Perceptions of Conflict with Service Providers Among Parents of Young Adults with Complex Support Needs

Abstract

Parental advocacy is important to ensure that individuals with complex support needs (CSN) receive appropriate support. However, parents and service providers may not always agree, resulting in a risk of negative advocacy experiences and potential conflict. Currently, knowledge about how parents perceive and understand these situations is sparse. In this qualitative study conducted in Norway, eight parents of young adults with CSN who had experienced conflict with their child’s service providers were interviewed about their perceptions of the conflict, its development and consequences. Using Interpretative Phenomenological Analysis, five themes were identified, two reflecting perceptions of the development of the conflict, and three reflecting the impact of the conflict during and following its occurrence. Conflict was perceived to develop despite the participants’ efforts to facilitate collaboration, leaving them feeling terrified, distressed, powerless, and alone. These findings highlight the importance of reducing the risk of conflict between parents and service providers, and suggest that developing a shared understanding of an individual’s support needs may be a helpful strategy to facilitate collaboration. Given its importance for individuals with CSN, more research is needed to understand how professionals can make use of parental expertise, including knowledge-based models for relating to parental advocacy.

Parental advocacy appears to be essential to ensure that people with complex support needs (CSN) are provided with the appropriate services and support (Boshoff et al., 2016; Lee et al., 2022), and is seen as integral to the role of being a parent to a child with a disability (Brolan et al., 2012). Advocacy efforts typically continue into the child’s adulthood (Brolan et al., 2012), with parents reporting that they feel responsible for ensuring the extent and quality of their child’s support services (Cuskelly, 2006). Parents have reported that advocating for their children is stressful (Rios et al., 2021), and Burke et al. (2022) have called for studies examining the effect of advocacy on parental well-being.

Parental advocacy does not always lead to the parents’ desired outcomes in terms of the extent, quality, and organization of support (Cuskelly, 2006; Rehm et al., 2013). Krishnan (2024) found that parents advocating for support strategies that were considered unfavorable by professionals were viewed as “unreasonable, difficult, interfering, litigious” (p. 6). Notably, negative advocacy experiences do not seem to diminish parents’ advocacy efforts (Burke et al., 2022) and may even contribute to increasing such efforts (Burke & Hodapp, 2016). Thus, there is a risk that disagreements between parents and service providers may devolve into conflict, but knowledge about how parents experience such conflict is limited.

The risk of conflict may vary for different development periods, as well as with child, family, and service provider characteristics. A high degree of complexity may challenge service providers (Ineland et al., 2018), as they may be insufficiently equipped to meet the individual’s concurrent needs across different domains (Dew et al., 2019). As for specific child characteristics, co-occurring mental health difficulties are common in people with CSN (Halvorsen et al., 2024), and may involve an increased risk of conflict. These difficulties may be misinterpreted and remain unrecognized (Halvorsen et al., 2024; Mirzaian et al., 2024), and there may be a lack of relevant service provider knowledge (Mirzaian et al., 2024), leading to uncertainties with regard to the appropriate approach to provision of support. As for specific development periods, the transition to adulthood appears likely to be associated with increased risk of conflict. This transition is often challenging for individuals with CSN and their families (Codd & Hewitt, 2021; Fiske & Austin, 2022; Oakes & Douglass, 2023), involving a shift in the organization and provision of health and support services across multiple domains (Codd & Hewitt, 2021; Fiske & Austin, 2022; Mirzaian et al., 2024). For example, the change from pediatric to adult health services may involve changed advocacy needs, requiring parents to navigate systems they may be unfamiliar with (Mirzaian et al., 2024). Moreover, services such as residential care constitute a shift in the organization and provision of support, requiring the family to adapt to new roles and a changed family dynamic (Codd & Hewitt, 2021; Fiske & Austin, 2022).

When a person with CSN moves from the family home into residential care, it is often necessary to change and adapt support strategies (Ineland et al., 2018; McBrien & Candy, 2012; Ryan et al., 2021). This process is likely to involve several sources of potential conflict. Many parents have spent the child’s lifetime developing individualized support strategies (Cuskelly, 2006; Fiske & Austin, 2022) and may become frustrated if their expertise is not recognized (Llewellyn et al., 2004). Professionals may use formal language relating to their professional expertise, while parents’ language concerning their child may be more informal (Case, 2001; McBrien & Candy, 2012), potentially involving a risk of miscommunication and misunderstanding. There may also be a power asymmetry between parents and service providers regarding decisions about how support is provided (Case, 2001), and parents are more likely to be emotionally invested in the process and its outcomes (Brolan et al., 2012; Codd & Hewitt, 2021; Fiske & Austin, 2022). If these potential challenges to a good working relationship between parents and professionals devolve into a conflict, this may in turn affect the quality of services by making communication less effective and taking focus away from the adaptation of support strategies. Thus, understanding conflict between parents and professionals, including potential measures to reduce the risk of conflict in these relationships, is important to ensure the quality of services for people with CSN.

In Norway, services for people with CSN are organized and provided within the public welfare system. People with CSN typically move out of the family home as young adults and are provided support services in group homes or similar (Norwegian Directorate of Health, 2021). These are typically organized with a focus on living as independently as possible, with residents having their own flat. The local municipalities own the group homes, fund the services, and employ the staff. The municipalities are also responsible for determining the extent of support needs and ensuring the quality of the services (Norwegian Directorate of Health, 2021). It has been suggested that these conflicting roles may lead service administrators to serve as gatekeepers rather than facilitators (Ellingsen, 2023), indicating that the power asymmetry between parents and service providers may be particularly pronounced in the Norwegian system. Moreover, the municipalities vary considerably in size and population. If a municipality has limited previous experience of a specific combination of support needs, parental knowledge and expertise may exceed that of the service providers, highlighting the importance of parental knowledge.

