an increase in parent mental health problems. These findings suggest that for problems that are chronic and difficult to address, psychological acceptance may be an important factor in coping for parents of young people with ASD, in line with the growing literature on positive coping as compared with problem-focused coping.     

The Adaptation of Patients During the Hospitalization Period of Bone Marrow Transplantation

A longitudinally study was conducted among 42 bone marrow transplantation (BMT) patients to investigate the association between pretransplant psychosocial variables and psychophysiological outcomes during the immediate convalescence period. Family relationships (cohesion, expressiveness, and conflict) and coping resources (cognitive, social, emotional, spiritual/philosophical, and physical resources) were assessed on the admission day (Day –7 Time 1). Data on psychological distress and pain intensity were obtained on Day +7 (Time 2) and Day +14 (Time 3). The average scores at Times 2 and 3 were computed to indicate the overall adjustments of the patients during the hospitalization period after the day of actual transplant (Day 0). It was shown that higher expressiveness family relationships and higher resources to cope effectively with stressful situations were associated with less psychological distress during the above period. Both pretransplant psychosocial variables were not associated with pain intensity during hospitalization. Allogeneic transplant patients reported higher pain intensity than did autologous transplant patients. Psychological distress and pain intensity were positively correlated with each other. Our findings show that pretransplant family relationships and coping resources associate moderately with psychological distress during the immediate convalescent period of BMT. The present findings support the family-centered approach to BMT care and provide a scientific basis for pretransplant psychosocial interventions.     

A Cognitive Psychophysiological Model to Predict Functional Decline in Chronically Stressed Older Adults

The current study evaluated whether psychological distress (composite of depression, anxiety, vital exhaustion), inflammation (C-reactive protein, CRP) and cognitive function (Digit Symbol Test, DST) and their changes mediated the relationship between caregiver status and functional decline. Caregivers for spouses with Alzheimer’s disease were compared to demographically-similar non-caregiver spouses at study entry (T1), T2 (1 year later), and T3 (2 years after T1). Caregivers had greater functional impairment, higher distress scores, and poorer DST scores at all points of measurement and also showed functional decline. Non-caregivers did not demonstrate functional decline. Caregivers declined 85% faster than did non-caregivers. Regressions showed that after controlling for functional impairment at T1, illness, medication, and health behavior covariates, psychological distress at T1 and increases in CRP from T1 to T3 mediated the difference in functional decline. Moreover, after DST decline from T1 to T2 was entered in the model, caregiver status, psychological distress and increases in inflammation all showed reductions in their predictive importance. These findings suggest psychological distress and increases in inflammation may help explain why caregivers show greater functional decline than non-caregivers. However, the influences of these psychophysiological variables may be driven in part by cognitive decline prior to functional decline. This article is based upon an invited address, “Potential Hazards of Caring for a Loved One with Alzheimer’s Disease” given by the first author in recognition of the author’s receipt of the Association of Psychologists in Academic Health Centers 2005 Award for Distinguished Achievement in Research. The address was presented at the Annual meeting of the American Psychological Association, New Orleans, LA., August, 2006.     

Psychological Adjustment,Social Responsiveness and Parental Distress in an Italian Sample of Siblings of Children with High-Functioning Autism Spectrum Disorder

The psychosocial adjustment of siblings of children with autism spectrum disorder (ASD) is a relatively recent field of study, but results in literature are often inconsistent, and studies specifically focused on samples of siblings of children with high-functioning ASD are very few. This paper analyzes the level of social impairment (index of broader autism phenotype), the risk of internalizing and externalizing problems (index of psychological adjustment) and the parenting distress in an Italian sample of siblings of children with high-functioning ASD (n = 26). The presence of risk factors (birth order, sex and number of siblings in the family) and the role of the siblings’ age are also explored. The data were collected through self-report instruments administered to parents. The results do not show higher average risk levels for psychosocial adjustment problems, even though a minority of the cases is at risk for social impairments (7.7 %), internalizing (23.1 %), externalizing (3.8 %) and total difficulties (11.5 %) and for distress in the parent–child system (15 %). Distress in the parent-sibling system seems to be modulated by the sibling’s features and to be higher when the sibling is older than the child with ASD. Additionally, a link between difficulties in psychological adjustment and broader autism phenotype is suggested.     

Relationships among parental reports of child, parent, and family functioning.

Most children with psychosocial problems do not present for treatment in mental health settings. They are managed by primary care physicians. Children with psychosocial problems often have parents and/or families with psychosocial distress. The present study measured associations between parental reports of child, parent, and family functioning in individuals in the general population. Participants were 226 parents of children, aged 2-16 years, who presented for routine primary care. Parents reported on the psychosocial functioning of themselves, their child, and their family. All correlations of measures were significant, ranging from .55 to .23. Similar to data from psychiatric samples, the psychological functioning of children, parents, and families were significantly correlated. Unlike in psychiatric settings, child mental health problems were not as closely related to parent or family distress as parent and family distress were related to each other and to child behavior problems.     

Is caregiving hazardous to one's physical health? A meta-analysis

Caring for a family member with dementia is generally regarded as a chronically stressful process, with potentially negative physical health consequences. However, no quantitative analysis has been conducted on this literature. The authors combined the results of 23 studies to compare the physical health of caregivers with demographically similar noncaregivers. When examined across 11 health categories, caregivers exhibited a slightly greater risk for health problems than did noncaregivers. However, sex and the health category assessed moderated this relationship. Stronger relationships occurred with stress hormones, antibodies, and global reported health. The authors argue that a theoretical model is needed that relates caregiver stressors to illness and proffers moderating roles for vulnerabilities and resources and mediating roles for psychosocial distress and health behaviors.     

