“I hope I’ll outlive him”: A qualitative study of parents’ concerns about being outlived by their child with profound intellectual and multiple disabilities

ABSTRACT

Background

The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns.

Method

We interviewed 27 parents of persons with PIMD and analysed the data thematically, to explore parents’ concerns about being outlived by their child.

Results

Most parents hoped to outlive their child with PIMD and related this to the expectation of a decreased quality of life (QoL) of their child, when they would have passed away. The uncertainty about who would fulfil their parental roles in the future contributed to parents’ concerns and sometimes resulted in feelings of despair.

Conclusions

Our study provides insight into the nature and gravity of parents’ concerns. The division of parents’ concerns into roles helps to address future care and support gaps for people with PIMD.

KEYWORDS:

• PIMD
• IDD
• ageing
• concerns
• fears
• future care planning

Persons with profound intellectual and multiple disabilities (PIMD) have a developmental age comparable to, or less than, an infant of 2 years old (estimated IQ < 20) and have profound neuromotor dysfunctions, often accompanied by sensory impairments and medical problems, such as seizures, respiratory and feeding problems. They have little or no understanding of verbal language, no apparent symbolic interaction with objects and are therefore always dependent on others (Nakken & Vlaskamp, 2007). Consequentially, parents of a child with PIMD play a large, often lifelong, role in the life of their child (Kruithof et al., 2020).

However, people with PIMD have a growing life expectancy and the chance that they outlive their parents increases (Kamstra et al., 2017), something that has been acknowledged for a longer time for people with less severe disabilities (Braddock, 2002). Studies on future care plans of families with a child with intellectual and developmental disabilities (IDD) in general, have shown that parents have concerns about being possibly outlived by their child with IDD (Bibby, 2013; Bigby, 2000). Several authors have suggested these concerns are rooted in the vulnerability and dependency of their children (Bibby, 2013; Hubert, 2006; Prosser, 1997) and studies have shown that some parents feel irreplaceable in the care and support for their child due to a lack of trust in professional care settings (Bowey & McGlaughlin, 2007; Davys & Haigh, 2008; Iacono et al., 2016). While in some of these studies, people with PIMD were part of the sample (Bibby, 2013; Bowey & McGlaughlin, 2005), to the best of our knowledge no study has specifically explored these concerns of parents to be outlived by their child with PIMD. Since persons with PIMD are entirely dependent on others for all aspects of their lives, even more so than persons with IDD, it is important to study how parents’ concerns and fears manifest themselves specifically for this group. This importance is underscored by the recommendations of previous studies to specifically explore the concerns of parents of children with the most severe type of disabilities, since the large dependency and the limited communication possibilities of their children may make parents feel even stronger about being irreplaceable in the lives of their children (Bibby, 2013; Bowey & McGlaughlin, 2005; Holland, 2000; Weeks et al., 2009).

From studies on people with PIMD and their families, we know that parents have concerns about being outlived by their child (Kamstra et al., 2017; Vlaskamp, 2012). However, these concerns are mentioned, rather than fully explored. Based on a literature review, we ourselves have suggested that these concerns may in part be rooted in the potential loss of non-readily transferable parental knowledge that is believed to be crucial in the support and care for people with PIMD (Kruithof et al., 2020). This potential loss of knowledge may be different for families with children living at home than for families with children living at a residential care facility (RCF), which necessitates exploration of differences between the parental concerns of both groups (Davys & Haigh, 2008). Moreover, including parents of children living at home may contribute to a better understanding of the experiences of what is often called a “hidden group” (Doody et al., 2013; Ryan et al., 2014; Smith & Tobin, 1990), since parents of children living at home are less likely to be on the radar of the formal services sector.

If we know more about the nature of parents’ concerns to be outlived by their child with PIMD and the reasons behind these concerns, we can address its implications for the care and support for people with PIMD and their families. Therefore, the aim of this study was to specifically explore the concerns of parents of a child with PIMD – living at the family home or at an RCF – to be outlived by their child by answering the following question: How do parents experience the possibility of being outlived by their child with PIMD?

