Family Caregivers of Persons With Spinal Cord Injury: Predicting Caregivers at Risk for Probable Depression

OBJECTIVE: To determine the percentage of family caregivers of persons with spinal cord injury (SCI) with probable depression and to test the hypothesis that dysfunctional problem-solving abilities would be significantly predictive of risk status after taking into account important demographic characteristics and caregiver health. DESIGN: Correlational and logistic regression analyses of data collected in a cross-sectional design. PARTICIPANTS: Eighteen men and 103 women caregivers (mean age of caregivers = 45.66 years, SD = 12.88) of individuals with SCI. MAIN OUTCOME MEASURE: The Inventory to Diagnose Depression. RESULTS: Nineteen caregivers (15.7%) met criteria on the Inventory to Diagnose Depression for a major depressive disorder. A dysfunctional problem-solving style was significantly predictive of caregiver depression, regardless of the severity of physical impairment of the care recipient or the physical health of the caregiver and caregiver demographic variables. CONCLUSIONS: The percentage of caregivers with probable depressive disorder may parallel that observed among persons with SCI, using a more conservative self-report measure designed to assess symptoms associated with a depressive syndrome. Family caregivers with a dysfunctional problem-solving style and assisting individuals with more severe injuries may have probable depression.     

Caregiver Factors Predicting Service Utilization Among Youth Participating in a School-based Mental Health Intervention

Large numbers of children and adolescents experience diagnosable psychiatric disturbances; however, the majority of those with need do not utilize mental health services. Characteristics of caregivers are important predictors of which youth will access and continue to use services over time. In recent years school-based mental health intervention programs have played a key role in identifying youth with mental health needs and linking them to treatment. In this study we sought to identify the caregiver demographic and contextual factors that predict days of service use among youth participating in a school-based mental health intervention program. Our sample included 85 youth ages 5–18 and their caregivers. We analyzed the data using bivariate and multivariate Poisson regressions with caregiver factors as the independent variables and days of service as the dependant variable. We found significant bivariate and multivariate associations for every caregiver demographic (sex, age, race) and contextual (education, employment, income, insurance, health, strain, and was it the caregivers idea to seek treatment) factor that was examined. In this study we identified the caregiver factors that are likely important in predicting youth service utilization even when steps have been taken to improve identification and access.     

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.     

The association between gender, coping style and whiplash related symptoms in sufferers of whiplash associated disorder

The aim of the present study was to examine specifically whether the relationship between coping style and symptoms of whiplash injury change as a function of gender. A total of 1709 sufferers of whiplash associated disorder (1349 women, 360 men) belonging to the Danish Society for Polio, Traffic and Accident Victims completed questionnaires measuring demographic and psychological factors (including coping style), and symptoms of whiplash trauma (including pain). Men and women were not found to differ significantly in their use of coping strategies, however emotion focused coping strategies were related significantly more strongly to whiplash related symptoms in men compared to women. Women were found to display more symptoms related to whiplash injury compared to men. Possible reasons for the present findings are discussed in light of related research indicating mood as a potential moderating variable in the relationship between maladaptive coping style and degree of symptoms related to injury in men.     

Impact of Caregiver Factors on Youth Service Utilization of Trauma-Focused Cognitive Behavioral Therapy in a Community Setting

Trauma-Focused Cognitive Behavioral Therapy (TF-CBT) is an increasingly available evidence-based therapy that targets the mental health symptoms of youth who have experienced trauma. Limited research has examined how to engage and retain families in TF-CBT services in community settings. Using a mixed-methods approach, the goal of this exploratory study was to identify caregiver factors that impact youth enrollment and completion of community-delivered TF-CBT. The study included 41 caretakers of youth referred to therapy at a local child advocacy center following a forensic assessment substantiating youth trauma exposure. Caregiver factors examined include caregiver demographics, trauma exposure, and mental health symptomology. Results from multivariate logistic regressions indicate that caregivers reporting more children residing in the household were significantly more likely to enroll youth in therapy (OR 2.27; 95 % CI 1.02, 5.03). Qualitative analyses further explicate that parents with personal trauma or therapy experiences expressed positive opinions regarding therapy services for youth, and were more likely to enroll in or complete services. Findings suggest that caregivers with personal traumatic experience and related symptomatology view therapy as important and are more committed to their child receiving therapy. Future research on service utilization is warranted and should explore offering parental psychoeducation or engagement strategies discussing therapy benefits to parents who have not experienced trauma and related mental health symptomatology.     

