Self-injury and the treatment gap: An interdisciplinary exploration of beliefs about causal variables and treatment goals among caregivers, researchers, and clinicians

Abstract

Introduction

There is a gap between individuals with intellectual and developmental disabilities (IDD) who need treatment for self-injurious behavior (SIB) and those who receive it. One contributing factor may be a multiplicity of beliefs about the nature of SIB and its treatment.

Methods

Using reflexive thematic analysis, we interviewed and integrated two knowledge sources: the perspectives of family caregivers for individuals with SIB and IDD and the perspectives of clinicians and researchers who treat and study self-injury.

Results

We present results from two primary belief categories: perceptions of causal variables and treatment goals.

Conclusion

By contextualizing the current paradigms of research and practice in self-injury as siloed depending on whether an individual does or does not have IDD, we discuss ways to deepen our understanding of the process of treatment provision for self-injurious behavior to inform efforts to close the treatment gap.

Introduction

Over the past several decades, there have been significant advances in intervention research for self-injurious behavior (SIB) in intellectual and developmental disabilities (IDD; Moore et al., 2024). However, there is evidence of a gap between individuals with IDD who need treatment for SIB and those who receive it (Ruddick et al., 2015); what we hereafter refer to as the treatment gap. In previous research we interviewed family caregivers about their treatment experiences to begin to understand this treatment gap from the family perspective (Roberts et al., 2023). Caregivers described the immense stress of driving treatment access and many barriers to acquiring effective care for their family members with IDD (e.g. knowledge gaps, practical constraints, a reactive care system). Of particular interest was the finding that caregivers had dynamic, often conflicting beliefs about SIB, including what SIB is, what causes it, and what treatment is available and worth pursuing (Roberts et al., 2023). This was often associated with messages from the providers the caregivers interacted with as they sought care for their family member. We concluded that the multiplicity of beliefs about SIB among professionals (and, through interaction, caregivers) may have contributed to why treatment access was often unsuccessful.

The current study aims to expand Roberts et al. (2023) and further our understanding of how beliefs about SIB may influence treatment provision. Research indicates that perceptions of illness directly influence patient behavior, including treatment-seeking behavior (Petrie & Weinman, 2006). For parental caregivers of individuals with IDD and a mental health diagnosis, research by Werner et al. (2019) indicates that help-seeking behavior increases with lower family stigma (defined as “negative attitudes held by others toward families of someone with a disability” p. 322), as mediated by enabling factors such as knowledge about services and previous experience with psychological treatment. Their study also found that help-seeking behavior increased with professional enabling factors, including professional attitudes and service availability, particularly for caregivers who had a low sense of self-efficacy (Werner et al., 2019). However, the study was not specific to the issue of self-injurious behavior.

Specific to self-injury, there is research on the attitudes of professionals toward individuals with intellectual disabilities (ID) who self-harm, though it is limited (Samways, 2022). Samways’ (2022) review compared professionals’ attitudes towards people with ID who self-harm (n = 4 studies) and people without ID who self-harm (n = 26 studies). She found patterns of similarities and differences in attitudes between the two groups; for example, both groups identified communication as a common function of self-injury, though professionals treating individuals with ID viewed self-injury with a communicative function less negatively than professionals treating individuals without ID (e.g. as a communicative strategy when more positive strategies were not available, rather than “labelling communicative self-harm ‘to get attention’ or ‘manipulative’”; Samways, 2022, p. 963). These results demonstrate the importance of considering how self-injury is understood differently by professionals aligned with either people with or without IDs and the influence of the beliefs of professionals in addition to caregivers. However, this study did not directly connect attitudes (or beliefs) to the process of treatment provision (Samways, 2022).

In light of this research context, the current study addressed two primary limitations of our previous study of family caregiver experiences. First, we did not get the input of researchers or clinicians in SIB, who were likely influential in the development of the caregivers’ beliefs and who are involved (either directly or indirectly) in the treatment process. Secondly, there is a complex context around how self-injury is studied and treated in individuals with and without IDD and this context was not represented in our initial inquiry. Namely, the validity and usefulness of existing paradigms of research and treatment in self-injury is open to question (Roberts et al., 2024), in particular the structure of classification which defines SIB in individuals with IDD as a phenomenon that is studied, treated, and understood as categorically different from nonsuicidal self-injury (NSSI) in individuals who do not have IDDs. It is our belief that this context is relevant insofar as it complicates the current landscape of treatment provision and contributes to the multiplicity of beliefs about SIB.

