Group Therapy with Individuals and Families Coping with Illness or Disability in Israel

This paper illustrates a group intervention with individuals and family caregivers coping with illness/disability, and focuses on the relationship between the process of group development and the process of coping with the illness/disability. People experiencing illness/disability cope with a great deal of pressure and stress that stem from the illness's biopsychosocial demands. A group can provide encouragement and support and reduce helplessness, isolation, and despair through cooperation and use of mutual resources. The design of the intervention was based on our clinical experience with numerous groups for ill/disabled individuals or their family. The process is described and analyzed using examples from three documented groups, and is presented in terms of four variables: group process, group atmosphere, group content, and group intervention.     

A Knock on the Door

In this paper, the author, who is a single mother of a young man with mental illness, describes her son’s first psychotic break. By melding poetry, prose, dream journal entries, and medical case notes, she explores the embodied experience of witnessing her son’s decompensation. In sharing her story, she reminds other caregivers of people with mental illness that they are not alone. She makes sense of her experience with findings from the literature about posttraumatic stress among family caregivers of people with chronic illness and explores the implications for caregivers, practitioners, and scholars of mental illness, trauma, and loss.     

Illness Perception and Well-Being Among Persons with Multiple Sclerosis and Their Caregivers

This study jointly examined illness beliefs held by persons with multiple sclerosis (PwMS) and caregivers in relation to well-being. A group of 68 PwMS and their caregivers completed the Revised Illness Perception Questionnaire, Psychological Well-being Scales, Satisfaction with Life Scale and Positive Affect and Negative Affect Schedule. Findings revealed that PwMS’ well-being was primarily predicted by their own illness beliefs, and that also caregivers’ well-being was primarily predicted by their own beliefs. Across the two groups, well-being was positively associated with their belief that they understood the disease, and inversely associated with their representations of negative emotions. In addition, among PwMS, well-being was inversely associated with the number of symptoms they specifically attributed to their illness, while among caregivers, well-being was positively associated with beliefs that treatment could control the disease. Based on the study findings, psychoeducational and cognitive-behavioral strategies are suggested to promote well-being among PwMS and caregivers.     

Effects of Illness Representation,Perceived Quality of Information Provided by the Health-Care Professional,and Perceived Social Support on Depressive Symptoms of the Caregivers of Children with Leukemia

The present study examined the effects of illness representation, perceived quality of information provided by the health-care professional, and perceived social support on the depressive symptoms of the caregivers of children with leukemia. The sample was composed of 71 caregivers of children with leukemia living in Turkey. The obtained data were analyzed by path analysis. The results show that caregivers of children with leukemia experience higher levels of depressive symptoms when they have negative illness representation and lower levels of depressive symptoms when they perceive higher levels of social support. Moreover, they perceive higher social support when they perceive high quality of information provided by health-care professionals. It can be suggested that intervention programs which aim to increase caregivers’ social support and change their illness representation in a positive way would be helpful for the caregivers showing depressive symptoms.     

Stigma,Expressed Emotion,and Quality of Life in Caregivers of Individuals with Dementia

Expressed emotion (EE) is a measure of a caregiver's critical and emotionally overinvolved (EOI; e.g., intrusive, self‐sacrificing) attitudes and behaviors toward a person with a mental illness. Mounting evidence indicates that high levels of these critical and EOI attitudes and behaviors (collectively termed high EE) in family members are associated with a poorer course of illness for people with a range of disorders, including dementia (Nomura et al., 2005). However, less is known about factors that might trigger high EE and how high EE might impact dementia caregivers’ own mental health. In this study we propose that caregivers who perceive stigma from their relative's illness may be more likely to be critical or intrusive (high EOI) toward their relative in an attempt to control symptomatic behaviors. We further hypothesized that high EE would partially mediate the link between stigma and quality of life (QoL) as there is some evidence that high EE is associated with poorer mental health in caregivers themselves (Safavi et al., 2015). In line with study hypotheses and using a sample of 106 dementia caregivers, we found that greater caregiver stigma was associated with both high EE (for criticism and EOI) and with poorer QoL. Mediational analyses further confirmed that high EE accounts for much of the association between stigma and poorer QoL. Study results suggest that addressing caregiver stigma in therapy could reduce levels of high EE and indirectly therefore improve caregiver QoL. Intervening directly to reduce high EE could also improve caregiver QoL.     

