“Continuously struggling for balance”: The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities

ABSTRACT

Background

Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.”

Method

We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used.

Findings

The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns.

Conclusions

Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.

KEYWORDS:

• The Netherlands
• qualitative phenomenological research
• parents’ experiences
• child with profound intellectual and multiple disabilities (PIMD)
• humanisation of healthcare policy
• family care

The presence of a child with profound intellectual and multiple disabilities (PIMD) has many implications for day-to-day family life. Children with PIMD have a unique profile and form a specific group within a broader spectrum of children with disabilities. They are affected by a combination of profound intellectual disability and profound neuromotor and sensory dysfunctions (Nakken & Vlaskamp, 2007). Because of the severe impairments, communication is often only possible on the level of nonverbal expressions, sounds, and muscle tensions. Hence, specifically, their closest caretakers learn how to interpret the child’s body language. Moreover, children with PIMD often develop associated health complications such as gastrointestinal, respiratory, and feeding difficulties, epilepsy syndromes, spasticity, and scoliosis (Nakken & Vlaskamp, 2007; Van der Putten et al., 2017). The combination of the child’s disabilities and health problems is associated with a higher chance of chronic pain and developing unusual behavioural and sleeping patterns (McGuire et al., 2010; Van der Putten & Vlaskamp, 2011). All of this means that children with PIMD are heavily dependent on caretakers in all areas of life.

In high-income societies, many parents with children with PIMD wish to care for the child in the family environment (Breitkreuz et al., 2014; Luijkx et al., 2017). Inclusion of the child in daily family life was advocated by previous generations of parents and was also made possible by the increased availability of specialised equipment in homes. Facilitating people to parent children with PIMD at home was embedded in the Convention on the Rights of Persons with Disabilities (United Nations, 2006). However, research into these parents’ experiences revealed many complexities in the parents’ natural endeavour for wellbeing on the personal and family levels. Parents are confronted with overwhelming care responsibilities including medication and treatment management, monitoring the child’s health and arranging access to healthcare services and assistive technology. These responsibilities are time consuming and pose challenges related to the loss of free time and social relaxation, feelings of depression and stress, financial difficulties and the care for siblings, and the life partner relationship (Geuze & Goossensen, 2019; Luijkx et al., 2017; Peer & Hillman, 2014; Redquest et al., 2015; Whiting, 2014). There are counter-narratives that illuminated the parents’ positive experiences such as increased closeness in families and communities, and the experience of meaning and worth in the actual situation (Fisher & Goodley, 2007; Peer & Hillman, 2014; Young et al., 2020). In sum, parents’ quest for family wellbeing can be understood as an existential one, as challenges affect fundamental expectations about security and controllability, hopes for a good life for both child and family, and feelings of belonging to society and communities (Geuze & Goossensen, 2021; Woodgate et al., 2012).

Awareness of parents’ high vulnerability and their confrontations with existentially threatening stressors raises important issues concerning their challenges and the family’s quality of life (Boelsma et al., 2018; Geuze & Goossensen, 2019; Geuze & Goossensen, 2021; Luijkx et al., 2019). Previous research and the parents’ accounts in (social) media demonstrated that the support families receive through healthcare services often do not match the parents’ actual needs or concerns (Geuze & Goossensen, 2019; Whiting, 2013; Woodgate et al., 2015). Unmet needs include timely access to the assistive technology and home modifications, day care and respite care, and lack of clarity on parents’ roles in medical decision making (Woodgate et al., 2015; Zaal-Schuller et al., 2016). To develop effective and humane healthcare policy it is important to address the parents’ own inner experiences and perceptions. Deepening understanding of the parents’ lived experiences is crucial for reflection on how to act on the parents’ challenges in adequate and caring ways. However, only limited research has been conducted on the lifeworld of this specific group of parents (Geuze & Goossensen, 2019; Green, 2007; Luijkx et al., 2019). Therefore, this study aimed to contribute to knowledge about parents’ challenges derived from their own perspectives. This was done through a phenomenological approach in order to explore the essence of experiences related to parenting a child with PIMD. The aim of the study was to develop in-depth understanding of the phenomenon “parenting a child with PIMD.” The research question was as follows: “What constitutes the essence of the phenomenon of parenting a child with PIMD?” After describing our understanding of the phenomenon, we reflect on associations for enhancing care and services for families with children with PIMD.

