To tell or not to tell? Exploring the social process of stigma for adults with hearing loss and their families: introduction to the special issue

Abstract

Objective

Stigma has long been implicated as a reason why adults with acquired hearing loss are slow to seek help and for sub-optimal uptake of hearing devices. However, the field has not developed a comprehensive understanding of why stigma occurs, nor has it related this comprehensive knowledge to a theoretical framework.

Design

This special issue presents results from a two-phase, multi-method study to systematically investigate how stigma is experienced by adults with hearing loss and their families, how they manage it in everyday life, and how these experiences relate to the decision to wear hearing aids.

Study Sample

Phase 1 of the study involved 20 dyads of adults with hearing loss and their family members. Phase 2 involved 331 adults with hearing loss and 313 family members.

Results

Results of the study are presented in each of the subsequent papers that are part of this special issue. Results are mapped onto the Major and O’Brien model of stigma-induced identity threat in each paper.

Conclusions

This paper provides an introduction to the Special Issue and describes the methods for the overall study that is the focus of the papers within the issue.

Keywords:

• Audiology
• hearing loss
• stigma
• hearing aids
• affiliate stigma
• social process

Introduction to the special issue

Stigma has long been implicated as a reason why adults with hearing loss (HL) take an average of seven to ten years to seek help and why outcomes of hearing device fitting are less than optimal for some clients (Simpson, Matthews, Cassarly, and Dubno 2019; Wallhagen 2010). However, the field has not developed a comprehensive understanding of why stigma occurs, nor has it related this comprehensive knowledge to a theoretical framework. This special issue will address current gaps in research by providing a more comprehensive understanding of the stigmatising experiences of adults with acquired HL and their families in relation to both the HL itself and to the use of amplification.

What is stigma?

Stigma can be defined as a physical or social attribute that results in a person being categorised as “different” from others and discredited for that attribute (Goffman, 1963). Stigma is about much more than just being different: it is the product of a social process. It is not simply a matter of individual attributes – there are no fixed, a priori stigmatic attributes of a person (Smith, Atkinson, and Evans 2022). Rather, stigma is the product of social relations; an attribute becomes stigmatised in the way it is produced, contested, managed, ignored etc. in actual social settings (Smith et al. 2022). Goffman (1963), in his classic book on stigma, described the experiences of those who are stigmatised and the ways that they attempt to manage their identities in social life. Goffman distinguished between two types of stigma:

• Discreditable stigma: people whose stigmatised attribute is only occasionally apparent (e.g. person with HIV, person with epilepsy, person with HL)

• Discredited stigma: people with an obvious stigmatised attribute (e.g. wheelchair user, person with a facial disfigurement, person wearing a visible hearing aid)

Goffman (1963) argued that those with a discreditable stigma face a constant dilemma: to tell or not to tell; and in each case to whom, how, where, and when. If choosing not to tell, the stigmatised person may engage in acts of “covering” whereby they take great efforts to conceal a discreditable stigma by avoiding or limiting social contact, or avoiding equipment associated with signs of such behaviour (e.g. hearing aids).

Stigmatisation of an attribute can lead to both direct discrimination (e.g. rejection of a job application, life insurance, or admission to other countries etc.) and more insidious forms of discrimination (e.g. strained and uncomfortable social interactions, more constricted social networks, low self-esteem, chronic stress etc.) (Link and Phelan 2006).

Model of stigma

Expanding upon Goffman’s specification of stigma, Major and O’Brien (2005) recognised that “stigma is relationship- and context-specific; it does not reside in the person but in a social context.” (p. 395). They proposed an identity threat model of stigma (see Figure 1) that takes the view that a stigmatised attribute (e.g. HL) puts a person at risk of experiencing threats to their social identity within certain social environments/situations/occasions. This model integrates identity threat models of stigma (e.g. Crocker, Major, and Steele 1998; Major, Quinton, and McCoy 2002; Steele, Spencer, and Aronson 2002) with transactional models of stress and coping (e.g. Lazarus and Folkman 1984; Smith 1991). In particular, the model identifies the following factors as potentially affecting people’s appraisals of a situation as a threat to their social identity:

Figure 1. The Major and O’Brien (2005) identity-threat model of stigma (reproduced with permission).

1. Collective representations, that is, the perceptions of the person with the stigmatised condition or trait about the dominant stereotypes associated with their condition in the society in which they live.

2. Situational cues, referring to the impact of the specific social contexts on the potential threat to the identity of a person with the stigmatising condition or trait in that situation.

3. Personal characteristics which have been found to be relevant stigma experiences: (1) a person’s sensitivity to being stigmatised which is also referred to as stigma consciousness; (2) how much the person identifies with others who have the same condition or trait, referred to as group identification; (3) how much the person identifies with negative stereotypes associated with their condition, referred to as domain identification; and 4) the individual’s goals and motives generally and in specific situations.

