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

Abstract

Objectives

The aim of the present study was to report the specific challenges pertaining to the experiences and needs of (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children, regarding their relationship and relationship roles. The study sought to identify similar and differing relationship patterns between the two dyadic types.

Design

This prospective observational study used an exploratory mixed-methods approach.

Participants

Patients and caregivers were recruited (Feb. 2018 – Nov. 2019) via general and specialist palliative care providers in Germany.

Methods

The study combined semi-structured interviews with quantitative questionnaires covering socio-demographic details, attachment style and emotional intimacy.

Findings

A total of 65 patients and 42 family caregivers participated in the study. Interview data indicate that illness situation and dependencies were perceived in both dyads to represent a relationship role reversal contrary to the ‘natural order’. With respect to dyad 1, adult children stressed their need for autonomy, whereas caregiving parents strived for greater intimacy in the relationship. Within dyad 2, terminally ill parents and adult children experienced a new relationship intensity. Questionnaire data showed that emotional intimacy was perceived by patients in both dyads and adult child caregivers as significantly higher in the current illness situation compared to the pre-illness situation.

Conclusions

This was the first study to contribute to an understanding of the different needs of terminally ill adult children/parents and their parent/adult child caregivers, thus contributing to an understanding of the different needs of these parties, both within and between the dyadic forms. The results suggest that the dyads share similar themes, which should be integrated into general support interventions; however, some themes appear more relevant for one dyad, only.

Implications for Psychosocial Providers

For both dyads, we recommend psychological counseling to support open communication and understanding between parties.

Keywords:

• Adult children
• hospice care
• palliative care
• parent–child relations
• parents

Introduction

In Germany, more than 15,500 adults die each year before reaching the age of 45.¹ A considerable number of these persons are survived by at least 1 parent. Even terminally ill and dying adult children who are far older than 45 may have elderly parents who are still alive, and who must cope with their child’s illness. In addition, adult children must frequently face their parents’ terminal illness and death. Accordingly, while adult children comprise one of the major sources of care for ageing parents,² increasingly, elderly parents are providing care to their seriously ill adult children.

Whether – and to what extent and in which ways – adult children and their parents are involved in the provision of instrumental, financial and emotional support for the affected other in the dyad depends on diverse factors:³ variation between families and family obligation norms,⁴ cultural expectations,^5–7 the nature of the child–parent relationship⁸ and – indirectly – the early parent–child relationship.^3,9 Thus, the adult child–parent relationship significantly impacts the type of care that is given and received between adult children and their parents.

A topical scoping review¹⁰ showed that no study has examined adult child–parent relationships in the context of two specific dyads: (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. The limited body of literature on adult child–parent caregiving relationships at the end of life indicates that, in both dyads, reciprocity and mutual support are perceived as constituent elements of the caregiving relationship.^11–13 The term ‘caregiving’ is used in this article in its broadest sense, encompassing both practical support (i.e. carrying out concrete activities for the dyad partner such as physical care) as well as emotional support (e.g. talking to the dyad partner on the telephone).^14,15 Caregiving in end of life situations may provide opportunities for children to become better acquainted with their dying parent and to strengthen and reestablish an estranged relationship.^{11,13,16–18} However, conflict may also arise during caregiving that disturbs the adult child–parent relationship.^13,19 Furthermore, it is known that parents experience their adult child’s terminal illness and impending death – in addition to the act of caring for their seriously ill adult child – as stressful and confusing, as it is thought to go against the ‘natural order’ of life, which holds that children should care for and survive their elderly parents.^11,17,20,21 In this situation, conflict may arise in the process of negotiating the adult child’s autonomy. Parents may express a desire to care for their terminally ill child, whereas their adult children may turn to their own nuclear family for primary caregiving and decision-making.^11,17,20,22 Regarding the adult children of terminally ill parents, filial piety, filial responsibility and the social obligation to care for a dying parent are key issues around which the caregiver identity takes shape.^12,19,23 In some cases, the inability to fulfill caregiving duties and to care for a dying parent at home can disrupt the adult child–parent relationship.^19,23

The present study focused on these two specific dyadic constellations. It formed part of the larger research project Dy@EoL²⁴ which aims at developing and providing recommendations for needs-based psychosocial support interventions for both forms of adult child–parent dyads.

Study aim

The aim of the present study was to report the experiences and needs of adult children and their parents regarding their dyadic relationship and relationship roles. The study explored the core research question: What are the specific relationship aspects and roles experienced by adult children and their parents in end of life situations, and what are their expressed needs with regards to these roles and relationship aspects? Furthermore, the study investigated specific factors of attachment style and emotional intimacy in the context of the adult child–parent relationships. Specifically, comparisons were made between the dyadic formations of terminally ill adult children and their parents and terminally ill parents and their adult children.