Posttraumatic Growth and Subjective Well-Being among Caregivers of Chronic Patients: A Preliminary Study

This preliminary study focused on positive phenomena among Israeli family caregivers (spouse, adult child, or parent) of patients with chronic illness hospitalized in a medical rehabilitation hospital. We investigated these caregivers’ posttraumatic growth (PTG) and subjective well-being (positive and negative emotions, life satisfaction), and their associations with the demographic and illness characteristics of the caregivers and patients, respectively. Participants included 74 adult primary caregivers: 28 were the patient’s spouse; 21 were the patient’s child; and 25 were the patient’s parent. Caregivers completed four self-report questionnaires. No significant association emerged between caregivers’ PTG and their negative affect or life satisfaction. Nevertheless, caregivers’ positive affect correlated with their PTG and also predicted it. Moreover, different patterns emerged for the caregiver subgroups (spouse, adult child, or parent): Patients’ children reported lower negative affect and greater life satisfaction than patients’ parents or spouses. Various explanations were discussed, alongside implications for giving recognition and assistance from the medical system to patients’ caregivers.     

Ethical Challenges and Legal Issues for Mental Health Professionals Working With Family Caregivers of Individuals With Serious Mental Illness

Mental health professionals frequently work with family caregivers in the provision of psychotherapy services to individuals with serious mental illness. To address the need for ethical guidelines for working with family caregivers, an analysis of relevant ethical and legal issues is provided within the context of dynamic mental health care and legal systems. When working with family caregivers, practitioners utilize the American Psychological Association’s Ethics Code (2010), legal codes, and a complex decision-making plan; identify and communicate ethical obligations to family caregivers; consider the unmet needs of this population; avoid harm resulting from multiple relationships; and balance ethical duties of beneficence and respect for autonomy.     

‘Journeys’ in the Life-Writing of Adult-Child Dementia Caregivers

This article explores how Alzheimer’s disease caregivers struggle under the impact of a parent’s memory loss on their own personality. In particular, it analyses how caregivers perceive and, thus, present their experiences of the ever intensifying caregiving activity in terms of a ‘journey’. In doing so, this work takes into account both the patient’s continuing bodily as well as cognitive decline and its intricately linked influence on the caregiver’s physical and emotional stability. Equally, this study investigates how caregivers portray memory loss, and how their portrayal fits into our conceptualisation of illness narratives and the culture of autobiographical writing.     

The Role of the Family in the Course and Treatment of Bipolar Disorder

ABSTRACT— Bipolar disorder is a highly recurrent and debilitating illness. Research has implicated the role of psychosocial stressors, including high expressed-emotion (EE) attitudes among family members, in the relapse–remission course of the disorder. This article explores the developmental pathways by which EE attitudes originate and predict relapses of bipolar disorder. Levels of EE are correlated with the illness attributions of caregivers and bidirectional patterns of interaction between caregivers and patients during the postepisode period. Although the primary treatments for bipolar disorder are pharmacological, adjunctive psychosocial interventions have additive effects in relapse prevention. Randomized controlled trials demonstrate that the combination of family-focused therapy (FFT) and pharmacotherapy delays relapses and reduces symptom severity among patients followed over the course of 1 to 2 years. The effectiveness of FFT in delaying recurrences among adolescents with bipolar disorder and in delaying the initial onset of the illness among at-risk children is currently being investigated.     

