Abstract
Summary
The study explored how chronic sorrow in parents of disabled children impacts everyday interactions between parents and professionals in caregiving contexts. Chronic sorrow, characterized by ongoing feelings of grief and loss in parents, related to their child's disability, is increasingly recognized as having an influence on the relationship between professionals and parents. However, there is a lack of in-depth understanding of how chronic sorrow shapes dynamics in the parent–professional relationship. Through participatory action research, we explored the perspectives on chronic sorrow that parents and professionals brought into communication, ultimately leading to mutual understanding.
Findings
The study uncovered mutual misinterpretations and unrecognized vulnerabilities. Parents felt that their parental position and their history of previous losses with their children were not acknowledged. Conversely, professionals felt undervalued in their professional caretaking role. The analysis indicated that the professionals’ problem solving and action-oriented approaches hindered understanding and connection, preventing them from exploring what lies beneath the surface of the parents’ responses.
Applications
Professionals must consider the unique parental position and become more attuned to how chronic sorrow shapes parents’ reactions. The study's participatory approach can serve as an example of how to collectively explore parents’ and professionals’ perspectives on chronic sorrow and foster mutual understanding.
The majority of parents with disabled and chronically ill children experience chronic sorrow (Batchelor, 2017; Batchelor & Duke, 2019). Chronic sorrow is the result of ongoing loss experiences related to the disability or illness of the child. The concept of chronic sorrow was first introduced by Olshansky (1962), who pointed out that it is a natural reaction to an abnormal situation. While parents may come to terms with the reality of the illness or disability of their child, they may still experience sorrow in periodic cycles that can be triggered by new events, such as witnessing developmental milestones in other children. The losses can be experienced around the child's developmental milestones and future perspective but also in areas of the parents’ lives, for example, because the level of care needed prevents them from having the job they aspired to, the holidays they were looking forward to (Green & Edwards, 2023), and the family life and the parenthood they had envisioned (Raap et al., 2024). The intensity of the sorrow varies over time depending on many factors, like the degree of trauma involved, whether the impairments are progressive, prior losses in parents, and the severity of daily stressors (Roos, 2018). Chronic sorrow can be permanent, cyclic, and potentially progressive (Gordon, 2009; Roos, 2018).
Although all parents experience parenting stress to some degree, mental health, behavioral, physical, and developmental needs in children add another layer of burden and challenges, resulting in more severe parental stress (Neece & Chan, 2017). Sources of parenting stress include role overload and role captivity, where parents feel trapped by caregiving and parenting responsibilities (Zeng et al., 2023). In addition, parents must contend with chronic sorrow. It is well known that dealing with sorrow requires constant energy (Guldin & Leget, 2024). However, parents of disabled children need to devote all their energy to care for their children. There is often simply no time and space to grieve. Moreover, parents must process these emotions within the context of their ongoing relationship with their disabled child. Unlike grieving a deceased loved one, which allows for eventual adaptation to a new reality, parents of disabled children must maintain a sense of connection to continue caregiving and ensure their child feels loved (Roos, 2018).
Having a child with a disability or a chronic health condition is associated with lower levels of parent need satisfaction (McConnell et al., 2013). While the understanding of the support needs of families with a child with (intellectual and multiple) disabilities is growing, it is still sparse and fragmented (Lahaije et al., 2023). Around chronic sorrow, support suggestions to care workers are often general, such as being empathic, sensitive, respectful, nonjudgmental, patient, and compassionate (Coughlin & Sethares, 2017; Gordon, 2009; Hainsworth et al., 1994). Emphasis is also placed on allowing parents to vent sadness and vulnerability, give positive feedback (Damrosch & Perry, 1989), and recognize parents’ need for respite from caregiving responsibilities (Coughlin & Sethares, 2017). Parents’ optimism about their children's potential should not be dismissed as unrealistic or misguided (Bettle & Latimer, 2009; Kearney & Griffin, 2001). Professionals need to normalize feelings of grief and loss (Fernández-Ávalos et al., 2021; Roos, 2018), understand chronic sorrow and its triggers (Green & Edwards, 2023), and practice good conversation skills, including active listening and sensitivity (Eakes et al., 1998). Notwithstanding these support suggestions, unfortunately, parents of disabled children often lack emotional support (Bowes et al., 2009; Jansen et al., 2017), and the impact of chronic sorrow in their lives is still overlooked (Green & Edwards, 2023).
