Facilitators and barriers in caring for a person with Huntington’s disease: input for a remote support program

Figures & data

Table 1. Characteristics of the HD caregivers and healthcare professionals.

Variable		N
Total sample		27
Gender	Male	10
	Female	17
Mean age (min-max, SD)		52.2 (10.9)
Ethnic background	European	23
	Turkish	1
	Surinamese/Antillean	1
	Mixed	2
Caregivers		19
Mean age (SD)		54.5 (10.2)
Relationship to the person with HD	Spouse	15
	Child	1
	Sibling	2
	Multiple caregiving roles (spouse and parent)	1
Mean age of the person with HD (SD)		54.9 (13.9)
Time since diagnosis	Less than 2 years	2
	Less than 5 years	3
	Less than 10 years	6
	More than 10 years	8
Living situation of the person with HD	Living at home	18
	Admitted to a nursing home	1
Healthcare professionals		8
Mean age (SD)		46.8 (11.1)
Type of profession	Social worker	4
	Psychologist	2
	Case manager	1
	Elderly care physician	1

Figure 1. Caregiving process for a person with HD.

Table

Main topic	Subtopics
Experiences with HD in daily life	Caregivers: What has changed in your life since your loved one is affected with HD What helped or supported you? Healthcare professionals: What things do you notice that caregivers struggle with or encounter daily and would like support with?
Finding balance: maintaining balance between own activities and needs, and caring for the person with HD	Caregivers: What do you do to stay balanced? What helps you cope with challenges? Has the way you initially coped with challenges changed over time? Healthcare professionals: Do you recognize these answers, or do you have any additions?
Support needs regarding a tailored support program for caregivers of people with HD	Which themes do you consider important for a support program for caregivers of people with HD? Why do you think these are important? What would you like to know about this theme? Are there themes missing? Do you have any tips regarding these themes for (other) caregivers of people with HD?