In the model, these three factors A, B, and C affect whether the individual with a stigma (such as HL) appraises a situation as a potential threat to their social identity (D: identity threat appraisal). Stigma-induced identity threat occurs when an individual appraises the demands imposed by a stigma-relevant stressor as potentially harmful to their social identity and as exceeding their resources to cope with those demands (399). This appraisal results from an interaction between the collective representations that the individual brings to the situation, the perceived cues in the immediate situation that make stigma relevant to that situation, and their individual characteristics.

If a threat is evident, two types of responses are described:

• E. Non-volitional or involuntary responses where the person may experience physiological changes such as anxiety, embarrassment, or raised blood pressure.

• F. Volitional or voluntary responses where the person makes choices about how to respond to the threat. Examples for people with HL would be withdrawing from a situation, letting people know they are having difficulty, or asking for repetition/clarification.

How this process plays out is associated ultimately with longer term outcomes such as changes to self-esteem and health (G: Outcomes). In the case of HL, outcomes could be deciding to seek help for their HL and/or wearing amplification. The model is also recursive, in that an individual’s responses to identity threat may affect their future subjective understanding and appraisal of circumstances/situations. This may diminish or exacerbate the effects of stigma in the future.

Stigma, hearing loss, and hearing aids

There have been some recent reviews of the literature related to stigma of HL and hearing aids (HAs). Barker, Leighton, and Ferguson (2017) conducted a qualitative systematic review of the psychosocial experiences of adults with HL and their communication partners. “Stigma and identity” was one of four identified themes across the 12 studies reviewed. People with HL and their communication partners (typically spouses) reported stigmatising perceptions because of the HL and as a result of wearing HAs. They described the “tell or not to tell” dilemma and the risks to losing their social identities as a “normal” couple if they did disclose the HL (discreditable stigma) and/or wore HAs (discredited stigma). David and Werner (2016) also reviewed studies of stigma associated with HL and HAs in older adults. The most common stereotype was that HAs are associated with “old age” and the most common strategy employed was “not to tell”. In this review, the authors identified major methodological limitations to the research to date:

• Small sample sizes and participants not representative of the target population (e.g. Southall, Gagné, and Jennings 2010 included 10 adults with profound HI who were members of a peer-support group).

• 18 of the 21 studies used non-standardized tests of stigma.

• “The dearth of studies based on a theoretical framework regarding the concept of stigma” (68) such as the identity threat model in Figure 1.

• Not recognising stigma as a social process that is context-specific.

A subsequent review by Ruusuvuori et al. (2019), focusing on adults of working age, had similar findings and concluded that almost all studies thus far were limited to individual’s self-report (from questionnaires and interviews) without considering the relational process whereby stigma emerges and how it is dealt with in actual interactions.

Over the last 30 years, a number of studies have investigated the relationship between stigma, help-seeking and HA uptake (Franks and Beckmann 1985; Garstecki and Erler 1998; Jenstad and Moon 2011; Kochkin 2007; Meister, Walger, Brehmer, von Wedel, and von Wedel 2008; Southall, Gagné, and Jennings 2010; Van den Brink, Wit, Kempen, and van Heuvelen 1996; Wallhagen 2010). However, there is little consensus in terms of how it predicts HA uptake or success. Some studies have investigated self-stigma, or the internalising of society’s stigmatising beliefs (Corrigan and Watson 2002), as it relates to the attitudes of the individual with HL towards HL and HAs (Meyer, Hickson, Lovelock, Lampert, and Khan 2014). As this self-stigma can become a threat to an individual’s own identity (Major and O’Brien 2005), and in turn lead to maladaptive behaviours, individuals with HL may experience social isolation, denial and avoidance of help-seeking (Gagné, Jennings, and Southall 2009).

Working adults with HL can also experience ambivalence towards how they manage their HL within the workplace, particularly during the initial stages of having acquired a HA (Koskela et al. 2016). Other studies investigating stigma recognise that it is a social construct (Major and O’Brien 2005) and have identified the role that significant others’ play in possible stigmatisation. For example, Southall, Gagné, and Jennings (2010) showed that social peer-group support could be a positive factor in help-seeking and Van den Brink et al. (1996) found that the negative attitudes of significant others towards HAs were a barrier to HA uptake. In a large study conducted by Meyer et al. (2014) involving 307 adults with HL, the attitudes of both the person with HL and their significant others influenced hearing help-seeking and HA uptake. People who had sought help for their HL, even though they may not have agreed to HAs, reported that their significant others were less negative about HAs compared to those who had HL but had not sought help. Likewise, people who had agreed to HAs and wore them successfully reported more family support than those who had a HL but had decided not to get HAs (Hickson, Meyer, Lovelock, Lampert, and Khan 2014).

