Caring for children with profound intellectual and multiple disabilities: images and metaphors expressed by Dutch parents

Abstract

Parenting a child with profound intellectual and multiple disabilities has expanded practical and existential implications. This study contributes to understanding parents’ lifeworld and their vulnerabilities by examining the deeper layers of what parents express through their use of images and metaphors. In-depth interviews with 25 Dutch parents were analysed by conducting systematic metaphor analysis informed by metaphor theory. We used the concept of social imaginary to reflect on the sociocultural or collective dimension of parents’ discourse. The following central metaphorical concepts were identified: Stagnation; Labyrinth; Battle; Transition; Medal; and Parallel worlds. Identified images and metaphors revealed an interplay of imaginaries regarding health and normality, autonomy and responsibility and what lives are worth living. Imaginaries may be transformed to frames that are more inclusive to families with children with disabilities. The study supports the demand to create humane care systems that address families’ vulnerabilities.

POINTS OF INTEREST

• This study explored the metaphors and images used by parents caring for children with profound intellectual and multiple disabilities when telling about their experiences. This was done to better understand what people convey through the words they use.

• The identified images and metaphors indicated that parents are affected by societal views about what is healthy and normal, about autonomy and responsibility, and of what makes lives worth living.

• Awareness of how societal views are embedded in healthcare policies and practices can change the day-to-day experiences of parents.

• More diverse views about how people and families can be may contribute to the inclusion of families in society and better access to the resources needed to manage family life.

• The findings accentuated that autonomy and responsibility have many relational aspects. Healthcare services should acknowledge this and enable parents to combine optimal care for the child with the achievement of other ambitions in life.

Keywords:

• parents’ experiences
• child with profound intellectual and multiple disabilities
• metaphor analysis
• social imaginaries
• humanization of healthcare policy
• family care

Introduction

Children with severe or profound intellectual and multiple disabilities are affected by a combination of cognitive disability and neuromotor and sensory impairments. Associated with these impairments, they often suffer medical complications related to gastrointestinal, respiratory and feeding difficulties, epilepsy, spasticity and scoliosis (Nakken and Vlaskamp 2007, 83–87; Nieuwenhuijse et al. 2019, 261–271; Van der Putten et al. 2017). Their health condition may be associated with chromosomal deviations, brain formation, metabolic disease and other causes of developmental disorder or regression. Communication is often only possible through forms of nonverbal expressions and body language (Van der Putten et al. 2017; Jansen 2015). Their high level of dependencies and the related possibility of life-threatening medical complications have implications not only for the children affected, but also for their parents or other primary caregivers, and possible siblings. Caring for a child every day requires continuous surveillance and assistance with all daily activities (Van der Putten et al. 2017; Luijkx, Van der Putten, and Vlaskamp 2017, 518–526). Previous generations of parents advocated a change from living in residential care facilities to inclusion within the family atmosphere. This turn was also made possible by the improved availability of specialized equipment and access to healthcare professionals at home. Enabling parents to care for their children with profound disabilities in the home environment is embedded in the Convention on the Rights of Persons with Disabilities (United Nations 2006; see, for example, article 28: Adequate standard of living and social protection).

Empirical research has highlighted the struggles of parents with children with profound disabilities who want to care for the child in the family home. Previous studies have acknowledged strains related to parents’ physical and psychological health and described challenges related to lack of time off and social relaxation, financial difficulties associated with reduced income and higher expenditures, and implications for connectedness and a feeling of belonging in parents’ communities (Boelsma et al. 2018, 107–124; Luijkx, Van der Putten, and Vlaskamp 2017, 518–526; Geuze and Goossensen 2019, 279–297). Childcare responsibilities often continue throughout the night which further undermines the parents’ flexibility and vitality. Sleep deprivation contributes to the likelihood of adverse impacts (Lee 2013, 4255–4273; Geuze and Goossensen 2021). Research has indicated that implications associated with parenting a child with profound disabilities are strongly related to practices within healthcare and service systems. The work parents must do to access the necessary resources to manage and thrive at the personal and family levels leads to collateral existential distress (Peer and Hillman 2014, 92–98; Woodgate et al. 2015, 197; Geuze and Goossensen 2021). Difficulties with accessing resources and services impede parents’ ability to ‘have a life’ and complicate equality of opportunity compared to parents with only healthy children (Boelsma et al. 2018, 107–124; Breitkreuz et al. 2014, 346–365; Woodgate, Edwards, and Ripat 2012, 1912–1920). Previous studies have also described parents’ counter narratives reporting outcomes related to personal growth and finding meaning and worth through adaptation. Meaning making and (transformational) growth are often acquired through periods of reflection and grief (Young, Shakespeare-Finch, and Obst 2020, 629–653; Fisher and Goodley 2007, 66–81).