Methods

Reflective lifeworld research approach

In order to reach phenomenological understanding of the parents’ experiences and describe the phenomenon “parenting a child with PIMD” an in-depth interview study was conducted (Dahlberg et al., 2008; Van Manen, 2014). The interview study was based on the reflective lifeworld approach (RLA) (Dahlberg et al., 2008). We adopted this approach because of its primarily focus on the lifeworld and participants’ own descriptions of lived experiences (Dahlberg et al., 2008; Vagle, 2018). The intention of the RLA is to illuminate the nature of the within experience of the phenomenon under study by its essence, that is, the common thread and unity through the variety of participants’ lived experiences. Within the RLA, the essence of the phenomenon can be further characterised by its constituents, that describe the different aspects of the phenomenon (Dahlberg, 2006; Dahlberg et al., 2008; Finlay, 2011).

Researchers need an open attitude in order to reconcile the complexity of the phenomenon of interest, and the research procedures and findings. We applied the approach of “bracketing” and “bridling” in order to understand the parents’ experiences in an accurate and open manner (Dahlberg et al., 2008; Van Manen, 2014). This entailed consciously dealing with our own agency and our interaction with the phenomenon. Within this study this meant we committed to the required open and wondering attitude by continuing reflection and debate on the following: (1) preunderstanding by scientific knowledge and theories, (2) truth or falsity claims made by participants, and (3) our own personal views and prior observations (Dahlberg et al., 2008; Finlay, 2011; Van Manen, 2014).

Selection of participants

The sample consisted of 25 parents (6 fathers and 19 mothers). The parents were recruited through our own network (N = 10), online community plus support platforms (N = 6), specialised day care and respite care facilities (N = 5), and paediatric care professionals (N = 1). Some parents that participated approached fellow parents they knew (snowball sampling; N = 3). An invitation letter was used to inform the parents about the study’s context, relevance, and the protection of privacy. Contact details were provided. Potential participants were contacted by e-mail and phone to verify their participation and to make arrangements for the interview. Five interviews were conducted with both parents as they preferred to be interviewed together.

Criteria for eligibility and purposive sampling were used (Dahlberg et al., 2008; Tracy, 2020). Participants had to have cared for the child for two years or longer in order to achieve thorough understanding of impacts. Children had to be cared for mainly in the family environment in order to focus on homogenous circumstances. Further criteria involved a wide scope of the children’s clinical profile and a diversity in the parents’ cultural, ideological, and socioeconomical backgrounds (Tracy, 2020). Participants lived in different parts of The Netherlands and in both rural and urban areas. Bereaved parents were included in the research study. Parents were recruited starting from April 2019 and recruitment stopped once enough data were available (December 2020; N = 25). Sociodemographic information on the participants’ families is presented in Table 1.

Table 1. Sociodemographic characteristics of participants and their children (N = 25; children: N = 22).

Sociodemographic variable	% (N  = )
Age range (years)
30–40	24 (6)
41–50	28 (7)
51–60	24 (6)
61–70	16 (4)
Missing data	8 (2)
Gender
Female	76 (19)
Male	24 (6)
Relationship to children
Biological parent	92 (23)
Foster parent	8 (2)
Partner status
Living together	100 (25)
Living alone (separated or widowed)	–
Employment
Fulltime	4 (1)
Parttime	44 (11)
Retired	8 (2)
Self-employed	24 (6)
Not employed (fulltime caretaker)	20 (5)
Family size (including the parents)
A family of 3	12 (3)
A family of 4	24 (6)
A family of 5	44 (11)
A family of 6	20 (5)
Age range living children (N = 14 out of 22; median age 15 years)
0–10	22 (5)
11–20	36 (8)
21–30	5 (1)
Age range deceased children (N = 8 out of 22; median age at passing 11 years)
0–10	18 (4)
11–20	5 (1)
21–30	9 (2)
41–50	5 (1)
The child’s main clinical diagnosis (N = 22)
Brain anomalies	9 (2)
Known genetic disorder (e.g., Cornelia de Lange syndrome, Moebius syndrome, Rett syndrome, Sturge-Weber syndrome, tuberous sclerosis, Wolf-Hirschhorn syndrome)	50 (11)
Metabolic disorder (e.g., metachromatic leukodystrophy, Niemann–Pick disease type C)	18 (4)
Unknown genetic disorder	23 (5)

