Understanding Lived Experiences of Adults with Communication Difficulties: Exploratory Qualitative Research ________________________________________________________________________________________________________________________
Authors: Nathhaniel Rupp(Primary), Debbie Bong, Ruth Bryce, Katherine Dobson, Yit Variya & Uk Sokmea
Communication difficulties impact on all areas of a person’s life, from interpersonal relationships and participation in the community, to education and work opportunities. 1 in 25 people in Cambodia need Speech Therapy (ST) for communication or swallowing related difficulties 1, yet little to no research has been conducted to understand the experiences of this population. Research is needed to understand the diversity of people with communication difficulties in Cambodia and the impact of their communication difficulties across a broad range of life domains, to ensure the relevance and responsiveness of services.
Communication Difficulty refers to a limitation in sending, receiving, processing and understanding spoken and non-spoken language (American Speech- Language-Hearing Association, 1993).
This study focused on expressive communication difficulties including limitation with speech production and clarity, voice, fluency and expressive language difficulties across any of the five language domains- phonology, morphology, syntax, semantics, pragmatics.
- Begin building a deeper understanding of the lived experiences of people with communication difficulties in Cambodia.
- Pilot the use of an augmentative and alternative communication (AAC) tool to increase participation of people with communication difficulties in research
This small–scale study used semi–structured interviews to collect qualitative data across the following life domains as shown in Figure 1.
The study incorporated the use of AAC to support people with communication difficulties to express themselves and actively participate in interviews.
Communication Barriers & Facilitators
- Interpersonal Relationships
- Education & Training
- Living Situation
- Employment Livelihoods
- Self-care& Daily Living
AAC refers to communication methods used to supplement or replace spoken language, including the use of gestures, sign language, written text, pictures, high-tech speech–generating devices and tablets. The tool developed is a low-technology, picture and symbol based, AAC system, based on the Talking Mats framework. (www.talkingmats.com)
Aac tool: key components
- Core Board: Functional messages including a. Yes/ No responses and
- quick phrases designed to provide quick access to requests for
- Topic Cards
- Options: Relating specifically to each topic
- 4. Visual scale: Allows participants to indicate their feelings about each topic
Figure 2: AAC Tool Care
The Understanding Lived Experiences of Adults with Communication Difficulties: Exploratory Qualitative Research report focuses on interviewing Cambodian adults with expressive communication difficulties. This study relied on semi- structured, in-depth interviews as the core data collection method.
Where relevant, augmentative and alternative communication (AAC) techniques such as visual aids, symbols or signs were used throughout interviews by both the interviewer and interviewee. Eights adults with a range of expressive communication difficulties were interviewed with the intent to understand the impact their communication difficulty has had on their lives so far.
Additionally, this study functions as a pilot for the use of augmentative and alternative communication (AAC) (techniques such as visual aids, symbols or signs) in interviews. As such, beyond simply answering the research questions, the study examines and evaluates how AAC can be used to facilitate increased independence and participation in research/interviews for people with expressive communication difficulties.
Living with a Communication Disability
- Feelings of sadness, isolation and loneliness were expressed by almost all adults with communication difficulties.
- Communication difficulties affect interpersonal relationships with family, friends and people in the community.
- Adults with communication difficulties are less likely to participate in their community
- Attitudes of peers and teachers were key barriers to access and inclusion in school.
- Work or employment were priorities for all adults however some were perceived by their family as incapable.
- Most adults with communication difficulties lived with their
immediate family- those who did not expressed feeling isolated or discriminated against in their new environment.
Supporting People with Communication Difficulties
- Local Disabled Persons’ Organisations (DPOs) expressed a lack of confidence and demonstrated difficulty identifying people with communication difficulties in their communities.
- Communication partners were identified as both facilitators or barriers, depending on their level of understanding and accommodation of the person’s communication needs.
- None of the adults interviewed had received any direct or targeted support for their communication difficulties.
