The Relationship between Socio-demographic Characteristics, Family Environment, and Caregiver Coping in Families of Children with Cancer

The factors that influence caregiver coping mechanism preferences after a child’s diagnosis with cancer are not fully understood. This study examines the relationship between caregivers’ socio-demographic characteristics and the coping strategies they use to adapt to childhood cancer. Sixty caregivers of pediatric cancer patients completed a socio-demographic questionnaire, the Family Environment Scale, and the COPE inventory. There were no significant differences in family environment by income or education. Caregiver educational attainment was positively associated with use of planning and active coping styles, while income was not associated with caregiver coping style. Mothers were more likely than fathers to use active coping, instrumental support, religious coping, and emotional support. Men with lower education engaged in greater substance use coping and lower planning. The findings show that educational attainment and caregiver gender influence caregiver coping styles following a pediatric cancer diagnosis and suggest that educational attainment rather than financial resources drive the association between SES and coping. Programs that address educational gaps and teach caregivers planning and active coping skills may be beneficial for parents with lower educational attainment, particularly men.     

Adjustment to Acute Leukemia: The Impact of Social Support and Marital Satisfaction on Distress and Quality of Life Among Newly Diagnosed Patients and Their Caregivers

Little is known about the specific patterns of adjustment among newly diagnosed acute leukemia patients and their caregivers. This study examined the trajectories of patient and caregiver distress over time as well as the extent to which marital satisfaction and social support moderated these trajectories among those with significant-other caregivers. Forty six patient-caregiver dyads provided ratings at four time points: within 1 week of diagnosis (T1), 2 week follow-up (T2), 6 week follow-up (T3) and 12 week follow-up (T4). As anticipated, patients and caregivers reported higher levels of distress around the time of diagnosis than they did during subsequent time points. Marital satisfaction was a significant predictor of distress among patients, whereas among caregivers, social support predicted distress and quality of life. Results support the inclusion of relational variables such as social support and relationship satisfaction in the assessment of newly diagnosed patients and families in order to best identify those at risk for distress over time.     

Impact of patient suffering on caregiver well-being: the case of amyotrophic lateral sclerosis patients and their caregivers

The impact of patient suffering on family caregivers is an understudied but important topic. This study of patients with amyotrophic lateral sclerosis (ALS) and their caregivers examined the associations of two components of patient suffering: patient physical symptoms, and mental distress, as well as the patient's support for the caregiver, with caregiver well-being. The sample consisted of 52 patients with ALS and their caregivers. Patients and caregivers each completed a structured survey assessing multiple domains including demographics, health, and well-being. Specifically, patients rated their own physical symptoms and mental distress. Caregivers rated their own daily affect, and the extent to which they perceived the patient as supportive. Caregivers also reported whether or not they had found any benefit in dealing with the patient's illness. Regression analyses yielded significant associations of patient distress with caregiver negative affect; patient support was associated with greater caregiver positive affect, and patient symptoms and support were associated with greater likelihood of caregiver benefit finding. There was a significant two-way interaction of patient symptoms by support, namely, benefit finding was not only more likely with greater physical suffering and patient support, but it was also the case that caregivers who perceived the care recipient as unsupportive could only find benefit when this person experienced intense physical suffering. Support interventions for ALS patients and their caregivers should devote particular attention to how caregivers may be affected by witnessing their loved one's sufferings, as well as identify and address challenges in support exchanges between caregivers and patients.     

Children's self-reported coping strategies: the role of defensiveness and repressive adaptation

This study examined differences in self-reported coping strategies across children classified according to Weinberger et al.'s (1979) adaptive style paradigm. Consistent with the larger literature, it was hypothesized that repressors (i.e. characterized by high self-reported defensiveness and low self-reported distress) would endorse fewer behaviorally and cognitively avoidant coping strategies than other adaptive style groups. Participants included 134 children, ranging in age from 10 to 13 (M=11.26, sd=.59), who completed measures of defensiveness, trait anxiety, and coping. Consistent with the hypotheses, results indicated significantly lower endorsement of avoidant coping strategies, and significantly higher endorsement of approach-oriented strategies among repressors, but no significant differences across adaptive style groups for other forms of coping. Results indicate that, consistent with other indicators of psychological functioning, the measurement of coping strategies is subject to the effects of socially desirable responding. Further, results provide evidence that measures of coping may be contaminated by items reflecting adjustment problems.     