Ethical considerations

The study was considered by the Medical Research Ethics Committee Utrecht, who affirmed that the Medical Research Involving Human Subject Act (in Dutch: WMO) did not apply (June 2019; reference number WAG/mb/19/020331). The parents’ rights as participants were outlined in the invitation letter and in an informed consent form. Parents were informed about the procedure of member reflections and possibility of withdrawal and destruction of data during the course of the research. The informed consent included data storage at Data Archiving and Networked Services (DANS) following publication. The information about data handling was also discussed verbally by phone and again prior to interviews. All participants signed informed consent. No participants withdrew from the study. Most parents in our study participated in member reflections (N = 23) (Tracy, 2020).

Data collection

Most interviews took place in the participants’ home environment as this was most convenient for the participants (N = 21). In addition, this allowed us to get in touch with the family’s living situation. Two parents preferred a work-related setting. Another two interviews were conducted via Microsoft Teams because of the COVID-19 pandemic and quarantine. All interviews were organised with the first author and were conducted in Dutch. Interviews were recorded by a voice recorder and lasted an average of 84 minutes (ranging from 52 to 141 minutes; median lasting 81 minutes). Using the RLA, all interviews started with an open question: “Would you like to tell me about your family?” During the course of the interview, participants were encouraged to detail experiences, reflections and emotions, and rely on their unique way of talking and personal expression (Finlay, 2011; Quinn, 2005). A small topic list was prepared, which was based on literature (Geuze & Goossensen, 2019); however, the flow of the parents’ accounts was followed.

Data analysis

Interviews were transcribed verbatim. Transcription was done by a professional service and the transcripts were checked for accuracy by the first author. Analysis was conducted according to the iterative stages of the RLA: (1) repeated and thorough reading of the transcripts to become familiar with the data; (2) identification of the smaller segments on basis of meaning (the meaning units); (3) clustering of meaning units on a more abstract level (the temporary pattern of meanings); and (4) the formulation of the structure of the essential meaning and its constituents. Moving back and forth during data analysis led to greater understanding and adaptions of the preceding stage (Dahlberg et al., 2008). We used ATLAS.ti 9 in the process of coding and clustering. In addition, meaning units were sketched in a mind map per interview, which helped to identify patterns that emerged across accounts. We discussed interpretation of meaning in a team of four researchers to secure open and “bridled” understanding. The interpretation of the phenomenon and its constituents was also discussed with the parents through member reflections (Tracy, 2020). A final version of the findings was supplemented with a Dutch translation and parents were invited to add to findings and translation of quotes. The parents participated via e-mail and phone (N = 23). Their feedback strengthened the presentation of findings.

Findings

The parents tried to keep things together in the face of evolving challenges. They tried to simultaneously focus on optimum wellbeing of the child they loved and cared for while at the same time aiming to preserve their family, social and working lives. This meant constantly adapting to dynamic daily events and weighing of options to help their children and families thrive. Their continuous struggle for balance was a consistent theme throughout interviews. The essence of parenting a child with PIMD was construed as: “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The phenomenon is composed of the following eight constituents tangible in the parents’ lifeworld: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns.