Given the limited understanding of the impact of chronic sorrow, the question that needs further exploration is how chronic sorrow manifests itself between parents and professionals in daily care practice. Insufficient exploration has been conducted regarding the perspectives parents and professionals bring into communication and how these perspectives shape the communication patterns and outcomes in the parent–professional relationship in everyday interactions. Perspectives informed by factors such as history, contextual expectations, desires, and emotions. The current emphasis on professionals’ attitudes and conversational skills inadequately reveals the complex genesis of these dynamics. This leaves us with an overly generic knowledge base on the topic of parental support. This study seeks to address this lacuna by examining in much more detail the dynamics of chronic sorrow in everyday communications between parents and professionals in multiple settings for disabled children. The study features the perspectives from a variety of professional disciplines, ranging from social workers and pedagogues to institutional care workers. The social workers who participated in the study either provided in-home parenting support or worked in group settings with children, thereby having indirect contact with parents. Although the study does not focus exclusively on social workers, it is highly relevant to their field. It helps to rethink parent–professional relationships, supporting social workers in promoting social change, cohesion, and empowerment (IFSW, 2014).
To understand our data, we employed Benjamin's (2002, 2011, 2018) recognition theory. Psychoanalyst Benjamin designed a theory of a process of intersubjective recognition between parties/persons. She used a conceptual framework of the “Third,” which is a mutually created space beyond the split in the complementary “doer” and “done to.” The framework acknowledges that each individual and group starts from a different lived experience of political and social realities. It helps to examine the dynamics of parent–professionals encounters in detail, using concepts like recognition and its breakdown, acknowledgment and its denial, vulnerability, shame, and repair (Benjamin, 2018; O’Conner, 2020). The concept allows for reflection on the origin of emotions and how they intertwine, leaving space for a sense of connectedness to each other's mind while accepting the other's separateness and difference.
We anticipate that more in-depth professional understanding of the dynamics at play will improve communication between parents and professionals within caregiving contexts, thereby improving support.
Method
Design
We employed participatory action research (PAR) as a research methodology. PAR is a collaborative approach that involves collective learning on a shared problem and the collaborative production of knowledge within a community (Dedding et al., 2022). It is designed to bring about social change within the local context by actively involving the participants in the research process (Abma et al., 2019; Dedding et al., 2021; International Collaboration for Participatory Health Research [ICPHR], 2013). PAR studies aim to capture the intricate nature of the daily reality experienced by the individuals involved (Chambers, 1998; Ioannidis et al., 2014), making it a suitable approach for our study on chronic sorrow in parent–professional relationships. According to the principles of PAR, we brought together participants involved in a shared problem. We took a dual approach by forming a research group that included both parents and professionals. Additionally, we organized mixed focus group sessions to facilitate dialogue between parents and professionals. We will first provide information on the research group and then proceed to discuss the research.
The research team was initiated by the head researcher (Edith Raap), who, through her work as a social work lecturer on parenthood, has close connections with parents with a disabled child as well as with care workers. The research team consisted of herself, two social workers who specialize in working with children with disabilities, and their parents and two mothers with a child with severe disabilities who had expressed their interest in chronic sorrow and had the willingness and time to participate in research. This research group collaborated throughout the study, for example, formulating research questions, conducting interviews in a prestudy, facilitating focus groups, and collectively reflecting on the data and analysis. In the aforementioned prestudy, we interviewed six parents with severely disabled children about their experiences of chronic sorrow. The underlying study involved working with groups of parents and care professionals in a major care organization in the central-western part of the Netherlands. When we started working with focus groups of parents and professionals from the care organization, the initial research group was expanded to include a care professional from the organization and a mother whose child resides in one of the organization's facilities, strengthening the link with the organization where the research took place.
Our research involved two 3-hr sessions in homogeneous groups consisting of parents and professionals and three 3-hr sessions in mixed groups. We deliberately worked in small groups (n = 5 or 6) to foster a sense of safety and shared ownership and to facilitate in-depth discussions.
We used quotes from the prestudy as a starting point to explore parental and professional perspectives in the focus groups. Here are some example quotes: “This is a world that many people do not understand, and I am stuck in it without having asked for it.” “The loss is a kind of monster that occasionally rears its head…yes, sometimes it comes forward to fight with you.” “He has a high cuddle factor, so I can only hope it stays that way, and then the future won't be so scary.”