Coping strategies: A prospective study of patterns,stability, and relationships with psychological distress

The aims of this article are: (1) to explore patterns (clusters) of coping strategies; (2) to examine the stability of individual coping strategies and patterns of coping over time; and (3) to establish long term associations between coping and psychological distress. Coping strategies were assessed with the Brief Cope questionnaire, whereas psychological distress was measured with the ten‐item version of the Hopkins Symptom Checklist, in a two‐year prospective sample comprising 3,738 employees. Based on TwoStep cluster analysis of the Brief Cope, three different coping patterns were identified: low coping, engagement coping, and disengagement coping. Analyses of long‐term stability indicated malleable properties for the individual coping strategies as well as the three clusters. Disengagement coping strategies in the form of self‐blame and self‐distraction were most strongly associated with distress at follow‐up, whereas baseline distress was related to increased use of these strategies two years later. Coping patterns at baseline had no main effects on later levels of distress, but levels of distress at baseline predicted subsequent use of engagement and disengagement coping patterns. The finding that specific coping strategies are malleable suggests that it is possible to modify and develop dysfunctional strategies. The associations between disengagement coping strategies and distress indicate that this kind of coping is especially problematic with regard to mental health problems. A main contribution of this study is that it establishes cluster analytic techniques as beneficial in the assessment of coping.     

La gestion de la souffrance par le psychologue clinicien. Étude des impacts et des stratégies de coping

We focus in this study on strategies used by clinical psychologists to cope with their own or patient psychological distress in the framework of help relationship. A self-administered form was sent to listings of professionals by e-mail. The sample is made of 187 French clinical psychologists. To cope with patients’ suffering, psychologists use mostly avoidance coping style. And the strategies they prefer are “supervision”, “personal therapy” and “speaking with colleagues” (problem focused coping strategies). To cope with their own distress, which has a lot of negative impacts on help relationship, psychologists have most frequently a problem focused coping style but their favourite strategy is to “lighten their schedules”. And almost a quarter of the sample presents a significant level of distress. In conclusion, results show that psychological distress management by psychologists is an important question with a lot of ethical questions.     

Children's self-reported coping strategies: The role of defensiveness and repressive adaptation

Abstract

This study examined differences in self-reported coping strategies across children classified according to Weinberger et al.'s (1979) adaptive style paradigm. Consistent with the larger literature, it was hypothesized that repressors (i.e. characterized by high self-reported defensiveness and low self-reported distress) would endorse fewer behaviorally and cognitively avoidant coping strategies than other adaptive style groups. Participants included 134 children, ranging in age from 10 to 13 (M=11.26, sd=.59), who completed measures of defensiveness, trait anxiety, and coping. Consistent with the hypotheses, results indicated significantly lower endorsement of avoidant coping strategies, and significantly higher endorsement of approach-oriented strategies among repressors, but no significant differences across adaptive style groups for other forms of coping. Results indicate that, consistent with other indicators of psychological functioning, the measurement of coping strategies is subject to the effects of socially desirable responding. Further, results provide evidence that measures of coping may be contaminated by items reflecting adjustment problems.     

Predictors of burden in spouse caregivers of individuals with Alzheimer's disease

This study used the following model of distress: Distress = [Exposure to Stress + Vulnerability]/[Psychological and Social Resources]. The constructs in the model were operationalized as (a) distress in response to caregiver experiences (burden); (b) exposure to stress (care recipient functional impairment in activities of daily living [ADLs]); (c) vulnerability (caregiver health problems, anger, and anxiety); and (d) resources (coping, outlook on life, and social supports). Long-term burden (15-18 months after entry) was predicted by several baseline variables: burden, care recipient ADLs, vulnerability and resource variables, and specific interactions of burden, ADLs, vulnerability, and resource variables. The interactions showed that caregivers with high vulnerability and low resources had higher burden scores than caregivers with other combinations of these variables.     

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.     

Coping strategies and psychological distress in cancer patients before autologous bone marrow transplant

The increased use of bone marrow transplantation (BMT) to treat a variety of cancers has led researchers to study psychological functioning of BMT patients. The majority of studies conducted, however, has focused on adjustment after transplantation. Cancer patients' use of coping strategies before undergoing this procedure may also relate to levels of psychological distress. Our aims were (1) to provide normative coping data, controlling for situation-specific variables with a homogeneous sample, targeted stressor, and fixed time point, using the Ways of Coping Questionnaire; and (2) to identify coping strategies associated with distress before high-dose chemotherapy. Subjects were 49 patients scheduled to receive high-dose chemotherapy and an autologous bone marrow transplant. Consistent with previous coping research, we found that escape-avoidance was related to psychological distress on several measures. Item endorsement analyses of the escape-avoidance subscale suggest that patients may have used more passive than active avoidance strategies. Subsequent participation in a longitudinal study was not affected by initial levels of avoidant coping.     