“It is all about her”: Medical complexity

All participants spoke of their daily life as extremely dynamic and demanding. They stressed that the child’s complex needs implied an overpowering effect on available time and energy and that they lost every sense of a carefree life. Living together with the child with PIMD meant they struggled with a “shaky” balance in day-to-day family life. For example, safeguarding the health and safety of the child required a constant focus and alertness on the issues at hand. The parents wanted to ensure the child’s wellbeing. As one mother described it:

You are used to, okay, everything revolving around her. She needs care with everything. She cannot do anything herself. She depends on us in everything she does. You grow into that. It becomes normal (…) You are used to being in such an, well, to constantly keep an eye on her. At this time her bottle. Medication must be taken at that time. It is all about her, all day through. (T6)

Many parents expressed challenges related to epileptic seizures, coughing attacks, respiratory distress, and other complications associated with the child’s disabilities and complex health. In the interviews, the parents explained that they had learned to deal with the serious implications of the child’s PIMD. This was, for example, through closely monitoring potential patterns of behaviour that could harm the child or family:

I developed a certain eye, with which I see things before they even exist. And that helps to reduce or even prevent negative behaviours. (T14)

On the other hand, it meant that parents got used to the condition of their child, while the uncertainty never really vanished. A parent illuminated to balance parallel feelings at critical moments:

We see those attacks so often and on the one hand it does not really affect us that much anymore. (…) At the same time, it is always a hard thing. It is always about, as long as it goes well. (T1)

Furthermore, the complexity of the child’s health required work to access the necessary assistive technology and healthcare services (such as day care and respite care) to manage daily family life. In the interviews, the parents explicated their lessons learned in dealing with day-to-day challenges. They described that keeping balance emerged from a continuous learning process in which they developed knowledge about the complex needs of the child, the required care and also about ways to find appropriate support. Many of the parents referred to this learning process as “professionalisation” and indicated this was conditional in order to maintain caring for the child.

“Everything requires energy”: Multidimensional weariness

A predominant element in parents’ lifeworld was dealing with feelings of physical, mental, and existential weariness. This weariness often started after the discovery of the child’s disabilities. Many parents had felt derailed when they had to adapt to loss of the child and family they had anticipated. They had to come to terms with new perspectives that were revealed by prenatal screening, findings during childbirth or the child’s delayed development or developmental regression. There was a degree of sadness in every account as parents discussed their existential struggle, trauma and grief. When family life evolved, all parents struggled with impacts on “normal” family development:

We still have babysitters, well, nurses, and we still change diapers and use baby monitors. That while she is almost eighteen. (T1)

Weariness increased over the years as parents often overstepped their boundaries. For example, many care duties continued at night for years, which highly impacted the parents’ level of energy. A mother mentioned: “I sleep awake. I always keep an eye on that baby monitor” (T6). Parents also described dreariness following loss of opportunities for personal development and of positive expectations of career and family life. This was associated with prioritising the child’s best possible quality of life. Some parents felt they were only a shadow of their former self: “When you have a child with a disability, things are no longer evident” (T13). Parents indicated that caring for the child often meant drawing on personal reserves:

I only realised the full impact on family life after his death. What you actually had to do extra for him. And what did that mean for us, for family life? It actually meant we just kept going, but if we … At times, I think that if it had taken longer, I would not have survived. It had a huge impact. (…) I was only concerned with him. (…) I did it with love and joy, for that little man, but looking back, I thought … it took so much energy and time. You don't realise that at that moment, because you just keep going: everything for the child. (T10)

Commitment to their family and finding meaning in their experiences were key to finding ways to cope. For example, one father stated when asked about his drive to push limits despite his exhaustion: “Just the love for him, and the wish that he has a good life” (T2). Sharing care duties with the life partner and professional caretakers was explained as vital in keeping balance. Furthermore, an ability of having paid work, “normal” participation within parents’ communities and time for selfcare were described as important in order to “have a life,” and counterbalance feelings of dreariness and exhaustion.

