Family-Professional Relationship

Just like in PCC, building an effective therapeutic relationship is crucial to the delivery of FCC; however, this therapeutic relationship extends beyond the individual with hearing impairment. Some of the key concepts behind the development of the family-professional relationship are equality, mutuality, and teamwork (Epley et al., 2010). Importantly, in the development of an effective family-professional relationship, audiologists need to be cognizant of cultural responsiveness and respectful and sensitive to family needs and perspectives with honesty and active listening (Epley et al., 2010). Developing a trusting therapeutic relationship has been specifically emphasized in audiologic rehabilitation given the identified trust issues that patients have reported in audiologic service provision (Grenness et al., 2014b).

Individualized Family Services

Finally, when providing family-centered services, it is essential that audiologists provide services in assessment, goal setting, and intervention that match the unique needs and resources of each family (Allen & Petr, 1996). These individualized family services include services from both audiologists and other patients and families, such as support groups (Epley et al., 2010).

The Rationale for Family-Centered Care

Now that the common principles and practices of FCC have been proposed, it is important to discuss how and why it can be applied to adult audiologic rehabilitation. The rationale for and implementation of FCC in this population is twofold: first, family members are also affected by hearing impairment, and could therefore also benefit from rehabilitation; second, the inclusion of family members in adult audiologic rehabilitation equips them to support the rehabilitation journey of the individual with hearing impairment.

Addressing the Impact of Hearing Impairment on Family Members

Hearing impairment affects communication in not only the person with the loss but all those involved in the communication interaction. The impact of hearing impairment on others is commonly referred to as a third-party disability (World Health Organization [WHO], 2001). A third-party disability is defined as the disability experienced by family members as a result of their significant other’s health condition (WHO, 2001).

Scarinci, Worrall, and Hickson (2008, 2009a, 2009b, 2012) initially explored third-party disability in spouses of older adults with hearing impairment through a series of mixed methods studies, and found that spouses experience a range of effects on their everyday lives as a result of their partners’ hearing impairment (Scarinci et al., 2008), with the majority of spouses reporting some degree of third-party hearing disability, and communication difficulties between the couple being the central source of stress (Scarinci et al., 2012). More recently, there have been a number of reviews that have specifically examined the impact of hearing impairment on communication partners, highlighting a broad range of impacts (Kamil & Lin, 2015; Vas, Akeroyd, & Hall, 2017). Vas et al. (2017) summarized these impacts across the domains of auditory (i.e., listening, communication, and speaking), social (i.e., relationships, isolation, social life, occupation, and interventions), and self (i.e., effort and fatigue, emotions, identity, and stigma).

Auditory Impacts

As a result of hearing impairment, family members have reported a range of auditory impacts, including tension over the need to repeat (Stephens, France, & Lormore, 1995; Scarinci et al., 2008), and coping with the loud volume of the television (Kelly & Atcherson, 2011; Lormore & Stephens, 1994; Scarinci et al., 2008). Family members have also reported third-party disability as a result of having to raise the volume of their voice when communicating (Govender, Maistry, Soomar, & Paken, 2014; Scarinci et al., 2008, 2012).

Social Impacts

Self Impacts

Family members have reported increased feelings of frustration (Hallam et al., 2008; Stephens et al., 1995), stress (Knutson et al., 2006), loneliness (Knutson et al., 2006), emotional reactions (Preminger & Meeks, 2012; Scarinci et al., 2008; Scarinci et al., 2009a), worry (Scarinci et al., 2009a), and anxiety (Knutson et al., 2006). These emotional reactions to the hearing impairment may not only be linked to increased communication difficulties, but also increased dependence and caregiving issues (Knussen et al., 2008; Stephens et al., 1995). For example, family members have reported experiencing burden over increased roles and responsibilities in the family including having to answer the telephone on behalf of the person with hearing impairment (Scarinci et al., 2008; Vas et al., 2017) and having to act as an interpreter during group conversation (Morgan-Jones, 1998; Scarinci et al., 2008)

As a result of the adult’s hearing impairment, family members have also reported poor physical, mental, and social health (Wallhagen, Strawbridge, Shema, & Kaplan, 2004), reduced quality of life (Kelly & Atcherson, 2011), low mood (Preminger & Meeks, 2010a), distress (Tolson, Swan, & Knussen, 2002), and negative impacts on their social life (Kelly & Atcherson, 2011; Knutson et al., 2006; Lormore & Stephens, 1994; Preminger & Meeks, 2012; Scarinci et al., 2008; Scarinci et al., 2009a, 2009b). These impacts on the family member may result in family withdrawing from communication interactions with the individual with hearing impairment, leading to increased hearing disability and increased levels of frustration and isolation within the family (Scarinci et al., 2012).

