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.     

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。     

Dialectical Behavior Therapy Skills for Families of Individuals With Behavioral Disorders: Initial Feasibility and Outcomes

Family members of individuals with behavioral disorders are a valuable source of logistical and emotional support for patients. Family members may take on tremendous financial and/or psychological responsibility to care for their loved ones, which can result in poor psychological outcomes for the family and, in turn, impede the recovery of the patient. Dialectical Behavior Therapy (DBT) skills training is an effective treatment that has been utilized with numerous populations, including family members of individuals with behavioral problems, and has shown efficacy in improving various interpersonal outcomes; however, no study has examined feasibility and outcomes of delivering all four unabridged DBT skills modules to this population. Twenty participants attended weekly DBT skills classes for 6 months, where they acquired skills in mindfulness, emotion regulation, interpersonal effectiveness, and distress tolerance. There were significant pre-post improvements for emotion dysregulation, stress reactivity, and various interpersonal outcomes; there were no significant changes in depression or anxiety. These results suggest that DBT skills may be effective at improving broad clinical domains in a sample of family members of individuals with behavioral problems. This research is the first step in demonstrating that DBT skills might benefit family members of patients with heterogeneous mental health problems and, therefore, fits in to the field’s growing interest in cost-effective transdiagnostic interventions.     

Evaluation of a Sesame Street Multimedia Intervention for Families Transitioning Out of the Military

Although transitioning out of the military can be stressful for everyone in the family, the children’s experience has received minimal attention in both clinical lore and research. This study is an evaluation of Sesame Workshop’s multimedia program for families who are transitioning out of the military into civilian life; the program is aimed at improving parents’ confidence and skills in assisting their children with the transition, and at improving young children’s transition-related adjustment. Via a randomized controlled trial design, we evaluated the utilization, acceptability, and impact of this free, online program with 200 military caregivers. Caregivers who received the Sesame program reported increased self-efficacy in helping their child cope with the transition (e.g., making new friends, talking with their child about leaving the military) compared to those assigned to the control condition. Further, caregivers in the intervention condition reported fewer overall child emotional and behavioral problems and a significant reduction in levels of hyperactivity/inattention in their children. Further, the primarily online modality of the Sesame program yielded high caregiver satisfaction and utilization; this approach may warrant further research as an effective means of reaching busy military families.     

Parental Experiences of Having a Child with Obsessive-Compulsive Disorder: Associations with Clinical Characteristics and Caregiver Adjustment

We examined parental experience of having a child with obsessive-compulsive disorder (OCD) in 62 parent–child dyads. Youth with a primary diagnosis of OCD and their parent(s) were administered the CY-BOCS jointly by a trained clinician. Parents completed several measures about their child’s OCD-related impairment and accommodation, emotional and behavioral functioning, parental distress, caregiver stress, and parental experiences of having a child with OCD. Results indicated that parents of children with OCD are considerably distressed about their child’s condition. As expected, negative parental experiences (e.g., anxiety about child’s condition, uncertainty about their future) were directly related to OCD symptom severity and impairment, as well as child internalizing and externalizing problems, family accommodation of symptoms, and caregiver strain. The presence of emotional resources was negatively related to most outcomes, although some of these relationships did not achieve statistical significance. The presence of internalizing symptoms mediated the relationship between parental experiences and parental distress. Given these findings, addressing parental experiences as part of a family based cognitive-behavioral treatment program for pediatric OCD may help reduce parental distress and improve patient prognosis.     

Kinship Support and Academic Efficacy Among College Students: A Cross-Sectional Examination

The study examined whether relationships with extended kin were related to higher levels of mental health and academic functioning among college students. Specifically, the study tested whether perceived emotional support from extended (non-nuclear) family was related to self-esteem, psychological distress, and academic efficacy and dedication above and beyond relationships with one’s primary caregivers, and whether these associations varied by class year in college. The sample consisted of 530 students (average age = 20.82), at a public, four-year university. The results revealed that freshmen and seniors who reported high levels of positive relationships with their extended kin also reported higher levels of academic-efficacy and dedication, as well as lower levels of psychological distress. However, the relation between kin emotional support and these outcomes were not significant for sophomores and juniors. There was also a significant association between kinship support and self-esteem for participants in all four class levels. The study underscores the need to examine extended social support systems among college students, above and beyond those maintained with primary caregivers, as well as the dynamic nature of family support during young adulthood.     

FOCUS on the Family Caregiver: A Problem‐Solving Training Intervention

Problem‐solving interventions have documented effectiveness in treating distress among a variety of clientele. The authors discuss the application of training in social problem solving with family caregivers of persons who have incurred severe physical disabilities. Specifically, the authors outline training procedures (i.e., Project FOCUS) that enable counselors to assist family caregivers in developing effective problem‐solving skills that may translate to increased wellness for each caregiver, and by extension, their care recipients.     