“I wish I could split myself into two”: Care for siblings

A consistent theme throughout the interviews was the impact on family planning and balancing time and attention for all children in the family. For example, parents described that having a child with PIMD impacted their decision whether or not to want more children. They spoke of balancing chances of recurrence and options in genetic testing and prenatal screening against their wish for a bigger family. Some parents said it was impossible for them to have more children with the same condition:

Suppose we have a second child like her, then we have to go to the hospital every day. That cannot be combined. (T20)

The parents in this study that cared for healthy siblings as well reflected on the impact of the child’s PIMD on their other children. Many parents expressed they often felt divided in themselves as meeting the child’s extensive care needs often meant going against the interests of siblings. The need for continuous surveillance of the child implied the parents were dependent on help for doing activities with siblings. Furthermore, parents pointed out that the frequent hospital admissions led to reduced availability of at least one of the parents at home. Another concern of parents was the possibility of a fatal outcome of health complications in the presence of siblings. Parents described that the partake of healthcare professionals (HCPs), such as specialised nurses, at home, informal help, and respite care were indispensable to achieve a balance between caring for the child effectively and being a good enough parent for any other children. In relation to their other children, parents also mentioned positive aspects, such as a special bond between the child and siblings, greater independence and strong social or life competencies.

“Our live has taken a turn”: Social connectedness

In the interviews, parents also explicated implications on social connectedness and experiences of isolation and loneliness. The parents struggled to maintain their social life and to secure their place in society. For example, this was related to spending a lot of time with the child alone. This was during hospital stays, but also at home as to protect the child against disturbances such as infectious diseases. Parents told the forced change of lifestyle limited them to continue their social lives. Many parents explained they often did things separately in order to balance the child’s care needs with the ambition to keep up a social life. However, because of this choice they missed doing things together as a couple or family. Likewise, creating time to do activities with healthy siblings or catch up with friends or relatives, entailed separation from the child. Besides, many parents in our study conveyed a feeling of aloneness evoked by people around them that could not empathise with their duty of care (“They have no idea” and “It is beyond their capacity to comprehend”) (T9, T11). Some parents experienced a distance from people around them because their lives unfolded in different ways. A mother described:

So that is hard. They go on with their lives and ours has taken a turn somewhere. That is how I see it. (…) Others can do it all, our environment, they just develop differently than we do. And of course, we try to participate, but it remains, well, we just have to arrange and organize a lot to, even be able to go on holiday, for example. (T11)

Parents explained that for some people in their communities it proved exceedingly difficult to deal with the lasting character of “adversities” and with the child’s future prospects. For some parents this meant a decrease of their social network: “There are also people, relatives, who dropped out” (T12). Equally, parents noted support from their communities that was vital in persevering. Some of the participants experienced lasting practical help with getting siblings to activities or taking care of meals and household duties during acute events or hospital admission. The parents in our study illuminated it was important for them to feel understood and accepted as a family. The parents believed that their child with PIMD gave back to society in that the child opened the eyes of and educated others to be more empathetic and appreciative for things often taken for granted. With regard to dealing with changes in social connectedness, the parents in our study also mentioned valuable connections with other parents having children with PIMD. This was for identification, creating an image of the future, and for the exchange of medical and practical tips and tricks.

“We do not know what to hold on to”: Uncertainty about the future

Another important component of the parents’ lifeworld consisted of complexities and painful issues concerning future life. Their concerns about the future of both child and family highly affected their capacity to maintain and thrive. An example of an important concern was the parents fearing tragedy in the child’s life. For some of the parents this implied weighing pros and cons in values on quality of life and dying:

Not doing that treatment [scoliosis surgery] also meant letting go of recovery. And to await how his body would develop towards death. Facing that was a difficult path. The easy path for me was to keep fighting and to aim for prolonging life. (…) The best thing for him was actually not to continue saving his life, but not to burden him with even more treatments. (T19)

Parents conveyed they balanced the pain of bereavement with the wish not to go beyond a minimum level of quality of life. Many parents also worried about how their child would fare when they could no longer make the same efforts for the child themselves:

I hope she will not survive me. I do not want to lose her, but I hope she will not outlive me. That would be a disaster. Because I think that, then you really have a problem with how everything should be arranged. (T06)

This worry was associated with the shortage of high-quality assisted living options. Parents were uncertain that caring activities would remain at the same level without them being there. Several parents with teenage children talked about concrete plans for the future, such as creating their own accommodation for the child with other young adults with PIMD. It was important for them to implement their own values of care as they thereby protected the child’s future wellbeing. Nearly all parents conveyed that “staying in the here and now” helped them to counterbalance their deep concerns about the future of child and family.

