Caregivers’ Level of Trust in Their Children's Health Care Providers

Trust in healthcare providers is associated with clinical outcomes among adult patients. Children with disabilities have complex health needs that place stress on caregivers. Consequently, they are increasingly likely to rely on their children's health care providers to ensure children's health care needs are met. However, no studies have explored factors affecting caregivers’ trust in their children's providers. We assessed caregivers’ trust in their children's providers and identified predictive factors of trust. The results indicate that children's disability condition, functional status, age, the providers’ specialty, and the type of health care plan are significant predicators of caregiver's trust. Specifically, caregivers of children with emotional/behavioral disabilities and children with poor physical or emotional/behavioral functioning reported less trust in their children's providers compared to caregivers of children without physical disabilities or no disability and those having higher levels of physical or emotional/behavioral functioning. In addition, caregivers of younger children had more trust compared to caregivers of older children. Caregivers of children enrolled in a managed care plan for physical health care reported less trust compared to caregivers of children in other organizational arrangements. Finally, caregivers reported more trust in physical health providers compared to mental health providers.     

Balancing Elder Care Responsibilities and Work: The Impact on Emotional Health

The current study investigated the effects of balancing elder care and work on emotional health. Responses from 43 retired caregivers, 211 not retired caregivers, 49 retired non-caregivers, and 224 not retired non-caregivers, who had participated in the national Health and Retirement Study, served as the data base. Results indicate that Caregiver Status (Caregiver vs. Non-caregiver) and Retirement Status (Retired vs. Not Retired) interact, depending on the measure of emotional health. The relationship between the number of depression symptoms reported and Caregiver Status depended on whether the respondent was also retired or employed; a significant interaction was not found when emotional health was measured with one overall item. A significant difference was not found between employed caregivers and employed non-caregivers, in terms of emotional health. Employed caregivers who gave more caregiving hours did report poorer emotional health than employed caregivers who gave fewer hours. Female caregivers reported more depression symptoms than male caregivers. The results suggest that employers may need to develop interventions which may help caregivers who are highly involved with caregiving responsibilities.     

Reduction of caregiver burden in Alzheimer's disease by treatment with galantamine

Alzheimer's disease is a progressive condition characterized by a loss of cognition, altered behavior, and a loss of functional ability, such as bathing, dressing, toileting, and organizing finances. Family and friends provide nearly three quarters of all care for patients with Alzheimer's disease. This informal care results in significant burden to caregivers. Caregiver burden is the set of physical, psychological or emotional, social, and financial problems that family members may experience when caring for impaired older adults. Caregivers of Alzheimer's disease patients report higher rates of physical symptoms, mortality, depression, and fatigue, as well as adverse effects on employment compared with those who are not caregivers for Alzheimer's disease patients. In many cases, the same family members are responsible for both out-of-pocket expenditures and caregiving duties. For this article, a MEDLINE search using the key words "caregiver and Alzheimer's disease" and "cost and Alzheimer's disease" was performed. The purpose of this article is to review the literature on caregiver burden, the components of caregiver burden, effects of caregiving on the health of caregivers, the cost of Alzheimer's disease on the caregiver and society, and the benefits attainable with treatment.     

Communal Behaviors and Psychological Adjustment of Family Caregivers and Persons With Spinal Cord Injury

OBJECTIVE: Examined the influence of mutual communal behaviors on the adjustment reported by persons with spinal cord injury (SCI) and their family caregivers. Previous research has found that persons who have a history of mutually communal behaviors in relationships may react differently to relationship changes after an acquired physical disability than dyads with few communal behaviors. METHOD: Family caregivers and persons with SCI were administered measures of mutual communal behaviors, depression, and life satisfaction. Structural equation modeling was used to test the relations among caregivers' communal behaviors and care recipients' communal behaviors, depression, and life satisfaction. RESULTS: Caregiver and care recipient reports of communal behaviors were not significantly correlated. Significant paths indicated that care recipients' communal behavior scores were positively associated with their life satisfaction, and care recipients' depression was inversely associated with their life satisfaction. Caregivers' communal behavior scores were unrelated to their self-reported adjustment. CONCLUSIONS: Caregiver-care recipient dyads may differ in their perceptions of communal behaviors in their relationships. Although care recipient reports of communal behavior may be related to their life satisfaction, communal behaviors may not serve a similar function among caregivers of persons with SCI.     

