Introduction
Being the parent of a child with disability is for many a difficult and stressful situation, with negative impact on parents’ wellbeing. The research literature suggests highly different explanations of why being the parent of a child with disability is a difficult situation, depending on how the issue is researched. One line of research is founded in a biomedical approach with a focus on investigating how the difficulties are related to the child’s disability, intrafamilial or parents’ intrapsychic factors. This line of research has found that the child’s disability produces a larger-than-usual care burden (Carona, Crespo and Canavarro 2013; Pousada et al. 2013). Parents must overcome grief connected to their loss of an expected of imagined non-disabled child (Barnett et al. 2003) and develop the necessary coping skills to come to terms with their child’s disability (Krstic, Mihic and Oros 2017). Another, very different line of research derives from the social model approach to disability. The social model perspective and critical disability studies both oppose the proposition that the difficulties and negative emotionality arise from within the families and point to social causes such as stigmatization, social discourses about disability as a personal tragedy, and an overall ableist society (Goodley 2014; Oliver 1983). Research focuses on how the social difficulties and negative emotionality experienced by families with a child with disability are related to the political, economic, social and cultural oppression in the present society that push families into marginalized positions. The problems cannot be solved within the families themselves, but only by addressing stigmatizing structures and practices and by removal of social barriers for example through political activism (Sauer and Lalvani 2017).
Another debate regards the emotional tone of parenthood with a child with disability. Plenty of research, often applying a biomedical approach, have investigated the hardships and negative emotions of parenthood of a child with disability, charting a situation of lower quality of life, stress, physical and mental health problems and less time for social activities and recreation (Barutcu et al. 2021; Pousada et al. 2013). However, some argue that as the parents adjust and learn to cope and take care of their child, they develop a sense of competence and personal growth, thus adding positive emotions to the general picture (Wilgosh et al. 2004). On the other hand, research guided by the social model and critical disability studies perspective suggests that the negative emotions and lower quality of life need to be understood in relation to social barriers that limit family life, educational and vocational opportunities and leisure time activities (Lalvani 2015; Ryan and Runswick-Cole 2008). Positive experiences of personal growth may come from parents’ engagement in disability activism, striving to resist the discourse of disability as a personal tragedy and change society toward more opportunities not only for their child but for other children and families as well (Sauer and Lalvani 2017).
A Cultural-Historical Dialectical Understanding of the Role as Parent
The debates address a more basic query: Are parents of a child with disability similar to other parents, just with a bigger care burden and/or fewer social opportunities? Or is parenting a child with disability fundamentally different from parenting a child without disability, thereby making any comparison between the two situations faulty? Studies comparing parents of children with disability to parents without tend to stress the deficits in lifestyle and the negative experiences associated with having a child with disability, either as the result of intrafamilial constraints or social barriers. These studies often overlook the cultural-historical conditions for parenting and how they produce a parenthood situation for parents of a child with disability that is fundamentally different from the situation of families with typically developing children.
To understand the situation of parents of children with disability, this article builds on the cultural-historical dialectical approach to disability based in Vygotsky’s (1993) theoretical framework and further developed by various researchers (Bøttcher and Dammeyer 2016; Gindis 1995). The cultural-historical dialectical approach to disability agrees that social barriers are important to understand the production of disability but stresses how disability is a relational and changeable phenomenon that develops in the intersection between individual persons and societal conditions. Society has developed to accommodate and support the development of children following a typical psychophysical developmental trajectory (Vygotsky 1993). But often, a child with disability will follow a developmental pathway that diverges from typical socio-cultural expectations—in minor or in more pervasive ways—and adaptions are required in social settings in order for the child to be able to participate, learn and thrive (Bøttcher and Dammeyer 2016). Thus, while parents of typically developing children will be able to place their child in a local regular daycare, this same daycare might lack the capacity or competence to support a child with disability, at least not without extra resources. When a child is not following a typical developmental trajectory, a mismatch easily develops between the mainstream social situations of development (e.g., what is expected, encouraged and possible in a typical daycare) and the child’s development (e.g., delay in motor development and ability to move around independently). The mismatch makes it difficult for the child to participate in and benefit from age-usual activities in pre-school and school settings. Disability is created by this mismatch between the social situation and the child’s abilities and need of support (Bøttcher and Dammeyer 2016).