Methods

We held semi-structured interviews with parents to elicit their concerns about being possibly outlived by their child with PIMD.

Recruitment

Parents were recruited with the help of two large RCFs for people with PIMD and an association of parents of children with PIMD – all in the Netherlands. Location managers of the RCFs disseminated our invitation letter among the parents. The chairperson of the parents’ association helped us by disseminating our invitation letter among the association’s members and by publishing it on relevant Internet pages and blogs. We included parents of children with PIMD (developmental age < 2 years) of 15 years and older because we expected that the theme of ageing would be considered less pressing by parents of younger children with PIMD. We aimed to obtain variation in the living situation and family composition by sampling purposively, because we expected that these factors might show variation in concerns of parents. In addition, by recruiting parents of children living home through a parents’ association, we aimed to include families that are less known by the formal services sector.

Data collection

KK conducted semi-structured interviews with parents, which took place at their home between May 2019 and August 2019. On three occasions, the mother and father were interviewed together. The interviews lasted between 60 and 150 min, with a mean of 90 min. We started each interview with an open question about which themes parents saw as most pressing related to their child’s ageing. These themes were explored first. After this, we used an interview guide with open questions about the ageing of their child with PIMD, based on prior research (Kruithof et al., 2020; Nieuwenhuijse et al., 2019) and literature (Bibby, 2013; Hall & Rossetti, 2018). At the end of each interview we verified if all subjects considered important by the participant had been discussed. In addition, to prevent overlooking relevant themes, respondents were offered some degree of control over the direction of the interview. If they went off-topic, this was not corrected, in order to allow them to speak in their own words about their own themes. As part of these interviews, we asked parents how they experienced and viewed the possibility of being outlived by their child, the consequences of such a scenario for the care, support and quality of life (QoL) of their child, and if and how such a scenario is of influence on the way they make medical decisions for their child. In this paper, we address our findings related to these questions.

Data analysis

The interviews were transcribed verbatim and analysed thematically (Miles et al., 2014) in MaxQDA. Thematic codes were assigned to interview excerpts. We made use of both theory-led and open coding. We used the following theory-led core concepts: parents’ views of being possibly outlived by their child, what their possible concerns constitute of, parental roles they fulfilled in the life of their child, the feasibility of transferring these roles. We made use of open codes to differentiate between opinions and experiences of respondents, and to include themes that proved relevant for respondents, but were not fully accounted for in the interview guide. KK, EO and AN, coded three interviews individually and compared the application of both theoretical and open codes for these interviews. After this, KK finalised the coding scheme and coded all remaining interviews. The data and the assigned codes were discussed among all authors throughout the analysis. Data saturation was reached after about 20 interviews. Nevertheless, we continued conducting and analysing interviews in order to confirm the saturation.

Research ethics

According to Dutch Law on Research Involving Human Subjects, this study did not need approval of a Research Ethics Committee, which was confirmed by the Research Ethics Committee of the Amsterdam UMC, location AMC (W19_166 # 19.203). We followed the ethical principles for medical research involving human subjects as laid down in the Declaration of Helsinki and adopted by the World Medical Association (2018). We informed eligible participants orally and by written letter about the research project and their rights, including the right to withdraw from the study at any moment. We provided the opportunity to ask questions and obtained written and oral consent. All data were anonymised to guarantee the confidentiality of participants.

Respondents

We interviewed 22 mothers and five fathers (mean age, 59; range, 46–74) of 25 children with PIMD. All participants had a Dutch ethnic background. Eight parents self-identified as Christian, the others self-identified as non-religious. The educational level of parents varied, both higher and lower educational levels were similarly represented. The age of their children with PIMD ranged from 15 to 50 (mean age, 26). Fourteen lived at home, 11 at an RCF (two of whom in RCFs organised by parents). Nineteen had at least one sibling without disabilities. (See Table 1)

Table 1. Respondents and their children.