Affiliate stigma

Just as adults with HL can experience stigma, family members may also experience stigma-induced identity threat as a result of being associated with someone with a HL (Larson and Corrigan 2008). More specifically, the stigma internalised by family members, possibly as a result of the public stigma associated with HL, is known as “affiliate stigma” (Mak and Cheung 2008). Families with affiliate stigma may feel embarrassed, unhappy, distressed, or helpless about their affiliation with the stigmatised individual and therefore may perceive a negative influence on themselves. Affiliate stigma may also affect family relationships and lead family members to alienate themselves from the stigmatised individual, conceal their association, and withdraw from social situations (Mak and Cheung 2008). Importantly, in the context of family stigma, “family” is broadly defined as “two or more individuals who depend on one another for emotional, physical, and economic support”; thus family membership is self-defined and goes beyond just biological relationships (Hanson 2005, p.7).

The impact of stigma on family members was also observed in a series of studies exploring the impact of HL on family members, commonly referred to as “third-party disability”. For example, in a qualitative interview study exploring third-party disability, Scarinci, Worrall, and Hickson (2009a) found that spouses of older adults with HL expressed stigma-related embarrassment because of their partners’ HL: “I feel that thing of I’m telling him what to do but at the same time if I don’t tell him, then he could be in an embarrassing situation and I don’t like that because he’s not like that … I don’t want him to get embarrassed … It’s embarrassing…”. These findings suggest the potential for the existence of affiliate stigma in relation to HL and HAs, but this has yet to be systematically examined.

Research aims

In summary, there is some evidence of both adults with HL and their families experiencing stigma and some evidence that this experience of stigma influences the uptake and outcomes of hearing devices. However, the field lacks a comprehensive, theory driven understanding of this complex issue. In the research described in this Special Issue we address some of the limitations of previous work by interrogating how the Major and O’Brien (2005) model may apply to adults with HL using a range of methods (qualitative interviews, self-report surveys, Ecological Momentary Assessment, and Conversation Analysis). Major and O’Brien (2005) model was chosen because it attends to personal and group-specific factors as well as the broader socio-structural context to explore the implications of stigma for health and wellbeing. Current research at the intersection of social and health psychology has emphasised the importance of examining stigma in this way as it is ultimately a combination of group, personal, and situational factors that determine whether an individual perceives stigma in a given situation, whether stigma serves to erode or enhance their social identity, and whether it is implicated in their recovery/management of their health condition(s) (Haslam, Jetten, Cruwys, Dingle, and Haslam 2018). Stigma related to hearing loss has not yet been explored in this way, so this model provides a more comprehensive theoretical framework to explore stigma related to hearing loss and how it impacts outcomes such as help-seeking and HA use.

In this Special Issue, we also include insights about stigma related to HL and HAs from adults with HL, family members and, for the first time, Hearing Care Professionals (HCPs i.e. audiologists and audiometrists). HCPs were included to explore whether their perceptions of stigma related to HL and HAs were similar or different to adults with HL and their families/friends. Also, HCPs perception of stigma may impact the way they communicate with clients within audiology appointments and could thus have an indirect impact on outcomes such as HA uptake/use.

The series of papers in the Special Issue address the following key research questions:

1. When and how is stigma-induced identity threat: (a) experienced by older adults with HL and their families, and (b) responded to by older adults with HL and their families in daily life?

2. What are the associations between adults with HL and their families’ experiences of stigma-induced identity threat, their responses to stigma-induced identity threat, and hearing aid use?

Overview of method

These research questions were addressed using a sequential exploratory mixed-methods design across two phases. The first phase aimed to address questions 1(a) and (b), and included a combination of qualitative semi-structured interviews, Ecological Momentary Assessment (EMA), Conversation Analysis (CA), and self-report questionnaires to explore the phenomenon of stigma relating to adults with HL and their families in the context of the Major and O’Brien (2005) model. The second phase addressed each of the research questions in a quantitative cross-sectional study to explore: (1) the extent to which adults with HL and families of adults with HL (a) experience and (b) respond to stigma-induced identity threat in an international sample; and (2) what the associations were between adults with HL and families’ experiences of stigma-induced identity threat, responses to stigma-induced identity threat, and hearing aid use. A brief description of Phase 1 and Phase 2 is provided below, with more details of each method within the relevant, subsequent papers in this Special Issue.

Phase 1

Self-report measures

Copies of all questionnaires including the initial demographic questionnaire is provided in supplementary material.

The Hearing Handicap Questionnaire (HHQ; Noble, Tyler, Dunn, and Bhullar 2008) has 12 items measuring hearing-related participation restrictions using a 5-point Likert scale (1 = never, 5 = almost always). Example items are “How often does your hearing difficulty restrict the things you do?” and “How often do you feel tense or tired because of your hearing difficulty?” Scores can range from 12 to 60 with higher scores indicative of greater difficulty in everyday life.