Maternal distress in the context of their child’s type 1 diabetes: exploring the role of adaptive maternal emotion regulation on child outcomes

Parents of children with Type 1 diabetes (T1D) experience high levels of distress, which may negatively impact child functioning. However, little is known about mechanisms that may buffer the adverse impact of parental distress. The current study explored the possible buffering role of maternal adaptive cognitive emotion regulation (CER) for the relationship between maternal distress and child psychological functioning. Forty-three children with T1D (8–15 years) completed measures assessing trait anxiety and depressive symptoms. Their mothers reported on general distress, illness-related parenting stress, and adaptive CER. Maternal illness-related parenting stress (but not general distress) was significantly associated with child psychological functioning. No buffering role for maternal adaptive CER was observed. As the current study is rather preliminary, future research using other methods to examine maternal adaptive CER, and examining other parental variables that may buffer against the negative impact of parental distress is warranted.     

Goal disturbance,coping, and psychological distress in partners of myocardial infarction patients: Taking account of the dyad

Abstract

This study aims to explore the relationship between goal disturbance and levels of psychological distress in partners of myocardial infarction (MI) patients. Furthermore, the role of partner and patient coping behaviour in the context of goal disturbance is explored. Forty dyads were interviewed and completed questionnaires 1 month (T1) and 4 months (T2) post MI. All patients were men. Patients and partners do not differ on anxiety or depression scores, however, patients experience significantly more higher order goal disturbance at T1. Partners reporting more goal disturbance also show increased distress at T1. More use of approach coping by partners contributes to explained variance in their goal disturbance. Partner avoidant coping is moderated by patient avoidant coping. Approaches to reduce distress in partners should thus take account of goal disturbance and coping behaviours within the dyad.     

Caregivers of adults with cancer: Multidimensional correlates of psychological distress

The relationship between psychological distress and intrapersonal, family, and socioecological variables was examined in 77 caregivers of adults actively receiving cancer treatment. Results indicated that a sizable minority (29%) of caregivers was experiencing clinically significant psychological distress. Furthermore, family disturbances and maladaptive coping strategies were most predictive of psychological distress in this sample. The clinical implications of these findings in relation to the assessment and treatment of both patients and caregivers are discussed.     

The Circle of Security Parenting Program (COS-P): A Randomized Controlled Trial of a Low Intensity,Individualized Attachment-Based Program With at-Risk Caregivers

The Circle of Security–Parenting Intervention (COS-P; Cooper et al., 2009) is a psychoeducational program for caregivers of young children that has been widely disseminated. The program is founded in attachment theory and relies on computer-delivered content and parent reflection and discussion to teach concepts of safety and security to promote better caregiver-child relationships and child wellbeing. The present study is a randomized controlled trial of COS-P, individually delivered to 85 Australian caregivers (51 COS-P, 34 waitlist control) who reported parenting distress and child disruptive behaviors. Caregivers completed a baseline assessment and repeated the assessment after completion of COS-P or 8 weeks on the waitlist. Caregivers completed surveys to report child symptoms, and parenting stress, anxious and avoidant attachment, reflective functioning, parenting practices, and depressive symptoms. No differences in COS-P vs. waitlist participants were found at baseline. Analyses of complete data (35 COS-P, 25-26 waitlist) revealed a greater decline in caregivers’ attachment anxiety and negative parenting relative to waitlist, but only attachment anxiety in intent-to-treat analyses. Other improvements were found, but these extended to both the COS-P and waitlist conditions and did not differ between conditions. Overall, effects of COS-P were small and rarely significant, suggesting the need to consider alternative programs that have evidence of effectiveness when providing services to at-risk families.     

Behavior Problems at 5 Years of Age and Maternal Mental Health in Autism and Intellectual Disability

We examined child behavior problems and maternal mental health in a British population-representative sample of 5 year-old children with an autism spectrum disorder (ASD), controlling for the presence of an intellectual disability (ID). Behavior problems were significantly higher in children with ASD with/out ID compared to typically developing children, but compared to children with ID only hyperactivity was significantly higher in children with ASD/ID. After controlling for ID and maternal mental health, the presence of ASD significantly increased the odds for hyperactivity, conduct problems and emotional symptoms. Negative maternal outcomes (serious mental illness, psychological distress, and physical health limitations) were not consistently elevated in ASD. The findings highlight the early age at which behavior problems emerge in ASD, and suggest that at this age , there may not be a clear disadvantage for maternal mental health associated with having a child with ASD in the family, over and above that conferred by child behavior problems.     

Stressful situations in caregiving: relations between caregiver coping and well-being

We examined ways in which caregivers cope with stressful caregiving situations and the relations between coping strategies and caregivers' psychosocial well-being. Respondents were 58 family caregivers to patients discharged from a rehabilitation hospital. Caregivers identified a recent stressful event in caregiving and indicated strategies used to cope with this event. After controlling for patients' impairment level, analyses indicated that caregivers engaging in more escape-avoidance coping reported greater depression and more conflict in their personal relationships. Those using more positive reappraisal demonstrated greater positive affect. Younger caregivers, many of whom were women, used more avoidance strategies. Results have implications for therapeutic interventions with family caregivers.     

Psychometric assessment of cardiac transplantation candidates

Psychometric assessment protocols were used to chart the course of 287 end-stage cardiac patients' psychological adjustment at pretransplantation and, again, in 34 who were subsequently transplanted. The regression and repeated-measures analyses suggested that psychological distress is typical of the adult transplantation candidate, although impaired cognitive functioning is more typical of the acute postoperative stage. Negative affect, cognitive, personality, and coping measures are interrelated at pretransplantation; depression and mental control show significant decreases at 2 weeks posttransplantation. Whereas the transplantation process is inherently distressing, psychological testing may identify cognitive and personality features that require more specific clinical attention.