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Help for the caring: the stress, the value, and the perceptions of informal caregivers.

Article Excerpt
Abstract

This study consisted of reviewing the empirical literature concerning the effects of being an informal caregiver and the value of informal caregivers. It also examined the perceptions of healthiness and personal control of health, intellectual achievements, self identity, friendships, and careers of three groups of adults: caregivers of children with Juvenile Batten's (JB) Disease, caregivers of individuals with multiple chronic conditions, and adults who are not informal caregivers. The results indicate that informal caregivers do rate their level of personal health lower than adults who are not informal caregivers. Also, caregivers of children with JB Disease believe that other people (e.g., family members, friends, employers, health-care professionals) have more control over the health of the caregivers than non-caregiver adults. Furthermore, adults who believe they have more personal control over different aspects of their lives believe their health is better than adults who do not believe they have as much personal control. The results indicate the need for psychosocial interventions to teach stress-management activities in order to improve their perceptions of personal control.

Keywords: informal caregivers, perceptions of personal control, self-efficacy, clinical intervention.

Introduction

As a parent watched her young child struggle with the slow degenerative process of Juvenile Battens Disease, she stated that the worst part was her total loss of control over what was happening to her entire family.

As a woman cares for a spouse who has been dealing with multiple physical and psychological chronic conditions for more than five years, she indicates that she is feeling overwhelmed and exhausted. Her biggest fear is losing her job and the family's insurance coverage because of her inability to cope with the demands of both her job and her loved one.

A new mother of twins is experiencing postpartum depression with psychotic features, and her family provides her and her newborns with constant protection (they must be with her constantly to prevent the possibility of suicide and/or homicide) because this mother has exhausted her benefits for psychiatric hospitalization.

All these caregivers reported feelings of tremendous isolation and a loss of control over their lives as they tried to address the needs of their care recipients.

Literature Review

Millions of individuals (22% of the U.S. population) are living with serious, chronic health conditions (Partnerships for Solutions, 2002). Many of these individuals require some level of care from formal or informal caregivers. Feinberg, Wolkwitz, and Goldstein (2006) indicate that there are approximately 44 million adult Americans who are providing informal care to people with chronic conditions. An "informal caregiver" is an unpaid family member, partner, or friend who provides on-going care for a person who is challenged by physical and/or psychological conditions. Approximately one third of informal caregivers are spending "24 hours a day in caregiving ... managing psychological and physical issues" of their loved ones (Flaskerud, Carter, & Lee, 2000, p. 125). Although Spillman and Black (2005) report that 66% of older people with disabilities depend on family members and friends for their care (as cited in Flaskerud et al.), most people who are dealing with serious chronic conditions are not elderly (Hoffman, Rice, & Sung, 1996). As insurance coverage continues to severely limit access to hospital and residential services, there is an increasing need for informal caregivers.

Mental-health and medical-health professionals have expressed their concerns about the coping skills of caregivers as these individuals experience many stresses. Listing a few of those stressors provides a sense of the pressure and anxiety caregivers face:

* Seeing a loved one decline

* Ongoing financial issues

* Time limitations that prohibit participation in other activities

Untrained caregivers attend to many time-intensive and physically demanding tasks. A partial list gives...