Respondent	Age group	Age group child(ren) with PIMD	Developmental age child(ren)*	Living situation child(ren) with PIMD
Mother-1	40–50	10–20	Motor: 0–3 months Cognitive: 18 months	Home
Mother-2	50–60	20–30	0–3 months	Home
		20–30	0–3 months
Mother-3	50–60	20–30	3 months	Home
Mother-4.1	60–70	30–40	6–12 months	Home
Father-4.2	60–70
Mother-5	50–60	20–30	0–6 months	RCF
Mother-6	50–60	10–20	8 months	Home
Mother-7	60–70	20–30	12 months	Home
Mother-8	40–50	10–20	8–12 months	Home
Mother-9	60–70	20–30	6–8 months	RCF
Mother-10	40–50	10–20	12–16 months	RCF initiated by parents
Mother-11	60–70	20–30	–	Home
Mother-12	50–60	10–20	0–4 months	Home
Mother-13	40–50	10–20	–	Home
Mother-14	50–60	20–30	Motor: 9–12 months Cognitive: 24 months	Home
Mother-15	70–80	30–40	9 months	RCF
Mother-16	50–60	20–30	4 months	Home
Mother-17	50–60	20–30	Motor: 3 months Cognitive: 18 months	RCF
Mother-18	50–60	20–30	4–6 months	Home
Father-19	70–80	50–60	8–12 months	RCF
Mother-20.1	60–70	30–40	2 months	RCF
Father-20.2	70–80
Mother-21	60–70	30–40	9 months	RCF
Father-22	70–80	30–40	–	RCF
Mother-23.1	60–70	30–40	18 months	RCF initiated by parents
Father-23.2	60–70
Mother-24	40–50	10–20	0–3 months	RCF

*Developmental age as reported by parents.

Results

We will first address the nature of parents’ concerns related to being possibly outlived by their child. Then we will outline how these concerns related to the future fulfilment of caring roles. Finally, we will discuss the parents that had difficulties imagining their child being alive when they would be dead, because they felt they and their child were inseparable, and the parents that felt irreplaceable in the care and support for their child.

Parents’ concerns

Almost all respondents reported concerns, or even fears, about being possibly outlived by their child with PIMD. In fact, most parents mentioned this as the most important theme when asked at the start of the interview what themes they thought were relevant related to their child’s ageing:

I:

What do you think of when you consider the ageing of [name child]?

R:

Then things went quiet … 

I:

That’s okay.

R:

I’m afraid that when I’ll be dead, he’s still alive.

I:

Many parents say that.

R:

That’s the only thing. I would find that the worst. (Father-19)

Then I go straight into the depths, but how will that be when we’re no longer around? That’s the theme that is most important to me. (…) But when I think about the future, that’s always something, like: “Who’s going to do that? And how are they going to do that? (…) Who can you burden with that?”, and that’s worrisome, you know. (Mother-14)

Many parents spoke out the hope that their child would die prior to them:

We hope he doesn't survive us. We hope he’ll go before we go. However painful that might be. We don't want to leave him behind. (Father-4.2)

I hope I’ll outlive him. That’s what it boils down to. I hope we’ll both outlive him. (Mother-14)

Parents emphasised they did not want to lose their child, yet they would be relieved if their child would die prior to them:

I hope I’ll survive her. I always think that. It’s not that you want that, but it is what you hope. (Mother-20.1)

A few parents mentioned (almost) no concerns of being possibly outlived by their child with PIMD. The specific syndrome of two children made it extremely unlikely for this scenario to come true. The other parents were simply confident that their child could live on without them, perhaps receiving slightly less love and attention, yet a life worth living. The presence of specific professional caregivers and siblings without disabilities was named as a reason for not worrying about being possibly outlived by their child with PIMD. They expected that specific professional caregivers and their children without disabilities would fulfil certain roles in the future care:

We know that he’ll be surrounded by family who’ll represent him and who’ll take care of him in line with our care. The responsibility we feel for him, will be continued. That makes us feel very calm. (Father-22)

Both parents who did not and parents who did express concerns about being outlived by their child mentioned the future fulfilment of caring roles. The difference was that the latter expressed uncertainty about this fulfilment:

It mainly has to do with the fact that I currently guarantee her quality of life and that I don’t see an adequate successor. (Mother-17)

The responsibility, that I’ll always feel, to stand up for her, that’s fragile. Who else could do that? Yeah, I just wouldn't know. I just really hope she dies prior to me. (Mother-9)

Future fulfilment of caring roles

The uncertainty regarding the future fulfilment of caring roles contributed to parents’ concerns to be outlived by their child with PIMD. These roles were related to expertise, advocacy, and attention.