The effects of mortality reminders on posttraumatic growth and finding benefits among patients with life-threatening illness and their caregivers

Individuals confronted with a life-threatening illness often report posttraumatic growth (PTG) or finding benefits in disease. These positive evaluations of personal strength, perceptions of improved personal relations and new possibilities may represent a defensive response (cf Janus-face model). Three studies investigated the effects of mortality reminders on reports of PTG or benefit findings among people living with life-threatening illness or their caregivers. 80 people living with HIV (Study 1), 164 breast cancer survivors (Study 2) and 50 family caregivers for a patient with Huntington Disease (Study 3) were randomly assigned to the experimental (mortality reminders) or control conditions. Across three studies, those exposed to mortality reminders reported lower PTG or benefit finding, compared to the controls. These effects were moderated by time elapsed since diagnosis: mortality reminders led to lower PTG/benefit finding among those who received the diagnosis more recently. The results provide an insight into the defensive character of PTG/finding benefits in illness and changes in the function of these beliefs over time elapsing since diagnosis.     

The effects of mortality reminders on posttraumatic growth and finding benefits among patients with life-threatening illness and their caregivers

Individuals confronted with a life-threatening illness often report posttraumatic growth (PTG) or finding benefits in disease. These positive evaluations of personal strength, perceptions of improved personal relations and new possibilities may represent a defensive response (cf Janus-face model). Three studies investigated the effects of mortality reminders on reports of PTG or benefit findings among people living with life-threatening illness or their caregivers. 80 people living with HIV (study 1), 164 breast cancer survivors (study 2) and 50 family caregivers for a patient with huntington disease (study 3) were randomly assigned to the experimental (mortality reminders) or control conditions. Across three studies, those exposed to mortality reminders reported lower PTG or benefit finding, compared to the controls. These effects were moderated by time elapsed since diagnosis: mortality reminders led to lower PTG/benefit finding among those who received the diagnosis more recently. The results provide an insight into the defensive character of PTG/finding benefits in illness and changes in the function of these beliefs over time elapsing since diagnosis.     

Spiritual Inquiry and Well-Being in Life-Limiting Illness

ABSTRACT

Introduction: End of life, as a developmental phase, is accompanied by inner resources as well as losses. Spirituality is a potential inner resource for integrating illness that often occurs during this time. Despite the increase in spirituality research, how spiritual perspectives are used in life-limiting illness remains under-investigated. Better knowledge about this process may be useful for health care providers, family caregivers and patients themselves to enhance well-being at end of life. This study describes the process of how patients and family care-givers use their spiritual resources to facilitate well-being at the end of life.

Method: A qualitative study was designed, based upon the grounded theory method, that entails theoretical sampling of concepts (not sampling of people as in quantitative designs), and the analytic technique of constant comparison of the data until conceptual categories are saturated with supporting data and a theory can be identified. The sample consisted of 12 respondents: 6 dyads of elderly patients with a life-limiting illness and family caregivers. Interviews occurred over a 2-year period.

Results: Data analysis generated a theory about a process called “transcending life-limiting illness,” which derived from two related themes: spiritual inquiry and end-of-life dimensions.

Conclusion: The results expand existing knowledge about how people, either as patients or as family caregivers of persons facing end of life, live with life-limiting illness. The process of transcending life-limiting illness goes beyond merely coping to tap resources for well-being. This resource is expressed through an ongoing dialectic process of spiritual inquiry about life and death as supported by six critical life dimensions.     

Changes over time in head and neck cancer patients’ and caregivers’ illness perceptions and relationships with quality of life

Objective: This study investigated changes in illness perceptions from diagnosis to six months later in patients with head and neck cancer (HNC) and their caregivers. The study also examined whether discrepancy in patient and caregiver perceptions at diagnosis predicted patient health-related quality of life (HRQL) at six months.

Design: Forty-two patient–caregiver dyads completed the Brief Illness Perception Questionnaire (Brief IPQ) at diagnosis and again six months later. Patients also completed a HRQL questionnaire at both time points. Analyses were performed using the Actor–Partner Interdependence Model.

Main Outcome Measure: Total patient HRQL assessed by the Functional Assessment of Cancer Therapy (FACT-H&N).