In the current study, we aim to explore how parents perceive negative advocacy experiences and consequent conflict with services, as well as the perceived impact of conflict and how these parents make sense of their lived experience in such situations:

1. Following negative advocacy experiences, how do parents of young adults with CSN perceive the development of conflict with service providers?

2. How do parents of young adults with CSN describe the impact of the conflicts that occur within service provision?

Method

Design

The study was designed as a qualitative interview study with parents who had experienced conflict with service providers, guided by Interpretative Phenomenological Analysis (IPA; Smith et al., 2009). IPA is a widely applicable research methodology, focusing on how individuals understand and make sense of their lived experience (Smith, 2017). It is not just a tool for analysis; IPA informs study design, data collection, analyses, and interpretation, and provides guidelines for reporting (Smith, 2011, 2017; Smith et al., 2009). IPA assumes that people are inherently self-reflective with regard to their own lived experiences, with the researcher engaged in a double hermeneutic process of “trying to make sense of the participant trying to make sense of their personal and social world” (Smith, 2004, p. 40). The participants’ experiences were assumed to vary, because parents living in different municipalities who had children with different combinations of support needs would be recruited, and the idiographic aspect of IPA allows for more in-depth exploration of the individual participant’s accounts.

Participants

Volunteer participants were recruited through strategic sampling (Smith et al., 2009) from the parents of young adults who had been referred to a specialized mental health department for people with intellectual disability, because CSN including mental health difficulties in young adults was postulated to involve several potential sources of conflict. The inclusion criteria included being the parent of a young autistic adult with co-occurring intellectual disability and CSN, and having experiences involving conflict with service providers. CSN were operationalized as being diagnosed with at least two different co-occurring additional disorders/disabilities, in addition to autism spectrum disorder and intellectual disability. The department’s psychologists and psychiatrists were contacted and asked whether they were aware of any potential participants from their patients. Potential participants were then contacted by the respective psychologist/psychiatrist and received information about the study before consenting to be contacted by the research team.

Eight parents (four mothers, four fathers) were included in the final sample. Their young adult children (ages 18 through 33) had various combinations of diagnoses such as mental health disorder (anxiety/depressive disorder, schizophrenia), sensory disability (deafness, blindness), and somatic conditions (epilepsy, diabetes). The severity/complexity of these difficulties meant that all the participants’ children had difficulties advocating for themselves in formal settings. Because some of the participants were concerned about potential repercussions, data on race/ethnicity, socioeconomic status, and age were not reported. Moreover, Norway is a relatively small country and additional information about the young adults’ specific support needs could make them identifiable. We therefore chose not to report this beyond the inclusion criteria and the examples provided above.

Materials

The interview guide, primarily containing open-ended questions, was developed following recommendations from Smith et al. (2009; see Appendix). The first author made the initial draft and all authors participated in its critical revision.

Research Ethics

The study was approved by the Data Protection Officer at the Oslo University Hospital (#20/11008). Written, informed consent was obtained from all the participants. Because the children of the participants would be discussed in the interviews, written informed consent was obtained from their legal guardians.

Procedure

All the participants were provided with a copy of the interview guide prior to the interview. Seven face-to-face interviews were conducted, while one interview was conducted over the phone, all between April and September 2022. Interviews were conducted by the first author, audio recorded, and transcribed verbatim by a project associate. The first author made field notes from each interview and checked all the transcriptions. Interviews lasted between 33 and 121 min (M = 80.1, SD = 25.5). The participants were not compensated for their participation.

Data Analysis

All the authors read the transcripts from the first six interviews prior to the analysis, which was conducted as a series of 3- to 4-hr workshops over 6 months, involving all authors. In the first workshop, in-depth discussions about the six interviews were conducted in the order in which they were conducted, with authors 2 to 5 providing their reflections on the participants’ descriptions of their lived experience and the first author contributing to the discussion only after the remaining authors had provided their feedback and interpretations. This was helpful in the bracketing process (Pietkiewicz & Smith, 2014), in which the authors worked to identify their own assumptions and experiences in order to focus on the participants’ experiences and how they made sense of them. Initial coding started after this workshop, with the first author taking the lead, in line with the principles outlined for IPA (Smith, 2011, 2017; Smith et al., 2009). The transcripts were read and re-read with a focus on the participants’ lived experience and how they made sense of it, using the input gained from the first workshop and the field notes. Descriptive notes were made in the right-hand margin on paper printouts of the transcripts. This back-and-forth process of being in dialogue with the participants’ descriptions, via different strategies for bracketing and interpretation, was repeated several times while considering each research question. Suggestions for emergent themes were noted in the left-hand margin and subsequently transferred to mind maps to identify potential clusters and connections between them. To center the lived experience of each participant, in line with the idiographic aspect of IPA (Smith et al., 2009), this process was completed for each interview before moving on to the next.

A list of clustered, suggested themes for each interview was sent to all co-authors and was subsequently discussed individually during the second workshop in light of the full transcript of each interview. Following these discussions, consensus was reached for themes for each interview. A search for connections across interviews was initiated after individual analyses of all eight interviews had been completed. This search started by identifying commonalities between the themes for each interview, and then a back-and-forth process to ensure that any perceived commonalities were reflected in the transcripts, as well as trying to unearth commonalities that could have been overlooked in the first stage of the analysis. The first author developed the suggested themes before they were discussed, revised, and agreed upon in the third workshop. When naming the themes, the authors looked for labels that clearly conveyed their subjective and experiential content in order to reflect how the participants described their lived experience. None of the theme names is a direct quote from a participant but a condensation of their descriptions developed through the analysis.