The quotes were printed on small, plasticized cards, each assigned a distinct color corresponding to a specific theme. Participants were encouraged to freely write their initial impressions and associations on individualized Post-it notes, attaching them to quotes that resonated positively or negatively. These reactions served as discussion prompts. In the mixed group sessions, rather than relying on quotes from earlier interviews, we drew upon real-life examples that had arisen during the focus group sessions with either the professionals or the parents (situation sketches in Table 1). By doing this, we set out to explore chronic sorrow's implications in everyday practice and to avoid generalizations about chronic sorrow.
Situation Sketches.
The groups’ sessions were taped and transcribed. Afterwards, the research group members reflected on each session verbally and in writing. The data consisting of the discussions in the focus group sessions, the reflections of the research team, and the texts on the Post-its were used in the analysis, in which the head researcher took the lead. The head researcher presented the iterative analysis at different stages to the research group for validation and to elicit new questions.
Participants
The care organization assisted in recruiting parents and professionals willing to talk about chronic sorrow through newsletters, email, and word of mouth. The care organization is substantial, employing 3,200 individuals and serving 5,400 clients. The parents and professionals who participated in the study were not previously acquainted. The organization allowed the care workers to be present during working hours. Focus groups were formed consisting of (1) parents with severely disabled or chronically ill children (n = 5; Table 2) and (2) care workers who worked both with parents and their disabled/chronically ill children (n = 5; Table 3). The parents and professionals gave written informed consent for information to be published after being provided with verbal and written information regarding the aim and design of the study. In the session reports, parents and professionals were given pseudonyms. A week after the session, a research team member contacted the parents to inquire about their experiences and their perceptions of safety within the group.
Parents in the Study.
Professionals in the Study.
Findings
In this section, we will first examine the parents’ perspectives on chronic sorrow, encompassing their values, goals, and desires, followed by the professionals’ perspectives. Subsequently, we will explore how these perspectives intersected when parents and professionals discussed real-life care scenarios. We were curious how chronic sorrow played a part in these examples and whether professionals recognized it. Mutual misinterpretations and vulnerabilities were revealed. We conclude this section by describing how greater understanding occurred through dialogue.
Perspectives of Parents on Chronic Sorrow
In the group sessions with parents only, the parents displayed remarkable openness in sharing their experiences of chronic sorrow and offered mutual support. It became apparent how chronic sorrow impacted them. We identified four key themes in the sessions: (1) never entirely understood; (2) undesired reliance on others; (3) brokenness and pain; and (4) desperation, being trapped, failure, and guilt.
This section will explore these themes more deeply to help readers grasp their essence.
“They Can Come Far, But…”: Never Entirely Understood
The parents felt that professionals, relatives, friends, and even they themselves often struggle to fully grasp the profound impact of raising a child with a disability. Despite occasional attempts, there remained a sense that the total weight of their responsibility eludes comprehension. For example, Karin expressed: “They can come far, but they never experience the responsibility the way I do (…). That you are in it 24/7.” Daisy noticed a tendency in others to downplay the challenges faced by parents of children with disabilities. Conversations often veered toward a positive outlook, perhaps to avoid painful confrontations. Even among parents who have a disabled child, Daisy encountered positivity, which she understood as a coping strategy when “numerous paths in life become blocked.” However, Daisy, Tom, and Nancy also acknowledged an internal tendency to downplay and “diminish” their situation when interacting with others. They recognized their need to appear “normal.” However, this desire to appear “normal” was unmet, causing chronic sorrow. Daisy illustrated this by recounting a seemingly “normal” family holiday photo, which, upon closer examination, revealed, “when it looks normal, it is staged.” The parents grappled with the complexities of self-presentation, seeking both a sense of belonging to “normal life” and acknowledgment of the weight of their situation by those around them.
Additionally, they felt that both they and their disabled children were not fully seen or acknowledged. Daisy drew a poignant contrast between the visibility of her abled daughter and the invisibility of her disabled son. During their daughter's battle with cancer, people “came running” to offer assistance. However, when it came to her disabled son, the response was remarkably different. Daisy observed, “When it comes to a child with a disability, you always have to be the one to take the lead.” She attributed this difference to societal categorization. Their daughter, with cancer, fell into the category of “children with potential.” In contrast, their disabled son remained “speechless,” often overlooked by others. This realization caused grief and fueled Daisy's determination to become an unwavering “advocate” for her child.