“It takes so much time and effort”: Wrecking bureaucracy

The parents struggled with bureaucratic procedures that influenced the course of their day-to-day life. The complexity of the child’s care needs meant parents had to engage in various laws and regulations. As a result, the parents experienced fragmentation and discontinuity in healthcare services. For example, the parents experienced time consuming difficulties in gathering information on the resources available, and in applying for the necessary resources. They conveyed to spend many hours a week on the administration required to get the professional support and equipment that was needed to maintain ongoing care for the child. Moreover, they experienced lengthy procedures to provide for the healthcare services and assistive technology conditional to manage family life. A mother expressed her distress and frustration like this:

Caring for him is not hard. What is hard, is such opposition. The parties involved do not think together. It takes so much time and efforts. (T3)

The hours parents spent on administrational matters (“formfilling”) was time they could not spend with the child, any other children, their life partner or on their own ambitions. Many parents felt burdened by such care institutional practices and the perceived focus on governing and fraud avoidance. They explained common practices threatened their sense of balance, not only because of wasted time and energy, but also because they were not made to feel heard and understood. In contrast, the parents who felt supported and easily provided with the care and equipment they needed explicated that this eased their burden of care and thereby helped to balance life commitments.

“I would be much more assertive now”: Dependency on healthcare delivery

While parents “professionalised” and adapted to address the child’s care needs, they felt dependent on interactions with HCPs. The parents' accounts showed that these interactions were an important part of their lifeworld. For example, the parents had to learn to work with required assistive technology and make decisions based on analysis of acute medical emergencies. This was challenging and distressing (“scary”) and a constructive relationship with physicians, nurses, and other HCPs was conveyed to be essential in coping:

But we were able to directly call the paediatric ward. We had a hotline (…) When something was wrong, we were always immediately taken seriously. (T10)

The parents described that it helped them when they could work with HCPs in an equal collaboration and partnership. They perceived themselves to be the key sources of information about the child and the professionals the sources of specialised knowledge, for example about the consequences of the different options of medical care and treatment. However, along with positive experiences, many parents in our study illustrated indifference and reduction in their interactions with individual HCPs: “He is not bad, but he does not say anything to her” (T9). They were also confronted with boundaries in medical disciplines:

I had the expectation that professionals, care providers like therapists, but also the rehabilitation specialist and the paediatrician, knew, and that they were going to help us. That was having too high of expectations. It turned out that many people find it very complicated care issues. They were only able to see their own specialism. (T19)

Paediatricians often played a central role in retaining an overall view. Therefore, the transitions to adult care created discontinuity for the families and many parents felt challenged to fill these gaps. The disappointing experiences threatened the parents’ ability to keep balance when dealing with care complexities. Many parents described that they gradually acquired courage at the relational level of interactions with HCPs in order to advocate the best interests of child and family. Parents explained that they continued to defend the child’s interests time and again, even if they felt uncomfortable or inconsistent with how they usually acted.

“It costs a lot of money”: Financial concerns

Another component of the parents’ lifeworld where they were challenged to hold and repair balance was their finances. For example, many parents explicated to rely heavily on their own finances to arrange therapy or equipment, home modifications and appropriate transportation (such as an adapted car and electric wheelchair bicycle). Some parents hit rock bottom financially because they used their income and savings to cover expenses. They explained this was despite regulations applicable for families with children with PIMD. The parents in our study described that it was often necessary to choose between necessary child related expenditures and expenses for family activities and holidays. Other challenges related to keeping balance in financial matters were related to changing or quitting careers (“I kept having such a dilemma feeling of not being able to meet expectations”) (T19) and plans to reduce future working hours in order to enable the child to stay at home.

Discussion

To contribute to understanding of the parents’ experiences, we explored the essence of the phenomenon of “parenting a child with PIMD.” Our findings highlighted that the parents’ ability to keep balance was related to societal and practical acknowledgement of their particular circumstances. Lack of such recognition of challenges contributed to the parents’ burden of care and prevented many parents to thrive. Their circumstances and challenges were too overwhelming to be integrated in a way that would balance optimum care for the child with other desires in life. For many parents, the societal and practical support they received did not match what was needed to thrive on a personal and family level. They were in a “survival mode” rather than “living life.”