Family Member Support for the Patient with Hearing Impairment

Involving family members in audiologic rehabilitation through a family-centered model of health care also has the advantage of empowering participants to provide support for the individual with hearing impairment. This support can be provided from initial contact through to assessment and rehabilitation and counseling. Support from family is in no way meant to devalue the patient themselves nor take away their autonomy. Rather, FCC values both the patient and their family member equally; although family member support is strongly advocated, audiologists must ensure that nothing is taken away from the patient.

Indeed, some patients may indicate a clear preference for making health care decisions independently, while others may rely on the support and advice from others. A recent population-based survey conducted in the United States reinforced the heterogeneity of older adults’ health care preferences, with participants indicating a wide range of preferences regarding how they manage their health care (Wolff & Boyd, 2015). Interestingly, the survey showed that while approximately two-thirds of older adults (69.4%) prefer to self-manage their health care, one-third indicated a preference for comanaging (19.6%) or delegating health care decisions (11%) to doctors and family or close friends (Wolff & Boyd, 2015). This study concluded that the implementation of FCC requires careful consideration and respect for individual decision-making preferences and the broader social and family context in which older adults manage their health (Wolff & Boyd, 2015).

Research has indicated that families play a key role in the uptake and successful use of hearing aids (Knudsen et al., 2010; Meyer & Hickson, 2012; Meyer, Hickson, Lovelock, Lampert, & Khan, 2014; Hickson, Meyer, Lovelock, Lampert, & Khan, 2014). Specifically, the decision to seek help for hearing impairment is influenced not only by the attitude of the individual, but also by the beliefs and support of their family and friends (Meyer & Hickson, 2012; Meyer et al., 2014). Further, family member input influences the rehabilitation decisions of patients (Laplante-Lévesque, Hickson, & Worrall, 2010a), and the positive support of family members has been shown to be strongly associated with successful hearing aid outcomes, with successful hearing aid users being more likely to think their family had a positive attitude towards their hearing aids (Hickson et al., 2014).

Implementation of Family-Centered Audiologic Rehabilitation

How Family Centered Is Current Practice?

Further analysis of the video observations showed that when present in appointments, family members only contributed to 13% of the total utterances in the appointments (Ekberg et al., 2015), with audiologists tending to address their questions only to the individual with the hearing impairment rather than also encouraging input from family members. This is despite family members demonstrating a desire to contribute to the discussion by answering questions on behalf of the individual with hearing impairment or directly asking the audiologist questions (Ekberg et al., 2015).

Despite this low rate of attendance and active contribution, audiologists have reported a favorable attitude towards FCC in adult audiologic rehabilitation (Meyer et al., 2015). Specifically, audiologists have acknowledged the value of a true partnership with families such that a shared understanding and responsibility for managing the hearing impairment could be established and families can subsequently play an active role in the rehabilitation process (Meyer et al., 2015).

How Can Family-Centered Care Be Implemented in Adult Audiologic Rehabilitation?

The well-acknowledged impacts of hearing impairment on family members highlight the importance of including them in audiologic rehabilitation and emphasize the appropriateness of FCC in this population. In practice, this involves acknowledging and identifying the communication difficulties experienced by both the patient and their family and using these findings to inform goal setting and outcome measurement for both parties. Audiologists who work collaboratively with patients and families can help increase awareness of the impact of the hearing impairment on their everyday lives and encourage both parties to view the disability as a family problem. This may encourage all involved to see themselves as a team, increasing the likelihood that they will engage in joint problem solving and employ active coping strategies and rehabilitation options (Scarinci et al., 2013). Once engaged in audiologic care, audiologists have identified a range of possible family member roles in treatment, including: (a) having input into the assessment, decision making, and goal setting process; (b) receiving information provided during the consultation; (c) supporting the patient’s rehabilitation goals; and (d) providing emotional support (Meyer et al., 2015).