“You Do Need Them Badly.” Undesired Reliance on Others
Parents grappled with their reliance on others. Nancy succinctly captured this sentiment: “You do need them badly.” Karin gave a painful example: when visiting her son at the institution, even a simple walk together with him was not an option because he might become aggressive toward her. She reflected, “Because I would get beaten up then. I thought: I cannot do that with him anymore either … I need care professionals for that too.” Her words reflect the sadness of being dependent on others in these seemingly simple parental activities. The conflicting emotions arising from this dependency on others were evident. Dorothee expressed that she wanted care professionals: “All out. Everybody.” However, Daisy's response, “Yes: hate, love” encapsulated the complexity of the delicate balance between the push-pull of needing assistance and wanting to be independent as parents.
“That Keeps Hurting.” Brokenness and Pain
Family life did not unfold as expected. Daisy grappled with a sense of “brokenness” because she could not fully experience family togetherness. Despite outward appearances, the reality was different. During family outings—like going out for ice cream—she felt the absence of completeness: “Everybody sees you as a kind of yuppie family, but one is missing.” This disconnect caused sorrow, resulting in “a continuous detachment from life.”
Karin also faced losses in her envisioned family life. Simple pleasures, like sitting on the beach, eluded her due to constant vigilance for her son. “That keeps hurting. I would have wanted that too.” Missed milestones triggered pain. Daisy's pain was additionally triggered: “because of all the milestones you experience with your other kids.” For Tom, the pain manifested itself as “physical pain,” an embodied experience recognized by Daisy: “It was etched into myself.” Karin's sense of disruption and brokenness was both metaphorical and literal. Trauma lingered from the days when everything was torn apart by her son, leaving her vulnerable. “I bought a book once, and I was so happy with it, and it was completely ripped up.” Even now, a minor break triggered a return to that place of vulnerability: “You are right back there.” The parents’ stories were accounts of shattered dreams.
“It Completely Messed Me Up.” Desperation, Being Trapped, Failure, and Guilt
The parents often expressed a lack of reciprocity in their relationship with their children and struggled to comprehend their children fully. It caused Tom feelings of “desperation, frustration, but also sadness” and “a kind of hopelessness” due to the limitations affecting his child's progress. Dismissing the idea of “small steps,” he humorously said: “Well, I don’t see any small steps at all.” With the remark, he skeptically questioned the professionals’ advice for parents to focus on the small steps of their child. A skepticism which was acknowledged by the shared laughter of the other parents. Daisy admitted a lack of control because sometimes progress stalled due to her child's uncooperativeness: “You can stand on your head, but you won’t take it one step further.” The parents felt tethered to their children, making it impossible to avoid these emotions, as Tom expressed: “Being tied to your child, from whom you can never escape.” Dorothee described the sense of powerlessness as having “completely messed me up.” The lack of control over their child's progress caused them grief.
This did not stop parents from trying. However, despite their best efforts, the parents grappled with self-blame and feelings of failure. Poorly aligned advice from practitioners exacerbated their sense of incompetence as a parent. Karin was advised by practitioners not to put her son in a bath after he had smeared poop on the walls, since this would serve as a reward. She found this impractical: “Can you imagine that? I have B. (her son) in the room, and I’m simultaneously cleaning the wall with a washcloth.” Daisy felt guilty about leaving her son out on family outings, feeling, “Is this okay? Will they take good care of him? Will they put on his socks correctly?” Dorothee, too, “felt guilt” each time she took her children to respite care. Karin grappled with guilt when exhaustion prevented her from visiting her son in residential care. She reflected, “Even that one time a week, I can’t summon the energy. It feels like a weakness.”
The narratives reveal the painful complexity of chronic sorrow experienced by the parents, centering around not being able to be the parent they had envisioned being. Now, let us explore professionals’ perspectives on chronic sorrow.
Perspectives of Professionals on Chronic Sorrow
In contrast with the parents who felt free to speak their minds, the professionals were cautious. They felt “paralyzed” by the often emotional quotes of parents used as conversation starters. As Audrey said, “This is so overwhelmingly big!” In their responses, they struggled, as Lea said, “to find the right words,” displaying a sense of uncertainty. Willow wondered several times, “Am I saying something odd?”
Three themes stood out in the professionals’ sessions: (1) Personal emotions versus the interpretation of professionalism, (2) Feeling misunderstood by parents and (3) The tendency to seek solutions and work hard for approval.
“How Far Can You Show Your Emotional Reaction?” Personal Emotions Versus the Interpretation of Professionalism
When faced with expressions of sorrow, anger, and desperation in the quotes from parents, professionals appeared uncertain about the appropriate “professional” response.