Caring for the Caregivers: An Investigation of Factors Related to Well-Being Among Parents Caring for a Child with Smith-Magenis Syndrome

Smith-Magenis syndrome (SMS) is a complex disorder characterized by numerous challenges, including intellectual disability, speech delay, decreased pain sensitivity, sleep disturbances, hyperactivity, mood instability, and self-injury. Caregivers must readily adapt to the ever-changing needs of the child. Due to these demands, caregivers may encounter difficulties maintaining their own level of well-being. Thus, a total of 112 primary caregivers (i.e., parents) of individuals diagnosed with SMS responded to online questionnaires to assess demographic and psychosocial factors, such as perceptions of child health vulnerability, benefit finding, sleep behaviors, anxiety and depression symptomatology, and caregiver satisfaction and self-efficacy, which may be related to caregiver well-being. Results show that, among mothers, caregiver well-being was directly related to perceived child health vulnerability, caregiver satisfaction, and benefit finding, and a significant moderating effect was observed for depression/anxiety counseling after beginning the caregiver role on the relationship between anxiety symptomatology and caregiver well-being. Results further suggest that maternal caregivers who report high levels of anxiety but do not seek counseling fair the worst in terms of well-being. Among fathers, lower depression symptoms and greater benefit finding were related to higher levels of caregiver well-being. These data show that many factors play roles in influencing coping and well-being among SMS caregivers. Investigating these variables and relationships may reveal additional resources and interventions to assist primary caregivers.     

Sources of variability in children’s language growth

The present longitudinal study examines the role of caregiver speech in language development, especially syntactic development, using 47 parent–child pairs of diverse SES background from 14 to 46 months. We assess the diversity (variety) of words and syntactic structures produced by caregivers and children. We use lagged correlations to examine language growth and its relation to caregiver speech. Results show substantial individual differences among children, and indicate that diversity of earlier caregiver speech significantly predicts corresponding diversity in later child speech. For vocabulary, earlier child speech also predicts later caregiver speech, suggesting mutual influence. However, for syntax, earlier child speech does not significantly predict later caregiver speech, suggesting a causal flow from caregiver to child. Finally, demographic factors, notably SES, are related to language growth, and are, at least partially, mediated by differences in caregiver speech, showing the pervasive influence of caregiver speech on language growth.     

Sources of variability in children’s language growth

The present longitudinal study examines the role of caregiver speech in language development, especially syntactic development, using 47 parent–child pairs of diverse SES background from 14 to 46 months. We assess the diversity (variety) of words and syntactic structures produced by caregivers and children. We use lagged correlations to examine language growth and its relation to caregiver speech. Results show substantial individual differences among children, and indicate that diversity of earlier caregiver speech significantly predicts corresponding diversity in later child speech. For vocabulary, earlier child speech also predicts later caregiver speech, suggesting mutual influence. However, for syntax, earlier child speech does not significantly predict later caregiver speech, suggesting a causal flow from caregiver to child. Finally, demographic factors, notably SES, are related to language growth, and are, at least partially, mediated by differences in caregiver speech, showing the pervasive influence of caregiver speech on language growth.     

The Impact of Perceptions of Health Control and Coping Modes on Negative Affect Among Individuals with Spinal Cord Injuries

A wide range of demographic, medical, and personality and coping variables have been implicated as predictors of psychosocial outcomes following the onset of spinal cord injuries (SCI). The primary purpose of this study was to examine the role that perceptions of health control (internality, chance-determined, and other persons-determined) and coping strategies play in predicting respondents’ negative affect, namely, reactions of depression and anxiety [i.e., posttraumatic stress disorder (PTSD)], as outcomes of psychosocial adaptation to disability. A second purpose was to investigate the potential role that time since injury (TSI) plays in moderating the influence of coping on psychosocial outcomes related to SCI. Ninety five survivors of SCI participated in the study by completing a battery of self-report measures. Two sets of multiple regression analyses were employed to address the study’s goals. Findings indicated that after controlling the influence of gender, age, time since injury, and number of prior life traumas: (a) the use of disengagement coping successfully predicted both respondents’ levels of depression and PTSD; (b) none of the perceptions of control of one’s health significantly influenced psychosocial reactions to SCI, as indicated by depression and PTSD, although perceptions of chance control showed a moderate positive trend; and (c) time since injury did not moderate the relationships between coping and negative affect related to the onset of SCI. The implications of these findings to rehabilitation professionals are discussed.     