Expertise

Parents reported they were the experts of their child, using their expertise to estimate the communication and wellbeing of their child. Most parents mentioned that their expertise – or the “reading of their child” – was based on experience and proximity. Some parents considered professionals to be co-experts of their child, and many parents were convinced that professionals would – in theory – be able to fulfil the expert role if they would be no longer able to. However, many parents had doubts that their expert role would be fulfilled by professional care workers when they would be outlived by their child, since personnel tends to move between jobs and organisations tend to reorganise:

I say, for example, he shouldn’t wear shoes while eating because then he doesn’t eat. Then I come in and he’s wearing his shoes. So those kinds of things. It’s all written down and I can tell it 100,000 times, but then there is new staff and well … (Mother-17)

In addition, parents mentioned that RCFs made use of a big pool of care workers to counteract vulnerabilities in the organisation, which made it difficult for the care workers to develop expertise:

That’s the biggest problem actually [on continuity personnel – KK]. They’ve got 28 employees who rotate. That was never the case before. That’s because they all have small contracts, so if someone leaves, they don’t need to hire someone for 40 hours. (Mother-17)

This lack of continuity in professional care contributed to parents’ concerns about being outlived by their child with PIMD. At times, parents expressed the hope that their child(ren) without disabilities would become expert:

I hope that in the future there will also be someone who can solve these kind of mysteries. Because I can instruct the basics at a care centre, but what if the basics change? Then I don’t know if they can figure it out without me. I hope her sister will signal that, but I’m not sure of that either. (Mother-10)

Advocacy

Parents reported they fulfilled the role of advocate to ensure the best possible treatment, support and care for their child with PIMD and they were worried about the future fulfilment of this advocate role:

You really have to go after everything yourself. You really have to stand your grounds and have a bit of a big mouth. Who’ll take this over from me? Who’ll fight for him? (Mother-6)

Parents were afraid that the QoL of their child would decrease if they could no longer speak up for their child’s interest:

When I think of the discussions about tube feeding (…). Then I think Jesus, how will this go when I’m no longer around? Well, then she’ll be tube fed within six weeks, and I have fought for 30 or 35 years for that not to happen. And then this all falls away and then they’ll call that quality of life. (Mother-18)

In the case of siblings without disabilities being present, parents mentioned them as possible future advocate for their child with PIMD. However, some parents felt this would place an unfair burden upon the siblings:

I would rather have them take care of [name child] every day, than them having to fight for all his needs. Because fighting is what it is, and that requires so much energy. (Mother-14)

Parents were also worried who would advocate for their child in relation to medical decision-making, and monitoring QoL. The role of expert was mentioned in relation to this monitoring as well, for example when parents spoke about noticing the deterioration or suffering of their child:

Suppose that [child’s name] grows demented (…), how are you going to recognise that? (…) Or worse, what if nobody wants to make difficult decisions on her behalf? Because my child can’t report pain, hunger, thirst and so on. So, what if my child will suffer without anyone noticing? (…) Because my child doesn’t ask for attention, you run the risk of forgetting her. (Mother-10)

Parents often named siblings – or in the absence of siblings other family members or friends – as future legal guardian and/or surrogate decision maker. However, parents mentioned that they preferred to carry out these roles themselves:

If she’d deteriorate, I want to be the one who makes the difficult decisions for her. Yes, I hold her, I’ll do it. (Mother-10)

Attention

Parents expected that, when they would no longer be around, their child with PIMD would receive less attention and that her/his QoL would decrease. The care in RCFs sufficed, but the extra things that they as parents offered would, at least partly, fall away. Parents feared that no one would visit their child when they would no longer be able to:

