‘Mums are sacred, and mums don’t die’: A mixed-methods study of adult child–parent dyadic relationships at the end of life

Figures & data

Table 1. Inclusion and exclusion criteria.

Inclusion criteria	Exclusion criteria
≥18 years of age	<18 years of age
Sufficient German language skills to report on adult child–parent interactions	Insufficient German language skills
Cognitive ability to participate	Cognitively impaired
In contact with at least 1 living parent (for dyad 1) or 1 living adult child (for dyad 2)	No contact with at least 1 living parent (for dyad 1) or 1 living adult child (for dyad 2)
Consented to participate in the study	Did not consent to participate in the study

Table 2. Socio-demographic and relationship characteristics of patients and family caregivers by dyad.

	Dyad 1		Dyad 2
	Ill adult children	Parents	Ill parents	Adult children
No. participants	19	13	46	29
Mean age; SD; range (years)	49.1; SD 12.3; range: 27–73	74.6; SD 6.5; range: 64–85 Missing: 1	70.0; SD 11.6; range: 36–89	45.9; SD 11.8; range: 23–66
Sex	Female: 14 Male: 5	Female: 9 Male: 4	Female: 24 Male: 22	Female: 21 Male: 8
Primary diagnosis	Cancer: 18 Non-cancer: 1	N/A	Cancer: 38 Non-cancer: 6 Missing: 2	N/A
Immigrant background	Yes: 1 No: 18	Yes: 0 No: 12 Missing: 1	Yes: 7 No: 37 Missing: 2	Yes: 1 No: 28
In a romantic partnership	Yes: 8 No: 11	Yes: 8 No: 4 Missing: 1	Yes: 27 No: 19	Yes: 20 No: 9
Mean no. children	1.0; SD 1.0; range: 0–3	2.3; SD 1.2; range: 1–5 Missing: 1	2.0; SD 0.9; range 1–5	1.1; SD 1.0; range 0–3
Living situation	Own home: 16 Hospice: 3	Own home: 12 Missing: 1	Own home: 33 Hospice: 10 Assisted living: 2 Missing: 1	Own home: 25 Parents’ home (temporarily): 4
Mean hours of caregiving in previous week	N/A	37.8; SD 44.9; range 0–110 Missing: 2	N/A	22.6; SD 34.7; range 0–168
Minutes to reach patient’s current place of residence	N/A	83.0; SD 140.6; range 0–480 Missing: 1	N/A	86.8; SD 120.5; range: 2–420

SD: standard deviation.

Table 3. Codes and text samples of the dyadic adult child–parent relationships from the coding analysis.