In the parents’ lifeworld, that is, the world of everyday experiences, there is ongoing interactions between inherent (ontological) and situational (contingent) vulnerabilities (Scully 2014, 204–221; Geuze and Goossensen 2021). Vulnerabilities are inherent, as many of the parents’ challenges are directly associated with the child’s disabilities and medical complexity. Previous studies, however, have indicated that the parents’ situational vulnerabilities arising from their sociocultural and political context affect them even more (Peer and Hillman 2014, 92–98; Breitkreuz et al. 2014, 346–365; Geuze and Goossensen 2019, 279–297). Vulnerabilities embedded in parents’ larger context can become apparent through their conscious and unconscious use of language. Linguistic choices such as the choice of images and metaphors to express experiences convey deep layers of what the parents experienced. To our knowledge, there are no studies that have specifically examined parents’ use of images and metaphors to add to understanding their lifeworld. The aim of the present study is to contribute to the comprehension of parents’ experiences and vulnerabilities by examining the images and metaphors used by (Dutch) parents when describing their occurrences, thoughts and feelings associated with parenting a child with profound disabilities. The study’s aim led to the following central question: What images and metaphors are used by parents who are caring for children with profound intellectual and multiple disabilities to express experiences and vulnerabilities associated with their parenting? We used the concept of social imaginary to reflect on the collective dimension of the interaction of the different vulnerabilities present in the parents’ lifeworld (Taylor 2004; Lakoff and Johnson 2003). In doing so, we consider alternative imaginaries that may have a positive impact on the thriving of families.

Methods

This study is part of a larger research that explores the experiences of Dutch parents who are caring for children with profound disabilities at home. A qualitative exploratory research method was used. The methodology of the empirical part of the research was underpinned by phenomenology. In-depth interviews were the main source of information. During initial data processing, we noticed that the parents frequently drew on images and metaphors when illustrating experiences associated with their parenting. We observed that these images and metaphors gave us access to an additional source of experiential knowledge and meaning. In this study, we further explored the use and meaning of images and metaphors from the parents’ accounts.

The study was grounded in metaphor theory (Lakoff and Johnson 2003; Ricoeur 2003; Schmitt 2005, 358–394). In metaphor theory, metaphors are considered transferences of meaning between different semantic fields. The essence is that one kind of thing is understood and covered in terms of another, originating from another system of language or logic (Lakoff and Johnson 2003; Ricoeur 2003). An example is the use of the term ‘cowboy’ in a corporate or healthcare setting to express a raw and highly independence orientated mentality. Human imagination plays an important role in these transferences of meaning: we more often unconsciously than consciously express our conceptions and experiences metaphorically. The same applies for the use of images, as these resemble our prior experiences with the adopted item or scenery. Interestingly, the use of images and metaphors is dependent not only on individual experiences and personal choice. Linguistic usages equally reflect a commonly understood repository of meaning and moral values; embedded in the language we share (Lakoff and Johnson 2003; Aita et al. 2003, 1419–1431). The parents’ use of language therefore contained tacit information about the background or sociocultural and collective dimension of their personal experiences. We chose the strategy of systematic metaphorical analysis to collect and group the images and metaphors used by the parents who were interviewed (Schmitt 2005, 358–394). Subsequently, we used the concept of social imaginary as an analytic tool to reflect on the ‘immanent frame’, that is, the common understandings and values we currently live in and which shaped the parents’ use of images and metaphors (Taylor 2004).

Recruitment and data collection

For the empirical part of the research, single in-depth interviews with Dutch parents were conducted between April 2019 and December 2020. A sample of 25 parents was recruited and consisted of six fathers and 19 mothers who cared for 22 children with profound intellectual and multiple disabilities (due to brain anomalies, known genetic disorders such as Cornelia de Lange syndrome, tuberous sclerosis and Wolf-Hirschhorn syndrome, metabolic diseases and unknown genetic disorders; 14 children were living children and 8 children were deceased children). The parents were engaged through our own network and through social media (N = 10), online community plus support platforms (N = 6), specialized day care and respite care facilities (N = 5), and paediatric care professionals (N = 1). During the course of the study some parents approached other parents they knew (snowball sampling; N = 3). Criteria for eligibility and purposive sampling were used to include parents in the research (Dahlberg, Dahlberg, and Nyström 2008; Tracy 2020). The inclusion criteria were that parents had cared for the child (Nakken and Vlaskamp 2007, 83–87) for two years or longer and that the child was mainly cared for at home. Bereaved parents were included in the research. To gather experientially rich accounts sample criteria were applied. The criteria used were a wide scope of the children’s clinical profiles, a variety of parents’ cultural, ideological and socioeconomic backgrounds and nationwide coverage to balance geographically (Tracy 2020). Potential participants were first contacted via email and by phone. Parents were provided both verbal and written information about the research’s aim and context, the right to withdraw and the protection of their privacy by assurance of anonymous participation.