The Stigma Consciousness Questionnaire (SCQ; (Vincent et al. 2017) has 10-items measuring stigma consciousness related to interactions with others on a 7-point Likert scale (0 = completely disagree, 6 = completely agree). Example items are “Stereotypes about hearing loss have not affected me personally” and “My being hearing impaired does not influence how people act with me”. Seven of the 10 items are reverse scored (Q1, 2, 4, 5, 6, 7, 9). Scores can range from 0 to 60 with higher scores indicative of higher levels of awareness that stigma influences their interactions.

The Hearing Loss Stigma (HLS; (Vincent et al. 2017)) questionnaire has 28 items measuring participants’ experiences of discrimination and prejudice associated with HL. The wording of the questions was modified and changed from “hearing problems” to “hearing difficulties” for this study. It contains 3 subscales: discrimination (13 items), disclosure (10 items), and positive aspect (5 items), with items measured on a 5-point Likert scale (0 = strongly disagree, 4 = strongly agree). Example items are “Sometimes I feel that I am being talked down to because of my hearing difficulties” and “People have been understanding of my hearing difficulties”. There are 9 questions that are reverse scored (Q3, 4, 7, 10, 14, 15, 19, 23, 24). Scores can range from 0 to 112 with higher scores indicating more stigma experiences.

The Group Identification Scale (GIS; (Sani, Madhok, Norbury, Dugard, and Wakefield 2015) has four items tapping into two elements of group identification: a sense of belonging to the group and a sense of commonality with other group members. The items were modified to be relevant to HL as follows: “I feel a bond with other people with hearing difficulties”, “I feel similar to the other people with hearing difficulties”, “I have a sense of belonging to groups of people with hearing difficulties”, and “I have a lot in common with other people with hearing difficulties”. Each item is scored on a 7-point Likert scale (1 = strongly disagree, 7 = strongly agree). Mean scores were calculated with higher scores indicative of stronger identification with others with HL.

The Hearing Attitudes in Rehabilitation Questionnaire Hearing Aids Stigma subscale (HARQ; Hallam and Brooks 1996) has 9 items measuring perceptions of stigma associated with wearing HAs. Response options are on a 3-point Likert Scale, from “not true” scored as “1” to “true” scored as “3”. Example items are “I think that if you wear a hearing aid people tend to ignore you” and “If I wear an aid, people will probably think I’m a bit stupid”. One item, Q9, is reverse scored. Scores can range from 9 to 27 with a score of 9–12 reported as “low hearing aid stigma”, a score of 13–15 suggesting “average hearing aid stigma”, and a total score of 16–27 indicating “high hearing aid stigma”.

The Warwick Edinburgh Mental Wellbeing Scale (WEMWBS; Tennant et al. 2007) has 14 items measuring both feelings and functioning aspects of mental wellbeing. Example items are “I’ve been feeling optimistic about the future” and “I’ve been dealing with problems well”. Responses are on a 5-point Likert scale (1 = None of the time, 5 = all of the time). Scores can range from 14 to 70 with higher scores indicating better wellbeing. The average population mean for the scale is 51 (Tennant et al. 2007). Two adults with HL and two family members had missing data for single items on the scale and for these items we used the recommended approach of giving the item the mean score of all data for that participant.

The Significant Other Scale for Hearing (SOS-HEAR; Scarinci, Worrall, and Hickson 2009b) contains 27 items assessing third-party disability in partners of older people with HL. To enable its applicability with all family members rather than only partners, the scale was modified (i.e. wording of questions changed from “partner” to “significant other”, as well as one question removed as it related to intimacy). The modified SOS-HEAR used for this study had a total of 26-items (e.g. “Because of my significant other’s hearing difficulties I have to repeat myself often” and “Because of my significant other’s hearing difficulties we do not communicate as often as I would like”). Responses are on a 5-point Likert scale (0 = no problem, 4 = complete problem). There are six subscales: Communication Changes (6 items), Communicative Burden (6 items), Relationship Changes (2 items), Going out and socialising (4 items), Emotional Reactions (5 items) and Concern for Partner (3 items). Average total scores between 0 and 4 are calculated for each subscale.

The Affiliate Stigma Scale (ASS; Chang, Su, and Lin 2016; Chang et al. 2015; Mak and Cheung 2008) has 22 items measuring the self-stigma of caregivers of people with various conditions (e.g. mental illness, intellectual disability, dementia). The questionnaire was modified to include the term “hearing difficulties” in the three subscales: affect (7 items; e.g. “I feel inferior because one of my family members has hearing difficulties”), behaviour (8 items; e.g. “Because I have a family member with hearing difficulties, I have reduced my contacts with friends and relatives”) and cognitive (7 items; e.g. “My reputation is damaged because I have a family member with hearing difficulties at home”). Items are rated on a 4-point Likert scale (1 = strongly disagree, 4 = strongly agree). Average total scores between 1 and 4 can be calculated for the total scale and for each subscale.

