When the Family-Centered Care (FCC) model1 was developed, it prompted a fundamental question, “How will it change our clinical conversations?” Without a framework in mind, an FCC conversation may seem intimidating. However, if we keep the concept of “Quality of Life” (QoL) in mind, we will find ourselves on familiar ground. Audiologists already routinely (directly or indirectly) address QoL with patients2,3 and are fully aware of the impact of HL on significant others’ QoL.4,5 Proposed here, then, is a logical extension of QoL conversations, from the individualized level to the family level. Specifically, how does hearing loss affect a family’s quality of life?
Is “Family Quality of Life” a thing?
Family Quality of Life (FQoL) is a relatively new concept in health and human services, defined as “a dynamic sense of well-being of the family, collectively and subjectively defined and informed by its members, in which individual and family-level needs interact”6. FQoL has been a key consideration for families of children with disabilities7 but we can easily see its application to adult patients and their families. Obviously, only the family can articulate how hearing loss affects its FQoL; if we incorporate their FQol concerns into our conversation, we communicate our goal of helping them as a family.
Many patients agree with their family about the impact of hearing loss on their family life. After we listen to their concerns, we can summarize by acknowledging their overarching reason for making the appointment: “Your family life is important to you, and that’s why you’re here.” Emphasizing “family life” as the focus of our care sets the stage for subsequent guidance to both patient and family about their roles in the rehabilitation process.
When families are less forthcoming or focused, we can frame a family-centered conversation around FQoL with a simple question: “Tell me a little bit about how you spend your family time together. Shared hobbies or interests? Meals and holidays; fun or work or travel together?” On these details, patient and family will likely agree: it is their shared history, after all, and ideally patient and family member will talk with each other as well as the clinician. It’s also likely the impact of hearing loss will be mentioned: “We used to try out a new restaurant every weekend, but now it’s too hard…” But if not volunteered, we can wonder out loud about potential challenges: “Restaurants can get really noisy. Sometimes it’s hard to hear the wait staff.”
Although not in so many words, we are asking the family to describe what “Family Quality of Life” means to them, and also to reflect on the impact of hearing loss from their unique family perspective. If patients are ready to move forward, they and their family effectively co-develop their own family-centered treatment plan.
But first: Putting ourselves in families’ shoes
If hearing loss has not already impacted the quality of our own family life, it can help our understanding if we ask ourselves similar questions. Regarding “how we spend our time together,” our responses will be personal and unique; for example:
- We usually gather for Sunday brunch and then take a walk through the neighborhood.
- We love road trips to oddball tourist attractions.
- We take secret shopping excursions to find perfect birthday presents.
- [Your examples??]
And then consider: how would a family member’s hearing loss affect these valued experiences? As with our patients, our own FQoL has developed over the years and is precious to us.
Tolstoy’s novel Anna Karenina opens with a frequently quoted observation: “All happy families are alike; each unhappy family is unhappy in its own way.” Families in our clinic will vary on the happy-unhappy continuum but at the least, it seems safe to say they are unhappy about how hearing loss is impacting their family lives, or unhappy about family pressure to treat hearing loss. If we can help them identify ways to make their family life happier with better hearing, we are one step closer to family-centered care.
To learn more on this topic, we invite you to listen to Kris English’s podcast on Spotify, titled “We are no marriage counselors!”.
We also invite you to read a recent Family-Centered Care article by Shari Eberts in HearingTracker.com, titled “Should You Include Family in Your Next Audiologist Visit?”
1Singh G. et al. (2016). Family-centered adult audiologic care: A Phonak position statement. Hearing Review, 23(4), 16-21. http://www.hearingreview.com/2016/03/family-centered-adult-audiologic-care-phonak-position-statement
2Hyams A. et al. (2018). Hearing and quality of life in older adults. Journal of Clinical Psychology, 74(10), 1874-1883.
3Punch J. et al. (2019). Hearing loss and quality of life. Journal of Communication Disorders, 78, 33-45. doi:10.1016/j.jcomdis.2019.01.001
4Lazzarotto S. et al. (2019). Coping with age-related hearing loss: Patient-caregiver dyad effects on quality of life. Health and Quality of Life Outcomes, 17(1), 86-93. doi: 10.1186/s12955-019-1161-6.
5Wallhagen M. et al. (2004). Impact of self-assessed hearing loss on a spouse: A longitudinal analysis of couples. The Journals of Gerontology: Series B, 59(3), S190-S196. doi.org/10.1093/geronb/59.3.S190
6Zuna N. et al. (2010). Theorizing about family quality of life. In R. Kober (Ed.), Enhancing the quality of life of people with intellectual disability: From theory to practice (pp. 241-278). Dordrecht: Springer.
7Balcells-Balcells A. et al. (2019). Impact of supports and partnership on family quality of life. Research in Developmental Disabilities, 85, 50-60.