The cultural-historical dialectical understanding of disability explains why disability is changeable over time. The mismatch will change and become smaller if the needs are met with adaptations and support but might also increase when the child moves from pre-school to school and other skills are expected of the child without accompanying support. Furthermore, there is an inherent danger that if the mismatch is disregarded, it can impede the child’s development and increase the disability over time as the child fall more and more behind its peers. On the other hand, if parents and professionals react to the mismatch and find ways to adapt the social situation in such ways that the child’s social participation and development is supported, the disability might decrease over time (Bøttcher and Dammeyer 2016; Vygotsky 1993).
Parenthood with a child with disability differs from parenthood of typically developing children in at least three ways:
At an individual level, parents may feel less sure about how to care for and support their child with disability, because parents’ knowledge about childcare stems from socio-cultural practices with typically developing children (Bøttcher and Dammeyer 2016; Greenspan 1998). What do you do as a parent if your child deviates from developmental milestones or does not develop speech? Often, parents are in need of knowledge about their child’s disability and methods for how to support their child and must access this through different professionals such as physiotherapists (Wise and Gellasch 2022).
Parents’ conditions for parenthood and family life develop from their overall socio-cultural situation. As the parents are cast into their new situation as parents of a child with disability, their situation as a family will often be at odds with conditions for family life in their socio-cultural setting. For example, it may be difficult or impossible for one or both parents to return to full-time work as planned after maternity or paternity leave and they might need to find ways to reorganize their life (Olsson and Hwang 2006).
Managing the mismatch between their child with disability and mainstream social settings is ongoing and will often involve cooperation with different professionals and authorities, depending on the particular socio-cultural setting. Many parents of children with disabilities have also found that they must act as advocates for their child to ensure their child the necessary support (Ryan & Runswick-Cole 2008).
The Formation of Strategies from Parents’ Motives within the Universal Welfare State
In universal welfare states, for example the Nordic countries, the context of this study, the parents and the child have a basic right to free welfare services including compensation for temporary or permanent impairments. The idea is to ensure equal societal participation in line with the social model (Pedersen and Kuhnle 2017). However, access to welfare services can be circuitous and require parents to take on a role as both negotiators and networkers that ensure that other professionals join in on a common goal (Dammeyer 2010). The struggle with the local welfare systems can create a time burden of its own and become a source of stress and negative emotions (Ryan and Quinlan 2017).
According to cultural historical theory, motives develop from the social and cultural formed social practices individuals participate in, and these motives shape peoples’ actions in different activities over an extended period of time (Hedegaard 2009). Parents living in the Nordic counties develop their motives from the values and expectations to a good life within their socio-cultural context. For example, parents of children with CP in Denmark participate to a great extent in the labor market (Michelsen et al. 2015) in accordance with the welfare state’s ideology that all citizens should be able to participate in society to a similar degree. As another example, studies have found that parents in both Denmark and Norway, who share the same welfare state ideology, expect their child to move out of home and live independently, also when the child has a severe disability and need round-the-clock support (Brennan et al. 2016; Bøttcher 2019).
