Caregiver Perceptions of Children who have Complex Communication Needs Following a Home-based Intervention Using Augmentative and Alternative Communication in Rural Kenya: An Intervention Note

Figures & data

Table I. Participant Characteristics.

Participant	Sex	Age (years; months)	Health condition	Activities and participation for communication
				Motor skills	Comprehension & expression	Awareness of environment	Education
1	M	11;0	Cerebral palsy (quadriplegic) and profound intellectual disability; visual impairment	Unable to walk or sit unsupported; limited voluntary control of head and eye movements	No evidence of verbal comprehension; limited vocal, body, hand and facial gesture	Recognition of familiar persons and objects	Does not attend school
2	F	3;7	Global developmental delay of unknown aetiology; parental report of skills loss and regression in social behaviour post first 12 months of typical development	Some crawling behaviour and sits on floor unsupported; voluntary control of head, eye and hand-arm movements	No evidence of verbal comprehension; limited vocal, body, hand and facial gesture	Limited recognition of familiar persons and objects	Does not attend school
3	M	6;0	Cerebral palsy (quadriplegic); epilepsy	Unable to walk, bottom shuffles on floor; some voluntary control of eye-hand-arm movements for grabbing objects	Verbal comprehension at 2–3 word level; some vocal, body, hand and facial gestures; attempts speech	Good recognition of people, objects and pictures; good awareness of environment	Attends special needs unit attached to school
5	F	6;0	Intellectual disability, poor attention and hyperactivity	Able to walk. Reasonable voluntary control of hand-arm movements	Limited verbal comprehension. Some vocal, body, hand and facial gesture	Limited recognition of familiar people and objects	Does not attend school
6	F	6;0	Moderate hearing impairment (currently no hearing aids)	Fully mobile; motor skills are unimpaired.	Verbal comprehension at the 2 word level; attempts speech; uses vocal, body, hand and facial gestures	Good recognition of people, objects and pictures; good awareness of environment	Does not attend school
7	M	5;6	Cerebral palsy (quadriplegic), intellectual disability	Unable to walk or move independently; some voluntary control eye-hand-arm movements	Basic verbal comprehension; uses vocal, body, hand and facial gesture. Attempts speech	Good recognition of people and objects	Does not attend school
8	M	12;0	Autistic spectrum disorder	Fully mobile; motor skills are unimpaired	Verbal comprehension at 4 + word level; restricted use of vocal, body, hand and facial gesture	Some recognition of people with good recognition of objects and pictures	Attends special needs unit attached to school
9	F	6;0	Severe intellectual disability – Down syndrome	Fully mobile; good voluntary control of eye-hand-arm movements	Verbal comprehension at the 1–2 word level; good use of vocal, body, hand and facial gesture. Attempts speech	Good awareness of people, objects and pictures	Does not attend school
10	F	6;0	Cerebral palsy (quadriplegic), global developmental delay, nystagmus noted-vision queried	Unable to walk Limited voluntary control of eye-hand -arm movement on right side	Limited verbal comprehension; restricted use of vocal, body, hand and facial gesture	Limited recognition of people and objects	Does not attend school

Note. Participant 4 withdrew from study.

Table II. Intervention Devised for each Participant.

Participant	Approach	Goal(s) for child attainment	Communication opportunities	Targeted vocabulary (corresponding objects/items as appropriate)	Materials to be used
1	Objects of reference	To request the thing he wants by responding to a yes/no choice when offered either one or a pair of real life objects	Use of eye gaze (L-R) to identify preferred object held up by Mother, which mother then uses with him	Drink/no drink (cup), food/no food (bowl), comb hair/no comb hair (comb), wipe face/no wipe face (face cloth), play/no play (shaker)	Box containing everyday objects
2	Intensive interaction using multi-sensory stimulation	To engage in socially interactive play with mother, father and familiar others at home	Playful interactions between child and parents using multi-sensory material accompanied by babble play approximating “Mama” and “Baba” ; parents watch naturally occurring behaviours of child and imitate them	Babble play: Mama (mum) and Baba (dad)	Multi-sensory objects (e.g., cloth, mirror, body lotion, fan) to use in interactions
3	Pictorial communication board(s)	To communicate basic needs and to tell his family about things that have happened or people he has seen	Use of gestural point to pictures displayed. Mother points to items and looks at P3 with questioning gaze to see if he can relate it to the environment (e.g., persons present/absent, or to an event)	Vocabulary used (Mama, Baba, family members, drink, food, sleep, happy, sad, me, want, like, go, no, yes, school, bed, food, drink, fruit, shop, neighbours)	Two communication boards: (a) photographs of Participant 3 and all the familiar people in his life, and (b) line drawings for vocabulary using board maker
5	Objects of reference	To communicate basic needs and to engage in socially interactive play with familiar people	Use of eye gaze and giving/receiving objects during basic exploration activity of objects in box (e.g., use of face cloth, making sound with shaker); selection of appropriate object by mother to indicate daily event (e.g., time for a drink)	Drink (cup), food (bowl), comb, bathe (face cloth), play (shaker toy), look (mirror)	Box containing everyday objects
6	Total communication	To expand communicative vocabulary and to use a range of expressive functions	Imitation of spoken and signed naming of objects, people and actions in the environment by mother followed by focal practice of items with mirror.	Vocabulary used in daily routines (e.g., duck, dog, chicken, goat, cow, water, bicycle, house, washing, food, drink, mobile phone)	Large mirror to provide visual feedback in speech practice. Signs drawn from Kenyan Sign Language
7	Objects of reference	To communicate basic needs and simple choices	Use of hands to remove items (attached with loop fasteners) and give to “Mama”	Drink (cup), food (bowl), comb, face cloth (bathe), play (shaker toy), look (small mirror)	Every day object board covered in carpet and displaying items attached with loop fasteners
8	Picture Exchange Communication System	To communicate basic needs	Selects and gives picture item to receive the desired item from Mama (e.g., pieces of sliced mango). Trial is repeated several times.	Vocabulary used (drink, juice, milk, crisps, biscuits, banana, apple, mango, biscuit)	Picture tokens of items
9	Total communication	To build functional vocabulary to support expressive language	Family members in the homestead use signs with speech to label items, actions and events in the homestead and to support a range of communicative functions	Vocabulary relevant to homestead (e.g., food, writing, goat, cow, duck, chicken, water, bicycle, coconut, house, bed, drink)	Kenyan sign language core vocabulary of everyday objects, actions and events
10	Objects of reference	To communicate basic needs and to interact socially	Use of arm-hand to remove items from the object board and give to “Mama”	Drink (cup), food (bowl), comb, bathe (face cloth), play (shaker toy), play/look (mirror)	Every day object board covered in carpet and displaying items attached with loop fasteners