The Children’s Attention-Deficit Hyperactivity Disorder Telemental Health Treatment Study: Caregiver Outcomes

The Children’s Attention-deficit Hyperactivity Disorder (ADHD) Telemental Health Treatment Study (CATTS) tested the hypotheses that children and caregivers who received guideline-based treatment delivered through a hybrid telehealth service delivery model would experience greater improvements in outcomes than children and caregivers receiving treatment via a comparison delivery model. Here, we present caregiver outcomes. 88 primary care providers (PCPs) in seven geographically underserved communities referred 223 children (ages 5.5 ? 12.9 years) to the randomized controlled trial. Over 22 weeks, children randomized to the CATTS service delivery model received six sessions of telepsychiatry and six sessions of caregiver behavior management training provided in person by community therapists who were trained and supervised remotely. Children randomized to the comparison Augmented Primary Care (APC) service model received management in primary care augmented by a single telepsychiatry consultation. Caregiver outcomes included changes in distress, as measured by the Patient Health Questionnaire (PHQ-9), Parenting Stress Index (PSI), Caregiver Strain Questionnaire (CSQ) and Family Empowerment Scale (FES). Caregivers completed five assessments. Multilevel mixed effects regression modeling tested for differences between the two service delivery models in caregiver outcomes from baseline to 25 weeks. Compared to caregivers of children in the APC model, caregivers of children in the CATTS service model showed statistically significantly greater improvements on the PHQ-9 (β?=?-1.41, 95 % CI?=?[?2.74, ?0.08], p?<?.05), PSI (β?=??4.59, 95 % CI?=?[?7.87, ? 1.31], p?<?.001), CSQ (β?=??5.41, 95 % CI?=?[? 8.58, ?2.24], p?<?.001) and FES (β?=?6.69, 95 % CI?=?[2.32, 11.06], p?<?.01). Improvement in child ADHD symptoms mediated improved caregiver scores on the PSI and CSQ. Improvement in child ODD behaviors mediated caregiver CSQ scores. The CATTS trial supports the effectiveness of a hybrid telehealth service delivery model for reducing distress in caregivers of children with ADHD and suggests a mechanism through which the service model affected caregiver distress.     

Psychiatric and Psychological Morbidity as a Function of Adaptive Disability in Preschool Children with Aggressive and Hyperactive-Impulsive-Inattentive Behavior

Children with high levels of aggressive-hyperactive-impulsive-inattentive behavior (AHII; n = 154) were subdivided into those with (n = 38) and without (n = 116) adaptive disability (+AD/–AD) defined as a discrepancy between expected versus actual adaptive functioning. They were compared to each other and a control group of 47 normal children. Both AHII groups were more likely to have attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder, and conduct disorder than control children; more symptoms of general psychopathology; greater social skills deficits; more parental problems; and lower levels of academic achievement skills. Compared to AHII – AD children, AHII + AD children had (1) more conduct disorder; (2) greater inattention and aggression symptoms; (3) more social problems, less academic competence, and poorer self-control at school; (4) more severe and pervasive behavior problems across multiple home and school settings; and (5) parents with poorer child management practices. Thus, adaptive disability has utility as a marker for more severe and pervasive impairments in AHII children.     

Cultural Influences in the Aetiological Beliefs of Saudi Arabian Primary Care Patients About Their Symptoms: The Association of Religious and Psychological Beliefs

Objective To develop a self-report questionnaire to measure the beliefs of Arabic primary care patients about the causes of their physical symptoms; to use this to quantify the beliefs of patients consulting their general practitioners (GPs) in Saudi Arabia; and to test whether patients with psychological problems differ from others in their beliefs, particularly religious and supernatural beliefs. Methods Consecutive patients (N = 224) completed a specially developed aetiological beliefs’ questionnaire. Patients were divided into two groups (cases and non-cases of emotional disorder) according to the GHQ-12. Results Religious and supernatural aspects of culture colour patients’ symptom beliefs: that their symptoms were a test or punishment from Allah’ was the most common belief. Even in non-cases, around half the patients also endorsed nerves and stress as a cause of their physical symptoms. Cases were more likely than non-cases to endorse items related to both religious and psychological factors. Conclusion There is no support for the view that Saudi Arabian patients explain symptoms supernaturally as a way of denying psychological factors. GPs and health professionals in Saudi primary care need to understand what patients believe to be the cause of their problems and to appreciate that religious and psychological beliefs are both very common. GPs should address psychological beliefs and concerns even with those patients who present physical symptoms.     