I see the children whose parents died. Then you think, “damn, no one visits them.” You see them, pat their heads and say something, because those children have no one. They’re good for them there (in the RCF -KK), but they cannot keep a child busy for 24 hours. There are of course more children there to care for. So that's the fear I have. (Father-19)

The hope of parents was that – when they would have died – their children without disabilities would visit their sibling with PIMD more frequently, although some doubted the likelihood of such a scenario. They emphasised the difference between being a parent and a sibling:

It could be a big difference. I think that’s a bit of a risk, so to say, or a concern. For us that’ll never be gone, because you’re the parent (…), so you always want to do something for your child and whether this can be sustained by others? Well, it will be difficult for her brothers to fit it into their lives (Father-23.2)

Parents of children living at home frequently depicted living at an RCF as a disturbing future scenario in which their child would not receive the personal attention they deemed necessary:

It’s really a nightmarish vision. (…) Not enough individual attention and that would make [name child] clam up. (Mother-18)

Some of these parents had taken their child back in their home because of their dissatisfaction with the attention their child received in RCFs:

Our experience is that they frequently left him alone. And [name child] just needs someone around him 24 hours a day. He also needs to be touched now and then, because the world is no bigger to him than this. So we have to offer him that world, also by touch. That’s very important. (Father-4.2)

A few parents mentioned that they were working on establishing an RCF with other parents out of dissatisfaction with the current available options. In doing this, they hoped to retain a certain quality of care for their child when they would no longer be around:

That’s why I’m going to establish a home for [name child] myself, because then I think there will be a place for him to the best of my ability, that there is no better home to be found. (…) I'm trying to arrange the best of what’s possible. And I’ll probably have to settle for less, because it will never be like home. (…) But then I have ensured that it will be the next best. (Mother-14)

Inseparable and irreplaceable

Some parents saw themselves and their child as inseparable, owing to the unique bond with their child, the vulnerability and dependency of their child, and the caring roles they had always fulfilled in their child’s life:

I really am everything to him. I’m his eyes and his ears and I’m his voice. (…) I always say that the umbilical cord hasn’t been cut between him and me. That’s how it will always be. (Mother-6)

This feeling of being inseparable made that some parents found it difficult to imagine their child could continue to live on without them:

[Name child] is a part of me, she’s not detached from me, she’s somewhere else sometimes, but it’s like your own arm. She’s still physically mine. She’s still my baby. It’s a giant baby, but it’s a bodily love. It’s a physical love. (…) And when I’m no longer around, her body is missing a part. Maybe twins have that as well. You’re connected to each other, God, it makes me feel all emotional. She's part of me. (Mother-10)

In addition, some parents with children living at home, saw themselves as irreplaceable; they saw nobody fitting and/or willing to replace them in supporting and caring for their child:

The prospect that his life merely consists of sleeping, and nobody will have time for him that’s part of that fear. I’m the one trying to ensure this doesn’t happen now, but that’s nearly an impossible task. I don’t expect anyone to do that when I’m dead. (Mother-3)

These parents expected their child’s QoL to decrease heavily as a result of their own absence, which resulted in feelings of despair. Some mentioned restrictive treatments plans as a means to prevent being outlived, and one mentioned the possibility of stopping to feed her child:

At some point, someone else will have to care for him, so he’ll have to leave home. I actually hope that he’ll be dead before this happens, because his life in an institution would be worse than now. Now it’s not wonderful, because I also don’t have one hundred percent time for him. I can do a lot and I can stop giving him food and drink, I could do all that. (…) Maybe I’ll do that then [when I’m approaching death]. (…) His scoliosis is also getting worse. At some point organs will come under pressure and then we’ll refrain from surgery. (Mother-3)

Finally, some parents with a child living at home expected that when their child would outlive them, their child’s QoL would decrease dramatically. As a consequence, they considered the possibility of “taking their child with them” when they would die:

I’m scared to death for it [on outliving her child - KK]. It’s totally possible, and I always say that it won't happen, because then we’ll commit suicide together. Then we’ll jump from a mountain, then we’ll go gliding or whatever. (Mother-3)