Parents are guided by their motives as they form personal expectations and develop daily strategies for how to overcome the mismatch and manage the intersection related to the care of their child with disability and their life as parents and adults. The motives, expectations and strategies evolve over time depending on the particular conditions, tasks and demands associated with different social settings and as the child develop and grow older (Avieli and Band-Winterstein 2017). As the child passes developmental milestones, former developmental tasks disappear, and new ones arise (Park and Nam 2019). Before the transition, such as from kindergarten to school, parents might have established a good match between their child’s competences and needs for support and the social situation in the kindergarten. However, as the child moves into school, new tasks will emerge (Ankeny, Wilkins and Spain 2009). The transition to school requires that the parents plan and negotiate for support and services in relation to the new social setting (Siddiqua and Janus 2017) in order to establish a new match between the child’s abilities and the social situation in the school. The cultural-historical theory is useful to outline how being the parent of a child with disability develops over time from the time when the parents are thrown into the new situation and as they negotiate the mismatch between their child’s abilities and opportunities in specific socio-cultural settings.
Study Aim
This study focuses on parents of children with cerebral palsy (CP). The diagnosis of CP can be unexpected, for example following a very premature birth, or the conclusion of a longer process with an accumulation of symptoms. In both instances, the parents find themselves thrown into a situation they had not prepared for, even though they had prepared for parenthood. Furthermore, even with a diagnosis, CP still presents in many severities of motor impairments and often also accompanying impairments in perception, cognition, communication and/or social functions (Bax et al. 2005). Some children with CP develop close to typically developing children, while others will require life-long full-time assistance. Thus, the requirements in the situation as parent of a child with CP can be unclear and the child’s future hard to predict (Graungaard and Skov 2006; Shevell and Shevell 2013). The aim of this study was to investigate how parents manage to take care of their child with CP in the Danish welfare state. More specifically, how do parents’ development of strategies for managing childcare evolve from around the time of diagnosis to the time of school start?
Method
Participants
Thirty-two parents of 17 children with CP participated in focus group interviews. Participants were recruited from participants in the four-day courses ‘Get off to a good start at school’ at the Elsass Foundation, Denmark. The Elsass Foundation is a private organization that offers a wide range of activities aimed at improving the life of individuals and families with CP. Courses are advertised on the Elsass Foundation webpage and through patient organizations; participation is free of charge and includes free accommodation and catering for the families. The course, from which the study participants were recruited, is primarily for families with a child with CP at 5–7 years of age, expected to start mainstream school or in the process of deciding whether their child should start mainstream or special school. Families of a child already in school or aimed at a special school can be accepted if there is course capacity. No further exclusion criteria were applied. The Elsass Foundation encourages both parents to participate to be equally knowledgeable in relation to their child and school decisions.
Families in the study came from all of Denmark. Information letters about the research project were sent by email to the participants prior to the course. Inclusion criteria was participation in the Elsass course, no exclusion criteria were employed by the researchers. The letter stressed that participation in the research project was completely voluntary; families were free to participate in the course without participating in the research project. However, all families choose to participate. All parents participated as a couple in the focus group interviews except of one mother and one father who participated alone. Written informed consent was collected as part of the information package.
Interview procedure
The focus group interviews took place on the last day of the Elsass course. Each course had 5–6 families as participants and interviews were organized with two groups with 2–3 pairs of parents. In total, six focus group interviews were completed in connection with three courses. The interview study reached saturation and data collection terminated when narratives in the last set of interviews repeated earlier findings, indicating that the research had thoroughly explored parental use of strategies.
All interviews followed the same interview guide that explored the parent’s experiences and strategies chronologically starting with the time they were informed about the diagnosis of their child to experiences around the transition to school. The overall structuring of the families’ narrations was: (1) The early period including when their child was diagnosed with CP, (2) the period while their child went to kindergarten, (3) the period preparing for their child’s transition to school and, if their child had started school, and for some (4) the early period of their child as a schoolchild.
Each focus group interview was led by the first author, while the second author kept track of the time and asked follow-up questions. All interviews were audio recorded and transcribed verbatim. All participants and their children were assigned an alias, providing parents and their child with names with the same initial letter to keep track of families in the interviews. Specific information about the child or parents, for example names of schools or municipalities, was omitted to ensure anonymity.