Assessing Psychosocial Impairment in the Pediatric Emergency Department: Child/Caregiver Concordance

The objective of this study was to examine the level of agreement between child- and caregiver-reports of the child’s psychosocial problems presenting to a Pediatric Emergency Department (PED) using a validated screening tool. This was an anonymous, prospective, cross-sectional, multi-informant (child and caregiver) study assessing cognitive, emotional, and behavioral problems and physical complaints in children and adolescents presenting to a PED. Three-hundred and fifty-eight children and adolescents (8–18 years old) and their caregivers participated. Children completed the Youth-Pediatric Symptom Checklist (PSC-Y), while their caregivers completed the Pediatric Symptom Checklist–35 (PSC-35) to measure psychosocial impairment. The child’s physical complaints (e.g., chief complaint, chronicity, other medical problems, medications) and demographic information were assessed using an investigator-developed patient background questionnaire completed by the caregivers. Physical complaints (e.g., chief complaint, chronicity, other medical problems, medications) were assessed using an investigator-developed patient background questionnaire. Agreement between child- and caregiver- reports was analyzed using Cohen’s kappa coefficient. Differences between child and caregiver-reported scores were determined by t-tests. Poor to moderate agreement was found between child- and caregiver-reports of attention problems (κ = .355), externalizing problems (κ = .340), internalizing problems (κ = .065), and total PSC score (κ = .410). Both children and caregivers should complete the psychosocial screener to maximize the accuracy of assessment and the identification of impairment.     

The Effect of Secrecy and Social Support on Behavioral Problems in Children of Incarcerated Women

We investigated the effects of secrecy regarding their mothers' incarceration and social support on behavioral problems in a group of 116 children (aged 6–13 years, M = 9.00). Children with low levels of social support had more externalizing and internalizing problems, and children who had experienced more life stressors reported more internalizing problems. Significant interactions indicated that both externalizing and internalizing problem scores were higher for children whose social support was poor and secrecy scores were low. Our findings suggest that for children already suffering from little or no support from key people, having little or no constraints regarding talking about mothers' incarceration places children at risk for developing behavioral problems. We discuss explanations for the findings and implications for caregivers.     

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.     

A hermeneutic study of integrating psychotherapist competence in postnatal Child Health Care: Parents’ perspectives

A child's emotional and social development depends on the parents’ provision of optimal support. Many parents with perinatal distress experience difficulties in mastering parenthood and seek help from professionals within primary healthcare. A clinical project was launched in Stockholm, where psychodynamic psychotherapists provided short-term consultations at Child Health Centers. This study qualitatively explored parents’ experiences of perinatal distress and of receiving help by nurses and therapists in the project. Thirteen parents were interviewed, and their responses were analyzed with a hermeneutical method. Three main themes crystallized; accessibility of psychological help and detection of emotional problems; experiences of therapy at the Child Health Center; and the therapists’ technique. Parents were also clustered into three so-called ideal types: the insecure; parents in crisis; and parents with lifelong psychological problems. Parents experienced obstacles in accessing psychological care within primary healthcare. Psychotherapists with a holistic family perspective and who managed to oscillate between insight-promoting and supportive interventions were especially appreciated. Patient categories who benefitted from insight promotion and support, respectively, were identified.     

Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease caused by the degeneration of motor neurons. The burden for ALS caregivers is quite high. There are still few studies that have investigated the emotional impact of ALS care. We conducted a cross-sectional study among 40 ALS caregivers, assessing general worries, burden of care, depression, anxiety, perception of social support, and patients' severity of disease. Caregiver burden, depression, and anxiety were positively related with each other, and all these variables had a negative relation with social support. Patient's loss of physical functions was positively related with caregiver burden, anxiety, and somatic expression of depression. Caregivers expressed worries for their own health conditions. Given these results, we consider the hypothesis of an emotional-somatic impact of ALS care. The implications and limitations are discussed.     

