Caregiving in the Illness Context

T. Revenson,K. Griva,A. Luszczynska,V. Morrison,E. Panagopoulou,N. Vilchinsky,M. Hagedoorn,Kenneth A. Loparo

• Publisher: Palgrave Pivot
• Year: 2016
• ISBN:
  9781137558985
• Topic: Psychology
• Subtopic: Personality in Psychology
• Index: Psychology

How does caregiving affect health and well-being and what resources help caregivers? This book provides a synthesis of psychological research on caregiver stress and brings attention to the personal, social and structural factors that affect caregivers' well-being and as well as recent behavioral interventions to enhance health.

1

What Is Caregiving and How Should We Study It?

Revenson, Tracey A., Konstadina Griva, Aleksandra Luszczynska, Val Morrison, Efharis Panagopoulou, Noa Vilchinsky, and Mariët Hagedoorn. Caregiving in the Illness Context. Basingstoke: Palgrave Macmillan, 2016. DOI: 10.1057/9781137558985.0004.

Informal (family) caregivers are the backbone of health and social care delivery in countries throughout the world, including developed countries. Providing informal care to ill family members or friends is a growing phenomenon as the population ages, the prevalence of chronic illness increases, and hospitalizations are shorter (National Alliance for Caregiving & AARP, 2015). The anticipated increase in number of caregivers and in the intensity of caregiving already have made caregiving a public health issue (Schulz & Patterson, 2004).

We begin this book with a few statistics: According to a 2012 survey of the Pew Research Center, 30% of the US population performs the role of family caregiver at some point in their lives (Fox & Brenner, 2012). The estimated prevalence of caring for an adult during the past year was 16.6%, or 39.8 million Americans (National Alliance for Caregiving & AARP, 2015). Although it is difficult to come up with a comparable statistic for Europe, in many European countries a slightly greater number report that they are caring for someone aged 65 and older (e.g., 19% in the Netherlands and 21% in Switzerland; Mestheneos, Triantafillou, and the EUROFAMCARE group, 2005). These numbers are only likely to increase in the next quarter century.

Caregiving takes its toll on the caregiver’s health. Almost equivocally, caregivers exhibit greater levels of self-reported stress and psychological distress than population norms (Li & Loke, 2013a) and often more than the recipients of care (e.g., Harden et al., 2013a). In a national survey of adult caregivers in the United States, nearly twice as many caregivers (17%) reported their health as fair or poor compared to the national average of 9% (National Alliance for Caregiving & AARP, 2015). Moreover, 35% of those doing the most intense caregiving reported fair or poor health and one-third said that caregiving had made their health worse (Evercare & National Alliance for Caregiving, 2006); 22% of caregivers felt that their health deteriorated as a result of caregiving (National Alliance for Caregiving & AARP, 2015).

Who is providing informal care?

A 2015 US survey (National Alliance for Caregiving & AARP, 2015) estimated that almost six in ten caregivers (56%) are currently caring for a loved one over age eighteen, while more than four in ten (44%) provided care in the past year but are no longer doing so. The vast majority of caregivers are caring for a relative (85%), while the remaining 15% care for a friend, neighbor, or other nonrelative. Nearly half (49%) are providing care for a parent or parent-in-law and another 12% are caring for a spouse. As the caregiver age rises, the likelihood of caring for a spouse also increases. Who provides the care differs greatly among European countries, partially based on government policies, on who is reporting caregiving, and how caregiving is defined. In European countries, between 55% and 80% of care for people aged 65 and older was provided by family members (Mestheneos, Triantafillou, and the EUROFAMCARE group, 2005). In Spain 12% of family caregivers were spouse caregivers, in the Netherlands 14%, in the UK 16%, in Poland and the Czech Republic, 21%, while in Finland 43% were spouse caregivers.

Time spent on caregiving

The amount of time providing care is related to burden and distress. It is part of what is considered “objective burden” and interrupts or replaces work, social, and family responsibilities. Informal caregivers spend an average of 24.4 hours per week providing care (National Alliance for Caregiving & AARP, 2015). Depending on the source, between 13% and 23% of family caregivers provide 40 hours of care a week or more (Evercare & National Alliance for Caregiving, 2006). Higher-hour caregivers (over 20 hours per week) are more likely to be female (62%; National Alliance for Caregiving & AARP, 2015) and to report loss of sleep and appetite, increased pain, and headaches. Caregiving is particularly time-intensive for those caring for a spouse or partner (an average of 45 hours a week). The average duration of caregiving is four years, but this, too, varies widely; 24% of caregivers have been providing care for five years or more and 12% have been providing care for ten years or more (National Alliance for Caregiving &AARP, 2015). A study of cancer caregivers found that the average time spent taking care of cancer patients was 8. 8 hours a day (van Ryn et al., 2011), or nearly one-third of every day.

