Caring for the Family Caregiver

There is little evidence for caregiver assessment and interventions based on unique social and contextual factors of caregiving. Current approaches to caring for the family caregiver involve a “one size fits all” approach where caregiver assessment may or may not occur, and there is no link between identification of caregiver needs and recommended resources. When caregiver assessment does occur, it does not involve unique caregiving characteristics that positively impact communication and health literacy. Caring for the Family Caregiver, a communication and health literacy framework, is introduced and consists of teaching healthcare providers to address caregiving types by finding disease information, assessing and integrating information, partnering with the caregiver, finding support, talking with the caregiver, and planning for caregiver self-care. Directions for future research are also summarized.

The Manager Caregiver

As the Manager emerges from a communication climate of HIGH/WARM conformity (strong pull to share in similar values, attitudes, beliefs, and familial role expectations) and HIGH/COLD conversation (frequent and restricted communication contacts within the family system), the priority and commitment to family is prioritized. This priority can subvert the needs of this caregiver, and the Manager can find themselves protecting the care recipient and, at times, other family members from the challenges associated with understanding a diagnosis and its treatment. The Manager is drawn to professional help and support as well as health information, but this does not mean the Manager is sure about either—and they are strongly reliant on opinions of providers and professionals in their midst. The Manager employs similar approaches to all manner of pain (physical, emotional, social, psychological, spiritual) and because of the vigilance of the Manager, serving as the expert on the patient is a key-defining trait that is communicated via interactions with providers, family, patient, and other players. This trait positions the Manager to plan and activate care and advance the dynamics of the family system in which they live.

The Family Caregiver Communication Typology

Chronic illness in the family can force patterns to change or a create a struggle to maintain existing patterns. When healthcare providers seek to learn what exists before illness for the patient and family caregiver, they are endowed with the knowledge to provide tailored communication to better meet their health literacy needs. This chapter details how the family system influences a caregiver’s communication and caregiving experience, demonstrating the need for an integrated and tailored approach to care for the family caregiver. Family expectations, decisions, roles, and uncertainty figure prominently in setting the stage for the caregiver communication burden incurred in the process of caregiving. The authors present the program and process of research that resulted in the creation of the family caregiver communication typology and detail four family caregiver communication types, which aid in understanding a caregiver’s communication needs and preferences.

The Lone Caregiver

Lone caregivers derive from families with low conformity and conversation. Regular exchanges of interaction are not part of their family experience, nor are ritualized dates, behaviors, and times together. The members of this family group are stars in the same constellation but have no responsibility or time dedicated to one another. LOW/COLD conformity is demonstrated through a lack of consistency in family rules, sharing beliefs that demonstrate inequity, not recognizing protected family times/rituals, and avoiding the cultivation of family closeness. LOW/COLD communication is characterized by low expectation for agreement and assimilation in conversational topics and frequency of interaction. The dyadic dynamic with the care recipient may serve to be its own significant support for some Lone caregivers. These two collaborators, in some care situations, may share the burdens of decision-making, planning, and even care management. The absence of a family support network moves the Lone caregiver outside of family structures to develop resources and help in caregiving. Healthcare providers and system resources are especially vital in supporting care decisions, goals, and self-care. The Lone caregiver has high levels of facility with information seeking and care navigation/pursuit and presents to others as seeking of the most effective physical relief for the care recipient. This caregiver is particularly bound to the care recipient, vigilant about an unfolding disease path, and in high need of self-care resources and respite.

The Carrier Caregiver

For the Carrier caregiver, caregiving is an opportunity to fulfill family duty and demonstrate family commitment through sacrifice and hard work. A HIGH and COLD conformity pattern reveals an obligation to care for other family members, an implicit understanding that illness requires immediate family mobilization, and a belief that gatekeeping is necessary to sustain and preserve family functioning. The LOW and WARM conversation pattern exposes unclear rules for talking about illness. There is inconsistency in topics discussed, ideas are disjointed, and specific circumstances when talk about illness is considered permissible. Self-restraint among family members inhibits open sharing, and nondisclosure is considered honoring family. As protector of the care recipient, the Carrier caregiver is task-driven and focuses on keeping the illness a private family experience.

