More specifically, this article will (1) describe the principles of family-centered practice in adult audiologic rehabilitation, (2) summarize observations of family-centered behaviors in current audiologic rehabilitation, and (3) identify opportunities to increase the family-centeredness of adult audiologic rehabilitation. To address these aims, we will outline the research evidence behind family-centered care (FCC) (the why), and from this, describe how FCC might best be implemented in audiologic rehabilitation. For the purposes of this article, “family” incorporates anyone who plays a significant role in the life of a person with hearing impairment, whether this relationship is biological, legal, or emotional (Kilmer et al, 2010). As such, family extends beyond spouses and adult children to others such as friends, neighbors, colleagues, and employers.
Epley and colleagues (2010) provide us with five key principles of family-centered practice.Perhaps one of the most important principles is that the entire family, not just the person with hearing impairment, should be the unit of attention in rehabilitation.
The broader family unit is acknowledged to be a unique and vital force in addressing the impact of the hearing loss. In developing a clinical relationship, the clinician addresses the impact of the hearing impairment on the family unit.
It is our suggestion that this is one of the keys to engaging families in audiologic rehabilitation. The communication difficulties arising from the hearing impairment on everyday social activity and interaction not only impact the person with hearing impairment but their family as a whole. This has been labeled by the World Health Organization as a “third-party disability.” The changes (often reduction) in everyday activity are experienced by the entire family as a consequence of a family member’s impairment (WHO, 2001; Scarinci et al, 2009, 2012). In establishing and agreeing on goals for overcoming the everyday effects of the hearing impairment, the clinician may seek the input of both the person with hearing impairment and the family. This may help to prioritize the goals and the actions that follow.
What do we know from recent research about the nature and the benefits of FCC? Well, the support of family members in audiologic rehabilitation has been found to (1) increase the likelihood of help-seeking by the person with hearing impairment, (2) assist in decision-making and goal-setting, and (3) promote the successful use of hearing aids (Meyer et al, 2014; Laplante-Lévesque et al, 2010a, 2010b; Hickson et al, 2014).
Indeed, not only does family member attendance in rehabilitation promote positive clinical outcomes, but research shows that adults with hearing impairment and their families agree that their attendance helps develop a shared understanding of, and shared responsibility for, treating the communication difficulties they experience (Grenness et al, 2014; Ekberg et al, 2015).
While clinicians agree that family members’ attendance helps them facilitate engagement and provide education and communication training (Meyer et al, 2015), their acceptance by clinicians as active participants in the clinical setting/process remains inconsistent and infrequent (Ekberg et al, 2015).
Research has shown that family attendance at appointments is low (30 percent or less) (Grenness et al, 2014, 2015). In many instances, family members have reported that they were not aware that they could attend the appointments and those who did attend reported that they simply observed the appointment.
Ekberg and colleagues (Ekberg et al, 2014; Ekberg et al, 2015) found that family members who were invited into the clinic room typically were not invited to join the conversation. Rather, they would respond to questions from the audiologist directed to the person with hearing loss. It was also of note that audiologists typically responded to turns taken by family members in the conversation by shifting their attention back to the person with hearing loss. Although the benefits of FCC are known, implementation of FCC in audiology practices is inconsistent.
To address this evidence-practice gap, the authors video-recorded a sample of clinical sessions involving hearing-care professionals and persons with hearing impairment who attended sessions with at least one family member (Scarinci et al, 2018). The recordings were coded for use of family-centered strategies that were identified from our own experiences, as well as from previous literature (Singh et al, 2016).
Although FCC was not consistently implemented, observations relating to the use of FCC included clinicians setting up their clinic rooms in a manner that welcomed family members and clients equally, with family members sitting next to the person with hearing impairment. Family members were active participants in the appointment, consistently following the discussion and indicating agreement/disagreement with statements made by the person with hearing impairment or the clinician (e.g., “mm-hmm” and head nods).