AAC encompasses communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language. Low-technology AAC, including the use of pictures, can be easily accessible, inexpensive, can be used in any setting and meets the criteria for better communication with people with communication difficulties. The AAC system developed for this research aimed to allow conversational partners to use a mixture of communication methods including moving pictures in different locations to visually represent their ideas, opinions and feelings.
Once the topic was introduced or chosen, e.g. activities, the person was given the options one at a time and depending on the question, asked to select the relevant options or think about what s/he feels about it. S/he can then place the symbol under the appropriate symbol on the visual scale to indicate what s/he feels. Participants were also encouraged to comment on both positive and negative feelings about the options and to change their minds. Participants were given as much time as they needed to respond and blank squares were provided for the participant to add any additional options. Participants were also encouraged to look back over their selections and alter or confirm their views.
KEY OBSERVATIONS : LIFE DOMAINS
The impact of communication disability within Cambodia has received limited attention to date. This study is one of the first in Cambodia to examine the impact of CD for adults, regardless of etiology, across a range of social, daily living, educational, employment and livelihood domains. Overall, interviews revealed adults with communication difficulties in Cambodia face extra barriers to interpersonal, social, economic and educational success. In particular, barriers to participation in community life and inadequate support (for what?), with resulting problems of isolation and sadness?, were found in all the cases.
In general, it is clear that in all areas of life, adults with communication difficulties are more isolated. This isolation is both externally and internally enforced. Many participants expressed being pushed away emotionally at home or in school, which led to feelings of sadness. Others reported that they struggled too much to be around others. They feared judgment as a result of previous traumatic experiences. Isolation wa s a problem for some of the participants due to a combination of the difficulties other people experienced in communicating with them and the barriers to independent travel. Many respondents reported needing help from others to travel outside the house.
INTERPERSONAL INTERACTIONS AND RELATIONSHIPS
Participants described many aspects of the communication environment that heavily influenced their
communicative participation. The most influential among these was the communication partner. In some situations, communication partners were facilitators of participation. In other instances, communication partners were barriers to participation. Partners’ behaviour was either directly reported to be or seen to be “not receptive” or “dismissive.” Several participants reported instances of communication partners ignoring them or walking away from them.
“For me, it is easier to talk with my family than with the people who I never met, I feel nervous.”
The Inner and Outer Circle
The familiarity and attitude of the communication partner were the key issues in determining if the partner
was regarded as a barrier or facilitator of participation. Almost all participants reported that communicative
participation was easier with familiar people. “There is no barrier if you know them well.”
There was an array of educational attainment amongst the participants. One participant attended a respected university, while others were less educated. Beyond the amount of schooling, there were mixed result s regarding the extent to which the participants enjoyed going. This may have contributed to the generally low
levels of education reported. Many participants reported that they enjoyed learning, but were either not given extra support in school, or did not feel happy in the school environment as a result of bullying.
” I remember during grade 7, I was scolded by the teacher, he said ” Why are you here, you make the class space busier”. These words mean I am stupid, that I do not understand things because I look impairment. Some studentss when I sat close to them would move away and I would have to sit alone.”
Overall, employment was a clear area of tension for the participants of this study. Almost every participant did some sort of “work”, but it was not always compensated, particularly if it was done for a family business. That being said, it was not true that in all cases the communication difficulty created a barrier to professional life. Two participants, who had less severe communication challenges, did have careers outside family business.
It was noted in several interviews that the participant would like to work, but was considered unable to by their family. One respondent appeared to look at her mother before responding to question on “what would you like to do for work”. The respondent’s mother expressed some reservations about the respondent being able to work as a tailor due to her fine motor difficulties and regular seizures.
SELF–CARE AND DAILY LIVING
Two patterns arose from the discussions regarding household responsibilities. Either respondents reported that they were not allowed to do much household work because they were expected to be incapable, or they were tasked with a great deal of the housework. For those who were not doing the household work, most
respondents reported this was due to their inability or perceived inability to contribute to household life. Finally, a set of participants reported that when they worked in the household they rarely asked for help, “I don’t disturb anyone to help me.”
