Abstract
Caring for the Family Caregiver describes the relationship between health care professionals and family members who care and support patients through ongoing illness. The authors describe this as a forgotten aspect of health care with medical professionals often overlooking the vital role family caregivers have in supporting their family members through chronic illness. Most of the caring work involved in managing chronic illness happens at home, carried out by family member support systems, which makes communication and understanding between professionals and family members vital. They note that although the family system is ignored within chronic care services, it is viewed as a critical component of the palliative care system.
As such, the authors have two main goals through this book: (1) to make the argument that a palliative care approach should be extended to chronic illness care by health care providers (Chapters 1–3) and (2) to highlight and develop the four family caregiver communication types that they suggest should be used by medical care professionals in communicating with family caregivers (Chapters 4–8). In addition, they posit that each caregiver type consists of differing strengths and needs, and health care providers should strive for communicating with caregivers in a way that is informed by the caregiver's typography (Chapter 9), which can be assessed using the Family Caregiver Communication Tool (Chapter 4).
Family communication patterns theory posits that a family unit develops communication patterns through their shared collective reality and these patterns inform and determine how/if topics are discussed and how/if decisions are made within this unit. The authors consider that these preconceived communication patterns carryover into chronic illness management and decision making within a family unit. Conformity and conversation are key elements of family communication patterns theory and how the unit engages with each determines whether they have a “high” or “low” orientation for each category, which determines their communication pattern.
For example, families that emphasize harmony/conflict avoidance over independence of beliefs (high conformity) and spontaneity and creativity in family communication over restricted conversation topics (high conversation orientation) would have high conformity and high conversation orientation. This conceptualization results in four potential family communication types, which the authors used to construct and inform their Family Caregiver Communication Types, merging family communication patterns with elements of chronic illness management within family units*.
The traits of each group were determined and verified using a variety of methods, including video recordings of family caregiver interactions, input from clinicians to determine face validity, and self-reports by caregivers that were cross-referenced with caregiver type as determined by corresponding care receiver. Then the authors developed detailed profiles for each of the four caregiver types along with the Family Caregiver Communication Tool for health care providers.
Family caregivers with high communication orientation and low conformity are categorized as “Carrier Caregivers.” They support the decisions made by the patient and health care providers and see their role as carrying out those decisions rather than making them. Such caregivers are unlikely to enlist help from other family members, seeing this role as being “their job” but, will seek support and comfort from health care providers. The Manager caregiver has the opposite categorization—high conformity with low communication orientation and is characterized as a leader in the care of their family member. Patients will defer to the Manager caregiver, who takes an active role in research, conversation, and decision making for their family member.
The Lone caregiver has both low communication orientation and conformity. They undertake all caregiving work alone and are likely to feel negativity toward their family members for not contributing. Lone caregivers actively participate in decision making with health care professionals and actively participate in carrying out those decisions with the patient. The Partner caregiver has high communication and conformity orientations and sees their role as being one person within a family network. They are likely to share caregiving work and decision making with other family members and have their own support needs met by these family members as well.
The authors suggest that health care professionals should engage with family caregivers while recognizing the strengths and needs of that individual based on their Family Caregiver Typography. This ensures the family caregiver is well supported, informed, and cared for while they provide the ongoing care for their loved one. Their recommendation for altering communication based on caregiver type and their expansion of palliative care methods to include chronic illness care are both significant and welcome steps forward in ensuring the ongoing care and support of family caregivers.
This book was written with the goal of informing health care providers on differing communication types and how to tailor their approach when working with each. They use plain language and provide substantial examples of narratives to further conceptualize these ideas. This ensures that this book is both accessible and applicable across a wide dimension of health care provider specializations. The focus on language and narration ensures this book can be read and understood by those who are not in the medical profession and would be a worthwhile addition to the knowledge base of caregivers as well, especially when they are involved with health care professionals who ascribe to this volume.
Caregivers can use the Communication Tool † to learn their own typography. This can help them understand their experiences, and may highlight areas and ways of improving communication within their family network. Speaking from my personal experience as a caregiver and researcher on the experiences of caregivers, this book provides an important and potentially exciting foundation for health care providers and caregivers to build upon.
Throughout this book, I was plagued by the question of typography crossover ‡ and the potential for shifting family communication patterns. The authors address this on the last page affirming that although caregiver health literacy and communication skills may increase during caregiving, typography will remain unchanged unless there is a change in the family system. But I do not see anything in the book that indicates these typographies were developed and verified using longitudinal methods.
It seems plausible, and holds true in my lived experience, that family involvement and communication patterns shift and change over time and with changes in disability status of the care recipient. To think that how the family unit functions and communicates would appear the same 1 month into caregiving versus 10 years into caregiving seems to ignore the changes that time will inevitably bring to the family unit.
In the conclusion the authors also state that the question of mixed typography has been posed to them, but they do not address it. To consider that each person fits a type and only one type seems minimalistic and may lead to mistyping by providers. For example, Daniel (Chapter 6) is categorized as a Carrier caregiver § but when his grandmother was diagnosed, he forced her to quit smoking, which he describes as a battle. This seems to correlate with Lucy's narrative (Chapter 8) of trying to get her husband to increase his physical activity, but she is categorized as a Lone caregiver**. The idea of each caregiver fitting into only one typography may lead to differing interpretations and subsequently differing classifications based on narratives that appear to closely relate to each other such as these.
Even with this potential problem, this volume provides crucial insight into the experiences of family caregivers and the way health care professionals can join in that experience as helpful partners and facilitators for family communication. As a family caregiver, I also reflected on my own experiences while reading this book. After determining my typography, I was able to conceptualize my own strengths and capabilities but having access to other typographies allowed me to understand where my experiences differ and how I could approach areas I feel are lacking to improve overall caregiving experience. I appreciate what the authors have done in this work and as a researcher, I look forward to seeing the work they will undertake in the future.