The largest number of interviews were conducted with one parent (N = 15). Five interviews were conducted with two parents, as this was their preferred option. Most interviews were conducted in the participants’ homes (N = 21). Two parents preferred a work related setting for practical reasons. Another two interviews took place via Microsoft Teams because of the COVID-19 pandemic and quarantines. The interviews had an open and nondirective phenomenological style. Each interview started with an open-ended question: ‘Would you like to tell me about your family?’. In the interview conversations parents were encouraged to elaborate on their experiences, thinking and emotions and rely on their unique ways of talking (Quinn 2005; Finlay 2011). Although a small topic list was used, the interview method provided the parents with the opportunity to focus on areas important for them, including areas previously not anticipated. Interviews were recorded using a voice recorder and lasted an average of 84 min (range from 52 to 141 min; median lasting 81 min). Interviews were then transcribed verbatim.

Ethical considerations

The research study was evaluated by a regional Medical Research Ethics Committee that confirmed the Medical Research Involving Human Subject Act (in Dutch: WMO) did not apply (June 2019; reference number: WAG/mb/19/020331). An invitation letter was supplied to the parents outlining the context of the research, data handling and publication intent. We used an informed consent form that included understanding of the aim and the context of the research, consent to use the anonymized interview for the purpose of publication, the possibility of withdrawal and destruction of data during the course of the research, consent for further use of data within the scope of this research, and storage of data with Data Archiving and Networked Services (DANS) after publication. Information was also reviewed by phone and prior to interviews. All participants signed informed consent. The first author was accessible by phone and email for questions (Tracy 2020).

Data analysis

Data analysis was performed in several stages guided by systematic metaphorical analysis (Schmitt 2005, 358–394; Schmitt 2017). This type of analysis is used to uncover sociocultural thinking patterns in research data. It consists of five successive stages: (1) identify a topic or focus (only images and metaphors with regard to parenting a child with profound disabilities were targeted); (2) collect metaphors (interview transcripts were reread and images and metaphors identified); (3) start a systematic data analysis (the explanatory function of images and metaphors used by the parents was identified and explored); (4) continue analysis by grouping images and metaphors into conceptual areas (metaphorical concepts were made by clustering of images and metaphors); and (5) compare images and metaphors across categories and subgroups (Schmitt 2005, 358–394). The process of identifying and clustering words and phrases as transferences of meaning and metaphorical concepts was conducted with the help of ATLAS.ti (stages 2–4). We proceeded the process of grouping idioms into metaphorical concepts until all identified idioms were listed under a metaphorical concept. The interpretation of linguistic usages was discussed in a group of four researchers to enhance the validity of interpretation (stages 2–5). Stage 5 was supported by schematic diagrams to uncover links and check the understanding of context. To verify data interpretation, there was frequent comparison with the previous and nonmetaphorical findings in the parents’ accounts. This triangulation of metaphor analysis by assessment of coherence and discrepancy is recommended to enhance the validity of understanding (Schmitt 2005, 358–394). The interpretation of interview data was also discussed with the parents to increase understanding and credibility (Tracy 2020). A final version of the research findings was supplemented with a Dutch translation to allow the parents to verify the findings and translation of quotes. Most parents (N = 23) read the study results. Parents provided responses by telephone or through email. The feedback of parents was used to improve the presentation of findings.

Findings

The parents used a broad spectrum of expressions to share their experiences and vulnerabilities associated with parenting a child with profound intellectual and multiple disabilities. The clustering of images and metaphors established six metaphorical concepts by which the parents in the study described their lived experience: (a) Stagnation; (b) Labyrinth; (c) Battle; (d) Transition; (e) Medal; and (f) Parallel worlds. In combination these concepts highlighted the common threads in the language used by the participants to describe occurrences, thoughts and emotions related to their parenthood.