Following the third workshop, a master table of the themes with quotes from all participants substantiating each theme was reviewed by all authors and used to identify the prevalence of themes. No new themes emerged after the first six interviews, but the two remaining interviews were read by all authors, analyzed, and included in the results. The first author translated the participant quotes from Norwegian, with minor edits for the sake of clarity, while the remaining authors checked all translations. All participants read the manuscript prior to submission, and they were asked whether each theme reflected their lived experiences. No changes to the themes were made following feedback from the participants.

Positionality and Reflexivity

Accounting for positionality and reflexivity is an important aspect of establishing rigor and validity in qualitative research (Smith et al., 2009; Trainor & Graue, 2014). The first author initiated the study after working as a clinician in cases involving conflict and witnessing the distress experienced by the families, while also being unable to find literature to help better understand their experiences. The first author recruited the four other authors for this project because they had different experiences with regard to the topic and could offer different viewpoints. The author group comprised researchers with personal experience of conflict either as a professional or as a parent/family member, a third party involved in a case but not in the conflict itself, or as a conflict mediator. Several of the authors had experience of more than one of these positions, and the entire author group reflected on these positions in two meetings prior to conducting the interviews. These reflections continued throughout the analysis, including during the in-depth discussions of each interview, to identify underlying assumptions in the interpretation of the descriptions in the data. For example, the researchers reflected on how the participants’ perceptions and experiences were similar or different from their own, in the conflicts they had encountered across their different roles. The fifth author had no insider positions (Trainor & Graue, 2014) to the topic, helping the remaining authors ensure that the analysis and interpretations were grounded in the participants’ descriptions.

Findings

The analysis identified five themes, with a differing number of subthemes. These are presented in Table 1, including their prevalence in the sample. For research question one (Following negative advocacy experiences, how do parents of young adults with CSN perceive the development of conflict with services?) two themes were identified: We needed help, and made an effort to make it work, with no subthemes, and Through a lack of will and understanding, my child was put at risk, and I was punished for speaking up, with four subthemes reflecting the process in which the participants perceived the conflict to develop. For research question two (How do parents of young adults with CSN describe the impact of the conflicts that occur within service provision?), three themes were identified, reflecting the participants’ descriptions of the impact of the conflict, as well as their reflections when looking back: It made my life almost unbearable and These experiences have changed me for life, each with three subthemes, as well as I would do the same again, with no subthemes.

Table 1.

Emergent Themes and Subthemes.

Themes	Subthemes
We needed help, and made an effort to make it work (8/8)
Through a lack of will and understanding, my child was put at risk, and I was punished for speaking up (8/8)	Perceived lack of will and understanding (8/8)
	Escalation became unavoidable (8/8)
	Because I spoke up, I became and remained the problem (8/8)
	Recurrent and unpredictable harassment, sanctions, and pettiness (8/8)
It made my life almost unbearable (8/8)	I felt a sense of terror and distress (8/8)
	I felt powerless and alone (8/8)
	I started questioning my own perception of reality (8/8)
These experiences have changed me for life (8/8)	I have difficulties trusting service providers (8/8)
	The conflict changed how I see myself (6/6)
	I am more skeptical and use different strategies when interacting with service providers (8/8)
I would do the same again (7/8)

Note. Numbers in brackets indicate prevalence for each theme and the number of participants who reported the theme to reflect their experiences after reading the manuscript, respectively.

All the participants endorsed all the themes and subthemes, except for the subtheme “The conflict changed how I see myself,” which was endorsed by six of the eight participants. Overall, all participants highlighted the conflicts with service administrators and case workers in the municipalities as being their most severe and distressing experiences. In the presentation below, the term “service provider” is used to refer to any service representative, including administrators, managers, and case workers. Some participants also reported conflicts with health or educational services that appeared to revolve around the same topics, and sometimes appeared to serve as extensions of the underlying conflict with the municipality. All the participants confirmed that the term “conflict” was a fitting description of their experiences.

Despite living in different municipalities and having children with different combinations of support needs, the participants’ accounts were surprisingly similar, reflected in the high prevalence of the themes. Quotes were chosen following recommendations by Smith (2011), with each theme being substantiated by quotes from at least half of the sample and all participants being represented by at least one quote. For the themes with subthemes, only the subthemes were substantiated by quotes. For the two themes where no subthemes were identified, the main theme was substantiated by participant quotes. Each participant was represented by a pseudonym.

We Needed Help, and Made an Effort to Make It Work

Prior to the conflict, all the participants described how they had made a conscious effort to facilitate collaboration with service providers and administrators. They had difficulties providing sufficient support to their child on their own, and were aware that they needed and depended on support and services from the public health system. Their dependence on these services was perceived to contribute to the power asymmetry between parents and service providers, resulting in a perceived need to be tactical and strategic with regard to what concerns they raised and how they raised them.

“When our son moved, we had good communication and were well prepared, and thought this was going to go well,” showing how, prior to the conflict, Noah was optimistic and felt prepared to collaborate with the service providers. Elisabeth stated: “There’s nothing in the world I would want more than for this to have been successful,” reflecting her disappointment and regret that she felt her advocacy was unsuccessful, as well as how she had wished to avoid any conflict. “I’ve given a lot of chances to a lot of people, because we need to cooperate, this needs to work,” indicating that Rebecca saw her dependency on the support services as resulting in the need to make compromises on her own behalf, as well as on behalf of her child. Rebecca continued, reflecting on how this made her vulnerable: “It’s us who need this to work. For them, it’s just a job.” Moreover, Rebecca described how this dependency made her try to avoid rocking the boat: “We have everything to lose. We have everything to lose if there’s a conflict, so we need to tread carefully.” In other words, the participants perceived an expectation to act in a certain manner, to “tread carefully,” fearing there could be repercussions if they did not. Thus, the participants appeared to monitor their own behavior and be tactical about what kinds of concerns they raised from the outset. Hannah described this similarly: “You swallow your pride forty thousand times before you eventually speak up,” showing how she would avoid raising minor concerns to appease the service providers. In other words, Hannah felt she needed to compromise on her standards on her child’s behalf in order to facilitate collaboration.

