Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services

Figures & data

Figure 1. Flow chart over participants. SLP, speech language pathologists; RTT, Rett syndrome; CA, communication aid. *Percentage of all SLPs in the target group:SLPs working with people currently receiving support from habilitation services. **Participants in this study.

Table 1. Background data on participants’ work experience and intervention time frames (n = 77).

	n (%)
Work experience (years)
0–4	14 (18)
5–9	22 (29)
10–14	12 (16)
15–19	9 (12)
20–40	20 (26)
Number of clients with RTT
1	37 (48)
2	23 (30)
3	14 (18)
4–5	3 (4)
Estimated number of appointments  with the client or social network
1–5	38 (49)
6–10	17 (22)
11–15	8 (10)
16–20	5(6)
>20	9 (12)
Estimated total length of contact with the client  or social network (years)
0–1	36 (47)
2	13 (17)
3	12 (16)
4–10	14 (18)
11–25	2 (3)

Table 2. Communicative functions targeted in general communication intervention (n = 76).

Communicative category	Communicative functions	Not at all n (%)	To a small extent/partly n (%)	To a large extent/ exclusively n (%)
Interaction:	Imitating	38 (50)	28 (37)	10 (13)
	Joint attention	14 (18)	42 (55)	20 (26)
	Turn taking	18 (24)	37 (49)	21 (28)
Expressing wants and needs:	Choice making	–	18(24)	58 (76)
	Requesting	5 (7)	25 (33)	46 (61)
Conversation:	Asking	40 (53)	25 (34)	11 (15)
	Commenting	34 (45)	28 (37)	14 (18)
	Initiating topic	32 (42)	32 (42)	12 (16)
	Narrating	34 (45)	30 (39)	12 (16)
Show understanding:	Following instructions	23 (30)	46 (61)	7 (9)
Other:	Other communicative function^a	58 (76)	9 (12)	9 (12)

^aExample of other communicative functions as specified by the respondents: taking more initiatives, linguistic competence, joking, answer yes/no.

Table 3. Partner strategies targeted in general communication intervention (n = 76).

Category of partner strategy	Partner strategy	Not at all n (%)	To a small extent/partly n (%)	To a large extent/ exclusively n (%)
Behaviour state regulation:	Catch attention, regulate arousal	9 (12)	31 (41)	36 (47)
	Identify motivating activities	3 (4)	22 (29)	51 (67)
Responsive strategies:	Acknowledge and confirm expressions	4 (5)	20 (26)	52 (68)
	Attend to expressions	5 (7)	25 (33)	46 (61)
	Give time	4 (5)	24 (32)	48 (63)
Eliciting (specific) actions:	Expectant delays	10 (13)	28 (37)	38 (50)
	Model communication	9 (12)	31 (41)	36 (47)
	Provide opportunities for choice making	4 (5)	18 (24)	54 (71)
Other:	Other partner strategies	–	6 (7)	5 (7)

Table 4. Communication aids (CA) included in the intervention and perceived usefulness by SLPs (n = 64).

Communication aids	CA included in the intervention	Useful n (%)	Not useful n (%)	Useful: CA included^a n (%)	Not useful: CA included^b n (%)
Pictures/objects of reference	52 (81)	47 (73)	5 (8)	47 (90)	5 (10)
Visual support	42 (66)	37 (58)	5 (8)	37 (88)	5 (12)
Single message electronic devices	34 (53)	30 (47)	11 (17)	30 (73)	11 (27)
Communication charts/books	30 (47)	22 (34)	8 (13)	22 (73)	8 (27)
Computer with eye gaze access	24 (38)	19 (30)	5 (8)	19 (79)	5 (21)
Communication passport	16 (25)	10 (16)	6 (9)	10 (63)	6 (38)
PECS	19 (30)	4 (6)	5 (8)	4 (44)	5 (56)
Computer with other access options	15 (23)	7 (11)	8 (13)	7 (47)	8 (53)
Miscellaneous CA	13 (20)	10 (16)	3 (5)	10 (77)	3 (23)
Talking mat	6 (9)	4 (6)	2 (3)	4 (67)	2 (33)
Communication apps	5 (8)	3 (5)	2 (3)	3 (60)	2 (40)
Multi-message electronic devices	3 (5)	–	3 (5)	–	3 (100)

Eleven SLPs responded that the intervention did not include communication aids. One non-respondent.

^aPercentages are based on the participants that had used the specific communication aid in the intervention.

^bPercentages are based on the participants that had used the specific communication aid in the intervention.

Table 5. SLPs’ reports of how communication aids contributed to the communication of the person with Rett syndrome (n = 64).

Communicative category	Communicative function	More seldom or less clear n (%)	No effect n (%)	More often or more clear n (%)	Don’t know n (%)
Interaction:	Imitating	8 (13)	13 (21)	13 (21)	29 (46)
	Joint attention	4 (6)	6 (10)	25 (40)	28 (44)
	Turn taking	2 (3)	8 (13)	28 (44)	25 (40)
Expressing wants and needs	Choice making	3 (5)	3 (5)	46 (73)	11 (18)
	Requesting	3 (5)	8 (13)	31 (49)	21 (33)
Conversation	Asking	3 (5)	22 (35)	9 (14)	29 (46)
	Commenting	5 (8)	21 (33)	7 (11)	30 (48)
	Initiating topic	3 (5)	20 (32)	10 (16)	30 (48)
	Narrating	4 (6)	24 (38)	5 (8)	30 (48)
Show understanding	Following instructions	2 (3)	12 (19)	20 (32)	29 (46)
	Showing anticipation	1 (2)	6 (10)	36 (57)	20 (32)
Other^a	Other communicative function		8 (13)	6 (10)	49 (78)

^aExamples of other communicative functions that were specified: Answering yes/no, having more influence in daily life, overall participation.

Table 6. Estimated outcome of communication intervention with communication aids (n = 63).

SLP-estimated outcome	Not at all n (%)	To a small extent/ partly n (%)	To a large extent/ always n (%)	Don’t know n (%)
The person with RTT used CA in one everyday setting^a	2 (3)	19 (31)	29 (47)	12 (19)
The person with RTT used CA in more than one everyday setting	11 (17)	25 (40)	15 (24)	12 (19)
The person with RTT used CA with more than one interaction partner	2 (3)	22 (35)	25 (40)	14 (22)
CAs were perceived to work satisfactory according to the social network	1 (2)	23 (37)	21 (33)	18 (29)

RTT, Rett syndrome; CA, Communication aid.

^aOne participant did not respond to this question. The percentage is therefore based on 62 participants.