Analytic procedure
The analytic procedure was based on thematic analysis approach (Terry et al. 2017). In the first step of analysis, all interviews were analyzed bottom-up by providing the narratives of ‘what parent did’ with descriptive labels. Labels were revised and refined through repeated readings of the interview transcripts into recurring strategies. In the second step of the analysis, the labeled strategies themselves were analyzed for relations between them hierarchically (Did some strategies function as meta-strategies to other strategies?) and longitudinally (Did strategies arise early or later? Did later strategies eclipse earlier ones or could different strategies function in parallel?).
Results
The analysis resulted hierarchically in two tiers of strategies and longitudinally in three meta-strategies. An overview is presented in Table 1.
Table 1
Longitudinal development of meta-strategies and associated strategies.
| META-STRATEGIES | ASSOCIATED STRATEGIES |
|---|---|
| Wait for and accept offers of help and guidance |
| Seek knowledge |
| Build arguments based in the law | |
| Ensure the right decision is made in first attempt | |
| Build liaisons with professionals | |
| Be extremely persistent | |
| Surrender | |
| Start early preparing for the transition to school |
| Seek knowledge about the suitability of local schools | |
| Get a psychological assessment of one’s child | |
| Apply for postponement of school start |
Meta-strategy 1: To expect and accept welfare services in an unknown situation
At the time their child was diagnosed with CP, most parents described being in an unknown situation, feeling uncertain about what to do as parents:
We were told we had a child with CP and it was like the whole world turned 180 degrees around and you found yourself in an unknown place. For good and bad. […] I also had the feeling, now what? What’s going to happen? What kind of abilities will she be able to develop? (Else, mother of Emma, born preterm and diagnosed at one year of age)
After learning that their child had CP, many of the parents felt uncertain about the family’s situation and sought further knowledge on their own. The parents were also grateful to receive advice and help from professionals who had knowledge about CP and could provide them with ideas about how to support their child:
Suddenly, we had a different kind of child than expected. It was something of an upheaval, we had to think differently about things. […] So in many ways it was nice we were caught. That we were scheduled to see the physiotherapist and got some guidance. (Else)
For all the participating parents, a state of uncertainty and loss of direction as a parent lead to the first strategy of just accepting social services, based in the expectation that the welfare state would provide the necessary help.
Meta-strategy 2: To struggle for your child’s and your family’s rights for welfare services
As time went by, the first meta-strategy of accepting welfare services was supplemented and eclipsed by the more proactive second meta-strategy of struggling for services. The meta-strategy developed in response to the parents’ experiences of not receiving the support they expected. In response, the parents shifted from a passive and anticipative attitude toward a more active and outreaching approach that involved the development of several negotiation strategies:
We duck, jump, bow and curtsey, avoid and accept, do whatever is demanded at the moment. Like, we have discovered what to say, what to do, what not to do. Cold facts [..] (Morten, father of Malte, diagnosed at two years of age)
When asked how this strategy developed, Morten elaborated:
In meeting the system. […] In dialogue with others with experience. I think the best sharing of knowledge has been with other families.
Strategies were developed both from own experiences and from connecting with other parents of children with CP, for example by joining social media groups for parents of children with CP. The parents learned to seek knowledge what type of treatment and therapies that were available for children with CP, but also what type of welfare services they were entitled to according to the law and how to build arguments for a recognizable case that accommodated their requests for particular welfare services with the legal and financial rationality within the municipal organization:
Well, I think, it is not that we have a lot of demands, but there are some types of support we would like to get, and that we ought to get as the least, but they don’t take into consideration that if you have been considerate about one thing, then you can get something else. It is all law sections and financial categories. Therefore, our approach is to build a strategy that makes it easy for them to fit us with their financial categories. Even when we fabricate a bit. As long as we reach the goal (Frede, father of Freja).