Coping in Caregivers of Youth with Spinal Cord Injury

This study examined coping among caregivers of youth with spinal cord injuries (SCI). Using a cross-sectional survey study design, 164 caregivers completed a demographics questionnaire and the Brief COPE. Their children, youth with SCI ages 7–18, completed the Kidcope. T-tests were conducted to examine differences in caregiver coping by demographic and injury-related factors. Further, logistic regression models were evaluated to examine predictive relationships between caregiver coping and youth coping. Several demographic and injury-related factors were related to caregiver coping, including caregiver gender, race, and education, as well as youth gender, age at injury, and time since injury. In the logistic regressions, two caregiver coping strategies were related to youth coping: caregiver self-blame coping was related to youth self-criticism, and caregiver behavioral disengagement coping (giving up attempts to cope) was related to youth blaming others coping. The findings suggest that caregiver coping may play a role in the coping of their children, and should be considered when addressing coping among youth with SCI.     

Predicting Potentially Harmful Psychological and Physical Behaviours by Parental Caregivers toward Children with Autism Spectrum Disorder

Mistreatment of dementia patients by spousal care providers is fairly common. Caregivers’ characteristics, particularly their psychosocial, physical and cognitive functioning, and coping behaviours, predict reports of elder mistreatment. Parental caregivers of children with autism spectrum disorder (ASD) however, despite the similarities they share with dementia caregivers, have not been studied in this context. A sample of N?=?95 caregivers of children with ASD completed an online survey assessing: (a) psychosocial, physical and cognitive functioning, and (b) coping behaviours. Caregivers also: (c) rated the extent to which they used potentially harmful psychological (e.g., screamed at the child) and physical (e.g., slapped the child) behaviours to cope with caregiving challenges over the last 12 months. Rates of potentially harmful psychological and physical behaviours were extremely low. However, 95% of caregivers reported using at least one potentially harmful psychological behaviour at some point in the last 12 months, and almost 38% reported using at least one potentially harmful physical behaviour. Mediation analysis yielded an indirect effect of psychological distress on potentially harmful psychological behaviours through disengaged coping. In conclusion, rates of potentially harmful behaviours appear to be low in the context of caring for a child with ASD. Caregivers reporting increased psychological distress were more likely to use potentially harmful psychological behaviours, and this effect was partially mediated by greater use of disengaged coping.     

Relationship between Mental Health and Burden among Primary Caregivers of Outpatients with Schizophrenia

There is growing recognition that caring for a patient with schizophrenia often results in high levels of perceived burden and poorer overall mental health for caregivers. A quantitative cross‐sectional design and standardized instruments were used to collect data from 355 primary caregivers of adults in outpatient care with schizophrenia in China. Structural equation modeling was used to examine the association between caregiver burden and mental health among primary caregivers and whether this association is influenced by personality, coping style, and family functioning, based on a diathesis–stress perspective. Goodness‐of‐fit indices (χ²/df = 1.406, GFI = 0.919, CFI = 0.957, etc.) confirmed that the modified model fit the data well. In line with the diathesis–stress model, and with this study's hypotheses, we found that caregiver burden was significantly related to mental health outcomes directly. The final model showed that personality traits, coping style, and family function influenced the relationship between caregiver burden and mental health. The neuroticism personality traits have a direct effect on caregiver burden and family functioning in this sample. Coping style had a direct effect on the caregiver burden, and family functioning had a direct effect on the caregiver burden. Our final model about primary caregivers can be applied clinically to predict mental health outcomes from caregiver burden.     

Endorsement of proactively aggressive caregiving strategies moderates the relation between caregiver mental health and potentially harmful caregiving behavior

This research tested the proposition that the oft-reported relation between caregiver mental health outcomes (i.e., resentment, depression) and potentially harmful caregiver behavior (PHB) would be mediated or moderated by caregiver endorsement of proactively aggressive caregiving strategies (PA). Caregiver resentment was the strongest predictor of PHB in the sample of 417 informal caregivers who resided with their care recipients; in fact, resentment mediated the impact of caregiver depression, thus suggesting that depressed affect was associated with PHB only if depressed caregivers resented their caregiving burdens. As predicted, caregiver endorsement of PA moderated the relation between resentment and PHB, such that links between these two constructs were strongest when caregivers were high in both resentment and PA. Endorsement of PA also mediated the relations between demographic or contextual variables (i.e., income, care recipient dementia) and PHB. Implications of these results for research and intervention are discussed.     