Prior to data collection, the measures and methods used in Phase 1 were mapped onto the Major and O’Brien (2005) model to ensure all elements of the model would be explored using at least one methodology (see Figure 2).

Figure 2. Phase 1 measures and methods mapped on to the Major and O’Brien (2005) identity-threat model of stigma.

Participants

Participants were recruited using strategies such as advertising through community organisations and social media platforms. Organisations that agreed to advertise the study were provided with information sheets and consent forms for potential participants. Interested participants contacted the research team via phone or email to find out more information. Alternatively, if they had already received an information sheet and consent form, they either emailed or posted their consent form and their contact information in a reply-paid envelope to the research team. Prior to participation, the research project was also explained verbally by the research team to ensure the adult with HL, family member, or HCP understood their involvement.

Twenty dyads (adults with HL and their family members) and 25 HCPs were recruited for the Phase 1 exploratory study using maximum variation and purposeful sampling to recruit a representative sample.

Adults with HL

Adults satisfied the inclusion criteria for participation if they were 50+ years old, had self-reported hearing difficulties in daily life, had a family member (any close companion) who could participate in the research with them, were proficient in English in daily life, and lived in the community (not residential care). Initially the group comprised 21 people, however participant 13 withdrew for health reasons, leaving 20 adults (7 female, 13 male; Age range 53–88 years). One participant reported their ethnic/cultural background as Indian and the remaining 19 reported being Anglo/Caucasian. Demographic information for each adult with HL is shown in Table 1.

Table 1. Demographic details and questionnaire scores for adults with HL (AHL) in phase 1 (n = 20).

Number	Age (years)	Gender	Better ear pure-tone average (dBHL)^a	Worse ear pure-tone average (dBHL)^a	Hearing aids	Attitude to hearing aids^b	HHQ score	SCQ score^c	GIS score	HLS score	HARQ score	WEMWBS score
AHL1	53	Female	21.25	48.75	no	0	36	21	1	24	10	69
AHL2	53	Female	15	17.5	no	5	34	21	4	38	14	44
AHL3	62	Male	30	37.5	no	5	38	30	2.75	28	9	46
AHL4	81	Female	68.75	76.25	yes	5	33	33	5	36	13	36
AHL5	75	Male	58.75	80	yes	2	36	25	3.50	38	11	41
AHL6	74	Female	21.25	75	no	0	50	42	2.50	53	17	44
AHL7	64	Male	30	35	yes	5	24	12	4.75	16	12	62
AHL8	76	Male	45	45	no (in the past)	−1	26	19	2.25	18	13	67
AHL9	84	Male	26.25	35	yes	0	28	27	5.50	31	17	57
AHL10	88	Male	62.25	63.75	yes	5	22	14	7	23	12	61
AHL11	62	Female	21.25	58.75	yes	5	36	34	6.25	46	11	57
AHL12	73	Male	25	35	yes	0	28	20	6.75	30	13	58
AHL14	75	Male	46.25	120	yes	4	39	32	3.25	10	12	64
AHL15	75	Male	30	32.5	yes	2	37	42	2.50	36	13	62
AHL16	66	Male	58.75	66.25	yes	5	39	27	4.50	54	13	69
AHL17	59	Female	48.75	51.25	yes	4	39	38	5.75	47	12	52.7
AHL18	54	Female	17.5	40	yes	5	32	20	5.50	38	12	51.5
AHL19	69	Male	50	51.25	no (in the past)	−4	38	28	5.50	43	14	51.5
AHL20	75	Male	16.25	25	no	−2	19	17	5.50	31	16	52.9
AHL21	69	Male	36.25	45	no	−2	37	38	4.50	73	17	56
Mean (SD) Range	69.4 (10.1) 53–88		36.4 (16) 15–68.75	51.9 (23.6) 17.5–120		−4-5	33.6 (7.3) 19–50	27 (9.2) 12–42	17.7 (6.6) 4–28	35.6 (14.7) 10–73	13.1 (9.5) 9–17	54.9 (9.5) 36–69

HHQ: Hearing Handicap Questionnaire; SCQ: Stigma Consciousness Questionnaire; GIS: Group Identification Scale; HLS: Hearing Loss Stigma questionnaire; HARQ: Hearing Attitudes in Rehabilitation Questionnaire (Hearing Aids Stigma subscale); WEMWBS: Warwick Edinburgh Mental Wellbeing Scale.