Stagnation: ‘our lives stopped moving forward’

The parents talked about the impact of the child’s disabilities in images and language related to stagnation. They described challenges that stagnated ideas and dreams throughout various domains of their life. Many parents described that they felt time had paused when they were confronted with the child’s disabilities. For some parents, this was sudden and abrupt through prenatal diagnostic testing or by findings during childbirth. Others described a more gradual process as they had to await clarity about the child’s delayed development or development regression. Parents realized that their life path had changed irrevocably. One father looked back on the time following his child’s diagnosis by saying: ‘I used to say: “I do not have a choice”. Either I give up or I go for it and there is nothing in between. I have always felt it that way. That I had my back against the wall.’ Images and terms of stagnation were also used in contrast with ‘normal’ development: ‘He is a baby in the body of an eight year old’ and ‘It is like having young children once and for all’. The discourse of stagnation was also used with respect to the parents’ professional careers and connections with peers. Participants described that they interrupted or ‘sacrificed’ their professional life to ensure that their child was well cared for. They could not keep pace with others in their age group, as they had less freedom of movement even as the child grew older. Some of the parents anticipated the potential death of the child to have a stagnant effect on their life: ‘I think we will fall into a deep dark hole when he dies’. The parents also talked about their attempts to overcome stagnation by use of active verbs that referred to going through grief and mobilizing help. As one mother stated: ‘We managed to accept, well at least to integrate it in our life’. Other parents reflected on their efforts to ensure continuation of family, professional and social life after learning about the child’s care needs.

Labyrinth: ‘it was such a quest for possibilities’

Parents described parenting children with profound disabilities by using images of navigating a labyrinth. In parents’ descriptions, they frequently drew on a discourse of disorientation and being lost in an intricate and confusing situation. Participants characterized their parenting by using words such as ‘a never ending odyssey’, ‘a long quest’, ‘expedition’ and ‘a bureaucratic carousel’. The parents in our study described being completely overwhelmed when faced with the child’s complex care needs. The parents talked about difficulties in being provided with the correct information to address concerns present in their family situation, and about complex service systems. They were not only preoccupied by caring for the child but also experienced disproportionate efforts involved in finding their way through paperwork set up by administrators of medical equipment and services. They shared their despondency and frustration as they described being unreasonably challenged: ‘A blanket of tumult and worry is wrapped around us’ and ‘We are condemned, as families. It takes too much energy’. The discourse of a difficult network of options was also noticed in parents’ reflections on good parenting in relation to medical decision making. The parents in the study talked about continually searching and finding ways through dilemmas about treatment and quality of life and death. This approach often went against the natural wish to see the child thrive and grow older. The discourse of meandering was also used to exemplify the complexity of not knowing the future, both in the short and long term, and difficulties handling uncertainties (‘It is draining’ and ‘It is a delicate balance’). In parents’ accounts there was a noticeable yearning for ‘making the best of the situation’. The parents described how regaining control over their family thriving helped them find effective ways to manage as a family. The parents in our study talked about becoming increasingly aware of their inner power. Many parents felt the need for an equal relationship with care professionals. To get there, they often had to be assertive in order to receive the type of care or resources they needed to manage their lives. Reflecting on this process, a mother said: ‘From that time on we started building, compromising and managing’. These parents managed, after a period of disorientation, to successfully navigate service and healthcare systems and integrated their child’s (dis)abilities in family life. Parents’ accounts revealed how much they were affected by care practices in which they may or may not feel heard and understood. For example, the image of a ‘hotline’ was adopted by several parents to explicate how crucial having contact with physicians was for them. Access to a sounding board and shared decision making in emergency situations helped them cope with at least some of the experienced complexities.

Battle: ‘we had to fight for everything’

Parents frequently spoke in terms associated with a battle. They used idioms such as ‘battling’, ‘struggling’, ‘manning the barricades’ and ‘negotiating’ to express how they had to defend and enforce the child’s quality of life, as well as maintain their family. One father stated: ‘I spent almost ten years either drowning or swimming’. The parents in this study characterized that they were ‘battered’, ‘affronted’ and ‘pushed aside’ while they tried to figure out bureaucratic procedures and obtain the equipment and services needed. The parties they fought with were healthcare insurance companies and other parties charged with the performance of procedures arranging the provision of medical devices, equipment (such as wheelchairs and high-low beds) and appropriate home modification. The matters they fought for related to their child’s quality of life and the resources needed to manage as a family, and have time and energy for any other children. The parents’ accounts exposed that they were deeply affected by their unwanted dependency on such procedures. One mother said: ‘It feels unfair, to have a long fight for something that is needed to make her life liveable’. The parents also used the discourse of battling in reference to the child’s vulnerable health: ‘He truly fought to retain and survive. Other children might have died’.