Family Member Input into the Assessment, Decision Making, and Goal Setting Process

As active members of the family-centered rehabilitation team, family members can provide valuable information about the patient’s hearing impairment, and the impact of the hearing impairment on the family as a unit. This perspective provides a valuable addition to the patient’s self-report of communication difficulties and allows a more thorough assessment of the everyday impacts of the hearing impairment on family communication and dynamics (Steinberg, 1993).

Finally, the contribution of family members to the assessment process also means that they can be involved in setting mutually beneficial goals for not only the person with the hearing impairment, but also for themselves. Family participation in goal setting is a notion supported by the principles of FCC. Given the family is the unit of attention in FCC, shared goal setting is a means of addressing the needs of individuals within the family and the family unit as a whole.

Receiving Information

In addition to contributing to the assessment and goal-setting process, family members also bring a second set of ears to appointments and can assist patients in absorbing and recalling information after the appointment (Ellingson, 2002; Jansen et al., 2010; Wolff & Roter, 2008). Audiologists have described a range of specific information that is important for families to process, including feedback about hearing test results, recommendations for intervention and/or hearing aid options, instructional information about hearing aid management and use, and the expected outcomes of rehabilitation (Dillon, 2012; Meyer et al., 2015).

Supporting the Patient’s Rehabilitation Goals

Following the assessment and decision-making process, family members play an ongoing role in supporting the patient with hearing impairment in achieving his or her goals. In addition to hearing aids, communication strategies are an important component of audiologic rehabilitation. The involvement of family members has key advantages to the training and implementation of these skills (Meyer et al., 2015).

In the field of adult audiologic rehabilitation, communication strategies are typically described as verbal, nonverbal, and maladaptive. Verbal and nonverbal strategies, such as clarification requests, requests for repetition, lipreading, and positioning strategies aim to improve communication and reduce the negative effects of hearing loss. However, maladaptive strategies, such as pretending to hear, avoiding communication situations and guessing what others say may also be used and could detract from or inhibit the process of communication (Demorest & Erdman, 1986). Interestingly, research has shown that the use of maladaptive communication strategies contributes to lower quality of life in adults with hearing impairment (Hallberg, Hallberg, & Kramer, 2009). In many situations, family members play a key role in enhancing the communicative success of adults with hearing impairment due to the frequency of their communication and their ability to increase confidence and satisfaction with communication exchanges (Heine, Erber, Osborn, & Browning, 2002). Once engaged in audiologic rehabilitation, family members can support the patient not only in managing their hearing devices, but also in using communication strategies to improve everyday communication (Hickson, Worrall, & Scarinci, 2007a, 2007b).

Given the known relationship between the use of maladaptive communication strategies and general well-being, FCC provides a unique opportunity for the audiologist to work with the individual with hearing impairment and their family to discuss the use of current strategies, determine which are working effectively, and jointly develop new approaches to implement in everyday communication. Patients and family members can reflect upon the relative success of communication strategies being used within the family, and both parties can be trained in techniques to prevent or resolve communication breakdowns (Heine et al., 2002). For example, families could be encouraged to use a slower rate speech, modify their speech in response to background noise, reduce distances to ensure face-to-face communication, and gain the person’s attention before communicating with them (Dillon, 2012; Hickson et al., 2007a, 2007b; Preminger & Meeks, 2010b). Active involvement of family in the adjustment and training process is an important contributor to successful audiologic rehabilitation (Hallberg et al., 2009).

In particular, research has indicated that providing specific training and opportunities to practice strategies with communication partners within the clinical setting are more effective than simply asking family to alter their speech (Caissie et al., 2005). Further, it is important to note that the broader family unit, including adult children, grandchildren, friends, and neighbors, could benefit from this training to maximize communicative success across different environments (Montgomery, 1993).

