More than my Appearance: a pilot evaluation of the Expand Your Horizon online functionality-based writing programme for adults with visible differences

Figures & data

Figure 1. CONSORT (2012) Flow Diagram.

A CONSORT flow-chart showing the study flow including randomisation to the intervention and control conditions.

Table 1. Participant characteristics.

	Total Sample n (%)	Intervention Group n (%)	Control Group n (%)
Gender
Male	12 (27.27%)	5 (26.32%)	7 (28%)
Female	30 (68.18%)	13 (68.42%)	17 (68%)
Other	2 (4.55%)	1 (5.26%)	1 (4%)
Sexual Orientation
Heterosexual	37 (84.09%)	15 (78.95%)	22 (88%)
Homosexual	2 (4.55%)	2 (10.53%)	0 (0%)
Bisexual	2 (4.55%)	0 (0%)	1 (4%)
Other	1 (2.27%)	0 (0%)	0 (0%)
Prefer not to say	2 (4.44%)	2 (10.53%)	0 (0%)
Marital status
Single	28 (63.64%)	9 (47.37%)	19 (76%)
Widowed	1 (2.27%)	0 (0%)	1 (4%)
Married/Civil partnered	14 (31.82%)	9 (47.37%)	5 (20%)
Prefer not to say	1 (2.27%)	1 (5.26%)	0 (0%)
Ethnic Group
Asian	2 (4.55%)	1 (5.26%)	1 (4%)
Black	1 (2.27%)	1 (5.26%)	0 (0%)
Mixed/Multiple Ethnic Groups	3 (6.82%)	1 (5.26%)	2 (8%)
White	38 (86.36%)	16 (84.21%)	22 (88%)

Table 2. Information about visible differences of participants.

Visible Difference	Number reporting condition	Percentage of sample reporting condition
Cleft lip and/or palate	13	29.55%
Psoriasis	9	13.64%
Eczema	5	11.36%
Scarring	5	11.36%
Alopecia	2	4.55%
Birthmarks	2	4.55%
Rosacea	2	4.55%
Vitiligo	2	4.55%
Disorders of sex development	1	2.27%
Facial palsy	1	2.27%
Hydrocephalus	1	2.27%
Microtia	1	2.27%
Lipoedema	1	2.27%
Trichorhinophalangeal syndrome	1	2.27%
Strabismus	1	2.27%

Table 3. Outcome measure means for each group at each time point.

	Intervention Group (n = 19)						Control Group (n = 25)
	T1 Pre-Intervention (Baseline)		T2 Post- Intervention (5 Days Post Enrolment)		T3 3-Month Follow-Up		T1 Baseline		T2 5 Days Post – Enrolment		T3 3-Months Post – Enrolment
Measure	M	SD	M	SD	M	SD	M	SD	M	SD	M	SD	F(1,41)	η2
Functionality appreciation	3.41	1.11	3.85*	0.79	3.82*	0.69	3.31	0.74	3.36	0.86	3.63	0.68	1.17	0.03
Body appreciation	2.70	0.87	2.93	0.73	2.92	0.94	2.64	0.70	2.66	0.75	2.77	0.73	0.25	0.01
Depression	2.33	1.17	2.21	1.14	2.34	1.00	2.87	1.02	2.69	1.06	2.75	0.90	0.16	0.00
Anxiety	2.40	1.16	2.51	1.13	2.53	1.15	2.72	1.09	2.58	1.05	2.58	0.84	0.18	0.00

*Indicates significant mean group differences.

Table 4. Acceptability data: Intervention Feedback.

Feedback Question	M	SD	Range of Scores
Overall, how much did you enjoy taking part in the programme? (0 =  Not at all, 100 = Very much)	76.09	21.49	29–100
Overall, what kind of impact did the programme have on you? (0 = Very negative, 100 = Very positive)	71.26	19.72	38–100
What did you think about the number of writing exercises? (0 = Too few, 100 = Too many)	54.91	18.45	28–100
What did you think about the length of each writing exercise? (0 = Too short, 100 = Too long)	56.36	22.74	6–100
What did you think about the online format of the programme? (0 = Dislike, 100 = Like)	85.91	23.38	23–100

Table 5. Content analysis of writing task data (Intervention group only).