Through a Lack of Will and Understanding, My Child Was Put at Risk, and I Was Punished for Speaking Up

The participants’ descriptions of how the conflict developed seemed to follow a common trajectory, reflecting a process represented in the following subthemes. The participants reported that they had repeatedly raised their concerns with their child’s service providers. The reported concerns often related to ensuring the fundamental well-being of their child. When, over time, the service providers failed to address these concerns, the participants ascribed this to a lack of understanding and unhelpful attitudes. For all the participants, there had been a time when their concern for their child’s welfare made them feel that they had no choice but to escalate the matter. In turn, the participants felt they were being perceived as difficult and were being punished for speaking up.

Perceived Lack of Will and Understanding

The participants felt they had made considerable efforts and compromises to facilitate collaboration; however, in their view, the service providers had made few such efforts. All the participants described repeatedly raising concerns that were not addressed by the services, concerns that the participants saw as fundamental to their child’s safety and well-being. When these concerns were perceived as being ignored, and sometimes explicitly rejected, the participants ascribed this to a lack of understanding of their child’s support needs, resulting in further explanations of these needs by the parents. When their concerns appeared to be ignored despite repeated explanations, the participants attributed this to a lack of will on the part of the service providers to take their concerns seriously, as well as a lack of will to provide the adaptations that they perceived to be necessary for their child’s welfare.

Elisabeth described how despite her repeated explanation of her child’s anxiety, and concerns relating to how service providers managed these difficulties, there were no changes to the service provision: “No matter how I tried to explain that she is afraid of this, and this is difficult for her, they just said ‘yes, yes.’ Nobody did anything about the problems or the things that didn’t work.” Rebecca recounted how she perceived the rejection of her concerns, with an administrator focusing on typical service provision rather than the individual needs of her child: “That’s how we’ve always done it, and that’s how we’ll continue doing it, and we’re not going to do it any differently even though it doesn’t suit your son.” Hannah saw this as a problem relating to attitudes, and a failure to see people with CSN as individuals: “There’s an attitude of ‘this is how we work,’ and they sort of view them collectively, not as individuals.” Also, Hannah felt that the transition to adulthood changed service providers’ attitudes toward utilizing parental expertise: “But when he’s 18, then you’re nothing, then you’re just next-of-kin. Suddenly, the municipality think they know everything.”

Noah reflected on how this perceived lack of openness to parents’ expertise negatively affected his child: “They didn’t listen to our advice, and needs and wishes, which would have been in his best interest. I don’t think they took it in.” This further shows how some participants felt that their own expertise concerning their child had been disregarded, without any clear understanding of why. This apparent breakdown in communication was ascribed to a lack of understanding of the complexity and nature of their child’s support needs, as Elisabeth reflected: “We just met a lot of people who sort of didn’t speak the same language as I did. I communicated my concerns, but there was nobody at the other end who understood what I was concerned about.” In other words, Elisabeth appeared to feel that the service providers did not understand what she was talking about, nor showed any interest in trying to understand her concerns. This lack of interest was also reflected in more concrete issues, such as the service providers’ failure to prepare for meetings: “No-one was prepared for any of the meetings. We had a list of concerns. If we didn’t, I guess it would have been over in ten minutes” [Sarah]. The breakdown in communication, in combination with a perceived lack of will and interest, as well as failure to make adjustments, led to the participants ascribing negative intentionality to the service providers. Sarah described a provider as “showing little humanity,” while Hannah perceived the services as not caring about her son.

Escalation Became Unavoidable

For all the participants, there had been a point when their concerns for their child’s well-being had made it necessary for them to speak up or take action, which, in turn, contributed to escalating disagreements into conflict. This perceived need to act appeared to be the result of the participants repeatedly raising concerns that were not addressed, while also observing a negative development in their child’s condition and well-being. All the participants felt they had no choice but to escalate the matter once this turning point had been reached. At this point, the participants viewed taking action as their parental duty if they were to continue seeing themselves as good parents. Several participants stated that they would have found it difficult to live with themselves if they had not taken action.

Rebecca described her sense of urgency in acting when she felt her child was at risk and her concerns were not addressed:

He became ill . . . He disappeared more and more, started to self-harm, and had a really, really, really hard time . . . We felt that we were losing our boy. He changed, was unhappy. We felt we had to do something drastic, or none of us would survive.

For Rebecca, taking action to protect her child appeared to be an existential issue. Noah described this in a similar way, including how he feared for his child’s life: “I once told a service administrator that if we hadn’t taken him home, he would have died in their hands.” Rebecca viewed the need to take action as an inherent part of being a parent: “They are my kids, you know. You’d die for them, if you had to.” Jacob perceived to have no choice but to speak up when his child was at risk: “The easiest thing would have been to shut up, but we can’t live with that.” Elisabeth elaborated on her perception of speaking up as a parental duty:

When your child comes home, is afraid and anxious and tells you that they don’t feel safe . . . you have a duty as a parent to go back to the service and tell them that this is not good for my child.

This quote highlights that when a course of action was seen as a parental duty, this served as a strong motivation to follow this course of action. Moreover, not following such a course of action appeared difficult to reconcile with the participants’ ability to see themselves as good parents, leaving them with little perceived choice but to escalate.

Because I Spoke Up, I Became and Remained the Problem

The participants described to feel that the service providers perceived them as persistent, difficult, and demanding. When their child showed increasing difficulties, the parents perceived to be viewed as being the problem because they drew attention to shortcomings in the services. Being viewed as a problem, the participants felt that they had little room for maneuver when raising their concerns, which could be met with increasing hostility. Such hostility made the participants unsure about how to proceed in their continued advocacy. Several participants described to find it challenging to be perceived as difficult.