The reliability and validity of the Turkish version of the brief infant–toddler social emotional assessment (BITSEA)

In this study the reliability and validity of the Turkish version of the brief infant–toddler social emotional assessment (BITSEA) were investigated in a community sample. The sample consisted of 462 children (mean age: 24.60 ± 7.93 [12–42] months) who had applied to Turkish health centers for immunization. Both parents completed the BITSEA; mothers completed the child behavior checklist 2/3 (CBCL). Internal consistencies of the BITSEA–problem (P) and competence (C) scales were good to excellent (Cronbach's α = 0.82 and 0.72, respectively). Interrater reliability between parents and test–retest reliability were good. BITSEA/P scores were significantly correlated with CBCL internalizing, externalizing and total problem scores (p < 0.001). Maternal BITSEA/P cutpoint scores revealed that 30.6% of male toddlers and 28.6% of females were in the subclinical range and 13.1% of males and 17.6% of females were in clinical range. Results reveal that the Turkish version of BITSEA is a reliable, valid and simply applicable instrument for screening social, emotional and behavioral problems among toddlers. Clinical validation of the BITSEA/C and BITSEA/P is warranted.     

Concordance Between Mothers' and Children's Reports of Somatic and Emotional Symptoms in Patients with Recurrent Abdominal Pain or Emotional Disorders

Mother–child concordance regarding children's somatic and emotional symptoms was assessed in children with recurrent abdominal pain (n = 88), emotional disorders (n = 51), and well children (n = 56). Children between 6 and 18 years of age and their mothers completed questionnaires assessing the children's somatic symptoms, functional disability, and depression. Mothers of children with recurrent abdominal pain reported more child somatic and depressive symptoms than did their children, and mothers of children with emotional disorders reported more child depressive symptoms than did their children. Higher levels of maternal distress were associated with greater mother-child discordance in the direction of mothers reporting more child symptoms than did their children. No significant child age or sex differences were found in concordance patterns.     

Caring for children with an intellectual disability: An exploratory qualitative study

This study explored family caregiver experiences of children with an intellectual disability in a rural South African day-care centre. The family caregivers (N = 15; mothers = 60%; age range = 35 to 68 years) completed in-depth interviews regarding their experiences providing care to children with intellectual disability. Data collection and analysis was done using phenomenological methods. The following themes emerged to characterise the family caregiver experiences: deeper understanding of intellectual disability; disability disclosure conditions; and social and economic support needs. Family support emerged as an important factor in the relationship between caregivers’ psychological stress and well-being.     

Family-centered intensive case management: A step toward understanding individualized care

New York State's initial attempt at individualizing services occurred within the context of an experiment. We randomly assigned children 5–12 years old who were referred for out-of-home placement in treatment foster care to either treatment foster care, Family-Based Treatment (n=15), or to Family-Centered Intensive Case Management (FCICM) (n=27). FCICM used teams of case managers and parent advocates to provide in-home services. Flexible service dollars, respite care, and behavior management skills training were available to assist teams in individualizing care. Preliminary outcomes indicate that children in FCICM are doing as well or better than children assigned to FBT in their functioning and symptom reduction. Parents of children in FCICM have made gains, although not at a statistically significant level, in behavior management skills and family strengths that allow them to provide care for their children at home.     

Prevention and treatment of juvenile problem behavior: A proposal for a socio-ecological approach

This study proposes a socio-ecological model representing the relation between emotional and behavioral problems of children and risk factors in the family, at school and in the peer group. An empirical examination of a sample of 150 children at risk for delinquency shows that the model explains 30–40% of the variance in problem behavior. The model is used to provide possibilities for prevention and intervention.     

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.     

Parents of Adults with Intellectual and Developmental Disabilities (IDD) and Compound Caregiving Responsibilities

In some cases, parents caring for an adult child with an intellectual and/or developmental disability (IDD) must balance this with caregiving for another family member. This dual responsibility, referred to as “compound caregiving”, may contribute to increased feelings of distress, or change their perceived ability to care for their child. The current study examined how compound caregivers differ from other parents of adults with IDD, and whether compound caregiving is significantly associated with family distress. Data was available for 199 parents aged 38 to 91 years who were seeking adult services for their son or daughter with IDD. Parents completed a mailed questionnaire and telephone interview in which they indicated compound caregiver responsibilities. Parents identified as compound caregivers were then compared to those who were not in terms of family characteristics, as well as parental perceptions of burden and mastery, and family distress as measured by the Revised Caregiver Appraisal Scale and the Brief Family Distress Scale, respectively. Nearly half of the parents reported being compound caregivers. The demographic profile of these parents was no different from that of the other parents but their children were slightly younger. Compound caregiving was significantly associated with parental perceptions of burden and mastery and family distress. Demands outside of caring for an adult child with IDD can negatively influence family functioning and must be included as part of caregiving assessments.