Emotional Support

Benefits of Family-Centered Care for Stakeholders

For many decades, the general health care literature has demonstrated positive outcomes of FCC for patients, families, and health care professionals alike. Most recently, a review of systematic reviews in the field of patient-centered care and FCC demonstrated that patients experience improved health care knowledge, enhanced skills to manage self-care, and increased satisfaction and quality of life (Park et al., 2018). The review also showed that families experience reduced stress, anxiety, and depression, and improved satisfaction and relationships with health care providers as a result. Health care providers also experienced positive effects of FCC, including improved job satisfaction and confidence, higher quality of care, and reduced stress and burnout (Park et al., 2018). Benefits of FCC further extend to clinicians and businesses. Use of FCC has been linked with greater job satisfaction (Lein & Wills, 2007) and lower rates of medical malpractice claims (Levinson, Roter, Mullooly, Dull, & Frankel, 1997).

Outcomes of Family-Centered Audiologic Rehabilitation for Individuals With Hearing Impairment, Family Members, and Clinicians

Patients whose families are involved in their hearing rehabilitation are more likely to be successful hearing aid users (Hickson et al., 2014), have increased confidence in managing hearing (Meyer et al., 2014), and have an emotional-support person who can assist with correct use and care of assistive hearing devices (Manchaiah & Stephens, 2013). Patients with family members involved in their hearing care also experience greater satisfaction with medical care and adherence to treatment (Stewart et al., 2000).

Similarly, family members of people with hearing impairment experience benefits from FCC; primarily, decreased third-party disability (Habanec & Kelly-Campbell, 2015), and increased quality of relationships and life (Seniors Research Group, 1999). Kamil and Lin’s (2015) systematic review summarized the positive outcomes of FCC on family members, involving the provision of hearing aids, cochlear implants, and communication training programs. These benefits included an improved ability to enjoy life (Hickson, Worrall & Scarinci, 2006; Kramer, Allessie, Dondorp, Zekveld, & Kapteyn, 2005; Mo, Lindbæk, & Harris, 2005), improved quality of life (Brooks, Hallam, & Mellor, 2001; Kennedy, Stephens, & Fitzmaurice, 2008; Kramer et al., 2005; Stark & Hickson, 2004), reduced stress (Preminger & Meeks, 2010b), reduced perception of hearing hassles (Tolson et al., 2002), decreased negative affect (Preminger & Meeks, 2010b), and improved social life (Kennedy et al., 2008).

Positive outcomes have also been reported across the areas of improved empathy and emotions towards the individual with hearing impairment (Mo et al., 2005), more favorable attitudes towards hearing aids and communication education (Kramer et al., 2005), and greater understanding of the hearing disability (Preminger & Meeks, 2010b; Stephens, Kerr, & Jones, 2004). Family members have also reported improved patience (Stephens et al., 2004), reduced third-party disability (Preminger & Meeks, 2010b), and reduced hearing hassles (Tolson et al., 2002).

Finally, audiologists have also reported clear benefits to the involvement of families in audiologic rehabilitation, with family participation in rehabilitation seen as a facilitator of good hearing aid management and improved patient satisfaction (Meyer et al., 2015). Studies have also shown that as a result of family member involvement, patients experience reduced communication difficulties and communicative burden (Kennedy et al., 2008), including one-on-one communication and group conversation (Brooks et al., 2001), improved ability to communicate in background noise (Stark & Hickson, 2004), reduced need for repetition (Stark & Hickson, 2004), reduced difficulties watching television and listening to the radio (Brooks et al., 2001; Stark & Hickson, 2004), and enhanced communication skills (Stephens et al., 2004).

Clinical Implications of Family-Centered Care

Adopting an FCC approach in the clinic has a range of implications for patients, family members, and clinicians alike. Chief among these is the consideration of psychosocial factors contributing to the success of hearing rehabilitation. FCC enables clinicians to consider their clients holistically, rather than from the traditional site-of-lesion perspective that focuses on type and severity of the hearing impairment (Singh et al., 2016). In doing so, clinicians can increase the quality of information they receive from patients and families, creating rehabilitation opportunities with greater suitability and likelihood of compliance, and therefore greater likelihood of success.