Methods

Study design

This prospective observational study used an exploratory mixed-methods approach. A qualitative semi-structured interview was designed to elicit information pertaining to the adult child–parent relationship and relationship roles; and quantitative self-report questionnaires were used to capture socio-demographic details, attachment style and emotional intimacy levels.

Setting

Participants were recruited in Germany via a university hospital (through the palliative care unit and palliative consulting service, and through a press release on the hospital’s Intra- and Internet), the palliative care unit of an academic teaching hospital, 3 hospices, 3 specialized palliative home care teams, 1 palliative and hospice home care service provider and 2 general practitioners.

Sampling

Eligible participants were defined by inclusion and exclusion criteria that were reviewed and approved by the research team and recruitment partners (Table 1). Convenience sampling was performed for all patients drawing on palliative and/or hospice care, as well as their adult children/parental caregivers. Individuals were eligible to participate in the study irrespective of their sex, ethnic background and primary diagnosis.

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

Parents and children who were related through adoption or fosterage were included. If the terminally ill patient was unavailable to participate in the study, but agreed that the project team could contact an eligible relative for participation, this relative was invited to participate. If one of the dyad partners refused to participate or withdrew consent prior to, during or after the study, the already collected data of the respective dyad partner was used or the planned data collection with the other dyad partner went ahead. If a patient participant died prior to the study completion, no interview was conducted with the relative but the patient interview was used.

Recruitment

Recruitment took place between February 2018 and November 2019. Eligible patients were invited to participate by a member of the research team or a staff member of a recruitment partner. All participants received oral and written information about the nature, content and aim of the study and provided written informed consent prior to participating. Participants were interviewed immediately after receiving information or booking an appointment, according to their preferences. If participants appeared overburdened or tired, unable to concentrate or very emotionally agitated during the interview, a short period of discontinuation was offered. All data were saved pseudonymously. Participants received a small gift of appreciation for their voluntary participation.

(1) The qualitative data collection for dyad 2 ceased in April 2019, when data saturation was achieved. At this point, 11 dyads had been interviewed and no further ideas or codes were emerging regarding the parent–adult child relationship. Given the overlap between interviewing, transcribing and coding, some previously collected interview data were included in the data analysis (3 parent adult–child dyads, 1 ill parent and 1 ill adult child) and scheduled interviews (ill parent: 1; ill adult child: 1) continued as planned, because the research team found it unethical to cancel appointments.

(2) The questionnaire data collection for dyad 2 continued until August 2019, which was the scheduled end of the data collection phase. This decision was taken because a larger number of completed questionnaires was thought to provide a more nuanced and complete specification of the affected adult children and parents.

The recruitment period for dyad 1 was extended to the end of November 2019, in order to achieve sufficient participation for data saturation.

Data collection and instruments

A qualitative semi-structured interview was conducted with all patients who consented to participate in the study. Prior to data collection, an interview guide was developed by the project team members (FAH, SSt) and scrutinized in a first meeting of the project’s scientific advisory board (January 2018).^24,25 The interview was designed to elicit participants’ experiences and needs regarding their relationship and relationship roles within the dyad; it was also designed to encourage participants to freely provide their perspectives.^26,27 Interviews were conducted by a trained researcher (FAH, LG) in the patient’s room; in one of the recruitment centers (e.g. on the terrace or in a common or consulting room); in the project team office; in the home of the patient or caregiver; or via telephone. The dyad partner or other relatives were present during some interviews.

Furthermore, a socio-demographic questionnaire (patient: 11 questions; caregiver: 14 questions) was applied, and validated psychological questionnaires were used to assess attachment style and emotional intimacy. The 14-item Relationship-specific Attachment Scales for Adults (RASA)²⁸ was applied to measure ‘secure–fearful’ and ‘dependent–independent’ dimensions on a 5-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Participants’ relational intimacy in the current situation and prior to the illness was assessed on a one-dimensional line, with the study participant as the anchor point, using the Graphic Closeness Scale (GCS).²⁹ The GCS ranges from 1 (very close) to 0 (not close/very distant). According to participants’ preferences, questionnaires were either self- or interviewer-administered. No prior relationship existed between the researchers and participants.

The authors conducted a reflexivity exercise and assessed the interviews following the consolidated criteria for reporting qualitative research.³⁰ The study method was assessed using the Good Reporting of a Mixed Methods Study checklist.³¹

Data processing

All but one qualitative interview were audio-recorded and transcribed verbatim by trained student assistants. One patient did not consent to an audio recording, but the interview was written down by an investigator (LG) and checked by a second investigator (FH); the participant was then asked to verify and release the written interview text prior to analysis. Each transcript was carefully checked by both investigators (FAH, LG). Transcripts and written interview texts were returned to the participants, upon request.

