The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer: A qualitative secondary data analysis

Figures & data

Table 1. Characteristics of grandchildren and grandparents.

Deceased grandchildren (n = 4)	n
Sex
Female	2
Male	2
Diagnosis
Malignant brain tumor	4
Age at time of death
0–5 years	1
6–12 years	1
13–18 years	2
Bereaved grandparents (n = 7)	n
Relation to child
Grandmother, maternal side	3
Grandmother, paternal side	3
Grandfather, paternal side	1
Occupational status^a
Working	2
Retired	5
Civil status
Married/cohabiting	4
Divorced/widowed	3
Time since grandchild’s death^b
6–12 months	1
12–18 months	5
≥18 months	1

^a At time of grandchild’s end-of-life.

^b At time of interview.

Table 2. Overview of the themes.

Overarching theme	Themes	Sub-themes
Navigating complex and unclear roles to support the family	Providing comfort and support	- Being present and supporting emotionally
		- Offering respite and practical support
	Balancing and adapting involvement	- Playing the “guessing game”
		- Treading cautiously
	Worrying silently	- Managing a challenging double role
		- Disregarding own needs and staying strong
	Managing difficult emotions	- Bearing the unbearable
		- Sharing memories and marking special days
	Calling for support and understanding	- Missing support for grandparents as caregivers
		- Searching for grandparents in the same situation
		- Living with taboos and misunderstood considerations