The fabrication of their own case was experienced as necessary and closely related to the creation of arguments based in knowledge about specific aspects of the law:
It is really stupid, because every time you need a new splint, you need one size of shoe on one foot and another size on the other [if the child only uses a splint on one foot] and that is just how it is. But you need to spend a minimum of 5000 [Danish] kroner [approx. 700 Euros] a year to get a refund [from the municipality]. […] So we have to invent extra expenses [to be eligible for refund of extra expenses associated with having to buy two sets of shoes instead of one]. (Morten)
Another father explained:
And we have armed ourselves with the experiences of others in our encounters with the municipality. So, what we did was, we brought in the Elsass Foundation, we brought in the physiotherapists, the occupational therapists, we got a medical statement. […] Facebook, the CP groups in there. We had also attended the ‘Good Start’ course, build up a network and we asked the Elsass Foundation: How can we prepare? Because you quickly learn that in the encounters with the municipality it is crucial to hit the mark at the first attempt. Otherwise, you become stuck in the mud. So, it is necessary to line up the whole battery each time. […] Because, if your application is declined, the work to change that rejection—no matter if it is right or wrong—it takes years. And it is your children in the line of fire all the way. (Hans, father of Helena, diagnosed at 2½ years of age)
The strategies of seeking knowledge about and building arguments based in the law was related to the specific strategy to ensure that the right decision is made in first attempt through the creation of a tight case. Because if the negotiation with the municipal social workers left too much room for negotiation, the request for a welfare service might be declined. The parents had opportunities for appeal, but the process of altering a decision was work- and time-demanding. The workload associated with negotiating and struggling with the welfare system was experienced as extremely stressful and exhausting by the parents:
It wears you down. It wears you down like nothing else. People are like, they cannot understand why we are so busy all the time, what’s all this frustration about? (Karen, mother of Karlo, diagnosed around birth)
Several of the parents described how the ongoing need to struggle had changed them:
People talk about how they leave themselves outside the door before they enter and start to make demands: This is what we want. […] What you leave outside? You as a nice person. (Fie, mother of Freja)
I have become increasingly stubborn. This is something I have learnt. I used to be a nice person, before we had Johan. (Jane, mother of Johan, born premature and diagnosed at 1½ years of age)
As they were building their case in preparation for their struggle with the municipality, parents also adopted a specific strategy of building liaisons with relevant professionals, as described by Hans above and in this quote:
Well, we have learned that when we apply as parents, we are seen as overprotecting, we fuss too much, they are like, ‘Let him try by himself first.’ But as soon as a professional comes along with us, who states that this support is what he really needs, then the municipality is suddenly willing to listen. (Gitte, mother of Gilbert, born very pre-mature and diagnosed early)
The parents’ feeling of absolute necessity in relation to the desired welfare services also produced a specific strategy of being extremely persistent in their efforts to get a particular service:
We had applied for home training, and we have been successful after our case has been around the board of appeal. We have been very, very persistent in getting what is our right. And we have involved professionals and much more to gain that service. (Carl, father of Chris, diagnosed at one year of age)
The parents were aware that the professionals working within the municipalities often had large caseloads and subsequent long response times. The long response times were extremely frustrating for the parents, and in response, they would take charge of preparatory work and press for a decision by phone or in person:
We take down the minutes of the meetings, write the applications, we find the correct forms and who to send them to. […] Then the case was a difficult one and the social worker needed to look more into it and she didn’t return the call and suddenly two weeks were gone. And it was the kind of decision that could be made in half a day. Come on! I know, it’s a job, they have many cases. But it is our life. (Ida, mother of Ingelise, diagnosed at 6 months of age)
The frustration of the parents and their willingness to keep struggling despite the stress stemmed from a feeling of absolute necessity in relation to their applications for different types of social services.
