Understanding and supporting Anna: 
A case study

Anna is 38 years old and has lived in various residential facilities since she was four. Each year, she receives 50 hours of special education for adults and has a contact person for ten hours a month. From 9 to 18 years of age, Anna spent weekends and holidays at a support family.

Anna lives in an apartment of her own in a residential centre. Her apartment consists of a bathroom, living room, sleeping area, and a small kitchen. She enjoys ballgames, watching children’s programs like Teletubbies, doing jigsaw puzzles, and watching videos made by herself on her Ipad during her everyday activities.

The Ipad is also her communication tool. She films herself talking about daily experiences. 

She spends time taking photos, writing words on the computer, organising laundry, and goes for long walks with an accompanying assistant.

”For Anna to thrive, she relies on support from people who know her personality, her interests, and who have a good knowledge of her body language and communication methods.”

For Anna to thrive, she relies on support from people who know her personality, her interests, and who have a good knowledge of her body language and communication methods.

Every afternoon and evening, Anna writes nine words in a calendar book functioning as her diary, with the help of an assistant. These words reflect her day, including things that are important to her, her experiences, and future appointments. She uses pictures on her Ipad as reference objects.

Anna also enjoys spending time in the communal kitchen and living room checking what her fellow residents are doing. In the kitchen, Anna has a weekly task of loading the dishwasher. She also helps her fellow residents and encourages them to choose a dessert for the weekend among the dessert pictures in a special box.

The first four years of her life, Anna was hospitalised several times. She underwent surgery for a congenital heart defect and for cleft lip and palate. She lacks a passage between her nose and throat and had a tracheostomy implant.

Anna has colobomas in both eyes, horizontal undulating nystagmus (repetitive, uncontrolled eye movements) and, microcornea (small cornea, less than 10 millimetres in diameter), is nearsighted, and has had surgery for cataracts. She is visually impaired with a limited field of vision. Her ears are malformed, and her hearing is impaired. She functions as deaf. Her developmental profile ranges from two to eight years.

Anna reads and writes by holding her face close to the material; she uses her left eye for reading and her right eye for orientation. She can’t see upwards and can only see gestures from the top of her head downwards. Anna lacks depth perception and can’t deter​mine height differences. She finds it difficult when the light is low.

Block magnifiers and spectacle correction haven’t been effective.

It is important to communicate within Anna’s narrow field of vision. She is very dependent on her residual vision and on the adaptation to conditions to see better. Non-manual components of sign language, such as mimics, are hard for her, but she communicates using a combination of some signs, writing, pictures, and text.

Occasionally, Anna uses tactile sign language and relies heavily on her tactile sense. She can use her fingertips or pick up things to examine surfaces and objects tactilely and visually.

Her balance problem and limited vision make it challenging to navigate in unfamiliar terrain. However, this does not stop her from visiting new places.

Adapted lighting, and flooring inside and around the accommodation centre make it easier for Anna to move around. The use of a walker increases her mobility.

Anna’s sensory loss is affecting her motor skills. She has shortened collarbones which has led to increased thoracic kyphosis

Curvature of the upper part of the spine

, and she has a slight scoliosis (a back misalignment). She compensates for balance issues with a wide-tracked gait and has begun to use a tall, rear-facing walker with forearm support in her daily long walks. This has helped her to increase her walking distance.

Anna walks in a wide-track gait with knees bent to lower the centre of gravity and her body swaying from side to side with each step. She often finds better balance by sitting with one foot on the other knee or with crossed legs.

Anna probably has no sense of smell and taste. A lack of olfactory bulbs is a common symptom in persons with CHARGE syndrome. Anna enjoys mixing liquid food, experimenting, for example, mixing ketchup, caramel, whipped cream, and fruit colouring.  

Other people often guide Anna’s use of language. She can restrain impulses only for a short time. She adapts her behaviour a bit with others and tries to calm herself rather than allowing others to comfort her. Anna does not express her feelings verbally; instead, she relies on assistants to understand and fulfil her wishes and needs, accepting their decisions. 

Anna can wait a while for things she enjoys and relies on the assistant’s suggestions and guidance in how things should be done. Anna has a sense of time and needs many repetitions to the daily routine, especially if there are changes to the plan. 

