“Have We Done Enough?” A Cross-condition Exploration of the Experiences of Parents Caring for A Child with an Appearance-affecting Condition or Injury

Figures & data

Table 1. Demographic information of 20 parent interview participants

	Mean	SD
Age	38	6.1
	N	%
Gender           Female           Male	16 4	80 20
Relationship to child           Mother           Father	16 4	80 20
Ethnicity           Asian other           White British           White European           White other           White Scottish	1 16 1 1 1	5 80 5 5 5
Marital Status           Single           Married           Divorced	2 17 1	10 85 5
Highest level of qualification GCSEs A Levels/HND/BTEC/ Bachelor’s degree Master’s degree Doctorate degree/PhD	2 7 7 2 2	10 35 35 10 10

Table 2. Demographic information of children of interviewed parents

	Mean	SD
Age	7	4.17
	N	%
Child gender           Female           Male	8 12	40 60
Child condition/injury           Alopecia           Amputee (Meningitis)           Cleft lip and palate           Congenital upper limb difference           Eczema           Facial Palsy           Microtia           Vitiligo	4 3 1 5 3 2 2 1	20 15 5 25 15 10 10 5

Table 3. Demographic information for 11 health and support professional interview participants

	Mean	SD
Age	39	8.85
	N	%
Gender           Female           Male	11 0	100 0
Ethnicity           White British           White Irish           White Scottish	7 3 1	64 27 9
Highest level of qualification           A Levels           Bachelor’s Degree           Master’s degree           Doctorate degree	1 3 3 4	9 27 27 37
Job role Administrative & support Charity managerial & support Dental Surgeon Family support worker Psychologist	1 3 1 2 4	9 27 9 18 37

Table 4. Demographic information of 25 focus group participants

	Mean	SD
Age	46	6.43
	N	%
Gender           Female           Male	18 7	72 28
Ethnicity           White British           White European           White Irish           Not specified	17 5 2 1	68 20 8 4
Highest level of qualification GCSEs A Levels/HND/BTEC Bachelor’s degree Master’s degree Not specified	2 5 9 7 2	8 20 36 28 8
Relationship to child           Mother           Father	17 8	68 32
Gender of child           Female           Male	17 3	68 12
	Mean	SD
Age of child	12	6.01

Table 5. Example questions and prompts from interviews and focus groups

Example parent interview questions	Example parent focus group questions	Example professional interview questions
As a parent, what has your experience of your child’s condition/injury been like so far? Example prompts: Have there been any particular times when things have been more challenging? Can you tell me about any positive experiences that you may have had as a result of your child having an appearance altering condition/injury?	What have been some of the challenges and experiences that have arisen as a result of your child having a visible difference? Example prompts: How did that affect you as a parent/as a family? Can you say a bit more about that? Can you explain what you mean by … ? Why do think that experience had that impact on you/your family? Why do you think that was particularly challenging?	Can you describe for me what you feel the support needs of parents with a child with an appearance-altering condition/injury are? Example prompts: What concerns/problems/challenges are coming to you with? What are the key time points for support on the patient/service user journey?
Can you tell me about any support that you have received as a parent? Example prompts: What has made it easier/harder for you to access support? Who has that support been from? If any, what additional support would you like/would have liked? How was that/would that be beneficial for?	What support have you received as a parent of a child with a visible difference? Example prompts: What did that support include? Who provided this support to you?/What was the source of this support? Can you explain why you found that support helpful/unhelpful? What impact did this support have on you/your family? Why do you think that might be/might have been helpful?/How do you think that support would benefit your family?	What interventions/support do you provide/are you aware of for parents of children with an appearance altering condition/injury? Example prompts: Give examples e.g. online information, leaflets, groups etc.