Suppose you know that my husband and I will no longer be around tomorrow. And you would look deep in my heart, then I would take [name child]’s life. Really, I think even without batting an eye. (…) When I think about my own mortality, I think I’d take [name child] with me. (Mother-14)

A mother mentioned that giving her child a deadly substance – to not be outlived by him – would be an “act of ultimate love”:

He [“a complete stranger”] asked: “Then what”? I responded: “If necessary, I’ll give him a pill.” We’ve said that to people before and then they’re heavily shocked. Like: “How can you say that?”. They don’t understand where I’m at. But this man understood me, because he said: “That’s actually an act of ultimate love”, and that’s what it is. I think I’ll do it. (Mother-4.1)

Discussion

Summary of findings

In this study, we explored parents’ concerns about being outlived by their child with PIMD. Most parents – both parents of a child living at the family home and parents of a child living at an RCF – reported to fear being possibly outlived by their child and many parents expressed the hope their child would die prior to them. Parents mentioned the uncertainty regarding the future fulfilment of roles they fulfilled in their child’s life, contributed to their concerns. These parental roles related to the expertise of their child, advocating for their child, and attention for their child. Some parents of a child living at home felt irreplaceable and experienced feelings of despair when considering the possibility of being outlived by their child.

Interpretation

Fear, hope and despair

Parents’ fears of being outlived by their child with PIMD – just as the fears of parents with a child with IDD (Bibby, 2013; Brennan et al., 2018) – have been reported by others as well (Kamstra et al., 2017; Vlaskamp, 2012). Due to the dependency and fragility of their child, most parents in our study saw the hope not to be outlived by their child with PIMD as the most pressing theme when contemplating their child’s ageing. Hope has been conceptualised as (1) a desire, (2) resilience, and (3) an expectation (Olsman, 2020). Parents’ hope could be seen as the desire that their child would not outlive them, although it should be noted that it was not their desire for their child to die, rather they saw it as the lesser of two evils since they considered being outlived by their child to be worse. At the same time, this expression of hope could be understood as an act of resilience: it helped them to cope with their concerns. Parents gave words to their deepest emotions they were hardly able or allowed to communicate. Their expression of hope was, in this light, an act of empowerment, a way to communicate their impossible predicament, fuelled by both the love for and the dependency of their child. Lastly, parents’ hope was an expression of an uncertain expectation related to the future QoL of their child. It made them start preparations for the future, while hoping that others would take over their roles. However, some parents did not see anyone fitting or willing to replace them, which made them desperate because they believed this would result in a heavily diminished QoL of their child. This is in line with studies in other contexts, which suggest that the loss of hope for the future characterises despair (Kylmä et al., 2001; Olsman et al., 2015). This despair manifested itself most palpably when parents mentioned considering to actively end the life of their child to prevent being outlived by them.

Future fulfilment of parental roles

As far as the reasons for the concerns of parents of a child with IDD were explored in the studies that touched upon this subject (Bibby, 2013; Brennan et al., 2018), they had to do with parents feeling irreplaceable in the life of their child due to her/his dependency on others (Bibby, 2013; Hubert, 2006) or the special bond parents had with their child (Mencap, 2002), and a lack of trust in professional care organisations (Bowey & McGlaughlin, 2005; Davys & Haigh, 2008; Iacono et al., 2016). Our findings suggest something similar for parents of children with PIMD: parents’ concerns about being outlived by their child with PIMD were rooted in the risk that their roles would partly fall away with their absence. However, the large and everlasting dependency of people with PIMD – including their limited communication possibilities (Bibby, 2013; Bowey & McGlaughlin, 2005) – causes their parents to feel even stronger about being irreplaceable in the life of their child than parents of children with less severe disabilities. This was emphasised by almost all parents reporting a strong hope not to be outlived by their child, and by some parents of a child living at home contemplating to actively end their child’s life to prevent such a scenario from happening. The everlasting dependency as a driving force for parents’ concerns to be outlived by their child, became most evident when parents reflected upon them and their child being an inseparable unit (Stringer et al., 2018), e.g., “being connected through an umbilical cord.” Moreover, the vulnerability and large dependency of their children made parents of a child with PIMD emphasise in part different reasons for feeling irreplaceable than parents with a child with less severe disabilities (Bibby, 2013), e.g., (medical) decision-making and the knowledge they had of their child (Kruithof et al., 2020). In our study, parents mentioned their expertise of their child, advocating and decision-making for their child, and attention for their child as main reasons for their concerns to be outlived by their child with PIMD.