“It Is Never Good Enough.” Feeling Misunderstood by Parents
Professionals felt their good intentions were often not recognized and sometimes described parents’ reactions as overly demanding. Ruby said, “I miss the understanding from parents sometimes. It is never good enough.” Willow recounted an incident where she wished a father a pleasant weekend when he came to pick up his son. The father angrily replied that their weekend would be “unpleasant” (his child had extreme behavioral problems) and asked her to refrain from making such comments in the future. Her well-meant wish was not understood correctly, making her cautious and uncertain. The professionals explained what they saw as overdemanding behavior in parents as stemming from a lack of awareness of professional boundaries. Willow mentioned a couple who wanted her to learn Arabic to communicate with their son, to which she responded, “I want to do as much as I can, but learning Arabic is not my job.” Audrey felt it was “annoying that people do not see how care works nowadays.” Overdemanding behavior was also explained as a misguided focus in parents on what could still be achieved. According to Willow, parents should focus more on “what has been achieved. What is not yet achieved will follow.” The professionals perceived parents’ misconceptions about their children's capabilities as a reason for “unrealistic” demands and struggled with how to respond to this. They felt compelled to shield parents from “continuous disappointment” regarding their child's abilities. Willow did not want “parents to have false hope,” fearing they would “get stuck in it.”
At the same time, when they related remarks to their personal experience as parents, several professionals could understand parents’ “demanding” attitude. They could then interpret parents’ reactions as attempts to secure the best possible care. Lea remarked, “As a parent, I too would think: Not possible? Come on. Try harder!” This switch in perspective, leading to more empathy, was also seen during the second professional group session when the professionals were asked to share a symbol of chronic sorrow. Four out of five professionals brought a picture of their parent who either had (had) Dementia, Parkinson's, or Acquired Brain Injury. Willow said: “WE were that annoying family (…). I was never satisfied with the quality of care, although I admired the work of the nurses.” Professionals often perceived parents’ reactions as being driven by unrealistic expectations rather than by hidden or masked sorrow. However, when they considered the parents’ perspective, drawing from their own experiences as parents or family members, they felt more compassionate. This feeling led Lea to often choose “to say nothing” when faced with “unrealistic expectations”: “There is already so much for them to deal with.”
“I Have to Prove Myself.” The Tendency to Seek Solutions and Work Hard for Approval
In response to parents’ demands, the professionals felt compelled to demonstrate their expertise. Ruby: “I have to prove myself. I have to know everything.” There was a constant underlying urge to work hard for parental approval. To achieve this, professionals tended to “explain things subtly, but clearly.” The professionals addressed the demands of parents by providing more information about the child's development. They referred parents to higher management or set boundaries. Professionals often viewed parents’ “unrealistic demands” as obstacles to achieving the goals set for the child and family. Ruby recounted that “I had something in mind, and you want to go for that, but it doesn’t seem possible because they (the parents) have their own backpack and their own emotions.” In navigating the delicate relationship with parents, the professionals felt trust was closely tied to the child's well-being. Ruby noted, “Every time there is a disappointment, they (the parents) get insecure again, and the trust is gone.”
In the discussions about chronic sorrow, the professionals revealed being overwhelmed and uncertain about how to handle parents’ emotions. They felt that the parents’ misunderstandings of professional boundaries and misconceptions about their child's prospects led to unrealistic demands. In response, professionals focused on demonstrating their expertise and seeking solutions to improve the care for the child. Interestingly, they were not inclined to explore parents’ perspectives and emotions. We will return to this observation later.
Parents and Professionals in Dialogue: Mutual Misinterpretations
The next step was to bring professionals and parents together in mixed group sessions to explore the parent–professional dynamics. To avoid discussing chronic sorrow in general terms, we used practical examples of parent–professional encounters from earlier sessions. For the sake of brevity, we only describe one example here (see Table 1 for the examples). The example is about a parent who received their 6-year-old intellectually disabled child with autism home from respite care, dressed in clothes that did not belong to the child. The parent called the institution to complain. In the situation description presented to the professionals in the focus group, we added that a crisis had occurred in the respite care group. Just after the crisis, the professionals in the example received a phone call from this parent. The parents and the professionals were asked separately to create posters expressing their thoughts and feelings related to the example, exploring its connection to chronic sorrow. Subsequently, in a plenary setting, we invited the parents and professionals to respond to each other's posters. We will first discuss the professionals’ response, followed by the parents’ response, and then explore what happened when the two groups were confronted with each other's responses.