Video Intervention for Child and Caregiver Distress Related to the Child Sexual Abuse Medical Examination: A Randomized Controlled Pilot Study

Children who disclose child sexual abuse are often referred for a comprehensive medical exam to ensure physical well-being and gather evidence. This study examined a brief, developmentally appropriate, psychoeducational video designed to instruct children and caregivers about the exam procedures and coping strategies to be used during the exam. Sixty-nine children ages 4–15 and their caregivers were randomly assigned to view the psychoeducational video (n = 35) or to receive standard practice (n = 34). Distress before, during, and after the exam was assessed in both children and caregiver, as were measures of satisfaction and knowledge about the investigation process and coping strategies. Consistent with hypotheses, results indicated that the video intervention was well-received by families, increased caregiver knowledge, and decreased stress during the examination. Caregiver and child distress decreased from pre to post examination across both conditions, and, unexpectedly, there were no significant differences in these decreases between groups. Overall results from this pilot study are promising in supporting a cost-effective and brief early intervention approach at the time of the medical examination for child sexual abuse for children and their caregivers.     

Caregiver models of self and others, coping, and depression: predictors of depression in children with chronic pain.

In a sample of 59 chronically ill pediatric patients and their maternal caregivers, both child-reported pain and caregiver-reported depression predicted child-reported depression. Results further suggested that the association between pain and depression in children is ameliorated by caregiver coping strategies and that how caregivers cope is a function of their attachment-related representations of the self and others. Caregivers with a negative model of the self were more depressed. and those with a negative model of others were more prone to use avoidant coping strategies, and, in turn, to be more depressed. However, the extent to which caregivers with negative models of self used more avoidant and less approach coping appeared to depend on whether they perceived that others were likely to respond to their needs.     

脑卒中患者功能独立性与家庭照料者负担感的关系：以社会支持为中介变量和调节变量

研究对203名脑卒中患者的家庭照料者进行了问卷调查,以探讨患者的功能独立性对家庭照料者负担感的作用机制。结果显示,82.3%脑卒中患者的家庭照料者有明显的负担感;患者的功能独立性与家庭照料者的负担感显著负相关;来自患者的社会支持在患者功能独立性与家庭照料者负担感之间起中介作用,而来自患者之外的社会支持则起调节作用。结果表明,在家庭照料负担的干预实践中,应注意区分来源不同的社会支持及其作用机制。     

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.     

Manifestations of anxiety and coping strategies in patients with metastatic lung cancer and their family caregivers: a qualitative study

Objective: Advanced non-small cell lung cancer (NSCLC) is common, deadly, and associated with impairing anxiety for patients and caregivers who often co-experience similar symptoms that can vary together over time. We aimed to discover themes as to how NSCLC patients and caregivers express and cope with anxiety.

Design: Semi-structured interviews of patient-caregiver dyads (N?=?21), coded using NVivo Software.

Main Outcome Measures: Open-ended questions on anxiety mutuality, giving or receiving care, communication, and the most difficult aspects of having or caring for someone with Stage IV NSCLC.

Results: Analyses revealed that patients and caregivers were linked psychologically, co-experiencing symptoms of distress or coping, rising and falling together. Shared patient and caregiver themes emerged of cognitive, behavioural and physiological manifestations of anxiety and coping mechanisms.

Conclusions: Patient and caregiver expressions of anxiety and coping methods mapped onto the cognitive-behavioural model, implying potential use of cognitive behavioural therapy (CBT) to address these issues. This expands understanding of symptoms and coping strategies in NSCLC, explores patient-caregiver interaction, and confirms the need for future clinical intervention. Future research should focus on development and dissemination of CBT-based dyadic interventions addressing anxiety in NSCLC patients and caregivers.     

Social support,coping, and psychological adjustment among caregivers of head-injured patients

Abstract

The purpose of this study was to test a mediational model of risk and protective factors associated with the psychological adjustment of caregivers of head-injured patients. Forty-three caregivers of patients who had suffered a head injury participated in the study. Findings strongly supported hypotheses. Caregiver burden was associated with poorer psychological adjustment. Social support and a higher percentage of approach coping strategies relative to overall coping strategies were associated with better psychological adjustment. As predicted, caregiver burden showed a direct relationship to psychological adjustment, while social support showed an indirect relationship to adjustment mediated by percentage approach coping.