Over 60% of caregivers perceive themselves to be the primary unpaid caregiver, meaning either that they are sole caregivers (47%) or that there are other unpaid caregivers, but they feel that they provide the majority of unpaid care (16%). The 37% of caregivers who labeled themselves are non-primary caregivers includes 12% who share caregiving equally with someone else and 25% who say another caregiver provides most of the unpaid care (National Alliance for Caregiving & AARP, 2015).

For a substantial proportion of family caregivers, caregiving isn’t their only “occupation”: Many are employed outside the home. A survey of over 17,000 employees at all levels of a large corporate employer found that 12% reported they provided care to an elder family member or friend (National Alliance for Caregiving, University of Pittsburgh Institute on Aging, & the MetLife Mature Market Institute, 2010). A Gallup poll (2011) of caregivers who worked at least 15 hours a week found that 72% provide care to a parent, often an elderly parent, and about 15% of them care for parents with dementia and the rest a variety of other chronic illnesses. Caregiving is clearly a long-term commitment: Over half have been providing care for three years or more and another 31% for at least a year.

The illness of a family member thrusts other family members, close friends, and sometimes neighbors and work colleagues into a new life situation where the need to provide care redefines daily life and perceptions of the future. The decision to take care of an ill person is not always a choice; in one US surveys, half of informal caregivers reported they felt they had no choice in taking on their caregiving responsibilities (National Alliance for Caregiving & AARP, 2015).

Many (but not all) caregivers experience serious psychological distress. The level of distress is dependent on a combination of multiple factors, including the illness trajectory, treatment phase, characteristics of the caregiving situation and characteristics of the person.

As will be described in detail in the next chapter, caregiving affects mental, physical, and social health in many ways (see also Schulz & Martire, 2004). Although earlier evidence suggested it may be associated with a higher risk of mortality (Schultz & Beach, 1999), more recent epidemiologic studies suggests that providing care to a family member with a chronic illness or disability is not associated with increased risk of death in most cases, and may instead be associated with a modest survival benefit (Brown et al., 2009; Roth, Fredman, & Haley, 2015). Again, the context of the caregiving situation will shape how caregiving affects health and mortality.

The levels of psychological distress reported are not trivial. Nearly all of the caregivers (91%) in a national survey reported that they suffered from symptoms of depression, and that caregiving made their depression worse (Evercare & National Alliance for Caregiving, 2006). In a US national survey, 50% of caregivers considered their situation as posing moderate to high stress. Studies of cancer caregivers have found that between 20% and 50% report clinical levels of depressive symptoms soon after diagnosis and during initial treatment (Kim, Shaffer, Carver, & Cannady, 2014; Kim, Carver, Shaffer, Gansler, & Cannady, 2015).

Defining caregiving

Informal or family caregiving is defined as the behavioral expression of one’s commitment to the welfare of another family member (Pearlin, Mullan, Semple, & Skaff, 1990). It usually refers to the provision of unpaid care to another individual in the family, household, or social network that has physical, psychological, or developmental needs. Informal caregivers are often laypersons who take up their roles without formal preparation, adequate knowledge, resources, and skills needed to perform their tasks (Blum & Sherman, 2010; Northouse, Williams, Given, & McCorkle, 2012). This book refers specifically to caregiving that involves care provision in response to a loved one’s health challenges or health declines, above and beyond that what is typical within the particular relationship.

The many types of responsibilities placed on caregivers of the chronically ill can make caregiving a complex experience. Sherman, McGuire, Free, and Cheon (2014) list many of the stressors of caregiving. Although their sample was composed of family caregivers for patients with advanced pancreatic cancer, the issues faced apply to any cancer and, in fact, to almost any serious illness (see also National Alliance for Caregiving & AARP, 2015 for frequencies with which caregiver tasks are reported).

