Helping Couples and Families Navigate Illness and Disability: An Integrated Approach

Book Title: Helping Couples and Families Navigate Illness and Disability: An Integrated Approach

Book Author: John S. Rolland

Publication Information: New York, Guilford, 2018, 400 pp., $45.00, hardcover

This book arrived by mail, by great coincidence, in exactly the same week that a family member in our home received a diagnosis of advanced cancer and the family was about to gather at our home to visit her. Timely, and very much appreciated, John Rolland’s book served as salve for me and for our family. His voice comes through the pages with caring, empathy, understanding, and wisdom. Despite the scholarly nature of the book, the personal sharing and case examples breathe great humanity and compassion into the enormity of the caregiver struggle.

In the book, John Rolland, MD, MPH, expands on his innovative and sensible Family Systems Illness model that is built on a foundation of a systems viewpoint that encourages health care practitioners (and family members) to adopt a broad perspective on the patient and their condition within the larger context of their life.

From this perspective, function and dysfunction are defined by the fit between the individual and the family, and their social context, the psychosocial demands of the health condition, and other stressors in family life. (p 9)

As if this is not complicated enough, Dr Rolland prepares health care practitioners to understand that the journey of illness is often marked by dramatic changes in severity of symptomatology, patient and family needs, responsiveness of the health care system, and the availability of resources (psychological and material).

Part I, “The Family Systems Illness Model: The Experience of Illness and Disability,” provides extensive and foundational background to Dr Rolland’s whole-person and whole-family approach. He immediately begins providing helpful tools such as questions clinicians can ask patients and family members about their understanding of the illness (p 26) and preparedness to optimize their own well-being along the journey (p 39).

Part II, “The FSI Model: Working With Couples and Families,” begins with an extremely timely and useful table by which clinicians can determine the skills they will need to develop, based on their level of clinical involvement with the patient. Dr Rolland does not end with skills, however; he sagely includes suggestions for the knowledge base required to be successful, as well as suggestions for personal development. Here we see the precious recognition of the emotionally demanding nature of this work for family members and clinicians alike, and the essential role of self-awareness, self-care, and attention to countertransference reactions. Again, his perspective is broad, multigenerational, developmental, and anthropological to the degree to which patients, families, and caregivers ascribe meaning to the experience of illness and caregiving.

In the third part of the book, “Phase-Related Issues and Specific Populations: Practice Guidelines,” Dr Rolland provides a master class in strengthening the reader’s attention to and knowledge of the emotionality and intensity of the illness journey. He highlights experiential aspects (and unique patient and family needs) related to loss, grief, intimacy, and cognitive changes. He devotes a chapter each to intimacy, parenting, and children and adolescents. Sage advice flows, as in the reminder,

One of the most painful aspects of a serious childhood diagnosis is the parents’ sense of loss of control over protecting their child from physical harm and suffering. (p 204)

Dr Rolland saves the best for last. In the final part of the book, “The Clinician’s Experience and Collaborative Practice,” the reader encounters deeply moving and personal accounts of both the rewarding and potentially depleting nature of family and patient caregiving. A renewed call and helpful suggestions for self-care and resilience are included.

Early in the book, the author briefly discusses the impact of disparities in health insurance coverage on the journey of illness and caregiving. Throughout the book he is attentive to the impact of gender and generation, and in chapter 18 presents a case highlighting the impact of culture. This book would be strengthened by a more deeply developed exploration of the intersection of poverty, racism, and unique cultural contributions to the experience of both illness and caregiving. Attention to minority and oppressed status is an essential component of the provision of enlightened and responsive health care.

I am a smarter clinician, better teacher, and more compassionate family caregiver having spent time learning from Dr Rolland. As promised in the title, I am better prepared to navigate illness and caregiving with a decreased sense of isolation, and a deepened understanding of the essential importance of a systems perspective.