Palliative Care

Whether they are thrust into the caregiving role or volunteer for it, most caregivers want to know what to do, how to do it, and how to prepare for what is ahead. For some caregivers, information is empowering, and for other caregivers, it is overwhelming. Regardless, examine any study on family caregiving or talk to any family caregiver, and the conclusion will be the same: Family caregivers need information, education, and support. Few caregivers are able to fully understand and use available health information when advocating and caring for chronically ill patients, and this seriously complicates their ability to contribute to patient self-management and support at home. To help caregivers understand their role and get them the help they need, they have to be included in the healthcare system and in the patient care process. In recognizing that caregivers are current and future patients who need care too, this chapter (a) introduces palliative care to illustrate how the patient and family’s illness journey is powerfully influenced by their understanding of the disease and its treatment and (b) outlines the health literate care model to identify important reasons to integrate caregivers. Both foci of this chapter are radically impacted by the pre-existing structure and function of the family. Narrative features of caregiving are used to describe three illness journeys that caregivers traverse.

Health Literacy

Caregivers require the skills needed to support complex medical conditions and utilize opportunities to access, understand, and share reliable health information with care recipients to advocate for successful disease management and decisions. This chapter addresses the unique characteristics of caregiver health literacy and the burden of navigating increasingly complex healthcare systems. The connection and consequence between health literacy and social determinants of health upon caregiving, the implications of caregiver health literacy skills, and the influence of culturally and linguistically appropriate standards on enhanced caregiver health literacy, clear communication, and family-centered care are discussed. Health literacy involves not only caregivers’ and patients’ cognitive and functional skills, but also the collaborative efforts among patients, caregivers, healthcare organizations, healthcare providers, and communities. This collaborative view of health literacy underscores the synergy among healthcare recipients, formal and informal healthcare providers, and resources from healthcare systems to reduce health literacy barriers, ease communication burden, and lessen inequities in health.

The Partner Caregiver

A LOW/WARM conformity pattern coupled with a HIGH and WARM conversation pattern produces positive family learning for the Partner caregiver, with family members working on their own to adapt, cooperate with each other, and engage in emotions associated with caregiving. Partner caregivers present to others as supporter of the experiences of the care recipient. Caregiving is an emotionally intense experience for the Partner caregiver, who becomes entrenched in the adjustment process of chronic illness. Partner caregivers perceive their role to involve (a) support care recipient decision-making by trusting doctors and honoring his or her decisions; (b) advocating on behalf of care recipient in communication with doctors and the healthcare team, including asking questions and finding out more information about prognosis and future; and (c) emphasizing family harmony through collaborative efforts that involve taking time to converse as a family.

The Family Caregiving Imperative

The majority of adults will develop or contract one or more chronic illnesses in the latter third of their lives. They will live protractedly with illness for years before death. About one in six Americans (adult aged, as there are no reliable numbers on caregivers under the age of 18) provide an estimated 37 billion hours of unpaid care to family or friends. This population of caregivers shoulders a heavy load with little support, putting their own health in peril. A description of the caregiving population, their tasks, and financial costs are detailed. The four most common chronic illnesses of dementia, cancer, diabetes, and heart disease are specifically examined from a caregiving perspective. An argument is presented that situates the patient and caregiver as one unit of care, prioritizing family communication as a key part of health communication and decision-making. The summative force of perceived, experienced, and anticipated communication for the caregiver with patient, providers, family, and system is described. Caregiver effectiveness and well-being can be improved through better communication and improved health literacy, which also improves patient outcomes. The integration of family illness narratives that situate the informal caregiver’s experiences are presented. Four featured caregiver stories are detailed and set the stage for a typology of caregivers, which will unfold across the volume.