Rebecca described how she perceived the change in the service providers’ attitudes toward her when her child’s problems got worse: “And when they don’t manage them [her son’s difficulties], it sort of turns . . . It turns, and we become the problem because we spoke up,” showing how she perceived the negative response when she raised her concerns regarding shortcomings in services. Isaac similarly described the perceived hostility and lack of room for maneuver: “They became belligerent when I pointed things out.” Noah reflected on his feelings about being viewed as difficult: “I find it difficult to think about, that those people probably think I’m a nuisance.” Sarah described how she tried to set these feelings aside for the sake of her child: “I feel I was being labelled, or viewed, in a very negative light . . . But at the same time you just try to hold your head high and move on.”

Recurrent and Unpredictable Harassment, Sanctions, and Pettiness

All the participants described what they perceived as unprofessional behavior by the service providers. These included emotional outbursts, as well as social sanctions and acts perceived as intended to inconvenience or embarrass the participants. The participants perceived these acts as being motivated by different reasons, including more elaborate strategies to silence parents, pettiness and revenge, as well as pride and obstinacy.

Hannah described how she was threatened during a meeting “She exploded. I just sat there. Then she came towards me, stood over me in a threatening manner, and she was a big woman. She stood over me and screamed into my face.” Elisabeth felt that the service providers were trying to silence her, by sending what she perceived to be unfounded reports to the child welfare services to stop her from raising her concerns: “It’s like they want to remove the problem. And that problem is me.” Rebecca described how her family felt targeted by other municipal employees who were not directly involved in service provision, leaving them less time and resources to advocate for their child: “They were going to destroy us, as humans, pure and simple. It was extremely frightening.” Sanctions perceived as being pettier were described by Elisabeth, including how service providers stopped saying hello to her in the street: “People didn’t say hello to me. People take a different route when they see us.” As for the reasons for these sanctions, Joseph reflected: “That’s how it is when there’s an administrator who’s unable to separate the issue from the person, and can’t accept that someone else might be right,” showing how he perceived pride and obstinacy to be a driving force behind these sanctions.

It Made My Life Almost Unbearable

The emotional consequences for the participants were immense, and appeared to affect them in their daily lives for the duration of the conflict and beyond. This included a sense of terror, distress and despair, feeling powerless and alone, as well as occasionally questioning their own perception of reality. Collectively, these experiences were described as overwhelming and all-encompassing, making the participants’ lives almost unbearable.

I Felt a Sense of Terror and Distress

Reflecting on the emotional impact of the conflict, most of the participants used war-related metaphors, from using the term “war” [Elisabeth, Rebecca, Isaac, Jacob] or “battle” [Hannah], to talking about “leaving your child with the enemy” [Noah]. The participants described a sense of terror, constant rumination, and the sense of being under siege. Some of the participants described potential trauma responses and strong physical reactions. All the participants reported having sleep problems. Some of them, particularly the fathers, described more depressive reactions, including suicidal ideation.

Rebecca described a strong physical reaction to the sense of terror: “It makes me ill. I can’t sleep, I lose my appetite, I shiver and shake, and I’m afraid and restless.” Hannah described a more acute crisis reaction “And I just cried and cried and cried, and I thought I was going to faint because I had trouble breathing . . . And then I was sent to the doctor, and I sat there and cried and cried and cried.” The sense of terror was associated with a constant sense of being under siege, of not knowing what was coming, leading Rebecca to feel that she could never relax: “And the worst thing about being in conflict, it’s that feeling that you’re under attack, that you don’t know what’s coming.” Elisabeth reported having to find strategies to take breaks from ruminating about the conflict: “After a while you just have to decide to stop thinking about it, or you’ll go crazy. It feels like there’s chaos in my mind.” Jacob described depressive reactions and suicidal thoughts: “I got really depressed. There was a period when I was borderline suicidal.” He continued to describe how he had sought out a trauma therapist, “but she came up short, because this is something that just goes on and on, it’s not something you’re going to process and get over,” indicating that the difficulty seeing a solution to the conflict in the future contributed to his distress. Despite their despair and distress, the participants perceived a need for continued advocacy and the need to set these feelings aside for their child: “And that’s what it’s about, in the end, and it scares me. When the day comes and I can’t do this anymore, fight for him, I don’t know who will” [Rebecca].

I Felt Powerless and Alone

The participants described feeling stuck, powerless, and unsure about how to proceed in attempting to resolve the conflict. They reported that they had difficulties seeing a way out of the conflict, which resulted in feelings of hopelessness. These feelings were exacerbated by the perceived power asymmetry with service providers, as well as a perceived lack of accountability on the part of service providers. In turn, the participants felt alone and isolated, which appeared to exacerbate their feelings of powerlessness and despair.

Elisabeth described how she just wanted the conflict to end, but having no idea how to proceed: “This is a big mess that I just want to go away . . . I have no idea how to fix it.” Jacob echoed the feelings of powerlessness that came from not seeing any way out: “Being so powerless, and feeling that you don’t . . . you don’t have any good way out . . . That hopelessness, that powerlessness”. Sarah reflected on how she perceived the power asymmetry with service providers to contribute to the feeling of being stuck: “You don’t get anywhere. It’s another example of how those who run things and have the power, they can do whatever they want.” This quote further highlights how Sarah perceived that there was little accountability for the professionals, and how this contributed to her feelings of powerlessness. Rebecca described how this made her feel alone and isolated: “You’re so alone. We have friends, we have a family and people who support us . . . But others don’t fully understand.” For Rebecca, the feeling that her friends and family could not fully understand what she was going through, that they could not relate to her experiences, appeared to increase her feeling of being alone. For Rebecca and others, this feeling of isolation appeared to exacerbate her feelings of powerlessness and despair. As Hannah stated: “In the middle of it all, you have no-one to talk to, you know, no-one to discuss it with; only your own common sense.”

