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Learning from Couples Living with Sensory Loss

Lehane, Christine Marie, PhD; Mamali, Freideriki Carmen; Wittich, Walter, PhD; Dammeyer, Jesper, PhD, DMSc

doi: 10.1097/01.HJ.0000550396.97518.cf
Sensory Loss Research

(L-R): Dr. Lehane is an associate researcher at the department of public health in the University of Copenhagen. Ms. Mamali is a research assistant at the university's department of psychology, where Dr. Dammeyer is an associate professor. Dr. Wittich is an assistant professor in the School of Optometry at the University of Montreal.

Peer support offers powerful benefits that promote the well-being of both patients and caregivers. From sharing personal experiences to exchanging advice, encouragement, and reassurance, peer support has been shown to reduce stress by alleviating social isolation, creating a space for mutual self-disclosure, and fostering a sense of togetherness among individuals facing a similar health condition (Marinelli. Springer, 1999). In the context of sensory loss, peer support is a common online and/or in-person feature of intervention services (Group Dyn. 2002;6(1):78; J Vis Impair Blind. 1994;88(2):152). Despite the widespread recognition of its value, studies on peer support in sensory loss are dominated by voices of researchers and rehabilitation specialists, drowning those of people actually dealing with sensory loss. As such, we shifted the focus to individuals with hearing, vision, or dual sensory loss and their spouses or partners to examine their recommendations for coping and peer support in the relational context—a topic not often covered in research or in peer support forums.

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STUDY METHOD

Data were drawn from two studies: (1) in-person interviews with 12 couples living with acquired deafblindness who had previously taken part in a mail survey in Denmark (Sex Disabil. 2017;35(2):135), and (2) an online, open-ended international survey of 72 adults with sensory loss and 39 spouses who had previously taken part in an online study (Br J Health Psychol. 2018 Sep;23(3):646). In both studies, the couples were asked: “What advice would you give to other couples who are living with sensory loss?”

In the first study, the average age of deafblind adults was 72 years old (range: 53-85) and 69 years old for their spouses (range: 57-85). The second study was based on a younger international sample, with the average age of adults with sensory loss at 52 years (range: 26-83) and their spouses at 51 years (range: 26-80). Participants of the second study included 39 adults with a single sensory loss (i.e., hard of hearing or visually impaired) and 33 adults with dual sensory loss (i.e., deafblind). Responses were coded using a standard thematic analysis approach.

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KEY MESSAGES FROM STUDY 1

Participants of the first study highlighted the importance of social support and assistance from peer support organizations, one's partner, and health care professionals. The deafblind adults encouraged others to seek peer support through patient-led organizations. They also noted that getting support from one's partner primarily involves cooperation and related traits such as “standing together,” being open and honest with one another, developing patience and understanding, accepting the sensory loss, and respecting each other's need for independence. Comments included:

“Use any opportunity you have to join your partner and socialize with other people and talk to them too. Ask questions and try to understand the answers and if the other is too fast or too quiet, say ‘please slower’ or ‘louder.’ Discuss with your partner that he/she should only help in an emergency. You may also be able to tell your partner that you would rather speak to them yourself. All people have a need for direct contact with other people and that also applies to you. The beginning of how to start a conversation can be difficult. One possibility is that you say who you are and that you are both visually and hearing impaired, but that you can understand if one speaks clearly and not too quickly…. This will help to rid the other of any possible uncertainty.”

– deafblind partner

“Talk about things, work to get the relationship to work instead of just saying – now I go my own way. It's too easy to just give up and go one's own way. Work on it, go out and get professional help if that's what is needed to get the relationship to last.”

– spouse of a deafblind adult

Maintaining a positive attitude was also deemed important to one's own ability to cope and to making it easier for partners to want to help each another. Participants noted, for example:

“Compassion can be many things… right, compassion is something that one must be able to feel with one another too… Well, even if he's being silly with me or if it is me who has turned and fallen or something like that… there is someone who says up again and keep going right, but I think that you must show some kind of compassion, and then you… can be in a good mood… If you treat people this way, then you receive compassion in return… if it is genuine.”

– deafblind partner

“It is also easier to help someone who is positive, right… than helping someone who is sour and grumpy and vicious.”

– spouse

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KEY MESSAGES FROM STUDY 2

Validating the recommendations gathered from the first study, the second study noted similar findings although in a different order. The predominant recommendations made by both participants with sensory loss and spouses focus on the importance of interpersonal communication and mutual support, which were presented as keys to maintaining a strong relationship. They commented:

“Talk to each about the difficulties; not only big issues but also the little frustrations in everyday life… Comfort and support each other when you face frustrations related to the sensory loss.”

– hard-of-hearing partner

“If you can, try to laugh about any mishaps - my partner laughs and lovingly calls me ‘silly lady’ whenever I keep bumping into things (that I don't see) or misunderstand things he said. That takes the edge off and lets me laugh as well. Be intimate.”

– deafblind partner

Feeling supported was linked to showing understanding, patience, and acceptance. Thus, similar to the first study, these were also recommended by the participants of the second study:

“Find out what works best for you. Not everyone adapts the same. Be patient and tolerant of the partner's frustration when simple ideas become obstacles because of misunderstandings.”

– deafblind partner

“The one with sensory loss needs to communicate 100% of the time and be patient with their partner. We are going through a unique, difficult experience and very few, if any, can understand what precisely gets you down. For the partner, I would say understand that there will be mood swings and don't run from those but get your loved one to talk about what is going on.”

– visually-impaired partner

“Try to be understanding. Make as much effort as you can to remember to speak clearly and turn towards the person you are speaking to.”

– spouse

Another common advice was to seek social and professional support. More specifically, participants emphasized the significance of seeking assistance from counselors, peers (including online groups), health care professionals, rehabilitation specialists, and technology. Maintaining a positive attitude was again deemed important to one's prospects in life and relationships.

“Counseling, either individual or couples, as the small things end up being a big deal (i.e., doors of cupboards remaining open). Find devices to support being independent such as a cane, hearing aid, alarm system, etc.”

– deafblind partner

“Don't stop your dreams. Life goes on. Life is still worth it as there is a whole world out there even if we can't see.”

– visually-impaired partner

“Also, your partner wants to be with you because you are fun, interesting, complex, etc., not because they feel sorry for you. Sensory loss can reveal hidden reservoirs of strength—and this is very attractive!”

– visually-impaired partner

“Focus on what the person CAN do, not on what he/she CAN'T.”

– spouse

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CONCLUSION

In general, participants in both studies reported that coping with sensory loss is by no means easy, but that it can be done and effectively so with the support of one's partner, one's community, peers, professional help, technology, and a positive attitude. These studies add to the literature on sensory loss and rehabilitation by giving a voice to couples living with sensory loss and underlining the importance of considering their views in research and rehabilitation.

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