“What Is This All About?” Professionals' Response
The professionals, imagining themselves in the position of those in the example, primarily felt: “What is this all about?” and “Sorry, but this is not the most important thing now. We stabilized the group, and then someone starts complaining about clothes.” They were frustrated that some parents “are really super focused on these clothes. Expensive clothes,” even though the children often tore them. They felt annoyed that the parents did not recognize they, too, cared about the child's appearance and felt their genuine concern went unnoticed. In response to the phone call, the professionals said they would “patiently listen and explain.” They also suggested practical solutions, such as using name stamps on children's clothing. Overall, they felt that parents’ expectations were “mega-big, almost limitless.” Interestingly, the professionals did not make a connection between this example and chronic sorrow.
“Is He Not Worth It?” Parents' Response
In response to the situation sketch, the parents—putting themselves in the shoes of the parents from the example—expressed, “It could have been worse. They could have neglected to change his diaper the entire day.” However, this example raised broader concerns: “It is a kind of signal though. Is he not worth it?” It caused parents to question the overall quality of care and attention their children received. According to parents, their children's vulnerability requires even greater care, including how they are dressed. One parent remarked, “Not only is he already entirely reliant on others, but he also has a stain on his clothes that no one seems to address.” They felt their children's clothing was tied to identity—reflecting parental preferences and their desire for their child to look their best among others. Parents felt that their efforts to ensure their child's physical comfort and express their identity through clothing were not taken seriously: “That is just—ft, thrown away.” They mentioned that they could cope with such incidents if there was enough compensation and attention in other areas: “Something extra, where things go very well in that aspect.” They unanimously agreed that if a parent reaches out to a professional about this matter, it must be of great significance, as they already felt they “moderate” their criticism. Nancy was cautious not to be perceived as a constant complainer by professionals who might think, “Oh, that's C.'s mother again: she always has something to complain about.” She even takes the staff shortage into account in her response: “We want the staff to stay, but we also don’t want it to come at the expense of the child's best interest.” This reveals an interesting dynamic in Nancy's thinking, interpreting how the professional interprets. However, there were also moments when Nancy deliberately adopted an “assertive” stance, recognizing that this would prompt professionals to prioritize her child's well-being. The parents described the sorrow associated with this practical scenario: it intensified their sense of loss regarding how they had envisioned themselves as parents—being able to care for their children personally—and a loss of parental efficacy. Dorothee expressed this to the professionals, “I am so reliant on you.” The parents experienced these losses as accumulative, as Daisy articulated: “When you are unable to express those emotions, the focus shifts toward meticulous attention to details, even though, in reality, it all boils down to sadness.”
Parents and Professionals in Dialogue: Stark Discomfort Followed by Mutual Recognition
When the groups came together to examine each other's reactions, it caused stark discomfort among everyone involved.
The parents felt their perspective was disregarded in the professionals’ response. They believed the complaint deserved more serious attention rather than being dismissed with a casual “Well, this can happen.” They sensed a reluctance in the professionals to “tell the whole story.” According to Tom, the lack of transparency about the incident led to ongoing speculation because “you sense something nonetheless (from the crisis, E.R.).” He added that it was “easier to deal with reality than fantasy.” For him, the professionals’ response led to a diminished sense of shared responsibility. He emphasized, “We should discuss its meaning for me. That's what I need, and it is your need, too. We are equal. I advocate for normalizing the relationship—not as ‘professional’ versus ‘parent,’ but as human beings discussing things.” Tom highlighted the value of a sincere question like “What is this all about?”—but with a different intention than the original question professionals asked themselves in response to the situation. The parents stressed the importance of genuine inquiry into how they experience situations. However, Daisy insisted that questions about her experiences should not become “mere checkboxes.” In response, some professionals wondered how much transparency parents could handle, believing this varied from one parent to another. Daisy acknowledged that she might not always have the emotional openness to discuss her feelings, as a form of self-protection. However, she noted that she could always schedule recovery time.