Transition: ‘we must keep changing our expectations and continuously adapt to circumstances’

Prominent in parents’ accounts were images and metaphors that referred to transition. The parents in this study became gradually aware of the full impact of the child’s disabilities. As time passed, the family as a unit went through different stages and dealt with multifaceted issues. Parents’ linguistic usages explicated this was a constantly evolving process. Parents talked about learning new ‘jargon’ or ‘medical language’ to cope with their new responsibilities and to ‘make do with what we have’. This was often after ‘being thrown in at the deep end’. The parents described ‘professionalizing’ and ‘gaining expertise’ regarding the child’s health status. They often perceived themselves as the best expert on the child they loved and cared for. The discourse of growth and transformation over time was also reflected in parents’ descriptions of the ways they learned to raise their voices to defend the wellbeing of their child and family. Some parents talked about how they made sense of their situation and about balancing expectations and uncertainties: ‘It is about how we relate to expectations. We need to let go and accept, as parents’. Some parents described that they had spent quite some time in a state of ‘denial’. They described that facing what was happening was too painful at first. Other parents described quick acceptance that was misinterpreted by others: ‘They say: “You are still in denial. You do not see what is wrong with her and how serious it is.” Yes, we do see that, but we get over it by looking at possibilities, and positivity’. Another mother said: I felt the ultimate acceptance of Patrick [pseudonym son] was not to have prenatal testing on pregnancies that followed him. Doing prenatal tests would make it feel like he should not have been here. However, that is not the case’. The parents’ growth and changing sense of self and family were also reflected in the discourse of ‘taking further steps’ and ‘developing’ or ‘reshaping’ family life. The words used reflected the parents’ continuous challenges in integrating the child’s care needs within their everyday lives and the changing views and circumstances.

Medal: ‘everything has two sides’

Participants made references to contradictions in their experiences as two sides of the same medal or coin. Many parents described parenting their child as demanding yet enriching. Some of the participants noted that the intimate connection with the child forced them to look at things that were previously taken for granted: ‘My life has been enriched. I am not happy for what he had to endure, but I learned from it, and so has society’. The parents also drew on a discourse of contradiction when they described stressful situations associated with the child’s fragile health. For example, one mother described the presence of contradictory thinking when caring for her daughter during epileptic convulsions that caused her breathing to temporarily stop: ‘On the one hand, I immediately respond, while at the same time it is truly a hard thing. I am always hoping that things will go well’. The discourse of the two sides of the medal was also used by the parents when describing contrasting emotions evoked by anticipating the child’s future and uncertain life expectancy: ‘I hope she will not survive me. I do not want to lose her, but I hope she will not outlive me’. Along with the fear of bereavement, parents in the study feared suffering in the child’s life: ‘Bad news becomes good news. Her suffering will come to an end’. The parents in the study also talked in terms of contradiction and dualism when they accentuated the ‘two sides’ of the difficulties they described. They spoke about how some implications of the child’s (dis)abilities yielded unanticipated positive discoveries. For example, a few of the parents talked about a new kind of calmness and focus in their lives: ‘It does offer obligatory regularity, yes’ and ‘It made me silent and conscious. […] They were without accomplishments, without anything’.

Parallel worlds: ‘I was brutally pushed into a parallel world’

The parents talked strongly about a discourse of living in parallel worlds; in two separate worlds where the parent alternates between the two. They used descriptions such as ‘There is this threshold. It is of course a bit of a shock when people look in the cradle and their facial expression changes’, ‘You are cut off from the world’, ‘The big bad world is out there’ and ‘I was brutally pushed into a parallel world’. Parents drew on a discourse of inhabiting another universe and solitude. They described that there were only a few people who could empathize with their duty of care: ‘They have no idea’. One interviewee said: ‘You feel like you are some kind of outsider, with your face pressed against the glass. You do not belong, and you do not share in that joy as much as they do’. Some of the parents in the study ventilated pain associated with a lack of understanding of those nearest. This was experienced by, among other things, a lack of compassion for the child and the choice of locations for social gatherings: ‘The restaurant was not suitable for the wheelchair, and there was no provision to change her diapers’. Some of the parents experienced judgement by people nearby or further away. For example, one mother recalled the response of one of her neighbours: ‘He said: You decided to continue the pregnancy. You knew it beforehand. Then I think, but we did not opt for him to be not healthy. Still, he was born’. Some other parents recalled being asked if they were aware of their child’s disabilities prior to birth. These questions induced friction with the outer world and led to estrangement and feelings of exclusion. The discourse of living in parallel worlds was also used in reference to the child with disabilities alone: some of the parents experienced a necessity to create an aligned reality in which the child was centred and could do well. Several parents referenced to the role of fellow parents, although some preferred to limit contacts with other parents of children with profound disabilities: ‘A mini-society with all the pros and cons that come with it’. The parallel reality created was also described as follows: ‘He is in a different world. Including other acquaintances for us, and so on’ and ‘Then, you notice that the world is collapsing, and on the other hand you discover a new world, that parallel world’.