Data analysis

(1) Qualitative interview transcripts and texts were analyzed with the software MAXQDA,³² using the grounded theory procedures³³ advanced by Corbin and Strauss.³⁴ This method was chosen because it is suitable for investigating fairly unknown phenomena and it engenders a systematic understanding of peoples’ experiences.

Transcripts and written texts were systematically and independently coded by the two investigators (FAH, LG). In the first step, units of meaning were openly coded in a bottom-up approach using short descriptive codes (level 1). Coding of interviews occurred in an iterative fashion once the interviews were complete. Second, codes were thematically grouped into higher level concepts (level 2) representing the key topics that emerged from the interviews. Third, the two investigators discussed disagreements until consensus was reached. Finally, in an axial coding stage, concepts were combined into broader categories (level 3). All codes, concepts and categories were defined in code memos. As the interviews progressed, the interview guide was modified slightly on the basis of the interview responses (specifically in the first 5 interviews). To ensure methodological rigor, a third researcher (SSt) reviewed the consistency and precision of the codes, concepts and categories. The overall coding procedure was used to develop hypotheses pertaining to adult child–parent relationships within the context of a terminal illness, in line with participants’ interview responses.

(2) Quantitative questionnaire data were analyzed in a descriptive manner according to the existing manuals, using IBM SPSS Statistics 26 (SPSS Inc., Chicago, IL, USA). RASA mean scores for both scales (scale 1: secure–fearful; scale 2: dependent–independent) were calculated. A high score (up to a value of 5.0) on scale 1 and a low score (down to 1.0) on scale 2 was considered indicative of a secure-independent attachment style. Regarding the GCS, centimeters were linearly transformed to obtain a range from 1.0–0.0.

Unpaired t-tests were used to determine p-values for group differences. Paired t-tests were performed for the GCS to compare perceived emotional intimacy in the current situation versus perceived emotional intimacy in the pre-illness situation. One-way ANOVA and Tukey’s post hoc tests were used to conduct multiple comparisons. P-values of <0.05 were considered statistically significant. Data were saved and processed electronically and pseudonyms were created.

Results

Socio-demographic and interview characteristics

A total of 65 patients (dyad 1: 19; dyad 2: 46) and 42 family caregivers (dyad 1: 13; dyad 2: 29) participated in the study (Table 2). For dyad 1, 32 interviews (19 ill children; 13 parents) were conducted; for dyad 2, 52 interviews (32 ill parents; 20 adult children) were conducted. The mean interview duration was 31.7 minutes (range: 10–78 min.). All but 5 telephone interviews with dyad 2 adult child caregivers were conducted face-to-face. Quantitative questionnaires were completed by 31 participants of dyad 1 (19 ill children; 12 parents) and 75 participants of dyad 2 (46 ill parents; 29 adult children). Of the 45 participating ill parents from dyad 2, 5 did not complete the RASA and 4 did not complete the GCS.

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.

Considerable variation in the socio-demographic and relationship characteristics of participants was observed (Table 2). Cancer and non-cancer patients participated in the study, though the majority of patients had a primary diagnosis of malignancy (86%). The scope of family caregiving in the previous week ranged from no caregiving (e.g. due to occupational obligations in another country or own illness) to caregiving around the clock. Patients and family caregivers in diverse family contexts, terminal illness and caregiving situations participated in the study. Some patients have been ill since birth; others fell ill much later in life (e.g. with cancer). Some family caregivers have been providing support to patients for 30 years, whereas others recently started caregiving for their loved one.

Findings from the coding analysis of the qualitative interviews regarding adult child–parent roles and relationships in the end-of-life situation

The coding analysis identified five key codes regarding patients’ and caregivers’ experiences and expectations of the dyadic relationship and adult child–parent roles: (1) relationship change, (2) role perception, (3) patient permission for caregiver visits/contact, (4) patient perception of caregiver’s support as problematic/unacceptable and (5) exchange of (shared) memories. Representative quotes for each code are presented in Table 3.

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.

The qualitative interview data for dyad 1 show that the situation of the adult child’s illness and resulting dependencies were perceived as contrary to the ‘natural order’. Ill adult children and their parents said that ‘the normal thing’ would be for parents to predecease their children, and for adult children to care for their elderly parent, rather than the reverse.