The expert role was seen as easy to fulfil by others, because it was based on experience and proximity and thereby to be acquired by professional caregivers as well (Carter et al., 2016; Donovan, 2002; Kruithof et al., 2020). Still, parents mentioned this role as part of their concerns because they witnessed the high turnover of professional caregivers in RCFs, something that has been described by others as well (Stringer et al., 2018), also from the perspectives of professional caregivers themselves (Doody et al., 2013). This experienced lack of continuity in professional care and support, is believed to result in a loss of personal and implicit knowledge about the person with PIMD (Kruithof et al., 2020).

The role of advocate, which has been described by others as well (Gauthier-Boudreault et al., 2017; Kruithof et al., 2020), was seen as difficult to transfer. Parents emphasised the need of someone “fighting” for their child. Parents did not see who could or would do this fighting, if they would no longer be able to. Even parents with other children were often hesitant to transfer these responsibilities to their children without disabilities, since they “take so much energy” (Kruithof et al., 2021). As part of the role of advocate – and related to the role of expert – the monitoring of the situation of the child with PIMD and the medical decision-making that has to be done on his/her behalf was often named by parents. We know from previous studies that parents of young children with PIMD want to play a decisive role in end-of-life decision making (EoLDM) processes, and often effectively do so (Zaal-Schuller et al., 2016). Our findings suggest that the parents of older persons with PIMD want to be involved in such decisions as well, and that they view this responsibility as solely theirs. Even though the legal roles – such as surrogate decision maker – were often transferred to siblings, other family members or friends, parents were afraid that no one would notice the decline of their child’s QoL or that no one would dare to make difficult medical decisions on behalf of their child. This made parents fear that their child would possibly suffer longer than necessary at the end of her/his life (de Vos et al., 2015).

A final role related to attention for their child. As is described before, people with PIMD are most frequently visited by their parents and parents are the most important part of informal networks of people with PIMD (Kamstra et al., 2015). Parents underscored this and expected that being outlived by their child would result in decreased attention for their child and consequently a decreased QoL. They emphasised the large dependency of their child with PIMD who could not undertake actions to increase her/his QoL, but needed others to do so (Axelsson et al., 2014; Kamstra et al., 2015). In addition, parents of a child living home were concerned about their child having to live at an RCF. They had chosen to care for their child in their home, sometimes out of dissatisfaction with the care and support provided by RCFs, and expected that living at an RCF would diminish the QoL of their child drastically. This made some parents plan to establish a small scale RCF with other likeminded parents, that would ensure a certain quality of care for their child when they would be outlived, as has been reported before for parents with children with IDD (Bigby, 2000). However, some parents felt irreplaceable in the life of their child and/or felt they and their child were inseparable (Bowey & McGlaughlin, 2005; Iacono et al., 2016; Stringer et al., 2018). Future research should focus on the situation and estimated QoL of persons with PIMD that actually have outlived their parents, to further explore this relational aspect of QoL for people with PIMD that both parents and medical professionals (Nieuwenhuijse et al., 2019; Nieuwenhuijse et al., 2020) emphasise. This is not only important to better understand the QoL of people with PIMD, but also because this relational view of QoL has consequences for the way parents make medical decisions on behalf of their child, as we have described in our results.