^aFrequency average at 500, 1000, 2000 and 4000 Hz.

^bHow would you rate your general attitude towards hearing aids? -5 to +5 scale response.

^cSCQ score obtained at session 1.

Four frequency (500 Hz, 1000 Hz, 2000 Hz and 4000 Hz) average hearing levels in the better ear ranged from 15 dB HL (for participant AHL2) to 68.8 dB HL (for participant AHL4). Three participants had average hearing levels in the better ear within the normal range (AHL 2, 18, and 20) (Stevens et al. 2013). AHL2 also had hearing levels within the normal range in the other ear but AHL18 and AHL20 had a hearing loss in the other ear (moderate for AHL18 and mild for AHL20) (Stevens et al. 2013). All reported hearing difficulties in everyday life on the HHQ, with scores ranging from 19 to 50.

Twelve of the 20 participants were regular HA wearers and nine were not. All 11 with HAs wore small behind-the-ear aids with thin tubing; six had receiver-in-the-canal aids. Ten of the 11 hearing aid wearers wore bilateral aids; AHL11 wore a HA in the right ear only. Of the eight non wearers, two had worn HAs in the past (AHL8 and 19) but rarely used them now and reported little benefit from them.

Family members

Family members satisfied the inclusion criteria if they were 18+ years old, had a close relationship to the adult with HL, were willing to attend the study appointments at the same time as the adult with HL, were proficient in English in daily life, and lived in the community (not residential care). One participant reported their ethnic/cultural background as Indian and the remaining 19 reported being Anglo/Caucasian. There were 16 female and 4 male family members ranging in age from 18 to 82 (see Table 2). Eight family members had HL themselves.

Key demographic details of the dyads of adults with HL and their family member are shown together in Table 3.

Table 2. Demographic details and questionnaire scores for family members (FM) in phase 1 (n = 20).

Number	Age (years)	Gender	Relation-ship to AHL	Better ear pure-tone average (dBHL)^a	Attitude to hearing aids^b	SOS-HEAR score: communication changes	SOS-HEAR score: communicative burden	SOS-HEAR score: relation-ship changes	SOS-HEAR score: going out and socialising	SOS-HEAR score: emotional reactions	SOS-HEAR score: concern for partner	ASS score	WEMWBS score
FM1	20	Female	Child	3.75	0	0.2	0	0.5	0	0.2	0	1.1	50
FM2	18	Female	Child	0	4	0.7	0.5	0.5	0.25	1.2	0.3	1.8	51
FM3	67	Female	Partner	16.25	5	0.8	0.3	0	0.5	0.6	1.3	1.2	62
FM4	82	Male	Partner	106.25	2	2.3	0.7	1	3	1.4	2.3	2.2	43
FM5	80	Female	Partner	41.25	−1	2.8	3.3	2	1.5	3	2.7	1.4	32
FM6	65	Male	Partner	8.75	4	1.8	0.2	0	0.25	0.6	0.7	1.6	53
FM7	64	Female	Partner	28.75	−1	0.5	0	0	0.25	0.4	0	1	54
FM8	75	Female	Partner	37.5	3	1.2	0.3	0	1	1.2	0	1	62
FM9	74	Female	Partner	35	5	1.2	0.7	0.5	0.5	0.6	1	1.2	53
FM10	60	Female	Child	30	−3	0.5	0.5	0	0	0	0.3	1	59
FM11	58	Male	Partner	17.5	3	0.5	0	0	0.25	0	0	1	66
FM12	74	Female	Partner	37.5	5	0.2	0.2	0	0.25	0.2	0.7	1.6	51
FM14	74	Female	Partner	10	1	2.2	1.7	0.5	1.75	0.4	0.7	1.1	51
FM15	71	Female	Partner	22.5	5	0.3	0	0	0	0.2	0.3	1	50
FM16	62	Female	Partner	Not tested	0	2.5	1.3	2	0.5	2	2	2	57
FM17	61	Male	Partner	7.5	0	0.8	0.2	0	0	0.2	0.3	1.1	53
FM18	74	Female	Aunt	Not tested	5	0.2	0	0	0	0	0	1	56
FM19	64	Female	Partner	17.5	−5	2.5	2.5	2	2.5	2.6	2.3	2.2	48
FM20	65	Female	Partner	12.5	−2	1.8	0.5	0	0	0.4	0.3	1	68
FM21	69	Female	Partner	18.75	4	1.8	1	0	0.25	1.2	1	1.9	61
Mean (SD) Range	63.9 (16.7) 18–82			22.9 (23.8) 0–106.3	−5 to 5	1.2 (0.9) 0.2–2.8	0.7 (0.9) 1–3.3	0.5 (0.7) 0–2	0.6 (0.9) 0–3	0.8 (0.9) 0-3	0.8 (09) 0-2.7	1.37 (.44) 1-2.2	54 (8.1) 32-68

Participant numbers of FMs match the AHL numbers in Table 1.