I Started Questioning My Own Perception of Reality

The combination of terror, distress, isolation, and powerlessness occasionally led the participants to start questioning their own perception of reality. These instances appeared to be triggered by parents either feeling they had been wrongly accused of doing something or being told that something that they had witnessed had, in fact, not happened. Communication was difficult for parents when they could not agree with service providers on the fundamental perception of reality, and the power asymmetry appeared to contribute to the likelihood of parents questioning their own perceptions, as well as their reactions to these instances.

Rebecca and her husband were accused of doing something that negatively affected service provision for her son: “They made me so afraid that I thought we’d done something wrong, you know. You sort of . . . You got completely paranoid. Have we actually done it?” In this quote, Rebecca describes how her mind-set, dominated by fear, made her question whether she had, in fact, done something wrong. An administrator had accused Hannah of harassing a service provider until they became ill, which was not true: “She quit her job and sent us a letter, explaining . . . But the administrator gave us the impression that we had broken her, sort of. And we believed that for a year.” Hannah described this as earth shattering. When she eventually learned that she was not responsible for “breaking” the service provider, Hannah started questioning any communication she had with the municipality. Isaac described witnessing a service provider not doing their job, with administrators later denying that this had occurred: “I brought it up, but all hell broke loose. It wasn’t my business what their employees were doing.” This quote highlights how the power asymmetry affected these situations, with Isaac being accused of meddling in something that was not his business when he expressed concern for his child. The power asymmetry affected participants’ reactions to these experiences, with Sarah reporting about her husband: “I didn’t feel like he’d done anything wrong, but it was he who had to apologise.”

These Experiences Have Changed Me for Life

All the participants described that the conflict had changed them in several ways. These changes outlasted the conflict and included difficulties trusting service providers and others involved in the support and care for their child. Several participants reported changes to their own self-image because of their experiences during the conflict. Finally, the participants described how their strategies in interactions with any service provider had changed following the conflict. These changes included participants reporting that they had become more skeptical, noncommittal, impatient, and confrontational.

I Have Difficulties Trusting Service Providers

All the participants reported that the conflict had fundamentally affected their trust. They increasingly questioned the intentions of the service providers, and their lack of trust in professionals affected their confidence in the quality of their child’s services. Several participants reported that they wanted to trust the professionals with whom they interacted, but did not feel able to. This lack of trust was linked to a perceived need to be prepared that things could go wrong at any time. Such preparedness appeared to involve a hypersensitivity to any event or communication concerning their child, for example, when receiving a letter from the municipality or an unexpected phone call.

Elisabeth described how the repeated, negative experiences had made her question the professionals’ intentions: “And all these episodes have made us totally lose faith that they wish us well.” Similarly, Rebecca reflected how this lack of trust had extended to all aspects of service provision for her son: “I don’t know what I lost. I guess I lost trust completely, that they’ll be there for him.” Jacob described how he wanted to trust his son’s service providers, but how he also found it difficult: “There are not many people I trust, anymore. But I try.” This lack of trust made Rebecca feel that she could not allow herself to relax: “There’s so much at stake. There are so many things that can go wrong. And I need to be so prepared . . . There’s always some crap coming.” This quote reflects how Rebecca felt that lowering her guard was potentially dangerous. If she is not prepared, she may not be ready to manage something going wrong. Hannah described how this preparedness played out in her relationship with her partner: “Any time the phone rings, and he goes to answer it, I’m there in a flash: Who is it? What is it now? So there we are. And immediately when he’s done, the first thing he says is: Everything’s okay.” This quote shows how Hannah and her partner appeared to have become so accustomed to negative events in relation to their son’s services that they automatically became anxious when receiving a phone call and had developed common strategies to reassure each other that everything was ok.

The Conflict Changed How I See Myself

Six participants reported that the conflict had affected how they saw themselves. These changes included realizing that they had limitations regarding their strengths and resources. This realization was described as frightening, because it made their dependence on their child’s services more pronounced. Some changes were positive, such as realizing they were braver and stronger than they previously had perceived themselves to be. However, this realization appeared to be the result of a dissonance in some of the participants who had previously viewed themselves as conflict avoidant, and even these apparently positive changes appeared to come at a cost to the participants.

Hannah described how the conflict had made her realize that she only had so much strength: “I thought I had inexhaustible strength. I’ve always thought so . . . But suddenly I realised that it wasn’t the case. It just ran out.” She continued to describe how this change in her self-image outlasted the conflict: “I am much more fragile than I used to be.” Isaac reflected how this realization was frightening, and something he had to overcome, because not advocating for his child was not an option: “You have to fight with yourself, and you have to make the best of it all the time. Because, what’s the alternative?” Noah spontaneously described himself as conflict avoidant, something he saw as a positive trait: “Basically, I’m a person who doesn’t want to be in a conflict with anyone,” indicating that he found it challenging to integrate the conflict experiences into his self-image. This dissonance appeared to have resulted in a more positive change for Rebecca: “I’ve become much braver than I thought I would be.” Reflecting on the cost of these changes, Jacob said: “I’m not depressed anymore, but I have a sort of generally depressive mood, more than I had before. I think life is pretty challenging.”

I Am More Skeptical and Use Different Strategies When Interacting with Service Providers

All the participants described how the conflict had changed how they interacted with service providers in general, leading to altered strategies in future interactions with any service. This included services and professionals who had not been involved in the conflict, reflecting a more general distrust of their child’s services. The participants described how this distrust made them generally more noncommittal and impatient, more confrontational in meetings, as well as generally skeptical toward any service provider.