Categories	Content written in writing tasks				Intercoder Reliability (Cohen’s Kappa)
	Task 1	Task 2	Task 3	Total
Areas of Body Functionality
1. Physical abilities (Task 1)	25.07%*	8.42%	3.05%	12.71%	0.67
2. Senses and sensations (Task 1)	12.06%*	2.63%	4.81%	6.75%	0.68
3. Internal processes (Task 2)	15.17%	21.71%*	10.92%	14.96%	0.70
4. Creativity (Task 2)	6.69%	18.29%*	4.11%	8.75%	0.83
5. Self-care (Task 3)	10.93%	14.08%	29.11%*	16.82%	0.71
6. Communicating (Task 3)	17.06%	8.16%	32.04%*	18.43%	0.87
Other Categories
7. Appearance	7.54%	5.13%	6.46%	6.21%	0.64
8. Daily Life	5.66%	2.89%	3.05%	3.86%	0.50
9. Physical health	6.88%	9.08%	6.22%	6.96%	0.72
10. Mental health	10.93%	8.68%	12.79%	10.39%	0.63
11. Me and my body	13.76%	11.97%	5.63%	10.18%	0.59
12. Sense of self	5.94%	6.32%	4.58%	5.36%	0.59

*Notes: Participants were asked to explore this theme within the writing task. Number represents the count of that code relative to all other code count.

Table 6. Descriptions and examples of content analysis categories from participants’ writing entries.

Category	Description	Examples areas	Example Quotes
Areas of Body Functionality
Physical abilities (Task One)	Physical things our bodies can do	Playing sports, flexibility, strength, coordination, stamina, balance, energy	‘I am a keen gym goer’ ‘Going out walking, yoga at home, exercising with music’ ‘My body is capable of walking and venturing out’
Senses and sensations (Task One)	Using our senses and experiencing our surroundings	Seeing, smelling, hearing, touching, tasting, enjoying and experiencing	‘thankful for being able to smell beautiful perfumes and beautiful home cooked foods’.
Internal processes (Task Two)	Processes that go on inside our bodies automatically	Using the brain (memory, imagination, learning), breathing, digestion, growth, healing, hormones	‘[I use exercise] as a release, as a way of increasing my endorphins’ ‘to hear inside my head the words I've used. I can type at the speed of my thoughts’
Creativity (Task Two)	Using the body to engage in creative endeavours	Drawing, writing, gardening, playing games, cooking/baking	‘I am quite adept at making cakes and quite creative at conjuring up a healthy meal with little planning and only scant regard for the recipe book’
Self-care (Task Three)	Engaging in activities to take care of ourselves	Washing, relaxing, eating, drinking, comfort, rest, alone time	‘I can go into the bathroom, wash my face, brush my teeth, comb my hair and moisturize my body’
Relationships and communicating (Task Three)	Using the body to communicate and form/maintain relationships	Socialising, communicating, giving and receiving love, relationships, intimacy	‘speak to my family and friends’ ‘I like to chat with others … and enjoy their interaction’.
Other Categories
Appearance	How I and others perceive my looks	Confidence, self-image, my visible difference, others’ perception of my appearance	‘[Relishing in how my body adapts] takes me away from focusing on my wobbly bit, or my skin condition’
Daily life	My body allows me to live my life	Chores, routine, my job	‘My body and brain allow me to work and be good at my job’ ‘can focus, take charge, execute plans with results’
Physical health		Health conditions, disability, injury and/or illness, treatments, pain	‘Any way i am at the moment try to lose weight to get better health i am drinking more water more fruit and salads’
Mental health		Mental health, emotions, mindfulness	‘although anxiety often prevents [going for a walk]’
Me and my body	My connection to my body	Feeling connected to body, pushing myself, learning about my body, gratitude and amazement towards the body	‘relish in how my body adapts and transfers use to other things’
Sense of self	What makes me ‘me’	Expressing myself, aging, spirituality/religion, being ‘normal’, my values	‘[Playing tennis] is an activity that is really important to me as it acknowledges my sentience’

Data availability statement

Anonymous data can be made available on request.