At times, time required in the struggle for your child’s right to a welfare service could be in conflict with the need to find a solution to a mismatch here-and-now. In that case, several parents described how they chose a strategy of surrender and found alternative solutions by themselves. This is explained by a father of a child who needed intervention from a speech and language pathologist, which the parents had ended up financing themselves:
Time flies and then a year had gone since we had mentioned this. She gets older and older and what if she suddenly becomes aware of not being able to communicate? And if we had to wait yet another year before she could get a phonetic test in place in preparation for them to grant speech therapy. One year is a long time for a child at four years of age. So, time had something to do with it [the decision to give up and pay themselves]. We couldn’t wait. (Frede, father of Freja)
Freja’s parents were not the only ones who had resigned from a struggle for a particular welfare service and created their own solution. Even though parents of children with disabilities in Denmark are entitled to compensation for lost income to the extent that their child’s condition hinders full employment, the negotiation for this service were experienced as difficult for several of the parents:
We also gave up on ‘compensation for loss of income.’ We tried and we had statements from the doctor and this and that, but ‘he wasn’t impaired enough.’ It is difficult to measure because it is mainly the cognitive. And as it wasn’t documented, our application was turned down. His physical impairments were not severe enough. So, we just had to find another way to make it work and we did. (Olivia, mother of Otto, born premature and diagnosed at three years of age)
Meta-strategy 3: To ensure a good fit between the child and the future school
While parents of typically developing children can often presume that their child will be able to fit into the local school, the situation was somewhat different for the parents in the study. They were uncertain about whether their children would fit in a mainstream school, a special school or somewhere in between: Would their child fit in a mainstream classroom, with or without support and accommodations, should they look for a private school, a small school, a special school and which schools were available at all? The many uncertainties and their accumulated experiences of having to seek out services for themselves rather than wait for the system to provide the solutions (meta-strategy 2) was the backdrop for the specific strategy: To start early preparing the transition to school:
Before she ended kindergarten, we asked for a psychological assessment because we thought it was best to be ahead of things. It would just be really stupid to start out being behind. That’s why we thought, we might as well get it done, so it is ready for the school. (Ida)
First time we asked for it [a psychological assessment], they said: She is rather young for that, but you know the system; you need to be one or two years ahead, so they made a note in… maybe in 2020. And then in 2021, they started at the report. (Iver) (Ida and Iver, parents of Ingelise)
As part of the meta-strategy of ensuring a good fit between their child and its future school, parents spend a lot of time learning about available schools, based in a specific strategy of seeking knowledge about the suitability of the local schools in relation to their child:
I made a list of all the local schools. […] I just started with listing schools in our area and the neighboring area. Public schools and special schools, the last was rather difficult because when you google them or call them, nothing or nobody says, hey, we know this [whether the school would fit with the needs of his daughter]. But we tried different schools. […] I called them and made appointments and met with them. Explained about Emma and watched their reaction. (Erik, father of Emma, born premature and diagnosed at one year of age)
To gain knowledge about the suitability of the local schools, the parents not only had to identify which schools existed in their neighborhood. They would often need to visit the schools to evaluate physical accessibility (e.g., the location of classrooms, the playground and stairs or steps) and make an appointment to talk with the school principal about what type of support and accommodation would be available.
Another specific strategy related to the meta-strategy of ensuring a good fit between the child and its future school was to get a psychological assessment of one’s child, as mentioned by Ida above. As children with CP are not entitled to a psychological assessment in Denmark, the parents often had to use one or several of the specific strategies under meta-strategy 2 to be successful in this regard: Enlist professionals, be persistent, accommodate themselves with laws and regulations.
