Health is a Family Affair: Empowering Families to Manage the Chronic Illness Journey

Dr. Karen Shirer, PhD

Family providers, whether medical professionals, social workers, family life educators or others, can play an important role in helping families manage the challenges of chronic illness and in turn building family resilience.

In Part 1 of the two-part webinar titled Chronic Illness: Empowering Families in the Journey, we learned that the health of family members and family well-being are closely linked.  Chronic illnesses like diabetes, heart disease, PTSD, traumatic brain injury, and other effects of combat injuries create stress in individuals and their families.  But family support and positive communication afford critical protection against developing chronic disease to begin with and for effectively coping with it when it occurs.  If you have not had the opportunity to view this webinar, please click here to access the recording.

So what can practitioners who work with these families do to promote family health and well-being when facing chronic illness?  Part 2 of the webinar, directed at practitioners, describes a number of strategies for engaging the whole family in the health care of their family members.  Dr. Tai Mendenhall from the University of Minnesota gave a menu of strategies that care providers can utilize to help families harness resources, provide support and promote resilience.

Space does not permit describing them all so I will focus on two strategies – advancing a sense of agency and enhancing communion between family members. However, Dr. Mendenhall describes these two strategies as the pillars or basis for the remaining strategies. If you are new to this kind of work with families, these two strategies are a very good place to begin.

Advancing agency

What we mean by agency? Sociologist, philosophers and literature all use the term agency to describe people’s freedom and capacity to live and act in their world. This means that a family member with chronic illness and his/her family members recognize and make choices about their health care and other aspects of their lives in order to reach their goals.

Family care providers advance agency as they engage families in as many health care decisions as possible and respect the decisions that families make.  It means giving them choices that are both small (for example, would you like water or coffee while we meet?) and large (for example, negotiating and creating a treatment plan together).  Providers also maintain a “problem-solving” approach and culture throughout the entire course of care – hope is never lost.

Several years ago, I had my own bout with a chronic illness whose effects remain with me today. I cannot begin to describe just how important advancing my and my family’s agency was as I received care.  My entire health care team — physician, the nurse practitioners, the nurses both in the clinic and the hospital, physical therapists, nursing assistants, food service workers, and even the young woman who changed my bedding gave me choices.  As a result, I felt not only empowered to make choices they gave me but to become deeply involved in my own care and healing.  I asked questions, searched the Internet, practiced mind-body therapies like mindfulness, and at a critical point, turned down a therapy that I knew my beleaguered body and spirit could not tolerate. This last choice, in hindsight, was my best and most impactful decision and my physician agrees heartily with me today.

Enhancing Communion

Like agency, communion is defined by the field of psychology.  Communion describes our desire and feelings to relate to others, cooperate with them, and draw closer to them over time.  In essence, agency is about empowering the patient or family member with chronic disease and communion is about promoting connections with the whole family and their broader system of support.

Dr. Mendenhall highlights that combating chronic illness commonly leads to social isolation due to the disruption of normal daily life and routines where we connect with others. The illness may prevent one from working, socializing, and fulfilling important family roles, which leads to feelings of isolation.  As the second pillar or base for all the strategies, family practitioners need to work with the family to overcome the isolating effects of the illness.

Enhancing communion involves encouraging the family member who is ill and other family members to give each other support AND to receive support from one another.  The ill family member plays an important part in giving as well as receiving support.  Your role as a helping professional involves encouraging social connectedness and support. In addition, when difficulties arise in accessing another’s attention, time and regard, you need to help them work through any real or imagined barriers that family members encounter.

When I was ill, my partner, my brothers and my children gave me tremendous support.  But I quickly learned that they needed my support as well. They, too, were struggling with the stress of my illness and needed to connect to me and share their concerns. My adult daughters had their own family dilemmas, one the mother of a premature infant and the other experiencing infertility challenges. My husband served as a rock for me but he needed to vent at times about our naughty puppies at home. These problems gave a sense of normalcy to our lives and helped us deepen our connection and communion with each other.

The remaining strategies described in the second webinar provide more ways to advance agency and enhance communion with families that are dealing with chronic illness.  You can view the webinar here. The webinar also highlights several case studies, which will give you an opportunity to think more deeply about and apply what you learn in the webinar.  Then you will be prepared to practice your new skills with families experiencing the challenges of chronic illness.

Reference:                                                                                                                                                           Diehl, M., Owen, S. K., and Youngblade, L. M.  (2004). Agency and communion attributes in adults’ spontaneous self-representations.  International Journal of Behavioral Development, 28, pp. 1-15.

Karen Shirer is a member of the Military Families Learning Network Family Transitions Team and the Associate Dean with the University of Minnesota, Extension Center for Family Development. Karen is also the parent of two adult daughters, a grandmother, a spouse, and a cancer survivor.

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