Our findings resonate with other studies that related availability of resources to the parents’ ability to “have a life” and participate in society; in line with personal ambitions (Boelsma et al., 2017; Woodgate et al., 2012). The importance of societal and practical acknowledgement of parents’ challenges was underlined in studies that examined the concept of resilience in families with children with disabilities (Breitkreuz et al., 2014; McConnell et al., 2014; Muir & Strnadová, 2014). Studies described that (1) social support from extended family, friends, and neighbours and (2) successful access to health care and services systems were key in experiencing wellbeing and ability to maintain daily activities (Breitkreuz et al., 2014; Muir & Strnadová, 2014). This socioecological approach of resilience accentuated that families with children with disability cannot be expected to persevere and do well if external resources fall short on what is actually needed to live life conforming to common standards. Our understanding of the essential meaning of the phenomenon “parenting a child with PIMD” also implies that the parents’ lived experiences may change if the parents’ context actually sustains caring for a child with PIMD at home. When people and society respond differently and more adequately or with care, some of the parents’ struggles transform. Fast and easy access to assistive technology and services for specialised home and respite care should be provided in order to give parents the opportunity for participation in society other than only caring for the child.

The findings of our study can be linked to concepts of vulnerability and dignity (Leget, 2013; Scully, 2014). A distinction can be made between inherent (ontological) and situational (contingent) vulnerabilities (Luna, 2019; Scully, 2014). In the parents’ lifeworld, their vulnerability is inherent while challenges were intertwined with the child’s complex health needs, to which parents have to adapt. However, our study results underlined that many of the parents’ challenges were linked with situational vulnerabilities that appeared from the sociocultural and political context. Their vulnerability was in many ways not an intrinsic characteristic but resulted from lack of recognition and understanding. This interpretation of findings reflect notions of social and relational dignity that linked one’s own sense of value and worth to experienced acceptance through sociocultural and (health care) institutional practices (Delmar, 2013; Leget, 2013). This means that if the parents’ wider sociocultural and political circumstances would change, then parents’ daily life would be less constrained by extraordinary challenges and social constructs that result in families’ marginalisation (Boelsma et al., 2018; Brown et al., 2019; Carnevale et al., 2008). Families with children with PIMD may then experience that their particular circumstances do not necessarily lead to a quality of family life inferior to what is considered “normal.” Awareness of the significance of genuine attentiveness and responsiveness on the societal level may be the first step in supporting families caring for children with PIMD (Todres et al., 2007; Tronto, 1993).

Our study highlighted that the parents’ existential threats encompassed the child’s vulnerable health status and anxiety about the child’s future. The child’s inherent vulnerability and medical complexity were permanent and confronted the parents with extensive life challenges. Our findings described the many implications of the child’s health condition for family life, such as dealing with ongoing emergency situations and the associated interventions, and about decision-making (forgo) of care and treatment. Parents in our study indicated the importance to reflect on personal and professional views on the child’s quality of life, and to discuss goals and preferences for care and treatment with HCPs engaged in partnership and equality. In this study, findings show resemblance to studies on advance care planning in paediatrics that found that parents need an attitude of listening and encouragement from HCPs to express their feelings and deeper motives and values (Fahner et al., 2020; Verberne et al., 2017). Other studies found that arguments in favour of sharing processes of decision making, including end-of-life decisions, outweigh the arguments that oppose an active role for parents. This is because parents often consider themselves expert of the child and active participation may be helpful for parents. The parents’ views and concerns should be integrated in medical decision making on the child’s quality of life and death (De Vos et al., 2015; Gillam & Sullivan, 2011; Kruithof et al., 2021; Kruithof et al., 2022; Zaal-Schuller et al., 2016). Our findings underlined that the appreciation and understanding of the parents’ roles and experiential knowledge of their child may reduce existential distress and strengthen parents to find and maintain balance on the personal and family levels.