Jacob reflected on how the experiences from the conflict carried over to other services and professionals he later encountered: “You carry with you some of the history, what you’ve been through, and . . . you carry with you some distrust, scepticism.” Joseph viewed this as a natural response to the experiences he had been through during the conflict: “Of course you get sceptical about everything. All the services. When some of them carry on like that, you wonder: Is it like that everywhere?” Rebecca described having become more noncommittal and impatient, showing less deference in interactions with professionals: “I used to have a lot of respect for, for example, what the doctor said. But now I feel . . . I feel more secure; I won’t put up with things in the same way.” This loss of reverence for professionals made parents speak up sooner in situations involving disagreement, including becoming more confrontational: “I used to be more careful about how I expressed myself, moderated myself more than I do now. And that’s probably because I’m so full of distress and irritation over this” [Elisabeth]. Thus, Elisabeth seemed not only to carry a more skeptical attitude toward services brought about by the conflict, but also the feelings caused by the conflict.

I Would Do the Same Again

All the participants would have preferred to have avoided the conflict altogether; however, seven participants reported that they did not regret their actions and would have acted the same way again, because they had been fighting for their child. Some participants expressed pride in how they had handled the conflict, while some of them saw their actions during the conflict as having led to an improvement in their child’s services, including potentially saving their child’s life:

I wouldn’t wish it on my worst enemy. But I don’t know if I would have done anything differently. I feel that we have focused on her needs. And if they don’t listen to what we’re saying and see her needs, that doesn’t mean that I would have done anything differently [Elisabeth].

Even if it had come at a cost, Elisabeth stated that she would have taken the same course of action again, because she saw it as fighting for her child’s needs. Jacob similarly reflected on how he was proud of how he had handled the conflict, while still saying he would have preferred to have avoided it: “I’m quite proud that we got through this . . . But I would gladly have avoided it.” Noah perceived his son’s services to have improved as a result of him and his partner taking action and enduring the conflict: “I feel that everything we did, we did for our son, and I feel it was necessary. I feel that we’ve achieved something.” Hannah similarly described how she feared what the consequences would have been for her son if she had not fought for him: “If we hadn’t stood up for him, he might not have been alive today.”

Discussion

The aim of the current study was to explore how parents of young adults with CSN perceived negative advocacy experiences and conflict with service providers, as well as their impact, and how they made sense of their lived experience of these situations. Following negative advocacy experiences, parents perceived the development of conflict as a process. Prior to the conflict, the participants had been acutely aware that they needed help, and had made efforts to avoid conflict when advocating for their child, including moderating their own behavior to appease the service providers. However, when their concerns appeared to be ignored and they perceived their child to be at risk of physical or psychological harm, escalation became unavoidable. During the conflict, the participants described being severely impacted in their daily lives, including feeling a sense of terror, distress, and powerlessness, as well as sleep difficulties, rumination, and feelings of isolation. These feelings occasionally led the participants to question their own perception of reality, further contributing to a more or less chronic state of despair. As for impact over time, the participants described ongoing difficulties trusting service providers, changes to their self-image, and changes in how they interacted with any service relating to their child. While wishing to avoid conflict, in hindsight, the participants reflected that they would have chosen the same course of action again. Their understanding was that they had fought for their child, and that their refusal to back down had resulted in improved services, even if it had come at a cost to themselves.

The current study was conducted in the specific context of the Norwegian health care system, which may be particularly vulnerable to the perceived power asymmetries described by the participants. While the prevalence of conflict is unclear, anecdotal descriptions indicate that these experiences are not uncommon and may occur for individuals with less significant support needs (Ellingsen, 2023). However, the complexity and severity of the current cases may have increased the perceived urgency of parental advocacy. In turn, these findings may reflect a distilled account of experiences that may be common, albeit in less severe forms, across parents advocating for their children in the Norwegian health care system. Moreover, the descriptions from participants as to why they reacted and made sense of their experiences the way they did appear to reflect common issues associated with having a child with CSN (e.g., Brolan et al., 2012; Codd & Hewitt, 2021; Cuskelly, 2006). They feared their child was not adequately cared for, with their subsequent actions being motivated primarily by the need to ensure their child’s safety and well-being. This is likely to be a helpful perspective for professionals across different health care systems, organizations, and contexts.

The Development of Conflict

Because of the extent and complexity of their child’s support needs, the current participants depended on the services, highlighting the power asymmetry between these parents and service providers, and the vulnerable position these parents perceived themselves to be in from the outset. In line with previous research (Boshoff et al., 2016; Brolan et al., 2012; Codd & Hewitt, 2021), the parents in the current study perceived advocacy as a parental duty. When they felt their child was at risk, continued advocacy seemed necessary if they were going to continue perceiving themselves as good parents. In line with Burke and Hodapp (2016), negative advocacy experiences resulted in increased advocacy efforts. Regarding the current participants, this appeared to be driven by them feeling that they were not being heard, gradually increasing concern for their child’s welfare, and a feeling of responsibility for the adequacy of service provision for their child. Thus, expecting parents to stand back and let the service providers take over, particularly when the parents perceive the service provision as being inadequate, appears likely to make these parents feel like they are not good parents.

None of the participants appeared to have been looking for conflict, nor did they want the conflict to continue. Case (2001) reports that parents prefer service providers to be pro-active. None of the participants perceived the service providers as being pro-active, with the early stages of the conflict being characterized by parents repeatedly raising concerns that did not result in any observable change in service provision. Utilizing parental expertise is likely to be particularly important during the transition to adult services, when the parents’ expertise concerning their child exceeds that of the professionals. However, for parental expertise to be utilized, service providers need to see this expertise as valuable. Moreover, service providers need to accept that advocacy is an integral and expected role for these parents, as well as to establish organizational strategies to utilize such advocacy. Focusing on the collaborative development of a shared understanding of the child’s support needs, integrating the parental expertise and the professionals’ perspectives, is likely to be a more helpful strategy than expecting the parents to stop advocating.

