Seven main phases and various stages were identified. shows the CPs' perspective on their journey through their partners' hearing loss. In this section, we present the phases and stages of the CP's journey in a logical order. Whilst there was some temporal order to participants' narratives, not all the CPs reported them in this order. For example, many participants went back and forth while talking about a particular theme. However, those who consistently maintained the temporal order are the ones who usually had prepared notes for this interview after reading the participant's information sheet. This may suggest that there is generally a temporal order to participants' reported stories; however, their ability to remember the fine details and articulate the experiences may have influenced this. Based on data from this study and also our previous studies on patient's journey, we suggest that there is a journey through this process. For this reason, we decided to present them in a linear fashion using process mapping, even though not all reported them in such a systematic manner. In addition, some stages were reported in more than one phase. For example, role sharing and relationship dynamics that were reported both in initial and later phases of the journey. CPs talked more about contemplation, awareness, adaptation, and resolution phases compared to other phases (i.e., persuasion, validation, and rehabilitation). Moreover, the reported experience of one of the CPs (participant 9) was quite unique compared to the others. In this case, the CP had grown up through her father's hearing loss rather than starting to notice the hearing loss when the PHI initially started developing it. In that case, whilst she did not report a contemplation stage, she reported how she started becoming aware of her father's hearing loss as she got older and also the reported experiences in all the other phases.
Communication partner's perspectives of their journey through their partners' hearing impairment (stages identified only by CPs are highlighted in yellow text, and stages which are reported in multiple phases are highlighted with red outline).
3.1. Contemplation (or What Is Going On?)
In this phase, CPs may start noticing the PHI's communication difficulties and reduced social interactions. This may sometimes result in feeling embarrassed, angry, and frustrated. Initially, the CPs might attribute some of the problems noticed to possible cognitive impairments, attentions and concentration. Moreover, the CPs may also start making some accommodation, to the PHI's hearing loss.
The following statement made by the CP of a PHI shows how, in the initial phase of the PHI's hearing loss, the CP may think that the communication difficulties noticed were due to attention and concentration rather than to poor hearing. This highlights the fact that the identification of hearing loss is not straightforward.
Initially I thought a lot of it was due to his attention…! I could say something to him and if it was not of his interest, I could see that he has not heard it, or he will repeat what I said five minutes later, and I would say…..I just told you that..! …. Even though I had experience with deafness due to others in the family, I could not realise he had problem straightaway.
In this phase, CPs become aware that the PHI has genuine difficulties with their hearing. This may be by noticing clear changes in the PHI's communication behaviour, PHI's dependency on other senses, noticing that PHI was not hearing the smoke alarm, telephone, and so forth, and more importantly, by noticing changes in the family dynamics. They may start nagging the PHI (or indirectly persuading the PHI to seek help) or provide support and encouragement, and they may start acting as an interpreter for the PHI. However, this new role of acting as an interpreter may become overwhelming.
This description below shows how a CP confirmed their speculation about the PHI's hearing loss (elements of contemplation and awareness phases). It also highlights how this awareness may change the family dynamics.
I can remember a few things which can put the picture together…The first thing I noticed was that he was shouting on the telephone. I could be in there with the doors shut and could hear him. I say to him, do you realise that you were shouting on the telephone?, I do not think I was.. You cannot say anything to that one…… and the other thing is shouting at public places, for example, shouting in the restaurant.
….after it was confirmed to me with these observations, I told my children what I noticed and they agreed, especially the elder daughter, and she started making some adjustments…
The following statement made by a CP highlights the change in their communication roles, a change in family dynamics and the dependency of the PHI on the CP for everyday activities in relation to communication.
After I started noticing his difficulties…I almost started acting like his secretary…it could be very tiring sometimes…especially later in the day…!!
After CPs become aware of the PHIs hearing loss, they often start making attempts to make the PHI aware of their communication problems. In addition, they may also start searching for information related to hearing loss and start persuading them to seek help. In the initial stages, this could be indirect. However, there could be some triggering factors for the CPs which make them start directly persuading the PHI to seek help.