Discussion

The present study contributes to understanding parents’ lifeworld and vulnerabilities by examining their use of images and metaphors. The systematic analysis sheds light on the metaphorical thinking patterns present in the parents’ accounts. Analysis of the collected images and metaphors used by the parents led to the identification of six metaphorical concepts: (a) Stagnation; (b) Labyrinth; (c) Battle; (d) Transition; (e) Medal; and (f) Parallel worlds. Collected images and metaphors provide ground for deeper interpretations of the sociocultural and collective dimension of vulnerabilities associated with parenting a child with profound intellectual and multiple disabilities; embodied in day-to-day happenings. The parents’ linguistic choices and specifics of their figurative language convey deep layers of what they experience (Schmitt 2005, 358–394). Personal experiences of parenting a child with profound disabilities are framed in the context of the values and beliefs in the larger context of the parents’ lifeworld. The concept of social imaginary deals with this larger context of values and beliefs that is present in a collective social life (Taylor 2004; Sartre 2004). We therefore adopted the concept of social imaginaries to expand the understanding of the parents’ lifeworld and the collective elements of particular experiences.

Interplay between metaphorical concepts and social imaginaries

The dynamics of parents’ particular circumstances with beliefs and values present in society created the different types of vulnerabilities with which they had to cope. To expand the understanding of the parents’ lifeworld conveyed in deeper layers of their linguistic choices, we considered it useful to reflect on the interplay of the parents’ personal experiences and collective social imaginary. The idea of social imaginary refers to the broad understanding people have about their collective social life (Taylor 2004; Sartre 2004). Social imaginaries apply to the often implicit or inherent expectations people have of the practices of society and of each other. They are the kind of common understandings and values within certain sociocultural groups; communicated in language and many other forms of cultural and artistic expressions. As social imaginaries are situated at the paradigmatic level, they highly influence people’s construction of identity and interpretation of what makes life worth living (Alma and Vanheeswijck 2018; Mooren 2011; Taylor 2007). The parents’ context of beliefs and values incorporated in such imaginaries clarifies how their experiences and vulnerabilities were shaped. Expanding the understanding of how the social imaginary impacts parents may also help to understand how social imaginaries may be transformed.

Our findings pointed to at least three considerations regarding the interplay between parents’ choice of figurative language and social imaginary. Our first consideration was that the images and metaphors used revealed that parents are part of a society that promotes strong values of health and disability. The metaphorical concepts of stagnation and parallel worlds conveyed a feeling of not meeting expectations and of not fitting in. The parents’ accounts accentuated that their lifeworld was dominated by classifications such as ‘healthy’, ‘normal’ and ‘participating’ that conflicted with the child’s profound disabilities. In this regard, our findings echoed other studies describing the pervasiveness of binary thinking about ‘normality’ and ‘disability’ (Van Hove et al. 2009, 187–201; Goodley 2007, 145–160; Boelsma et al. 2018, 107–124). It appears that these thinking patterns remain widespread despite the concept of disability being actively questioned in recent decades. According to Taylor, this is associated with a society that regards cognitive capacities such as the ability to talk and remember as the foundation of people’s individuality and possibility to relate to others (Taylor 2004; Taylor 2001). People with profound disabilities are limited in those capacities and thus have different abilities. Prevalent imaginary may explain why the discovery of the child’s disabilities confronted the parents with deeply held beliefs of ‘normalcy’ and deprivation of the imagined family life. The discourse of stagnation and transition revealed that many parents in our study gradually developed perspective and coping. However, because imaginaries remain unchanged in other people, parents often come across outsiders that do not feel at ease with the child’s disabilities, physical appearance or medical complexity. Our findings demonstrated that this prevents equal and open interaction in parents’ communities and complicates the families’ presence in public spaces. Thus, current imaginary gives rise to feelings of alienation and solitude. The lack of a more diverse imaginary about what people and families can be like contributes to parents’ feelings of being excluded in society.