Executive functioning and health-related quality of life in pediatric sickle cell disease

Research consistently indicates that children with sickle cell disease (SCD) face multiple risk factors for neurocognitive impairment. Despite this, no empirical research to date has examined the impact of neurocognitive functioning on quality of life for this pediatric group. Thus, the current study aims to examine the relationship between executive functioning and quality of life in a sample of children with SCD and further explore psychosocial and family/caregiver resources as moderators of this relationship. A total of 45 children with SCD aged 8 to 16 years and their caregivers completed measures of quality of life, behavioral ratings of executive functioning, and psychosocial functioning. Hierarchical linear regression models were utilized to determine the impact of executive functioning on quality of life and further test the interaction effects of proposed moderating variables. Controlling for age, pain, and socioeconomic status (SES), executive functioning was found to significantly predict child- and parent-reported quality of life among youth with SCD. Psychosocial resources of the primary caregiver or family was not found to moderate the relationship between executive functioning and quality of life. These results provide the first empirical evidence that lower executive skills negatively predict quality of life for children with SCD, supporting clinical and research efforts which aim to establish efficacious interventions that target cognitive decrements within this pediatric population.     

Child and Family Team Meeting Characteristics and Outcomes in a Statewide System of Care

Systems of care (SOC) have relied on the wraparound care process to individualize community‐based services for children and youth with serious emotional and behavioral difficulties. A core element of wraparound care is Child and Family Team meetings (CFTs), which are designed to give youth and families a leadership role in developing and guiding their plan of care. The National Wraparound Initiative (NWI) has identified Practice Standards regarding CFT implementation. This study examined CFT characteristics and the association between those characteristics and youth and family outcomes in a statewide SOC. Participants were 363 youth (M_age = 10.89, SD = 3.72) and their caregivers. Families completed measures of youth and caregiver functioning and symptoms at enrollment and 6‐month follow‐up. Care coordinators completed a survey assessing CFT implementation and characteristics following each meeting. Multiple regression analyses were used to examine the relationship between CFT characteristics and youth and caregiver outcomes. Results indicated that a higher number of CFTs was associated with poorer outcomes, while a higher percentage of natural supports at meetings was associated with better youth outcomes. Number of days to the first CFT was associated with greater caregiver strain. Implications for CFT implementation within wraparound are discussed.     

Perceived Social Support and Caregiver Strain in Caregivers of Children with Tourette’s Disorder

The research on Tourette’s disorder (TD), a neuropsychological disorder consisting of motor and phonic tics, has largely focused on individuals with TD and not on the caregivers of children with TD. We investigated the effects of several variables on caregiver strain of caregivers of children with TD, including perceived social support, caregiver characteristics, and characteristics of the child’s disorder. An online survey was completed by 140 caregivers of children with TD between the ages of 6 to 18 years. We performed a path analysis to examine the outcome of caregiver strain in relation to the research variables. Our results indicated that caregiver age, symptom severity of the child’s TD, and perceived social support accounted for variance in caregiver strain, and that perceived social support was a partial mediator of child’s symptom severity and caregiver strain. Symptom severity and caregiver strain were also related to the presence of other comorbid disorders, such as Oppositional Defiant Disorder (ODD), anxiety, or Attention Deficit Hyperactivity Disorder (ADHD) when compared to children either having no other comorbid disorders or other types of disorders.     

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.     

Psychological Distress in Caregivers of Liver and Lung Transplant Candidates

Although organ transplantation represents a stressful experience for the entire family, surprisingly little research has focused on the adjustment of caregivers. The purpose of this study was to examine what caregivers report to be the greatest benefits and stressors pretransplant, the prevalence of psychological distress and caregiver strain in pretransplant caregivers as compared to normative populations, and the physical, psychological, and demographic variables that predict distress. Fifty-two caregivers of transplant candidates (28 liver and 24 lung) completed a series of questionnaires, including the Psychosocial Adjustment to Illness Scale (PAIS-SR), SF-36 Health Survey, Caregiver Strain Index (CSI), and qualitative questions about benefits and stressors. The most commonly reported benefit of being a caregiver could be categorized as Helping the Patient, and the most common stressors were associated with Uncertainty/Waiting/Fears. Compared to normative samples of caregivers of patients with Alzheimer's disease, caregivers of liver transplant candidates reported more caregiver strain; there were no differences for lung transplant caregivers. Caregiver social functioning was found to be the only significant predictor of caregiver distress, with those caregivers who report greater distress also reporting extreme and frequent interference with normal social activities. Implications of these findings for psychological interventions are discussed.     

“It can save you if you just forget”: Closeness and Competence as Conditions for Coping among Ugandan Orphans

This article explores the coping strategies of orphaned children and their caregivers supported by a community-based organization in a Ugandan slum area. In-depth qualitative interviews were conducted with eight orphans (aged 12 to 16 years) and their caregivers selected by the community-based organization. The children had experienced several co-occurring risk factors such as loss and separation, poverty, disease, and an unsafe environment. Most caregivers were extended family members. One caregiver was an unrelated foster carer. Three of the households were child-headed. Data were analysed using an adapted approach of Giorgio's (Hafting, 1995; Malterud, 2001) psychological-phenomenological method. Participating children from child-headed households lacked protective factors associated with closeness (i.e., supportive dyadic relationships). All the children in the study experienced competence in the arenas of school and household chores. Cultural advice on handling adversity, including ‘forgetting’, ‘accepting’ and ‘adjusting’, appears to contradict Western theories of coping. Sommerschild's theoretical model on the conditions for coping was effective in identifying conditions in children's lives that may impair their coping, self-worth, and resilience.     