A fourth specific strategy for creating a good match between the child and its future school life was to apply for postponement of school start. According to Danish law, a child must start school the year it turns six years of age. However, it is possible to apply for postponement if documentation for why the child need postponement is provided. The parents’ reason to apply for school postponement was to provide their children with extra time to develop for example motor skills or social skills:
We have already discussed school postponement and why it would be a good idea. […] He was late learning to crawl, and he walks with a walker and such, and in the situations where somebody is indicating: ‘I would like to chat with you,’ well, he doesn’t get that yet, so his social skills need more training. (Per, father of Pelle, premature and diagnosed at one year of age)
Discussion
This present study’s findings have highlighted how the challenge of being the parent of a child with CP depends on the situation as a whole. While the present study did not investigate all aspects of parents’ coping, it adds that coping skills encompass more than the ability to handle one’s child or one’s emotional reactions. Over time, and as reported in previous studies (Ryan and Quinlan 2017; Whittingham et al. 2011), parents must develop a wide set of strategies to cope with the social situation as a whole. Strategies were developed in response to the child’s need for amendments in its everyday settings and negotiations with the social welfare system about welfare services. From the time the parents began their lives as parents of a child with CP, they gathered experiences of failed and successful negotiations and learned from other parents that the type and level of welfare support often depended on their ability to negotiate as well as fight. In response, the parents developed multiple strategies for how to prepare and argue their case and contest the offered solutions or rejections.
The strategies described by the parents were complex. The parents had acquainted themselves with national laws and regulations and developed strategies for how to navigate in different parts of the welfare system. They knew how to relate to different professionals and influence different parts of the system; when to push, how to push and when to find alternative solutions. The type of meta-strategies and specific strategies developed by the parents in this study were developed in tight connection to their specific socio-cultural situation and their child’s specific developmental mismatches. Some strategies seem to be more general, for example the initial feeling of uncertainty and associated acceptance of help, and subsequent development of strategies for negotiation and advocacy (Darnell and Scott 2023; Ryan and Runswick-Cole 2008) and the strategy of being ahead of time (Siddiqua and Janus 2017). One important finding was how several parents chose to solve the situation without the desired welfare services, when the continued struggle for it entailed more waiting time than they considered feasible. The solution of finding alternative solutions hinged on parents’ personal resources and demonstrates the impact of differences in parental resources on the child’s access to developmental opportunities.
In considering the question of why parenthood is more difficult when the child has a disability, our study suggests that a focus on the child’s impairment or the parents’ emotional or practical needs in isolation from their social situation will not be sufficient. Negotiations with the social welfare system were a significant burden that were at the same time experienced as necessary, complex, time-consuming and stressful. Also in line with existing research (Ankeny, Wilkins and Spain 2009), this study found that the magnitude of the parental task could both in- and decrease depending on the child’s movement through different social settings as part of its developmental trajectory, most clearly seen in the increased tasks associated with choosing a school for one’s child. The development of complex strategies deemed necessary by the parents for successful negotiations may explain why previous research have found that development of well-working, active coping strategies of parents with children with disabilities hinge on higher level of education, a better socio-economic situation and higher level of self-efficacy in the parent (Kurowska, Kozka and Majda 2021). Parents with less education, greater socio-economic stress and/or low self-efficacy might tend to give up more easily in difficult negotiations, potentially leading to different developmental trajectories of parental strategies and perhaps even different developmental opportunities for their children, although the present study cannot confirm this. More research is needed to investigate the developmental consequences of parents’ negotiation skills for their experience of parenthood and their children’s development. Another related aspect, also not investigated in this study, is how engagement in active negotiations and struggle for services might fuel parents’ feelings of empowerment, identification and community-feeling with other families in the same situations. In line with the critical disability approach, activism and fight for recognition and equal rights can be successful strategies for some disability minority groups (Chapman 2021) and might also be so for parents of children with disabilities.
Negative emotions dominate in the present study. The parents experienced the acute situation around the time of diagnosis as a difficult time of uncertainty and negative emotionality. In line with previous studies, this negative emotionality was to some extent alleviated by advice and support from professionals (Dickinson et al. 2022). The continuing presence of negative emotions such as feelings of frustration, stress and exhaustion were only indirectly related to the child’s disability, as the main causes were situations where the parents reckoned that their child was in need of a specific type of welfare service but had to struggle to secure it. Frustration ensured when the welfare system slowed them down or produced obstructions, for example by long response time or inflexible rules. Importantly, the welfare system and the professionals within it were not experienced as uniform, as it also encompassed professionals that were experienced as helpful allies both in relation to how to take good care of one’s child and in struggles for a welfare service. From this study’s fundings it was clear that parents’ negative emotions cannot be understood solely as intrafamilial or intrapsychic phenomena.