Reflections on strengths and limitations

A strength of this study was that the sample consisted of parents (both fathers and mothers) that were very involved with the study. The procedure of member reflections was actively used by the parents (92%). The parents in this study confirmed the results reflected their actual lived experiences. Several parents also gave additional insights that were used to strengthen descriptions. Before and after the procedure of member reflections, the analysis and interpretation of data were discussed in a team of four researchers to maximise validity and credibility, and practice the attitude of sensitivity towards the interview data and the appearing of the phenomenon (“bridling”). There were limitations to consider. Most parents in this study were of European descent, and they all cared for their child together with a partner, in one family home. Exploring the perspectives of parents with different backgrounds and family constructions may add to understanding of the situatedness of the parents’ accounts (such as embeddedness in geographical and sociocultural contexts). Secondly, we conducted five interviews with the father and mother of a family at the same time. This might have restrained parents to raise issues such as experienced impacts on the life partner relationship. On the other hand, we noticed that the parents’ interactions encouraged additional explanation of experiential knowledge. A third consideration related to the situation that 8 out of 22 of the children were deceased. However, the interviewed parents of deceased children did not really differ in their experiences from the parents of living children. A fourth and last consideration applies to conducting two (individual) interviews online because of quarantine measures during COVID-19. Interestingly, impacts of the COVID-19 pandemic accentuated the parents’ struggle to keep balance and persevere. For this reason, these interviews were considered to add value to understanding of the parents’ lifeworld.

Implications for practice

Analysis of the parents’ lived experiences and their challenges in keeping balance accentuated the importance of using a lifeworld-led approach in healthcare systems. This involves ensuring that the parents’ everyday experiences are central in underpinning care and services. It implies that policies affecting care (institutional) practices are informed by an understanding of what parents caring for children with PIMD go through (Todres et al., 2007). The findings of this study underlined that the parents’ ability to keep balance was affected by the extent to which the parents had access to resources: equipment and services that met the unique family needs of that time and that enabled them to “have a life” themselves. This means that, despite the positive changes to help parents care for children with PIMD at home, more needs to be done. Advanced quality of care includes easy access to equipment and services needed to live a “normal” family life. Health care and service systems must be user friendly and fast to navigate and resources needed should be provided in a timely manner. Providers working in healthcare services could routinely come to families’ homes and ask what the parents actually need in order to properly care for their child and family. Community stakeholders and HCPs could contribute to the wellbeing of children and families by being attentive to particular circumstances that affect the parents’ efforts to keep balance and manage as a family. Attentiveness to the parents’ challenges with respect to keeping balance may be the first step to support and can also contribute to relationships in which the parents may express their essential concerns. This might promote mutual understanding and better communication. Understanding and valuing one other is also essential in creating medical decision making in which the parents’ role is appreciated and integrated. We believe further research may explore the parents’ perspectives on the child’s quality of life and death. Future research should also address inequities being experienced by families with children with PIMD and focus on societal and institutional practices that oppose disadvantage. The interconnectedness and interdependence with the parents’ cultural, religious, and spiritual conceptions may be further explored.

Conclusion

This study provided insight in the phenomenon “parenting a child with PIMD.” The essential meaning of parenting a child with PIMD was understood as: “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” We identified the following eight constituents: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Study findings indicated that the capacity of parents to persevere and cope was associated with acknowledgement and understanding of their challenges. Parents’ vulnerabilities could be addressed by creation of healthcare systems that are humane and give families easy access to equipment and services needed to exercise control of family thriving. Understanding should as well be experienced by parents in their relational networks. Existential distress may be reduced by an attitude of listening to the parents’ personal views on their child’s quality of life, inclusive communication about goals and preferences for care and treatment, and by acknowledgment of related family needs.

Acknowledgements

The authors are thankful to all parents who participated in this study. Thank you for sharing your personal stories with us. The authors thank Wendy van der Geugten and Martijn Simons for providing feedback on earlier versions of this research article. The authors are grateful for the detailed and constructive comments of the anonymous reviewers.

Disclosure statement

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

Additional information

Funding

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