Family Caregivers of Women with Physical Disabilities

Cross-sectional, correlational analyses of data from two separate studies were conducted to examine the correlates of adjustment among family caregivers of women with disabilities. Participants included 40 caregivers of women with spinal cord injuries in the first study and 53 caregivers of women with cerebral palsy, traumatic brain injury, and other neuromuscular disabilities in the second study. It was hypothesized that a negative problem-solving style would be associated with greater caregiver distress in both studies, and that caregiver adjustment would be associated with care recipient depression in the second study. As expected, results indicated that a higher negative orientation toward solving problems was associated with caregiver depression and lower well-being. However, in the second study, caregiver characteristics were not associated with care recipient depression. These data indicate that considerable variability exists in caregiver adjustment. Methodological limitations and the implications for research, service, and policy formation are! discussed.     

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.     

The Relationship Between Caregiver Capacity and Intensive Community Treatment for Children with a Mental Health Crisis

We studied 9,220 children referred to a comprehensive mental health crisis stabilization program to examine the impact of caregiver capacity on crisis worker decisions to refer children for intensive community-based treatment as opposed to inpatient psychiatric hospitalization. Due to the different role of caregivers in the child welfare system, analyses were stratified by state custody status. Among both groups, there was a significant inverse association between child mental health need and referral to intensive community-based treatment. For children not in state custody with low mental health need, there was no difference in the likelihood of referral to intensive community-based treatment across levels of caregiver capacity. However, for children not in state custody with medium and high mental health needs, those whose caregivers were deficient or severely deficient were significantly more likely to be referred for intensive community-based treatment than were those who had capable caregivers. Multivariate analyses demonstrated similar results after controlling for potential confounding variables and confirmed that caregiver capacity contributes significantly to the logistic model’s classification accuracy. Results suggest further investigation of the impact of caregiver capacity on mental health crisis worker referral decisions is needed.     

Mothers as a Resource in Times of Stress: Interactive Contributions of Socialization of Coping and Stress to Youth Psychopathology

This study examined the hypothesis that maternal socialization of coping would make a differential contribution to youth depression and externalizing psychopathology depending on youths’ level of exposure to life stress. A sample of 155 youth (M age = 12.41, SD = 1.21) and their maternal caregivers completed semi-structured interviews and questionnaires in a two-wave longitudinal study over a 1-year period. Results provided evidence for two types of socialization × stress interactions—an amplification-effects model and a differential-effects model. In the context of interpersonal stress, findings supported an amplification-effects model wherein the risk and protective effects of engagement and disengagement socialization of coping emerged in youth exposed to high but not mild levels of stress. In the context of noninterpersonal stress, findings supported a differential-effects model wherein disengagement socialization of coping contributed to heightened risk among youth exposed to high stress but dampened risk among youth exposed to mild stress. This research identifies maternal socialization of coping as a noteworthy contributor to risk for youth psychopathology, and highlights the need to consider parenting × environment interactions when investigating parenting processes related to youth psychopathology.     

Understanding the Relationship between Religiosity and Caregiver–Adolescent Communication About Sex within African-American Families

Caregiver–adolescent communication about sex plays a critical role in the sexual socialization of youth. Many caregivers, however, do not engage their youth in such conversations, potentially placing them at risk for negative sexual health outcomes. Lack of caregiver–adolescent communication about sex may be particularly harmful for rural African American youth, as they often report early sex initiation and are disproportionately impacted by STIs. Moreover, sexual communication may be particularly challenging for families with strong religious backgrounds, potentially affecting the occurrence and breadth of topics covered during communication. Study aims were to: determine whether there was a relationship between caregiver religiosity and type of topics covered during communication about sex (e.g., general sexual health vs. positive aspects of sexuality) among 435 caregivers of early adolescent, African American youth; and if so, identify factors that might explain how religiosity affects communication about sex. Results indicated that caregiver religiosity was positively associated with communication about general, but not positive aspects of sexuality for caregivers of males. Attitudes towards communication about sex and open communication style mediated the relationship. There was no association between religiosity and communication about sex for caregivers of females. The findings from this study could provide a base to better understand and support the sexual socialization process within religious, African American families.