An Evaluation of the NAMI Basics Program

This brief report describes results from an evaluation of NAMI Basics, a peer-delivered family education program for family caregivers of children and adolescents with mental illness. Over six classes, family members are given information (e.g. education about mental illness and treatments), skills training (e.g. family communication skills) and advocacy support. We report data from 36 caregivers who completed pre and posttest instruments measuring self-care, empowerment, and family problem-solving and communication skills. Results showed significant improvements in self-care, empowerment, and “incendiary” family communication after participation in the program. Results suggest that NAMI Basics may improve both parental functioning and familial processes. Implications and future directions are discussed.     

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.     

Impact of parentification on long-term outcomes among children of parents with HIV/AIDS

Stein, Riedel, and Rotheram-Borus reported in 1999 that early parentification predicted maladaptive outcomes of more emotional distress, substance use, and conduct problems among adolescents of parents with HIV/AIDS (PWH) 6 months later. The current study assessed the adolescents ( N =213) 6 years later to assess whether there were continuing negative effects of parentification, or, rather, if there were some positive outcomes. Although the premature assumption of parental roles had negative effects in the short term, we hypothesized that such skills may have been adaptive in the long run, especially in the case of adolescents with major stressors in their lives, including dying or ill parents, impoverished environments, and family instability. We found that early parentification predicted better adaptive coping skills and less alcohol and tobacco use 6 years later. In addition, early parentification was not associated with later emotional distress and dysfunctional parenting attitudes, including expecting role reversals in their own children.     

Greater emotional arousal predicts poorer long-term memory of communication skills in couples

Many studies have examined the importance of learning skills in behaviorally based couple interventions but none have examined predictors of long-term memory for skills. Associations between emotional arousal and long-term recall of communication skills delivered to couples during a behaviorally based relationship distress prevention program were examined in a sample of 49 German couples. Fundamental frequency (f(0)), a vocal measure of encoded emotional arousal, was measured during pre-treatment couple conflict. Higher levels of f(0) were linked to fewer skills remembered 11 years after completing the program, and women remembered more skills than men. Implications of results for behaviorally based couple interventions are discussed.     

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.     

The impact of an emotional self-management skills course on psychosocial functioning and autonomic recovery to stress in middle school children

Unmanaged emotional reactions to stress not only lead to behavior problems in young people but also create physiological conditions that inhibit learning and potentially increase the risk of disease later in life. For these reasons, the integration of emotional self-management skills training programs has become an increased priority in some schools. In this study, middle school students enrolled in a course in emotional competence skills learned techniques designed to intercept stressful responses during emotionally challenging situations. Behavioral outcomes were assessed using the Achievement Inventory Measure and autonomic function was measured by heart rate variability (HRV) analysis during and after a stressful interview. Following the program, students exhibited significant improvements in areas including stress and anger management, risky behavior, work management and focus, and relationships with family, peers and teachers. These improvements were sustained over the following six months. Students using the skills taught in the course to recover from acute emotional stress were also able to positively modulate their physiological stress responses. As compared to a control group, trained students demonstrated significantly increased HRV and more rhythmic, sine wave-like heart rhythm patterns during recovery. This response pattern reflects increased parasympathetic activity, heart rhythm coherence, and entrainment of other biological oscillatory systems to the primary heart rhythm frequency. Increased physiological coherence is associated with improved cognitive performance, emotional balance, mental clarity and health outcomes. These physiological shifts could promote the sustained psychological and behavioral improvements associated with the use of emotional management skills. It is suggested that learning emotional competence skills in childhood establishes healthier physiological response patterns which can benefit learning and long-term health. Results provide support for the integration in school curricula of courses designed to teach effective self-management skills to children.     

Emotional interactions and an ethics of care: Caring relations in families affected by HIV and AIDS

In the context of global processes of economic restructuring, the HIV and AIDS epidemic and socio-cultural constructions of care, many women and young people in low-income households have been drawn into caring roles within the family. Drawing on the literature on an ethics of care, emotional geographies and embodiment, this paper examines the emotional dynamics of the caring process in families affected by HIV and AIDS. Based on the perspectives of both ‘caregivers’ and ‘care-receivers’ from research undertaken in Namibia, Tanzania and the UK, we examine the everyday practices of care that women and young people are engaged in and explore how emotions are performed and managed in caring relationships. Our research suggests caregivers play a crucial role in providing emotional support and reassurance to people with HIV, which in turn often affects caregivers' emotional and physical wellbeing. Within environments where emotional expression is restricted and HIV is heavily stigmatised, caregivers and care-receivers seek to regulate their emotions in order to protect family members from the emotional impacts of a chronic, life-limiting illness. However, whilst caregiving and receiving may lead to close emotional connections and a high level of responsiveness, the intensity of intimate caring relationships, isolation and lack of access to adequate resources can cause tensions and contradictory feelings that may be difficult to manage. These conflicts can severely constrain carers' ability to provide the ‘good care’ that integrates the key ethical phases in Tronto's (1993) ideal of the caring process.     