First, family caregivers are often called upon to assist with complex medical and nursing tasks. Informal caregivers are often relied upon to monitor adherence to treatment, with some caregivers expected to learn how to deal with complicated treatments (e.g., home-based dialysis), administer medications, provide symptom management (Fletcher, Miaskowski, Given, & Schumacher, 2012), and accompany the ill person to medical visits (Wolff & Roter, 2011). They often negotiate financial and administrative responsibilities, and navigate the intricacies of the healthcare system (Williams, Tisch, Dixon, & McCorkle, 2013). In many countries, formal care resources, for example visiting nurses or physical therapists, are often limited and sporadic; as a result, many caregivers’ needs remain unmet (Blum & Sherman, 2010). Second, caregivers provide practical care. Caregiving may include assistance with basic activities of daily living (e.g., buying groceries), personal care (e.g., help with bathing), and helping with administrative tasks or searching medical information. Third, caregivers provide emotional care, including listening to worries and providing companionship. Fulfilling these tasks requires many hours of care and often brings substantial personal, financial, and mental health costs to the caregivers (Schulz & Martire, 2004).

Caregiving as a dynamic process

One can think of caregiving as a journey, punctuated by stages and transitional events. It begins with anticipation for and acquisition of the caregiver role, moving to the everyday performance of tasks and responsibilities, health crises, and eventual exit from the role (Blum & Sherman, 2010). Caregivers may also transition into and out of the role and, over time, the amount and types of assistance they provide will fluctuate. The notion of informal caregiving as a “career” (New York State Office for the Aging, 2012) connotes the way that it can take over a caregiver’s life. At the same time, caregiving evolves in both predictable and unintended ways as health challenges unfold and resources change (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). Much of the research, however, takes a “snapshot in time”, providing information on caregiving in the present moment.

Distinguishing caregiving from social support

We want to clarify the difference between caregiving and providing social support although the two overlap. The exchange of social support is part of daily life in most intimate relationships. That is, people tend to support significant others at times of stress (e.g., after failing an exam, a conflict with a co-worker). Many tasks that caregivers fulfill could be labeled as providing social support. A caregiver may listen to the worries of the care recipient (i.e., emotional support) or may do household chores (i.e., instrumental support) or provide companionship.

The key differences are that (1) the care provided is above and beyond that what is typical within the particular relationship, (2) a caregiver is usually providing such support over a more extended period of time at a more regular basis, (3) the provision of support or care is usually more unidirectional than bidirectional, and (4) the provision of support is often born out of necessity or a strong feeling of responsibility or obligation, although most caregivers would say they provide care out of love. Being a caregiver may even become one’s social identity, while few people would call themselves a support provider. Still it may be difficult to establish whether acts of care should be seen as part of the “normal” exchange of support, or whether it is above and beyond that what is typical within the particular relationship.

In sum, there is something unique about caregiving that differentiates it from the provision of practical or emotional support. In this book, caregiving involves a sense of perceived responsibility that cannot be turned on or off; you get up with the responsibility and you go to bed with it, which may change your identity.

Measurement of caregiving

Studies use very different definitions and measures of caregiving; some do not define the concept at all. In some studies on caregiver outcomes, patients were asked to indicate the person who was most likely to provide care for them when it was needed (e.g., Kim, van Ryn et al., 2015). This may mean that no actual care was provided. In a study of depression among cancer caregivers, the caregivers were nominated by the survivor as “adult family or family-like individual who provided consistent help during the survivors’ cancer experience” (Kim et al., 2014, p. 2). Does “consistent” mean the same thing to different people and is it predicated on the relationships (spouse, sister) or whether the caregiver lives in the same residence? Other studies defined the caregiver as the single person most involved in providing assistance and daily care to the patient (e.g., Lee et al., 2015; Nagpal, Heid, Zarit, & Whitlatch, 2015), but it is likely that for seriously ill persons, there is a network of both formal and informal caregivers. It is also possible that the named caregiver may provide only low levels of care or intermittent care. Some studies require that a person provides a minimum amount of care in terms of number of care tasks or hours of care in order to be considered to be a caregiver; other studies measure the amount of care from either caregiver or patient reports (e.g., Lyons, Zarit, Sayer, & Whitlatch, 2002).

The lack of a singular definition of caregiving and of varied measurements of caregiver burden across the literature has consequences for the generalization of findings and comparison between studies (Romito, Goldzweig, Cormio, Hagedoorn, & Andersen, 2013; Zarit & Reamy, 2013). In this book, we will try, whenever possible, to describe the caregiving context in terms of type and phase of disease, and the way that caregiving has been ...

Table of contents

• Cover
• Title
• 1  What Is Caregiving and How Should We Study It?
• 2  Caregiving Outcomes
• 3  Caregiving as a Dyadic Process
• 4  The Emotional Experience of Caregiving
• 5  Gender and Caregiving: The Costs of Caregiving for Women
• 6  The Influence of Culture on Caregiving Cognitions and Motivations
• 7  Personality and Caregiving
• 8  Interventions to Support Caregivers
• References
• Index