SOS-HEAR: Significant Other Scale for Hearing; ASS: Affiliate Stigma Scale; WEMWBS: Warwick Edinburgh Mental Wellbeing Scale

^aFrequency average at 500, 1000, 2000 and 4000 Hz.

^bHow would you rate your general attitude towards hearing aids? −5 to +5 scale response.

Hearing care professionals

A total of 25 people (19 female and 6 male) who had experience working with adults with HL and their families within the last 12 months and were proficient in English were recruited. They ranged in age from 25 to 65 with a mean of 39.2 years (SD = 10.8). There were six audiometrists and 19 audiologists and their mean work experience was 10.7 years (SD = 9.6; range = 1–40). Their four frequency better ear pure-tone average ranged from −2.5 to 46.3 dB HL (Mean = 6.9; SD = 9.7). Three of the 25 wore HAs themselves.

Procedure

Ethical clearance was obtained from The University of Queensland’s Human Research Ethics Committee (n: 2019001869). Participants were recruited throughout Australia using a variety of strategies such as advertising through hearing and healthcare clinics and community organisations for adults with HL, The University of Queensland Communication Research and Ageing Mind Initiative Registries, social media platforms (e.g. Facebook, LinkedIn, Twitter), word-of-mouth, and professional contacts. All participants provided full written consent and each received an AUD50 gift voucher upon completion of the data collection.

Table 3. Key demographic details of the dyads in phase 1 (n = 20).

AHL number	Age (years)	Gender	Better ear pure-tone average (dBHL)^a	Attitude to hearing aids^b	FM number	Age (years)	Gender	Relation-ship to AHL	Better ear pure-tone average (dBHL)^a	Attitude to hearing aids^b
AHL1	53	Female	21.25	0	FM1	20	Female	Child	3.75	0
AHL2	53	Female	15	4	FM2	18	Female	Child	0	5
AHL3	62	Male	30	5	FM3	67	Female	Partner	16.25	5
AHL4	81	Female	68.75	2	FM4	82	Male	Partner	106.25	5
AHL5	75	Male	58.75	−1	FM5	80	Female	Partner	41.25	2
AHL6	74	Female	21.25	4	FM6	65	Male	Partner	8.75	0
AHL7	64	Male	30	−1	FM7	64	Female	Partner	28.75	5
AHL8	76	Male	45	3	FM8	75	Female	Partner	37.5	−1
AHL9	84	Male	26.25	5	FM9	74	Female	Partner	35	0
AHL10	88	Male	62.25	−3	FM10	60	Female	Child	30	5
AHL11	62	Female	21.25	3	FM11	58	Male	Partner	17.5	5
AHL12	73	Male	25	5	FM12	74	Female	Partner	37.5	0
AHL14	75	Male	46.25	1	FM14	74	Female	Partner	10	4
AHL15	75	Male	30	5	FM15	71	Female	Partner	22.5	2
AHL16	66	Male	58.75	0	FM16	62	Female	Partner	Not tested	5
AHL17	59	Female	48.75	0	FM17	61	Male	Partner	7.5	4
AHL18	54	Female	17.5	5	FM18	74	Female	Aunt	Not tested	5
AHL19	69	Male	50	−5	FM19	64	Female	Partner	17.5	−4
AHL20	75	Male	16.25	−2	FM20	65	Female	Partner	12.5	−2
AHL21	69	Male	36.25	4	FM21	69	Female	Partner	18.75	−2
Mean (SD) Range	69.4 (10.1) 53–88		36.4 (16) 15–68.75	−5 to 5	Mean (SD) Range	63.9 (16.7) 18–82			22.9 (23.8) 0–106.3	−4 to 5

^aFrequency average at 500, 1000, 2000 and 4000 Hz.

^bHow would you rate your general attitude towards hearing aids? −5 to +5 scale response.

A flowchart for data collection is shown in Figure 3. All participants either had a hearing test by a member of the research team (a qualified audiologist) or provided a copy of their most recent audiogram. Air conduction threshold levels for at least four frequencies were recorded for both ears.

Figure 3. Flowchart of study procedure Phase 1.

Adults with HL and family members participated in two sessions with a member of the research team, two weeks apart. In between the two sessions, they were provided with a Motorola phone and a video camera to take home. They were asked to video record one to four conversations in everyday life (e.g. at home, in the car, at work, in a social group meeting) between themselves and their family members/friends/colleagues (who also consented to the recording). Further details about this data collection and the Conversation Analysis (CA) methodology used to investigate the data are in Ekberg et al. (this issue). Also, during this 2-week period adults with HL were asked to complete at least three surveys per day about the everyday listening events they were in. The survey completed on the Motorola phone was specially designed for this study and contained up to 17 questions about each listening event, including questions about possible stigma experiences during these events. Full details about this data collection are in Timmer et al. (this issue).

