Social support experiences when growing up with a parent with Huntington’s disease

Figures & data

Table 1. Participant demographic characteristics (N = 36).

Variable		Label	N
Age	13–18 years	Teenager	7
	19–35 years	Young adult	10
	36–65 years	Adult	19
Gender	Female		26
	Male		10
Parent with HD	Mother		19
	Father		17
Occupational status	Student		8
	Full-time employment		14
	Part-time employment		3
	No employment		8
	Unknown		3
Marital status	In a relationship/married		18
	Single		12
	Unknown		6
Family status	One or more child		16
	No children		17
	Unknown		3

Table 2. Main topics and sample items applied in the semi-structured interview guide.

Interview topic	Sample question
Background information	What is your motivation to participate in this study?
	Please describe the family you grew up in?
Childhood experience	Tell me about your childhood?
	How did your parents’ disease affect your family?
	What was your relationship with your mother and father like?
	How has growing up with a parent with HD affected you?
Disease- and self-disclosure	What is your experience of disclosing information about HD growing up?
	What are your thoughts on how parents should inform their children about HD?
Resources and support	What relationships were your sources of support growing up?
	How did you/ do you feel about having friends over to visit?
	How did relationships help you understand and cope with your situation?

Table 3. Superordinate themes and corresponding main themes and subthemes.

Superordinate themes	Main themes	Subthemes
How support helped	I felt connected to someone	I felt loved and cared for
		I felt less alone
	I learned how to cope	I developed skills
		I developed an understanding
	I got a break from reality	I had an escape
		My responsibilities were reduced
Support barriers	My needs for support were not understood	Parents are gatekeepers to support
		Others lack of knowledge about my situation
	I did not know if involving others would help	Protecting my family
		Protecting myself