The following quote confirms that the CPs could act as drivers (or facilitators) to the PHI seeking help. The CP's expression in this makes it clear that this task is not always straightforward. They may start with indirect persuasion and move to more direct persuasion as time progresses.
I have to be very diplomatic you know. ….. [Chuckle]…. I got a bit of adverse reaction on one occasion. He said to me speak up you are mumbling, and I said to him you are not hearing me properly and asked him to get his hearing checked. ….. [Chuckle]…. He said to me ‘you get your hearing checked', you don't hear something that I say to you… Once he said that I have to back off for a while obviously….work with it for a while and then change my approach…
…….I think I nagged him to such an extent that he went to get a hearing test… he was not hearing the telephone, once he did not hear the alarm and ……once it got to that stage I have to tell him..!!
This phase was not widely discussed by the CPs. However, in this phase, CPs mainly confirm whether or not the PHI had hearing loss. The results of hearing assessment of the PHIs may or may not surprise the CPs. Even though most CPs were not very keen about the hearing assessment, some accompanied the PHI for hearing assessment and made an attempt to understand the hearing test results and what they may indicate. However, almost all of them made commitments to support the PHIs.
In this statement, the CP talks about the PHI's reaction to the hearing test and acceptance of hearing loss. However, this also indirectly implies that the CP confirmed that their assessment was correct. There are also elements of later stages being mentioned, for example, the rehabilitation phase (i.e., starting to wear hearing aids).
After the hearing test, the realisation made him do something about it….after he consulted he started wearing hearing aids, getting them fixed regularly, adjusts them, and it has made a great difference to us.
In this phase, most CPs were relieved that the PHIs were seeking help. However, they started realising that they also have an important role to play in the rehabilitation process, mainly in supporting the PHI (e.g., in using hearing aids). They soon realised that hearing instrument may not solve all the problems, which made them feel sympathy for the PHI's difficulties.
The following description highlights that soon after the PHI is fitted with hearing aids, they will start realising that they may not solve all the problems. In addition, the coping strategies used and the way in which the CP would support the PHI are evident.
He wears hearing aids, but I still have to shout and I say things six times….oh….I have to say six times very often..! You hear what I said then?….He will say no.. oh….right….I will start again then. So, it's again my temperament….I don't get cross over him… I would say…oh… for goodness sake…you listening now?….[chuckle]…watch my lips….[chuckle]…
The following statement made by a CP is an example of what may happen at a dinner table when they have big family dinner. This may suggest that they feel sorry for the PHI as they feel helpless in some occasions.
I feel a bit guilty sometime….Everyone having a conversation…having a laugh and everything….I feel guilty sometime if he can't join in sometime, and if he is sitting in the corner…and everyone don't realise that.
This was a new phase identified from CP's reports when compared to the Ida Institute professionals' perspectives of the communication partners' journey [8
]. This phase was noticed soon after the hearing assessment and rehabilitation session, when CPs started exploring new ways to communicate with the PHI, adapting to regular role of sharing, and reflecting on positive and negative consequences of the hearing impairment and the audiological management. Many elderly CPs also reported having started noticing hearing problems themselves and started comparing their own problems to those of the PHI.
The spouse of a PHI made the following statement in relation to how they started exploring new ways of communication after he was confirmed as having hearing loss.
I do repeat things for him, yes, he said such and such…sometime he will ask to me what did he say, when he misses a bit…the other day I repeated three times and eventually I say, I spell it out…because if they don't get it after three times….then we just spell it out.
The following quote was made while the CP was talking about how he adapted to dealing with the PHI which demonstrates that the CP is able to identify some positive aspects of hearing loss.