The parents’ reaction had a significant impact on the professionals. Through dialogue, they gained insight into how clothing can represent a child's identity for parents and how parental “criticism” might be an attempt to have that identity acknowledged. The conversation touched on important themes such as transparency, protection, and the need to recognize parents as individuals with their own psychological makeup. The professionals were now able to connect the example to chronic sorrow, recognizing that the parents’ responses might stem from feelings of loss. They reflected on their automatic impulse to find solutions and work harder to achieve better care for the child. Instead, they began to consider switching their focus—connecting with parents by asking about their experiences. They realized that avoiding exploration of the emotions behind parents’ reactions could hinder meaningful connection. During the dialogue, the parents recognized the professionals’ shared commitment to the child's well-being. They came to appreciate the professionals’ expertise and dedication more deeply. At one point, Daisy exclaimed, “Wow. You love my child too!” She spoke about how uncertain the professionals felt and emphasized they should not be afraid making mistakes. She stated, “You are our lifeline!” reframing her dependency positively now and no longer as a loss. When asked to elaborate what that meant in her relationship with professionals, she responded, “Much forgiveness!” The mutual insights were enlightening for both parties, leading to mutual recognition and repair in the parent–professional relationship.
Discussion
In our study, we first explored the perspectives of parents and professionals separately in relation to chronic sorrow. Their differing perspectives became apparent through their reactions to everyday practical situations. We applied Benjamin's theoretical framework to understand how breakdowns and repairs in communication occurred. Breakdowns were associated with mutual misinterpretations and vulnerabilities, while repairs involved recognizing and acknowledging each other's perspectives. After discussing these breakdowns and repairs, we will address the practical implications of this study, which are relevant for the broadly shared principles of clinical social work practice with parents.
The analysis reveals that professionals often face uncertainty about whether addressing parents’ emotions falls within their professional role and, if so, how to approach this task. Benjamin emphasized that understanding the other person's mind as “an equal source of intention and agency” (2018, p. 3) is crucial to establishing a connection. However, as noted by van der Pas (2003) and Weille (2011), the caregiving context often leads professionals to primarily view parents as objects, as instrumental to their child's well-being. This tendency to conceptualize parents primarily as funtional extensions of their child’s needs rather than as individuals with their own inner world, poses a significant obstacle to forming meaningful connections with parents. We argue that a breakdown occurs because the professionals fail to explore the parents’ emotions, including their sorrow, in response to the incident. To facilitate repair, the focus needs to shift from the child to the parent. However, the professionals primarily focused on finding solutions to improve the child's future care. While this is understandable, it hindered the exploration of parents’ perspectives and the deeper meaning behind their reactions.
To understand where the professionals missed the opportunity to connect with parents, let us turn to van der Pas’ (2003) theory on parenthood, specifically the concept of the parent as a subject. Van der Pas (2003) defines a parent as someone who has an ethical awareness of being responsible for their child. This awareness is unconditional and not limited in time, setting parents apart from professionals. Parents are “always parents,” even when they not directly raise their child, for example, when the child resides in an institution. In contrast, professionals are “passers-by.” Van der Pas (2007) emphasizes that parents of children with disabilities and of those living in institutions bear an even stronger awareness of being responsible. Despite their best intentions, parents inevitably find themselves falling short of their own expectations, leading to feelings of shame and guilt. Being a parent means putting oneself at stake for one's child—a reality that brings a deep sense of existential vulnerability (Raap et al., 2024; Wolbert, 2018; Wolbert et al., 2018) along with a strong need to maintain a sense of agency over the care for their child. Due to their children's invisibility, undervaluation, and vulnerability, parents’ urge to supervise and advocate for their children is amplified. However, the professionals did not fulfill the parents’ need for a sense of control over their child's care. While the parents sought acknowledgment of their child's identity and value through seemingly minor issues, such as clothing mix-ups, the professionals remained focused on improving care for the child. Rather than sharing responsibility for care, they offered preventive advice and shielded parents from crisis-related news.
Having to rely on professionals in their parenting journey led to a profound sense of grief in parents. Statements such as “It all boils down to sadness” encapsulated these feelings. Unfortunately, the professionals did not interpret the parents’ reactions as expressions of inner pain. They found it difficult to connect parents’ chronic sorrow to the practical example. A deeper understanding of the emotional impact of chronic sorrow on parents—and greater sensitivity to what might trigger chronic sorrow—could have helped professionals view the parents’ reactions not as criticism or misconceptions but as a cry for understanding and support. However, this may be challenging for professionals. This is not only because our culture tends to avoid these feelings of pain and loss but also because professionals risk encountering the pain of losses in their personal lives (van Heijst, 2005).