Practical implications

Parents were concerned about who would take over their roles if they would be no longer able to care for their child. If (some of) these roles could be transferred to thirds, parents’ fears could perhaps be somewhat diminished, and the future QoL of people with PIMD could be partly retained. This means that RCFs should ideally counteract turnover of personnel to allow professional caregivers to develop a close enough bond with people with PIMD to read their signals and fulfil the expert role (Kruithof et al., 2020). RCFs could, for example, aim to work with a smaller pool of personnel and limit the rearranging of groups. In addition, siblings (when present) seem to be the most fitting to take over some parental roles, such as advocating on behalf of their sibling with PIMD and giving her/him attention. While some parents felt this would place an unfair burden upon their children without disabilities, studies rather show that siblings do anticipate a future care role (Heller & Kramer, 2009; Rawson, 2010), which does not necessarily make them feel burdened (Kruithof et al., 2021). It may therefore be worthwhile for social workers to support parents and siblings, and possibly other family members or friends, in discussing future scenarios.

However, parents’ concerns and feelings of despair might not be completely solvable, especially for parents of children living at the family home. In relation to their own mortality, some parents of children living at home considered the possibility to actively end the life of their child with PIMD – something that is not legally permitted, neither in the Netherlands, nor in the rest of the world – which emphasises the gravity of these feelings of despair. It is therefore crucial that professionals know that these feelings exist so these feelings can be addressed. Professional support to talk about this topic might somewhat alleviate the experienced stress and despair of parents: Acknowledging parents’ concerns, including their hopes and fears, may strengthen their resilience to endure the present (Olsman, 2020). Future research should investigate if these feelings are reported by parents in other countries as well where, compared to our country, end-of-life issues may be discussed in a less explicit way.

Strengths and limitations

While the concerns of parents to be outlived by their child with PIMD has been reported before, our study is the first to further explore these parental concerns and fears. In exploring these concerns, we included both parents of children living at home and parents of children living at an RCF, resulting in a sample of parents of which more than half with a child living at home. Since the majority of adults with PIMD in our country live at an RCF (Vugteveen et al., 2014), this makes parents of children living at home overrepresented in our sample and consequently parents’ fear and feelings of despair might be too. This could be seen as a limitation of our sample. At the same time, it could be seen as a strength since the inclusion of this “hidden group” (Doody et al., 2013; Ryan et al., 2014; Smith & Tobin, 1990) in our sample allowed us to reach saturation on the theme “despair.” The underrepresentation of fathers can be seen as another limitation of our sample. Future research could aim to specifically elicit fathers’ views on being outlived by their child with PIMD (Dunn et al., 2021). This being said, the interviewed fathers did not differ in their views and experiences from the interviewed mothers. The cultural homogeneity can be regarded as a final limitation of our sample. We do not know what our findings mean for migrant populations in the Netherlands. On the one hand it is known that people with a migrant background often care for their child with disabilities in their homes (Klingner et al., 2009), which could imply that these parents experience similar concerns as we described. On the other hand, in the Netherlands many migrants have a Muslim background which might make them less inclined to think about limiting life prolonging medical treatments for their child (de Graaff et al., 2012). Future research should aim to recruit parents with a migrant background more actively to elicit their views on the topics we discussed.

Conclusion

Our study provides both scholars and professional caregivers insight into parents’ concerns about being possibly outlived by their child with PIMD, which included their hope to outlive their child. While the hope of parents to outlive their child with IDD is reported before, our findings shed light on the gravity of these concerns for parents of children with PIMD specifically. In reporting on the gravity of these parental concerns, our study may support health care professionals and others to listen to the feelings and thoughts of ageing parents with a child with PIMD, in a non-judgmental way. Another practical implication for professional caregivers is to specifically address these parental concerns when they discuss the future care and support for people with PIMD with their parents. The distinction between the roles, described in this paper, may help to discuss which roles can be taken over, if any, and which cannot. We cannot take away the concerns – including the fears and despair – of parents. Nevertheless, we hope that by acknowledging and reporting on these concerns, and by offering some practical suggestions, this study contributes to recognising and diminishing parents’ pressing concerns.

Acknowledgements

We wish to thank all respondents for sharing their personal and meaningful stories with us.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by ZonMw (The Netherlands Organisation for Health Research and Development) under grant 845004009. The funding body has imposed no restrictions on free access to or publication of the research data.