Family member engagement was initiated effectively by the following:
The clinician (e.g., by asking about their own experiences of the person’s hearing impairment)
The person with hearing impairment (e.g., by referencing them to clinicians, regularly looking at them, or directly asking them for input)
The family member themselves (e.g., by reminding clients of things they had to ask or tell the clinician)
Implementation in Clinical Practice
With the earlier observations in mind, let us now address what we might do to enact a family-centered model of care in audiologic rehabilitation with the aim of enhancing the experience for the whole family unit. To increase family engagement in appointments, clinicians might do the following:
Set the scene for equal participation in the appointment.
Seek and value input from the family unit throughout the audiologic rehabilitation process.
Change the talk to focus on communication and engage all people in the discussion during the appointment.
Provide information to the family unit about hearing impairment and options for audiologic rehabilitation.
Our first aim is to “set the scene;” that is, to create a physical and social environment that supports the interaction among people in the clinic in a family-
centered manner. Although it seems obvious, your clinic might benefit from introducing processes to ensure that family members are invited to the appointment.
The overt expectation that a person with hearing impairment will bring a family member with him or her is a powerful catalyst to having family members attend. When making appointments, you or your staff might
consider saying the following:
Our experience is that it is very helpful if you can bring a family member or a friend along to the appointment. Who might that be”
If the client asks for more information, you could say the following:
There is a lot to discuss and it helps to include family or friends in the process.
Clinicians report that family members who do attend either sit in the waiting room or come into the clinical room, but sit away from the action, perhaps toward the back of the room (Scarinci et al, 2018). The set-up of your clinical room is paramount to having both the person with hearing impairment and his or her family assume they will be involved in the appointment. Chairs should be set up at equal distances from each other as an environmental marker of the expectation that all people will be active participants in the appointment.
As a follow-up to setting the scene, and having sought the client’s agreement for their family member(s) to attend, you can reinforce that both individuals are important to the success of the appointment. This may be done by welcoming both individuals into the clinic room by name and reiterating why it is important for both to attend. We suggest that you discuss with both client and family members their experiences of the impact of the hearing impairment in everyday communication situations. As a result, you may wish to find out the following:
How each person thinks the hearing impairment affects everyday communication.
Where and when communication goes well and where it is a problem.
Which problems are most important to either or both individuals.
Which problems they most wish to resolve (Preminger and Lind, 2012).
Together, these family-centered strategies set clear expectations about family involvement and engage the family unit in the discussion of the impact of the person’s hearing impairment on their communication.
Of course, the outcome of this discussion may lead to setting commonly shared goals. In doing so, we change the talk away from hearing and hearing impairment, and instead focus on communication. By extension, we value the input from both the person with hearing impairment and the family member, and set functional, family-centered outcomes from this questioning.
Clinicians identified that they encouraged the implementation of FCC by inviting family at the time of booking the appointment (often through an assumption—“Who will you bring with you?”) and reinforced this in the appointment confirmation letter that followed (Scarinci et al, 2018). The clinic measured the implementation of family-centered practices by keeping records of family-member attendance and analyzing this data as part of their organizational processes (e.g., quarterly reports, staff meetings, etc.).
They combined client and family member goals recorded on the client oriented scale of improvement (Dillon et al, 1997) and used them as reference points for comparison with exploration in future appointments. They also recorded notes regarding family satisfaction with the clinical service. The results from this study are in the final stages of analysis toward future publication.
Although the research in applying family-centered practices in adult audiologic rehabilitation is in its infancy, previous research has demonstrated the critical role of family in successful hearing care and its potential for managing third-party disability (Meyer et al, 2014, 2015).
Family-centered practice brings to the fore the impact of a person’s hearing impairment on those close to them and, in doing so, enhances the impact of the clinical intervention by involving those same people. The consequences of FCC-based clinical activity include a focus on functional outcomes and shared communication-focused goals. We urge you to think about how you can involve family more for ALL of your clients!
The authors acknowledge the support of the Oticon Foundation and the people with hearing loss, their family members, and the clinicians who worked with us on this research project.
This research received ethical approval from ethics committees at Flinders University and The University of Queensland, with informed consent provided by all participants involved in the study.
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