Another consideration involved parents’ descriptions clustered in the metaphorical concepts of labyrinth and battle. The findings revealed that the parents have to engage in healthcare systems that are oftentimes not aligned with the family’s actual need for equipment and services. The parents often encountered situations defined by lack of priority for their families in the healthcare sector. The difficulties in accessing service systems may be linked to the modern imaginary of the human and self in which individual autonomy and responsibility dominate (Taylor 2004; Taylor 2001). Our findings indicated that the parents’ resilience regarding caring for a child with disabilities is ultimately assumed to be their individual duty and challenge. The metaphorical concepts of labyrinth and battle may also point to the incorporation of social imaginary into institutional practices that threaten the wellbeing of families with children with profound disabilities. Our findings indicated that procedures to access the necessary resources are oftentimes complex and slow-moving. Parents’ vulnerabilities increased because they were put in a position where they had to defend the entitlement of child and family on resources needed to manage family life. This issue has also been raised in other studies that have related easy access to resources to parents’ ability to manage family life and have the opportunity to participate in society other than caring for the child (Boelsma et al. 2017, 31–38; Breitkreuz et al. 2014, 346–365; Woodgate et al. 2015, 197). Scholars have proposed a societal or socioecological approach to family resilience (Muir and Strnadová 2014, 922–937; Breitkreuz et al. 2014, 346–365; McConnell, Savage, and Breitkreuz 2014, 833–848). They have demonstrated that families with children with disabilities can thrive only when opportunities such as sustainable and high-quality childcare, flexibility at work and family centered service systems are provided. Our findings resonated that families with children with disabilities can be autonomous and thriving only if they are recognized by the wider political context and when there are sociocultural preconditions. Our findings thereby indicated the importance of placing autonomy and accountability in a more relational perspective.

A third consideration associated with the interplay of social imaginary and parents’ experiences involved the parents’ processes of meaning making. The parents’ language clustered in the metaphorical concepts of transition and medal revealed that parents’ intimate connection with the child often makes them approach new positions towards collective ideals, such as imaginary regarding the relationship with the child, their family life and career paths (the ‘picture perfect’ in the eyes of society). Other studies have also described transformational growth following grief and distress because deeply held premises are challenged in this process, and parents’ narratives have to be restructured (Young, Shakespeare-Finch, and Obst 2020, 629–653; McKeever and Miller 2004, 1177–1191). The experience of parenting a child with profound disabilities demanded parents to confront (inherent) imaginaries and take new positions with regard to how they looked at things before. Parents explained that they were more consciously in touch now with what they considered important in life. Parents regarded this as a positive consequence of parenting a child with disabilities. Their family situation had created new ‘dialogues’ with background ideas and subjectivities. At the same time, many parents talked about recurring periods of mourning and anxiety. As described before, this was related to, for example, a further fall of anticipated milestones, (existential) weariness and despair related to the possibility of future complications and loss of the child. This observation agrees with other studies on parents’ concerns that concluded that many implications of caring for a child with disabilities cannot be resolved (Kruithof et al. 2022, 107–117; Luijkx, Van der Putten, and Vlaskamp 2019, 184–189). Our findings accentuated the importance of attentiveness for tragedy and issues regarding the child’s quality of life and death that do not have easy answers or good endings. It is important for parents to find people around them who are willing to listen and have an encouraging and open attitude. Especially in healthcare settings, it is crucial that professionals create space for attentiveness to what the parents are going through and have the courage to address sensitive issues. Such courage may support parents in the challenge of integrating new meaning and purpose in family life and thereby building resilience to persevere at the personal and family levels.

Implications for practice

The added value of our study is that it provided metaphorical explanations of the parents’ concerns and vulnerabilities. The study findings could be used to cultivate the understanding of the parents’ accounts revealing their inner perspectives. To date, the parents’ voices often remained unheard and, to varying degrees, insufficiency acknowledged. Some of the parents’ challenges are inherent to modern human life, but parents are proportionally more affected because of the different types of vulnerabilities they cope with. Parents deal with complex care needs associated with the child’s disabilities and medical fragility. In addition, they are confronted with sociocultural formations of health and normality, autonomy and responsibility, and of what makes lives worth living (‘in the eyes of society’). It is important to take into account that parents’ reality is shaped by these imaginaries. Parents are affected by social imaginary embodied in their day-to-day experiences. The current study underlined the importance of genuine attentiveness for what parents go through. Healthcare professionals, in particular, can focus on what parents value in life and care, and take time to create relationships in which parents can express essential concerns (Baart 2004). At the level of establishing political priorities and formulating policies, it is crucial to address the institutionalization of current imaginaries, as they lead to the marginalization of families with children with profound disabilities. Future research may focus on parents’ ideas about creative and humane service systems that are easy to navigate and help parents as well as society. These studies may take parents’ lifeworld as the foundation of empirical understanding.

