Table 3.

Themes and codes about the caregiver experience

Theme	Code name	Number of letters	Number of codes
Caregiver challenges		81	224
	Feels unsupported	43	57
	Sudden life change	28	34
	Unprepared for changes	26	31
	Competing demands (children/parents)	24	38
	Relationship strains	24	30
	No GBM knowledge	17	18
	Underestimating care burden	11	14
Caregiver responses		77	223
	Exhausted/overwhelmed	41	55
	Lack of control	35	53
	Agony	31	32
	Post-traumatic stress disorder	21	26
	Disappointment	18	22
	Fear	16	20
	Regret	9	9
Coping strategies for caregivers		86	203
	Mission to raise awareness	54	67
	Family, friends, and pets	35	43
	GBM spouse support	27	29
	Faith, hope and strength	18	32
	Preparing for end of life	14	17
	Fulfilling wishes	7	10
	Family medical leave—employer disability	5	6
Tangible needs for caregivers		92	355
	Caregiver education needs	66	135
	Insurance and disability limitations	47	73
	Job-finance changes	35	46
	Care coordination challenges	30	37
	Grief support needs	29	36
	Equipment needs	23	28

GBM, glioblastoma multiforme.