Results: Perceptions of emotional impact and illness concern reduced over time in patients and caregivers. Perceptions of treatment control and identity increased in caregivers only. After controlling for the effects of baseline HRQL, and the individual contribution of patient and caregiver illness perceptions, greater discrepancy in perceptions of timeline, personal control, and illness identity among dyads at diagnosis predicted lower patient HRQL at six-month follow-up.

Conclusion: Patients’ and their caregivers’ perceptions of HNC are dynamic over time. Greater discrepancy between patients’ and caregivers’ illness perceptions at diagnosis predict poorer subsequent patient HRQL.     

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.     

A Comparison of Mood and Quality of Life Among People with Progressive Neurological Illnesses and Their Caregivers

The current study was designed to investigate differences in mood and a range of QOL domains among 423 patients and 335 caregivers of people with motor neurone disease (MND), Huntington’s disease (HD), Parkinson’s, and multiple sclerosis (MS). Patients and caregivers completed an anonymous questionnaire that evaluated their mood (anxiety, depression, fatigue, confusion) and QOL (physical, psychological, social, environment). The results demonstrated that caregivers of people with MND and HD experienced most problems with their mood and QOL compared to caregivers of people in the other illness groups. There were few differences in mood or QOL between patients and caregivers. Patients generally showed greater confusion, physical impairment, and psychological maladjustment. The findings suggest that educational and intervention programs need to be developed to help both patients and their caregivers to adjust and cope with these illnesses, particularly caregivers of people with MND and HD.     

Race-Related Differences in the Experiences of Family Members of Persons with Mental Illness Participating in the NAMI Family to Family Education Program

Families play an important role in the lives of individuals with mental illness. Coping with the strain of shifting roles and multiple challenges of caregiving can have a huge impact. Limited information exists regarding race-related differences in families’ caregiving experiences, their abilities to cope with the mental illness of a loved one, or their interactions with mental health service systems. This study examined race-related differences in the experiences of adults seeking to participate in the National Alliance on Mental Illness Family-to-Family Education Program due to mental illness of a loved one. Participants were 293 White and 107 African American family members who completed measures of problem- and emotion-focused coping, knowledge about mental illness, subjective illness burden, psychological distress, and family functioning. Multiple regression analyses were used to determine race-related differences. African American caregivers reported higher levels of negative caregiving experiences, less knowledge of mental illness, and higher levels of both problem-solving coping and emotion-focused coping, than White caregivers. Mental health programs serving African American families should consider targeting specific strategies to address caregiving challenges, support their use of existing coping mechanisms and support networks, and increase their knowledge of mental illness.     

Spiritual Wellness for Clients With HIV/AIDS: Review of Counseling Issues

The epidemic of HIV/AIDS has resulted in an increasing population of individuals in need of counseling services: persons living with AIDS, as well as family, friends, and caregivers. The relationship between HIV/AIDS clients' counseling and spiritual issues is demonstrated by a review of salient literature. Three broad themes are used: terminal illness issues such as post-death existence and existential meaning of life, religious disenfranchisement from society or families of origin, and multicultural spiritual and religious issues. Practical recommendations for counselors and research implications are included.     

Caregivers's Stress Secondary to Raising Young Children with HIV Infection: A Preliminary Investigation

This study examined the impact of caring for a child with HIV infection on biological mothers (also infected with HIV), familial caregivers, and foster mothers. Levels of reported parenting stress, emotional functioning, the impact of the child's illness, and coping strategies utilized were compared. Participants were 35 female caregivers of young children (birth to 5 years) with HIV infection. Demographic variables reflected group differences: biological mothers were younger, foster mothers had greater monthly income, and children who were living with relatives were older. Group differences were noted with regards to parent related stress, anxiety, and depression with foster mothers reporting lower levels. The types of coping strategies utilized were generally similar across groups. Results suggest that young, biological caregivers of children with HIV infection may benefit from careful assessment with regard to their need for psychological intervention.     

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.     

Chronic Illness and Child Behavior Problems in Low-SES Families: The Mediation of Caregivers’ Mental Health

Journal of Child and Family Studies - Childhood chronic illness is associated with deleterious effects on caregivers’ mental health and children’s socio-emotional development. This...