Codes	Text samples
Relationship change	Now he gets a little bit closer to me as if he wanted to say, ‘Who knows how long we'll have each other’. I cannot express it otherwise at the moment. (P1; ill parent)
	I like it when she [tells] me things. Sometimes you have the feeling that you don’t really know her yet. (F2; adult child caregiver)
	She sings a lot. She jokes. [She tells me] even things I haven’t heard of yet. […] I’m also experiencing her from a different side. (F3; adult child caregiver)
	It is very intense and you meet each other very emotionally. […] These are […] moments that I enjoy because my father was never very emotional. And when he shows that now, that’s something special. [crying] (F4; adult child caregiver)
	I don’t think we’ve ever been as emotional as we have been in the past 6 months. Well, my father is a rather […] top-heavy person, so not necessarily a bolt of emotion. […] I experience my father from a completely different side. […] He […] allows and enjoys the closeness and holding hands. (F5; adult child caregiver)
Role perception	Well, she is not a stranger. This is our daughter. And we love our children. And the feeling and the thought that a child has to go and we can’t do anything […] that’s the worst. […] We have mastered many things, and we have managed them ourselves, we could change them. And now this thing, we can’t change it. (F6; parent caregiver)
	Mum is mum. Mums are sacred, and mums don’t die. It doesn’t matter how old you are. You can also be over 90 and it’s still a tragedy when mum dies. (F7, adult child caregiver)
	It’s just very difficult. I’m at an age when one should be looking after the mother and not the other way around. (P8; ill adult child)
	I would like to take care of my mother, not that she has to take care of me. (P9; ill adult child)
	I don’t know what I would do if I knew my child was terminally ill. […] That’s not the normal thing; the normal thing [in quotation marks] is that the parents go before the children. (P10; ill adult child)
	He accepts help, but […] that is difficult, because he is my father and has always been the strong part and I am the daughter and not the wife, and if I am allowed to change underpants or do the colostomy bag, then he lets me do it and is also very patient, but you can already see in his eyes that he does not like it, that he cannot do it alone anymore. (F4; adult child caregiver)
Patient permission for caregiver visits/ contact	She clings to me. […] This is also very noticeable and annoying. She would like to stay here [i.e. in the patient’s room] forever. […] She also always says: ‘Oh, close your eyes when you’re tired. I won’t say anything.’ Then she sits here and sleeps too, but what good does that do me, right?! She is very pushy, isn’t she? Well, she’s here all the time now. (P11; ill adult child)
	At first, yes, I felt a little rejected [i.e. when the ill adult child asked the parent to leave]. But now I know he can’t help it. […] I can live with that, so then that’s fine with me. He says, ‘No, no further’. (F12; parent caregiver)
Patient perception of caregiver’s support as problematic/unacceptable	It was just […] stupid […] to be dependent on her […]. She then immediately felt like a super mum or something else. It was almost too exhausting for me again. She often called […] from work when she had nothing to do. (P11; ill adult child)
	We would stay here at night too. Okay, I snore a little. He doesn’t like that. He also doesn’t want you to [stay at night]. Maybe it’s a bit of shame. When I’m 45, my mum has to be here with me. [crying] (F13; parent caregiver)
	If you keep pampering him, he won’t want that. Even […] if the stocking slips or something, he wants to do it all by himself: ‘Mother, go away!’ He also wants to do himself what he can do himself. (F12; parent caregiver)
	At the beginning […] it worried me that my mum has to be here for me now, that she has to support me so much. (P9; ill adult child)
Exchange of (shared) memories	We’ve been looking at a lot of photos when I was here the last few days. [We talk about] the past […] about previous vacations. (F3; adult child caregiver)
	I am also one of the last contemporary witnesses of the past. […] That […] is of course also interesting for my son […] to learn something more about it. How did you fight your way through back then? (P14; ill parent)

Quotes from dyad 1 are set in plain text font; quotes from dyad 2 are set in italics; P: patient; F: family caregiver.

Table 4. Significant differences in GCS values between patients and caregivers in dyads 1 and 2.

Patient/caregiver group	GCS scale	N	Mean	SD	p-value
Ill adult children	Pre-illness situation	19	.63	.26	.040
	Current illness situation		.78	.22
Ill parents	Pre-illness situation	41	.74	.25	.003
	Current illness situation		.85	.17
Adult child caregivers	Pre-illness situation	29	.79	.16	.004
	Current illness situation		.89	.09
Ill adult children	Pre-illness situation	19	.63	.26	.039
Parent caregivers		12	.82	.19

SD: standard deviation.

Table 5. Significant differences in RASA secure–fearful/dependent–independent scores between patient and caregiver groups.

Attachment scale	Patient/caregiver group	N	Mean	SD	p-value
Secure–fearful	Ill adult children	19	4.18	.88	.013
	Ill parents	41	4.69	.63
	Ill parents	41	4.69	.63	.019
	Adult child caregivers	28	4.35	.48
	Parent caregivers	12	4.69	.36	.032
	Adult child caregivers	28	4.35	.48
	Patients (dyads 1 & 2) with no children	8	4.00	1.03	.032
	Patients (dyads 1 & 2) with ≥ 2 children	32	4.73	.41
Dependent–independent	Adult child caregivers (18–44.9 years)	12	2.35	.60	.033
	Adult child caregivers (45–66 years)	17	1.82	.64

SD: standard deviation.

Data sharing

The datasets analyzed in this study are available from the corresponding author upon reasonable request.