” I just moved to live in a new house and the people there seem not understand me. I feel that, they are discriminate against me and looking at me strangely, they did not want sell goods to me.”
KEY LEARNINGS :THE AAC TOOLS
§ Increases communication independence and autonomy for people with communication difficulties
§ Supports active participation in research
§ Can be analysed using a thematic coding system
§ Flow of conversation is maintained [AAC supplements rather than replaces or detracts from spoken communication and interaction]
§ People with communication difficulties have communication
autonomy [are able to express their own communicative intentions2]
§ Requires support from a competent communication partner
§ Requires thoughtful design and testing
Figure 3: AAC Tool being used
The findings suggest that the interview tool framework can play an important role in improving communication by providing an accessible, low cost tool, which family and staff can use with people with communication difficulties to help them express their views.
One key consideration for this study was to evaluate the use of an AAC tool within the Cambodian context as a method for data collection. This was the first time the tool has been used to include the direct voice of people with communication difficulties. And as such, this report will evaluate its effectiveness at eliciting the desired information, its ease for analysis, and its scalability. Participants varied in their degree of using the AAC tool as a method of communication. Some participants used the pictures to answer every question whilst others chose to use their speech. While the tool was used differently by various participants, it was clear that the most used cards were the family relation cards. They were implemented both when discussing the participants’ interpersonal relationships as well as to help describe their daily lives. This may be the result of the primacy of these themes in the participants’ lives or a feature of the set of questions being asked (resulting in priming for these answers).
Additionally, each interview was concluded with a brief set of questions regarding how helpful the tool was in assisting the conversation. Participants generally reported that the tool assistance in conversation without causing more or extra interference. It was reported in several cases that the participants appreciated the extra option for a secondary communication method. In only was case did the participant report that the tool did not support more fluid conversation. This is consistent with previous studies that found that the use of an AAC tool benefits smooth communication seeing it can be used as much or as little as the participants choose.
This study demonstrates that the use of AAC can allow people with communication difficulties to communicate their opinions with greater independence and suggests that the use of a low technology, AAC tool may help researchers, service providers and family members to consult directly people with communication difficulties. It has the potential to help people express their views on various topics including: what they want to be recorded in their personal care plans; health and social issues such as accepting care or moving to different accommodation; what they think about services on offer; where they would like to see improvements made. Additionally, it may help facilitate more effective communication with individuals from ethnic minorities who may not share a common language. The AAC framework may prove useful in overcoming language differences because of the use of picture symbols instead of any specific language.
INSIGHTS FOR FUTURE WORK
This study demonstrated that there is a need for the interviewer to support the communication of participants with communication difficulties. The techniques used by the interviewer need to be made explicit in order for the research to maintain rigour. Accomplishing this in a rigorous fashion is no mean feat. Future research, particularly with the OIC AAC tool should be conducted after more thorough training and testing. While, the vocabulary cards were culturally relevant and responsive, there were several instances were the interview was hampered by the lack of smooth transitions from sections as well as fumbling with the cards. That being said, the tool itself was evidently helpful when deployed smoothly. The tool was successful at eliciting the information, in some cases more effectively than verbal communication. The AAC tool could easily be brought into more activities to help normalize its use into OIC programming. By normalizing its use, participants may feel less uncomfortable with it, as well as help refine its vocabulary.
§ Broaden the inclusion criteria of future research to include the voices of people with other communication difficulties including receptive communication difficulties.
§ Support Disabled Persons’ Organisations and other disability sector stakeholders to increase their awareness of communication difficulties; strengthening their capacity to identify, include, support and advocate for people with communication difficulties.
§ Increase awareness to support the inclusion of people with communication difficulties through communication partner training [for caregivers, teachers, vocational training providers and employers]
§ need for increased awareness and capacity for communities and service providers to ensure an inclusive and supportive environment for people with communication difficulties. Identifying people with communication difficulties and providing specific training to their communication partners may improve not just the communication between individuals but the overall wellbeing of people with communication difficulties.