This study suggests that parenthood when the child has a disability is different from typical parenthood. Parents of children with CP and possibly also other types of disabilities develop extraordinary skills in response to their social situation. The job as parents of children with disability is much more complex than identification and removal of impairment-related barriers. Firstly, because the situation that needs to be addressed is not the child’s impairments in themselves, but situations of mismatch (Bøttcher and Dammeyer 2016). Secondly, the task is not only to compensate here-and-now, but to create future developmental opportunities for the child. And thirdly, the space of negotiation of each social and educational service develops dialectically in a continuation of previous negotiations, with conflicts, solutions and compromises, as mirrored in the development of parental motives and strategies in this study. The recurring mismatches and the encounters with the welfare system force the parents to develop into tough advocates and negotiators. This is a paradox as the aim of the welfare state is to remove any burden and inequality for families with children with disability, while at the same time creating new ones. From the parental perspective, the current organization of the Danish social welfare system is afflicted by requests for documentation, lack of specialized knowledge and complex sets of regulations for when one is eligible for social services, altogether making it difficult to get the services they are entitled to. This situation creates gaps between rights and what is actually offered, and in response, parents end up devoting much time and energy to an ongoing struggle with social workers who function as gatekeepers to social services.
The contested space of negotiation and the parental strategies in relation to the social welfare system point to a central shortfall in the universal welfare model: The practice of compensating specific impairments or barriers overlooks that disability develops from a dialectical opposition between the child’s impairments and the socio-cultural situations of development over time. The task of the welfare state is rather to manage the complexity of changing mismatches for the individual child and the parents as active agents managing the mismatches. Without an understanding of the dynamic nature of a disability and the family situation as a whole, the welfare state system risks to respond to citizens with disability in a restricted, non-dynamic manner by treating disability as a list of barriers and rights solved with specific aids and services.
Strengths and limitations
This study investigated the early childhood period only. As children move through school and toward adulthood, they and their parents may encounter new types of mismatches and struggles with the welfare system that call for development of yet new strategies.
The study had equal participation of mothers and fathers. While the present analysis did not focus on similarities and differences between mothers and fathers, we consider the inclusion of both perspectives a strength, as previous research mainly or only included mothers.
The study was subject to a selection bias as the participants in the study were all recruited among self-enrolled participants in the Elsass course aimed at parents whose children with CP might not fit with mainstream schooling. Thus, parents of children with severe or mild CP were not included. The recruitment might also have biased the study toward resourceful parents with more active strategies, for example reflected in participation in the Elsass course.
Conclusions and Recommendations for Future Research
The study has shown the complex task encountered by parents at the intersection between the welfare system and support of one’s child with disability. Parenthood and the consequences of having a child with a disability hinge on the parents’ ability to learn to manage the mismatch between the needs of the child and the specific social conditions shaped by social welfare society. The need to learn to master an extensive, complicated set of legal rights in negotiations with the social welfare service system will likely favor children whose parents are able to struggle for their rights. There is a need for more research on how to ensure equal opportunities for all parents and children.
Furthermore, the study raised the question of whether there is an inherent contradiction in the dual nature of the welfare system. The aim of the welfare system is to remove social barriers and ensure equal participation, but in practice parents and case workers both become caught up in a bio-medical thinking as seen in the struggles about documentation of specific impairments. The consequence is that the welfare system at times is experienced as disabling rather than enabling and miss a productive cooperation with parents to overcome the complex developmental mismatches for children with disabilities. A question for future research is how the relation between the universal welfare state and the individual can become empowering, productive and efficiently supporting people with disability. This might include a more complex understanding of parents’ involvement and the formation of motives and service needs.
Competing Interests
The authors have no competing interests to declare.
Author Contributions
The two authors have contributed equally in the study and in writing the article.