In dyad 2, terminally ill parents and their adult children described a reversal of long-established family roles. Whereas previously parents had cared for their children as they aged, now, the terminally ill parents and the adult children were slipping into alternate roles: parents were no longer able to care for their children and were even becoming dependent on their children; likewise, children were no longer receiving care but were becoming their parent’s caregiver. This change brought about challenges for both parties. Terminally ill parents had to accept that they were no longer the ‘strong part’ of the dyadic relationship and, in some cases, they even had to accept their children’s assistance with bodily hygiene matters. For their part, adult child respondents explained that providing bodily care to their parent was difficult. One adult son said that rubbing an ointment on his mother’s back was his personal limit. However, an adult daughter claimed to enjoy shaving her father’s beard and cutting his fingernails, saying that these practices of bodily care brought them closer together.

With respect to dyad 1, the caregiving parent and ill adult child sometimes held contradictory needs for both closeness and distance. Our data indicate that parents tended to desire more intimacy than the seriously ill adult children were willing to provide. Instances arose in which adult children desired space away from their caregiving parent. They reported that the continuous presence of their parent prevented them from receiving other visitors. They also highlighted the strenuous effort involved in constantly interacting with the parent – not least because of the physical exertion required from their weakened body. Also, the adult children stressed their need for autonomy. For example, one participant described how important it was for her to put on her stockings independently. In our interview data, we also found instances of parents who noticed and accepted their adult child’s need for freedom and autonomy.

Also in dyad 2, some parents and adult children shared childhood memories. Furthermore, the adult children were often able to become better acquainted with (i.e. discover new aspects of) the terminally ill parent – for example, by discovering a new facet of the parent’s humor or learning something new about his/her past. The interview data also suggest that terminally ill parents and adult children experienced a new (or renewed) relationship intensity within the context of the illness situation.

Findings from the questionnaire analysis regarding attachment style and emotional intimacy

Analysis of the GCS scores showed that emotional intimacy was perceived by patients in both dyads as significantly higher in the current situation compared to the pre-illness situation (judged retrospectively). Ill adult children’s GCS scores increased from a mean of .63 pre-illness to .78 in the illness situation; ill parents’ scores rose from .74 to .85 (see Table 4 for significant differences in GCS values). A similar shift was evident in the adult child caregivers, who perceived emotional intimacy as significantly higher in the current situation (mean: .89) compared to the pre-illness situation (mean: .79). Moreover, caregiving parents perceived the emotional intimacy in their relationship with their adult child prior to the illness as significantly higher (mean: .82) than that perceived by the ill adult children (mean: .63).

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.

The RASA results show that ill parents scored significantly higher on the secure–fearful scale (mean: 4.69, indicating a more secure attachment style) than did ill adult children (mean: 4.18) and adult child caregivers (mean: 4.35) (see Table 5 for significant RASA differences). What is also striking about the RASA data is that parent caregivers had a more secure attachment style (mean: 4.69) than did adult child caregivers (mean: 4.35), and patients with 2 or more children (mean: 4.73) had a more secure attachment style than did patients with no children (mean: 4.00). Regarding the dependent–independent scale, the data showed that younger adult child caregivers (aged 18–44.9 years) had a more dependent attachment style (mean: 2.35) than their older counterparts (aged 45–66 years; mean: 1.82).

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.

Discussion

Main findings

The present study highlighted commonalities and differences in relationship experiences, needs and roles, as well as emotional intimacy and attachment style, between two dyadic constellations: terminally ill adult children and their parents (dyad 1) and terminally ill parents and their adult children (dyad 2). Regarding the commonalities, in both dyads, loss of the patient was experienced – as described in the qualitative interviews – by parents and adult children as existential. Moreover, and as shown in previous studies,^11,17,20,21 the issue of role reversal was addressed by both dyads. In dyad 1, role reversal was discussed in terms of opposing the ‘natural order’; however, in dyad 2, the reversal of long-established family roles was treated as most significant.

Results from the GCS showed that the emotional relationship was perceived by ill patients in both dyads, as well as by adult child caregivers, as more intimate in the current situation compared to the pre-illness situation (judged retrospectively). This finding, particularly regarding dyad 2, is not surprising in light of the qualitative interview material: ill parents and their adult children reported sharing childhood memories and getting to know one another more intimately in the end of life situation, experiencing a new (or renewed) relationship intensity. This result was also interesting in the context of the RASA scores, which showed that younger adult children had a more dependent attachment style than their older counterparts. In line with this result, previous work has demonstrated that end of life situations may provide new opportunities for adult child caregivers to become better acquainted with their dying parent.¹³ Similarly, Devery³⁵ showed that, within caregiving situations in the context of elderly residential care, continuous reconstruction of family relationships served to preserve relational intimacy.