For individuals with CSN, a lack of appropriate adaptations in support may be linked to a lack of relevant knowledge. The current participants’ descriptions indicate that lack of knowledge was not their main concern, but rather the failure by the services providers to acknowledge it. However, it is possible that service providers were unaware that they were perceived as lacking the necessary understanding, or that they were aware, but failed to communicate this to the parents. These findings suggest that increased advocacy efforts by parents may be a helpful indicator for service providers to re-evaluate their communication strategies, and attempt to understand and address the parents’ concerns, in order to reduce the risk that disagreements devolve into conflict. None of the participants perceived escalation as being a choice, indicating a need to take action when parents communicate concern for their child’s safety and well-being.

The Impact of Conflict

All the participants reported having sleep difficulties and ruminating, feeling powerless, and having difficulties seeing a way out. According to shattered assumptions theory, trauma alters how individuals view themselves and the world (Janoff-Bulman, 2010). In particular, the assumption of the world as fundamentally benevolent is negatively affected. All the participants described a loss of this assumption, indicating that conflict with their child’s service providers may lead to trauma-related responses in parents. Trauma-informed strategies have previously been highlighted as an essential aspect of service development for people with intellectual disability (Keesler, 2014; Truesdale et al., 2019). The current results indicate that this is not only important for people with CSN, but also for their families.

All the participants described how the conflict had changed them, reducing their general trust and confidence in services, thereby changing their strategies in future interactions with any service. If service providers come to view parents as being difficult and unreasonable, there is a risk that parents’ views will be discounted (Krishnan, 2024), which may lead to a further increase in advocacy efforts (Burke et al., 2022), potentially resulting in the development of a destructive cycle of communication between parents and service providers. The current participants perceived to be viewed as difficult or demanding, and described becoming impatient, noncommittal, and confrontational with professionals. According to the correspondence bias (Bauman & Skitka, 2010), people tend to discount potential environmental/situational causes while overemphasizing dispositional factors when observing the behavior of others. In other words, there may be a risk that service providers discount situational factors when relating to parents’ communication and behavior, including the providers’ own contributions to the situation. However, parents protecting their child from harm is a common human response (Schaller, 2020). When a parent perceives their child to be in danger, this provides a strong situational incentive to act in a certain manner, overriding other factors affecting their behavior. For parents to leave their child in the care of someone else may be a stressful and frightening experience from the outset, particularly if they do not trust the system providing support to their child. Attempting to avoid the correspondence bias may be helpful for service providers when communicating with parents, and may help to avoid of self-fulfilling prophesies (Madon et al., 2011). If parents are perceived as being difficult by the service providers, there is a risk that they will subsequently be treated in a manner that increases the likelihood that any behaviors perceived as difficult will continue.

Limitations

The sample for this qualitative study was small, describing experiences in the specific setting of the Norwegian health care system. All the participants were recruited from a tertiary mental health service, and their advocacy efforts may have contributed to their children being referred to this service in the first place. Mental health problems in people with intellectual disability may be particularly challenging for the services, and there may be an increased risk of conflict when mental health problems contribute to the complexity of CSN. Parents’ experiences of conflict were the focus of this study, and these may differ from the experiences of service providers. While further studies are needed to examine how the current findings may be relevant to other settings, these findings may be transferrable (Maxwell & Chmiel, 2014) in that they may provide a helpful perspective for professionals in other settings who are experiencing conflict. Finally, the current study is limited by the perspectives of the group that conducted the study. To counter some of these limitations, different perspectives were sought when putting together the research group as well as throughout the analysis.

Directions for Future Research

Further research is needed to explore whether conflict with service providers is common among parents of young adults with CSN, and what characteristics of families and services may be associated with an increased risk of conflict. Moreover, research is needed to identify whether the trajectory of conflict development following negative advocacy experiences described by the current participants may apply to less complex cases, other developmental periods, and other settings. Possible trauma-related symptoms in parents appear to be another important topic for future studies. Finally, there is a need for studies exploring service providers’ experiences of conflict, as well as studies on conflict resolution, including how parents and service providers may be able to work together following conflict. As such, the findings from the current study may serve as a starting point for further exploration of the experiences of conflict between parents and service providers.

To date, the literature on parental advocacy has focused on describing the strategies parents use and developing advocacy training programs (e.g., Rios & Burke, 2021). However, few studies have focused on professionals’ skills in receiving and making appropriate use of parental advocacy. Strassfeld (2019) reports that these perspectives appear to be lacking in current curricula for relevant professions. The current findings highlight the need for more knowledge-based strategies in relating to parental advocacy, as well as for the development of service models in which parental advocacy constitutes an integral aspect.

Implications for Practice

These findings highlight the importance of utilizing parental expertise, even if there are disagreements between parents and service providers, as escalation of disagreement into conflict appears unlikely to be helpful. Integrating the professionals’ perspectives and parental expertise in the development of a shared understanding of an individual’s support needs may be a helpful starting point in trying to reduce the risk of conflict. Developing organizational strategies to make use of parental advocacy in a systematic way is likely necessary.

In line with the previous literature (e.g., Case, 2001), the current findings indicate that a pro-active stance by the service providers, as well as service providers being interested and curious, and acknowledging the limits of their own knowledge, may contribute to reducing the risk of conflict. An increase in the intensity or frequency of parental advocacy efforts may be a helpful indicator for service administrators to re-evaluate their communication strategies, as well as make increased efforts to understand and address parental concerns. When aiming to de-escalate conflict, attention to the correspondence bias and avoiding self-fulfilling prophesies may be helpful. Parents may have trauma-related responses from previous conflicts with other service providers, and trauma-informed approaches in service provision may be helpful to avoid a cycle of repeated misunderstanding and misinterpretation. Finally, strategies to reduce or resolve conflict that do not include efforts to help parents feel confidence in the quality of their child’s services appear unlikely to succeed.