Strengths and limitations of the study

The present study used guidance for systematic metaphorical analysis to collect and group the images and metaphors used by Dutch parents caring for children with profound intellectual and multiple disabilities. A strength of the study was that the sample was a diverse group of parents who were highly involved in the study. The parents provided us with an informative and diverse range of experiences and vulnerabilities associated with the phenomenon under study. The metaphorical analysis of data was discussed in a team of four researchers to expand validity of interpretation. There was repeated comparison with the nonmetaphorical findings in the parents’ accounts to add to the study’s validity (triangulation of data). Interpretation of data was further enhanced by member reflections (Tracy 2020). The parents in this study read the study findings, and their feedback was used to strengthen the descriptions of the metaphorical concepts (N = 23). For example, parents have further nuanced the text and supplemented practical examples. We could not process all their contributions however respected the feedback as much as possible. There are limitations to the study’s robustness and specific way of interacting with the data. A sample larger in variety might have provided additional meaningful understanding. More mothers than fathers participated, most of the parents were aged forty and over, had a Dutch background, and they were all living together with their life partner. Further research may focus on gender, age and sociocultural related factors impacting parental experiences and vulnerabilities. Eight out of the twenty-two children of the parents in our study had died. However, the experiences of the interviewed parents of deceased children did not seem to contrast with the experiences of the other parents. Furthermore, it is possible that the location and manner in which the interviews were conducted affected the depth of the interview conversations. We conducted five interviews with father and mother together. This may have hindered the parents from speaking freely about issues such as implications for the relationship with the life partner. On the other hand, we observed that these parents encouraged each other to deepen experiential knowledge. Four (individual) interviews were conducted after the start of the COVID-19 pandemic. Two interviews were conducted online because of quarantine measures in place during COVID-19. It was interesting but logical that impacts of the COVID-19 pandemic exacerbated some of the parents’ difficulties. For example, many parents opted for an even stricter quarantine than that imposed by the government and healthcare professionals that supported at home dropped out. For this reason, these interviews were viewed as an added value for understanding the parents’ experiences.

Conclusion

The present study complements and extends previous studies that have focussed on the complex experience (phenomenon) of parenting a child with profound intellectual and multiple disabilities. Our study focussed on what can be learned from the parents’ usage of images and metaphors when describing day-to-day experiences and vulnerabilities. Six central metaphorical concepts were identified: Stagnation; Labyrinth; Battle; Transition; Medal; and Parallel worlds. The metaphorical concepts help enlighten how the participants’ experiences are shaped in the parents’ sociocultural context. Their lifeworld is construed partly by how they handle and evaluate the social imaginaries of their time and space and by how these imaginaries are incorporated in their day-to-day reality. What parenting a child with profound disabilities means and does is created by a social imaginary that generates the different types of vulnerabilities the parents have to cope with. Challenges are associated with social imaginary of health and normality, autonomy and responsibility, and what makes lives worth living. A more diverse imaginary of what people and family’s lives can be like could help advance inclusion and equal participation in society. This must come with improved access to equipment and resources needed to care for a child with disabilities at home and to combine optimum care for the child with the achievement of other ambitions, such as career development and being a good enough parent for siblings. It is important that societies, and specifically healthcare professionals, are attentive to what parents or other primary caregivers express through specific language. Many of the issues the parents deal with have no easy answers. An attitude of listening and encouragement is crucial to nourishing and building resilience at the personal and family levels. Thus, attentiveness to imaginaries and actions on a societal and an individual level can promote the wellbeing and thriving of families with children with disabilities, thereby changing the parents’ future use of images and metaphors.

Acknowledgements

We are grateful for the participation of the parents in this study. Thank you for your willingness to talk about private experiences, thoughts and feelings. We thank Wendy van der Geugten and Martijn Simons for our discussions on interpretation of findings. We thank Andries Hiskes and Anita Ham for their comments on an earlier version of this paper. We are also grateful for the detailed and constructive comments of the anonymous reviewers.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This study was supported by the Dutch Research Council (Nederlandse Organisatie voor Wetenschappelijk Onderzoek) under Grant 023.012.044.