Note. Participant 4 withdrew from study.

Table III. Parent Ratings for the Child's Reported Competence: Section 1, Body Structure and Function, and Section 2, Activities.

Participants	Section 1^a			Section 2^b
	Pre	Post	Difference^c	Pre	Post	Difference^c
P1	38	56	+ 8	18	28	+ 10
P2	34	42	+ 8	14	10	− 4
P3	34	74	+ 40	52	63	+ 11
P5	44	68	+ 24	5	34	+ 29
P6	78	79	+ 1	59	64	+ 5
P7	61	69	+ 8	25	51	+ 26
P8	40	76	+ 36	36	44	+ 8
P9	80	80	0	33	64	+ 31
P10	48	47	− 1	10	16	+ 6
Mean	50.8	65.7	13.8	28	22	13.6
Min	34	42	− 1	5	10	− 4
Max	80	80	+ 40	59	64	+ 31
SD	18	14	12.2	18.7	20.8	15.6

Note. Participant 4 withdrew from study

^aThe higher the score, the greater the perceived competence. ^bThe higher the score, the less the perceived problem. ^cPre- to post-intervention difference in parent reported ratings: + = a perceived gain; − = a perceived decrease. SD, standard deviation.

Table IV. Parent Report on Section 3: Opportunities for Child's Participation and Extrinsic Factors.

Participant	Pre/post	Participation opportunities			Extrinsic factors
		Frequency per week	Places	People	Time	Information	Community support & acceptance
1	Pre-	1–2 outings	Nothing reported	Contact with parents, siblings, neighbours, non-disabled children, family members	Not enough	Limited	Not enough people to communicate with, no acceptance of child
	Post-	No change	Goes to shop, church, market, hospital	Additional contact with teacher	Not enough	No change	Enough people to communicate with and acceptance of child
2	Pre-	6–10 outings	Goes to shop, church, visiting relatives; market, well, school, neighbours, out with children, community events, hospital	Contact with parents, siblings, neighbours, disabled children, relatives	Not enough	Enough	Enough people to communicate with, acceptance of child
	Post-	11 + outings	No change	No change	No change	No change	No change
3	Pre-	6–10 outings	Goes to shop, church, market, well, visiting neighbours, hospital	Contact with parents, siblings, neighbours, children	Limited	Enough	Enough people to communicate with, acceptance of child
	Post-	11 + outings	No change	No change	Enough	No change	No change
5	Pre-	6–10 outings	Goes to church sometimes, visiting relatives	Contact with parents, brother and sister, relatives	Limited	Enough	Enough people to communicate with, acceptance of child
	Post-	11 + outings	In addition goes to shops, market, well, out with children, hospital	Additional contact with neighbours, non disabled children	Enough	No change	No change
6	Pre-	6–10 outings	Goes to shops, church sometimes, visiting relatives, market, well; out with children, hospital	Contact with parents, brother and sister, neighbours, non disabled children, relatives	Limited	Enough	Enough people to communicate with, acceptance of child
	Post-	11 + outings	No change		Enough	No change	No change
7	Pre-	0	None reported	Contact with parents, few neighbours’ non disabled children, family members	Limited	Enough	Enough people to communicate with, acceptance of child
	Post-	No change	No change	No change	Enough	No change	No change
8	Pre-	6–10 outings	Goes to shop, church, visiting relatives, market, well, out with children, hospital	Contact with parents, brother and sister, neighbours, non disabled children, relatives	Limited	Enough	Enough people to communicate with, acceptance of child
	Post-	11 + outings	No change	No change	Enough	No change	No change
9	Pre-	11 + outings	Goes to shop, church, visiting relatives, market, well, out with children, hospital	Contact with parents, brother and sister, neighbours, non disabled children, relatives	Limited	Enough	Enough people to communicate with, acceptance of child
	Post-	No change	No change	No change	Enough	No change	No change
10	Pre-	0	Goes to hospital	Nothing reported	Enough	Limited	Enough people to communicate with, no acceptance of child
	Post-	No change	No change	No change		No change	No change

Note. Participant 4 withdrew from the study.