The effects of perceived social support on quality of life in patients awaiting coronary artery bypass grafting and their partners: testing dyadic dynamics using the Actor-Partner Interdependence Model

Patients awaiting coronary artery bypass grafting (CABG) need support from their partners or family caregivers to manage their self care successfully and to maximise quality of life. Partners need social support to help overcome the stressful tasks of an unexpected caregiving role. It is not known whether the individual's perceived social support contributes to their own, as well as their partner's quality of life. The aims of this study were to assess differences in social support and quality of life in patients and partners awaiting CABG, and to examine whether patients' and partners' perceived social support predicted their own, as well as their partner's quality of life before CABG. This cross-sectional study recruited 84 dyads (patients 84% males, aged 64.5 years and partners 94% females, aged 61.05 years). Perceived social support was assessed using the Medical Outcomes Study Social Support survey, with sub-scales for informational/emotional support, affectionate support, tangible support and positive social interaction. Quality of life was assessed using the Short-Form 12 Health Survey. Dyadic data were analysed using the Actor-Partner Interdependence Model, with distinguishable dyad regression. Results revealed the patients' informational/emotional support exhibited an actor effect on their own mental health (? = 0.19, p = 0.001); indicating those with low informational/emotional support had poorer mental health. There was a partner effect of the patients' informational/emotional support on their partner's mental health (? = 0.14, p = 0.024), indicating the patients' informational/emotional support was associated with the partner's mental health. None of the other types of social support exhibited an actor effect or a partner effect on the patient's or the partner's mental or physical health. More research into the relationship between social support and mental health is needed to help inform the design of interventions that target the dyad.     

Primary caregiver emotional expressiveness relates to toddler emotion understanding

The present study examined the impact of emotional expressiveness in toddlers’ environments on their emotion understanding. Primary caregivers of 35 toddlers completed two surveys regarding the family’s emotional expressiveness and the primary caregiver’s expressivity. Toddlers participated in the Affective Knowledge Test to measure emotion understanding. Toddler emotion understanding related to primary caregiver expressivity, but not family expressiveness. Further, toddler emotion understanding related to primary caregiver Impulse Strength, but not Negative or Positive Emotionality. This suggests that primary caregivers with more impulsive emotional response tendencies may help their children to identify associations between emotional events and reactions.     

Chronic Sorrow in Caregiving Spouses of Patients with Alzheimer's Disease

The article focuses on the concept of chronic sorrow in a sample of individuals with Alzheimer's disease (AD) and their caregiving spouses. A study was designed to determine the long-term grief or chronic sorrow that develops in caregiving spouses and to increase knowledge of the nature of chronic sorrow. Utilizing the Burke Nursing Consortium for Research on Chronic Sorrow questionnaire and Lindgren's (1996) study as a prototype, the author discovered that repetitive feelings of sorrow and distress appear in caregivers when major disruptive changes occur in their lives due to the persistent demands caused by the illness. Continual coping skills are needed to keep caregivers from being mentally, emotionally, and physically depleted. The findings of this study are consistent with Lindgren's 1996 study of chronic sorrow in persons with Parkinson's disease.     

Aboriginal Children and Their Caregivers Living with Low Income: Outcomes from a Two-Generation Preschool Program

The development of preschool children of Aboriginal heritage is jeopardized by the inter-generational transmission of risk that has created, and continues to create, social disadvantage. Early intervention programs are intended to mitigate the impact of social disadvantage. Yet, evidence of the effectiveness of these programs for children of Aboriginal heritage is limited. The purpose of this study was to examine the effects of a two-generation, multi-cultural preschool program on 45 children of Aboriginal heritage and their caregivers. We used a single-group, pretest (program intake)/posttest (program exit) design with follow-up when the children were 7 years old. We used an observational measure of child receptive language (Peabody Picture Vocabulary Test–III) and caregiver-reported measures of child development (Nipissing District Developmental Screen), risk for child maltreatment (Adult-Adolescent Parenting Inventory; AAPI), parenting stress (Parenting Stress Index; PSI), self-esteem (Rosenberg Self-Esteem scale; RSE), and life skills (Community Life Skills scale; CLS). Using paired t-tests we found statistically significant increases in child receptive language scores between intake and exit, and repeated-measures ANOVA showed that these improvements were maintained up to age 7 years. For caregivers, Pearson’s correlations demonstrated that risk for child maltreatment, parenting stress, self-esteem, and life skills were stable over time. Results of this study suggest that children of Aboriginal heritage can benefit from participation in a two-generation, multi-cultural preschool program. Their caregivers may have received greater benefit if issues of intergenerational transmission of the negative influences of residential schools were addressed as part of programming.