Anna communicates by visual sign language – but not at an age-appropriate level. She uses from one to up to eight signs, depending on the situation, and she likes to use reference objects such as pictures, books, and games.   

One of her communication strategies involves asking questions using one to two characters, while simultaneously expressing a questioning attitude. The person she’s communicating with needs to figure out what Anna is asking and try to get more details to understand.   

Once Anna is motivated and has received information, she can participate in a conversation.

”Once Anna is motivated and has received information, she can participate in a conversation.”

Anna likes to hand over messages from one assistant to another, ensuring that everyone is informed. She can start a conversation with one word and then look at the assistants with the expectation that they know what she is thinking.

The assistants use triparty conversations to support her, limiting the sign space, supporting the signs tactilely, and using clear body language.

Anna understands more signs than she uses. She is a “data collector” and wants information about fellow residents and staff regarding absence, illnesses, holidays, and shift schedules.

The communication topics Anna selects are often very personalised, person- and context-dependent, which requires an in-depth knowledge of her.

Numbers are a favourite: how many different things they had for dinner, how many buns were baked, how many presents she got for her birthday, etcetera. She also takes notes of time, such as when someone needs to go home or when she is going for a walk.

Anna expresses wishes for her social pedagogical schedule for the day and if making purchases, what to buy. She films her everyday experiences on the Ipad and takes pictures. Afterwards, she enlarges them to study them closer.

We have included a video analysis here to give an example of Annas communication methods. In the video, Anna and an assistant are sitting at a table with a calendar in front of them. Anna grabs the assistant's right wrist and points with her other hand to another assistant who is sitting at the same table knitting. They both laugh before the conversation begins.  

Anna: (Name) – holiday home.

Assistant: You say (name) and holiday home, what do you think?   

Anna: (Pointing to her diary) Search – holiday – home – date – search.

The two assistants communicate verbally about the dates.  

Anna lightly places her hand on the assistant’s wrist to establish contact, subsequently pulling the assistant’s arm towards herself. She tries to turn the assistant’s head while maintaining hand contact.

Anna: (Changing subject pointing to her tracheal cannula and then to her calendar) Summer house – go again.

Assistant: We should also look at when to go to the hospital.   

Anna: Summer house.

Assistant: On 30 March we can look at the summer house. 

Anna: (Pointing at the assistant and then down at the table) Is (name) present?

Assistant: (not answering the question).

The video shows several topics of conversation at the same time. From Anna’s perspective, they are talking about holidays, the coming visit to the hospital, and who is coming and when. 

The assistants also discuss the organisation of staff holidays. They should have discussed this before the conversation with Anna because she gets confused, and Anna and the assistant talk past each other.

Initially, Anna does not realise that they are talking about a colleague’s holiday and not her own. A couple of times, Anna tries to return to and point to the calendar to confirm that they are talking about her holiday, while the assistant is still talking about when a colleague might be going on holiday.   

A future action strategy must be for staff to coordinate dates for hospital visits, staff holidays, and possibly the exact date of the Annas holiday before involving her.

Another strategy is higher partner competence. The partners must be at a higher level of sign language than Anna so that they can challenge and refine her sign language level at the right times and with empathy. Enhancing Anna’s ability to express herself in a more nuanced way will provide her with greater opportunities to influence her own life.

In the conversation, she is the one who points out that at the time of a possible holiday trip, there is also time scheduled for a hospital visit. Anna shows a great and long-term overview of time and a good memory. The video sequence also shows that Anna can focus on more than one topic at a time, as she brings several topics into play unprompted and on her initiative.

Anna often mixes various topics into a single conversation, and the partner needs to help maintain focus and structure preventing unnecessary confusion for Anna. The ability to include related topics in the main conversation is a cognitive skill that should be supported and developed. However, it is equally important for the partner to assist Anna in avoiding having too many different topics in one conversation, to prevent misunderstandings.

It might be tempting to conclude that the confusion is caused by the assistant in the video. This occurs when the assistant, without informing Anna, shifts the topic and starts to talk about the colleague’s holiday while Anna is still talking about her own holiday.

When developing future strategies for Anna, it is important to consider the assistant’s role in the conversation and Anna’s overview and energy levels.