Regarding relationship needs, both dyads reported challenges relating to giving and receiving care. Adult child caregivers in dyad 2 mentioned instances in which their terminally ill parent rejected their care. Dyad partners frequently had diverging expectations, typically relating to differing needs for autonomy and closeness between parents and adult children; such differences were most frequently reported by ill adult children and caregiving parents in dyad 1. The qualitative interviews showed that ill adult children often sought distance in their relationship to their parent, whereas the parent desired closeness; ill adult children expressed a desire to spend less time with their parent and with other relatives, instead. Also, in some instances, ill adult children’s and parents’ perceptions and definitions of core family members varied. Previous research has emphasized the conflict between parents who want to care for their dying child and adult children who prefer to receive care from their own children or spouse.^{17,20–22,36} Raveis et al.³⁷ showed that parents may feel excluded from their terminally ill adult child’s decision-making regarding treatment and care. Moreover, previous research has demonstrated that ill parents wish to prevent distress and a sense of burden in their loved ones.³⁸ The current results also show this phenomenon in dyad 1: terminally ill adult children had the impression that their parents were overburdened by caregiving demands.

Implications for research and practice

The starting point of the current study was an observation from clinical practice: adult child–parent relationships at the end of life appeared troubled due to the differing experiences and needs of adult children and their parents. Hence, the research focused on the two dyadic forms of (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children, in order to systematically investigate the experiences and needs of both parties. The current findings could be used to formulate hypotheses and a theoretical framework about the unique, similar and oppositional facets of adult child–parent dyadic relationships at the end of life. In particular, the results suggest common themes pertaining to both dyads that should be considered for support interventions (e.g. role conflict), as well as themes that appear more relevant to only one dyad (e.g. the need for autonomy in dyad 1; the sharing of childhood memories in dyad 2).

In regard to future research, more studies must be conducted to better understand how differing terminal illness and caregiving situations (e.g. differing illnesses; long-distance caregiving) may be more or less challenging for both dyad partners and their relationship.

Study limitations

The concurrent mixed-methods design was associated with challenges concerning the collection and integration of the results, particularly as both qualitative and quantitative data collection occurred at a single assessment point. The mixed-methods approach broadened and deepened our understanding of adult child–parent dyadic relationships at the end of life by contributing complementary perspectives on the theoretical assumptions. However, one shortcoming stems from the limited number of quantitative assessments; thus, the RASA and GCS data should not be interpreted independently, but only in the context of the qualitative interview data. Furthermore, the diversity of patients and caregivers was limited, as an inclusion criterion was sufficient German language skills to report on adult child–parent interactions. Findings might be different for diverse populations. In the recruitment centers, it was not possible to assess the number of eligible patients and family caregivers for the study and the reasons for which eligible persons were included or excluded. This limitation stems from the fact that some partnering institutions placed restrictions around the persons the research team was able to approach. Also, only patients/caregivers who agreed to participate were identified to the research team. The present study focused on the dyadic relationship with the caregiving adult child/parent and did not systematically obtain information on the involvement of other informal caregivers and formal care providers. Of course, the degree of their involvement is likely to affect the dyadic relationship.

Conclusions

The current findings support the hypothesis that adult children’s terminal illness and dependency on their parents runs against the ‘natural order’. Parents may feel a strong urge to care for their child, whereas they may find it difficult to accept the child’s need for space. In addition, the results support the hypothesis that terminally ill parents and caregiving adult children experience new (or renewed) relationship intensity, whilst also struggling to cope with the role change necessitated by the caregiving.

Authorship

Stephanie Stiel (SSt) (female), psychologist working as senior researcher, developed the original study plan and wrote the grant application. Franziska A. Herbst (FAH) (female), medical anthropologist working as senior researcher, led the project. FAH and Laura Gawinski (LG) (female), anthropologist working as researcher, collected and analyzed the data. SSt reviewed the consistency of the qualitative data and supervised the research process. FAH wrote the article. LG, NSch and SSt enhanced the quality of the article by revising it critically. All authors read and approved the final article.

Ethics approval

The project was approved by the Ethics Committee of Hannover Medical School: no. 7610, 04/10/2017.

Acknowledgements

The authors thank all adult children and parents for their participation, the institutional partners for facilitating recruitment and the scientific advisory board for supporting this project with their expertise. They acknowledge Valerie Appleby’s professional copyediting.

Data sharing

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

Additional information

Funding

The present study is part of the larger project ‘Dy@EoL – Interaction at the end of life in dyads of parents and adult children’, which is supported by the German Federal Ministry of Education and Research (BMBF) under Grant number 01GY1711.