As can be seen in Figure 3, the vast majority of surveys and the interviews about stigma experiences were conducted in session 2 with adults with HL and their family members. The rationale for this was that, as much as possible, we wanted to obtain naturally occurring conversations and experiences from participants’ everyday lives without them being influenced by the kinds of questions in the surveys and interviews. In addition, to investigate potential reactivity (i.e. where participating in research changes awareness of a phenomenon), we administered the SCQ to adults with HL at both sessions 1 and 2.

HCPs, adults with HL and their family members participated in qualitative in-depth semi-structured interviews with a member of the research team, exploring their perceptions/experiences of stigma related to HL and HAs. Details about the interviews are contained in Nickbakht et al. and Scarinci et al. (this issue). Interviews with adults with HL and family members were conducted face-to-face, and interviews for HCPs were either face-to-face or via Zoom/telephone when the data was collected during COVID-19 lockdown.

Phase 1 self-report questionnaire results

Adults with HL: When participants were asked to rate their attitudes to HAs on a scale from −5 (negative) to +5 (positive), 13 gave positive ratings, four recorded a neutral response of 0 and three were negative. Similarly, scores on the various other self-report surveys were characterised by their variability. Correlations between better ear pure-tone average and all self-report surveys were evaluated using Spearman’s Rho and significant correlations were found with the GIS only; higher average hearing levels were associated with stronger identification with other people with HL (rho = 0.51, p < 0.05). Likewise, correlations were explored between HHQ scores and all self-report surveys coefficients and three significant relationships were found. Higher self-reported hearing-related participation restrictions were associated with higher levels of stigma consciousness using the SCQ (rho = 0.80, p < 0.01) and higher levels of HL stigma using the HLS (rho = 0.52, p < 0.05).

A Wilcoxon signed rank test showed that SCQ test scores were significantly lower at session 2 compared to session 1 (Z = −2.04; p < 0.05) indicating that participants were less conscious of stigma after they had video-recorded conversations and responded to surveys in everyday life.

Family members: As a group, family members gave had a similar range of responses to the question about their attitudes to HAs: 12 family participants gave positive ratings, three recorded a neutral response of 0, and 5 were negative. For 15 dyads, their attitudes were similar (either both positive/neutral, or both negative/neutral). Of the remaining 5 dyads, in three cases (#5,7,10) the adults with HL had a positive attitude and the family member negative. In two cases (#8, 21) the family member reported a positive attitude to HAs and the adult with HL was negative about them. There was little evidence of affiliate stigma on the ASS or third-party disability on the SOS-HEAR reported by the family members.

The first four papers of this Special Issue will describe the other findings from Phase 1 (including Nickbakht et al. and Scarinci et al. describing the results from the semi-structured interviews, Timmer et al. describing the EMA results, and Ekberg et al. describing the CA findings). The key findings from Phase 1 were mapped onto the Major and O’Brien model (see Discussion sections of each of the above-listed papers) and informed the selection and design of questions for two online surveys used in Phase 2 of the study.

Phase 2

Participants

Phase 2 involved 331 adults with HL and 313 family members, evenly distributed across Australia, UK, and US. Of the people with HL, 55% were male, 68% were not currently working, and mean age was 65 years. Of the family members, 21% were male, 48% were currently working, and mean age was 49 years. Both samples had a White majority (92% and 85% of people with hearing loss and family members, respectively). See Meyer et al. (this issue) for more detail on participant demographics.

Procedure

Participants were recruited via Qualtrics Online Sample. Each participant completed an online survey that incorporated a combination of published questionnaires and multiple response questions informed by Phase 1 findings. Completion of surveys is rewarded by Qualtrics according to their established policies and procedures (e.g. in the form of points; the points gained per survey equates to roughly $2). Data were analysed using a combination of descriptive statistics and mediation analyses, separately for adults with HL and families.

Papers by Meyer et al. (a and b) in this Special Issue present the results from Phase 2 of the study for adults with HL and family members respectively.

In the final paper we summarise the findings of both phases in relation to the research questions. We also discuss how the results fit to the Major and O’Brien model and whether the model is useful for understanding stigma in the context of adults with hearing loss. Clinical implications, limitations of the study, and directions for future research are also discussed here. It is our hope that this Special Issue will expand the field’s understanding of the stigma experiences of adults with HL and their significant others and will lead to new approaches to address it in clinical practice. As succintly stated by an adult with HL in this study:

I think from my point-of-view, I just want to be treated as a normal person, as a person that, look, you’re just going to have a conversation with me and that’s it. [AHL7]

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Hearing Industry Research Consortium.