It's not like he is missing a lot, because we talk after the meeting, what is been said, and it's not like he is missing anything. In fact, there is another person in the office who just can't be bothered, who goes to meeting and ….dreams. Whereas he [name of PHI] is different, he concentrates on what is being said and pays attention. Maybe it's been a benefit to him in that respect, because, he is hard of hearing he got to concentrate on hearing it.
This was a more stable phase which most of the CPs reported during the course of the interview. In this phase, CPs started noticing continued difficulties experienced by the PHI in social situations and started realising that crisis may not necessarily hearing related. They also gradually started noticing the increasing difficulties of the PHI, possibly due to the worsening of their hearing loss. Some CPs had positive temperaments and reported satisfactory outcomes. However, others reported frustrating and disappointing outcomes. Changes in family dynamics (more of relationship dynamics) seemed like a dynamic process which was noticed even in this phase. Moreover, in this phase, most CPs were more stable, and hearing loss had just become a way of life compared to the earlier phase (i.e., adaptation) in which they were exploring new ways of communication to improve the situation.
The following statement shows that the CP has started using a certain way of communicating rather than exploring new ways of communication.
We have a way of talking to him now. We have a certain way. We sometime do it with normal hearing people when I talk to them, and they say why are you speaking to me like this? I am so used to being around dad. It does change our lives.
A daughter of a PHI made this statement indicating how her life had changed, and the crisis was not only hearing related.
It's our responsibility now…because, we can't expect him to do everyday things now. He will pick up the phone and ring me. Nine out of ten times he does not understand what we say. Few times now, since my mother has died and he lives on his own, if we don't get a response from him on the telephone we have to go there to check if he's alright.
3.8. Other Interesting Observations
A few interesting observations were made while analysing the data. The progression of CPs from one phase to other phase varied in terms of time scale (i.e., a few weeks to a few years). For example, in the case of a carer, there was very limited time between the contemplation and adaptation phase. Moreover, each CP had different expectations of their PHI and most CPs reported that they had taken additional responsibilities after their partner developed hearing impairment (e.g., answering the telephone and interpreting conversations in difficult listening situations). Whilst CPs may need to continually adapt to life situations (as the hearing loss of PHI progressed, changes in the use of technology, etc.), in the initial phases of the journey, CPs reported having explored ways to improve their communication behaviour (i.e., exploring coping strategies). However, as time progressed, they became used to dealing with the PHI rather than finding new ways to improve their communication. Such observations also acted as the key difference between adaptation and resolution phase.
CPs, who reported less psychosocial consequences and who were coping well, appeared to have had a positive temperament (or attitude) towards life and also had some experience of dealing with other chronic conditions. However, this was not measured using any standard scale but only a subjective interpretation of the researcher. More research is needed to understand the relationship between such factors as CP temperament and personality and their influence on the success of audiological rehabilitation of the PHI.
3.9. Comparison to Professionals' Perspectives of the CP's Journey
shows the professionals' perspectives of the CPs' journey [8
]. This was developed by collaborative efforts of 75 hearing healthcare professionals from around the world who attended the seminars of Enabling Communication Partnerships conducted by the Ida Institute in Denmark during 2009-2010.
Figure 3 Professionals' perspective of the communication partners' journey (stages identified only by professionals are highlighted in yellow text) .
shows the differences and similarities in the key phases and/or stages identified by CPs and professionals. This suggests that the unique stages identified only by professionals were relatively few. Moreover, there were some stages which were identified by the professionals but were coded differently when we analysed the experiences reported by CPs. For example, in the contemplation phase, professionals identified that less social interaction leads to frustration or anger. However, CPs reported “reduced social interactions” and “feeling of embarrassment, anger, and frustration.” This is because there were other reasons (e.g., communication breakdown) which also resulted in the feeling of frustration and anger. Moreover, the CPs have highlighted the fact that some stages may occur in more than one phase (e.g., reduced social interactions, changes in family dynamics, and acting as interpreter may become overwhelming).
Differences and similarities between phases/stages identified by CPs and professionals.