Uncertainty about how to respond to care receivers’ emotions—balancing sensitivity and openness—adds to professional stress (Stenbock-Hult & Sarvimäki, 2011). This stress is intensified by organizational and political pressures like cutbacks and administrative burdens (Klooster & Hermans, 2008; Kristoffersen et al., 2016). In such a climate, meaningful engagement with parents and a deeper understanding of their responses becomes increasingly difficult. Coughlin and Sethares (2017) highlight the need for research into healthcare providers’ experiences with parents under pressure, urgency, and crisis conditions. Such conditions are increasingly common amid staff shortages (Baur et al., 2017; Rosa, 2015). Understanding parents is already a complex task for professionals. Organizational structures characterized by for example time pressure and administrative demands, do not appear to support this understanding. On the contrary, they may hinder professionals from engaging meaningfully with parents’ emotional experiences. This opens up avenues for future research into how organizational structures influence professionals’ ability to recognize and respond to parents’ chronic sorrow.
Breakdowns in the professional–parent relationship were also linked to professionals not feeling acknowledged for their expertise. Care professionals seek recognition for their expertise and for their commitment to supporting others (cf. van Heijst, 2005). However, Baur et al.'s (2017) study on stress in healthcare professionals highlight feelings of being undervalued and of experiencing excessive responsibility and exhaustion due to impossible demands. Being confronted with parental demands often leads professionals to shift responsibility upwards (Weille, 2011), a dynamic also observed in our findings.
Furthermore, our research revealed that professionals held assumptions about professionalism that were not informed by an adequately deep understanding of parenthood, hindering their ability to communicate effectively with parents. These assumptions included avoiding emotional expressions, positioning themselves as expert on the child's behavior and development, focusing on finding solutions, and feeling the need to know everything.
A more parent-centered approach, where professionals are willing to explore and openly discuss parents’ perspectives rather than focusing on solutions, may foster better understanding and prevent the loss of connection between parents and professionals. Sharing perspectives and engaging in reciprocal self-disclosure may strengthen the parent–professional relationship. However, it is important to stress that the responsibility to initiate dialogue and support parents in their vulnerability lies with the professionals, as parents cannot be expected to fully empathize with professionals (Dijke et al., 2020). In turn, it is essential to recognize that professionals also need support—support that should be provided by their organization. This includes offering training, facilitating collaboration with parents, and familiarizing professionals with the theory of chronic sorrow.
There is a commonality: both parents and professionals need recognition of their unique form of responsibility/awareness of being responsible, along with the feeling of competence in fulfilling their respective responsibilities.
Limitations of the Study
We contacted the parents regarding the emotional impact of the group sessions and referral requirements. It was only during this study that we fully grasped that the professionals, too, experienced vulnerability, albeit in a different way. Future studies should devote more attention to and space for professionals’ vulnerability.
While the study provides insights into parent–professional dynamics, it focused on a specific group. The professionals had a personal emotional connection, and the parents felt engaged and had the emotional space to discuss their experiences. Future research should include a broader range of perspectives, including those of fathers, to deepen the understanding of the parent-professional interplay in the context of chronic sorrow.
Conclusions
Our study explored how chronic sorrow influences daily interactions between parents and professionals. Professionals missed opportunities to connect by misinterpreting parents’ “masked” or hidden sorrow as criticism or unrealistic expectations. Disconnection between the professionals and the parents can be attributed to a lack of professional acknowledgment of the particular position parents entail as well as a lack of recognition and affirmation of chronic sorrow. Our research highlights the need for professionals to familiarize themselves with parents’ perspectives. By doing so, they gain insight into how chronic sorrow manifests, enabling them to address these feelings. The study also revealed that professionals are vulnerable themselves and need support from their organizations. The process of repair involved acknowledging shared intentions and fostering a more equitable relationship, ultimately restoring a positive self-image for both parents and professionals.
Implications for Care
Both parents and professionals expressed a strong desire for more frequent dialogue around practical examples. Such conversations can help professionals become more sensitive to how the unique parental position and chronic sorrow manifest themselves in everyday situations. This approach may lead to a deeper mutual understanding, strengthen trust in the relationship and ultimately result in better care.
Footnotes
Acknowledgements
I am truly grateful to the parents and professionals who so generously gave their time and shared their thoughtful insights. I also want to give a warm and sincere thank you to Minke Verdonk, Leontien Sauerwein, Yvonne Kok, Sofie van de Wetering, Nicolette Quak, and Linda van Vliet from the research team for their collaboration, dedication, and support.
Ethical Approval
Authors’ Contributions
ER conceptualized the study, gathered and analyzed the data and drafted the manuscript. KLW contributed to the analysis and to critical revisions of the manuscript. CD provided critical revisions and supervised the research process. All authors reviewed and approved the final manuscript..
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Declarations of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.