To further our inquiry into the nature of the treatment gap in SIB, we chose to incorporate questions about beliefs into a larger study rooted in interdisciplinary knowledge exchange between researchers and clinicians with experience studying and/or treating SIB and NSSI. Specifically, we asked about beliefs about the cause(s) of self-injury and the goals of treatment for self-injury. We chose to focus on these two relevant belief categories because they reflect much of the interrelated components that previous researchers have identified are relevant to patient belief systems (Petrie & Weinman, 2006). Further, as we are particularly interested in processes of treatment access, we focused on beliefs that are highly relevant to the decision to seek and maintain treatment. In addition, we re-analyzed the family caregiver interviews from the previous study to expand the Beliefs and Perceptions about SIB theme from that study (Roberts et al., 2023). We present the results of both analyses in this paper and explore how similarities and differences in beliefs about self-injury (from both professionals and family caregivers and about both SIB and NSSI) deepen our understanding of the treatment gap in SIB.

Methods

Other Publications from this Data

This paper presents select results from two datasets. Other results from the datasets are previously published. See Roberts et al. (2023) for discussion of caregiver-provider interactions from the perspectives of family caregivers of individuals with IDD and chronic SIB. See Roberts et al. (2024) for discussion of the possibilities of an interdisciplinary approach to the study and treatment of self-injury from the perspectives of experts in SIB and/or NSSI. This study was approved by the University of Minnesota Institutional Review Board STUDY00012016.

Family Caregiver Interviews Dataset

The first dataset was a collection of fifteen semi-structured interviews conducted with family caregivers of individuals with IDD and SIB that is severe and/or chronic enough to interfere with daily life (as identified by the caregiver). Participants were recruited via a convenience sample with snowball sampling from virtual support groups and personal networks. The participants were primarily mothers, with one sibling and one father (see Roberts et al., 2023 for full demographic information). Interviews were conducted via Zoom between March and July 2021. All but one interview was conducted by the first author (CR), who is a semi-insider as she is a caregiver for her brother who has IDD and chronic SIB, but not currently his primary caregiver.

For this paper, the first author re-analyzed the transcripts deductively, specifically under the categories of Perceptions of Causal Variables and Treatment Goals to align with the analysis of the focus group transcripts. As described in Roberts et al. (2023), the original study was based on a phenomenological design framework and the analytic process was guided by reflexive thematic analysis as described by Clarke and Braun (2021) and conducted with the organizational aid of NVIVO software (we did not use automatic coding or theme production functions of the software; Lumivero, 2023). Our process involved reflection on our positionalities, conducting interviews on sensitive topics, and our philosophical assumptions (critical disability theory and social constructivism). To enhance the rigor of the analysis, we engaged in independent memoing, collaborative candidate theme development, peer debriefing, and ongoing reflexivity (Roberts et al., 2023). We chose a qualitative thematic analysis approach because these studies are exploratory and we prioritized a depth of knowledge specific to the sample over breadth of knowledge at this point in the research process. We emphasized reflexivity in our analytic process because we have relevant lived experience to the study topic as SIB researchers and, in the case of the first author, as a SIB caregiver.

Expert Focus Groups Dataset

The second dataset included ten semi-structured focus group transcripts collected via Zoom by the first author (CR) between November 2022 and March 2023. Thirty-one experts in the research and/or treatment of SIB and/or NSSI participated in the focus groups, which were framed as an opportunity for knowledge translation between professionals who otherwise have little opportunity for discussion given the siloed nature of the fields. The experts had an average of 15 years of professional experience, 80% held a doctoral degree, and worked in research and/or practice treating and/or studying self-injury in a wide variety of settings, including academic institutions, clinics, hospitals, schools, private practice, prisons, and street outreach (for full demographic information see Roberts et al., 2024). The focus groups were matched by level of expertise and diversity of experiences as possible and had between two and five participants. Participants were sent a protocol ahead of the group with definitions of SIB and NSSI and sample questions.

The expert focus group dataset was also analyzed with a collaborative process of reflexive thematic analysis (Clarke & Braun, 2021), deductively framed around topic areas related to perceptions of causal variables, treatment goals, case ascertainment, and pathways to treatment. We used NVIVO software to organize our data and coding process but not for automatic coding (Lumivero, 2023). Our philosophical assumptions for this study included social constructivism, pragmatism, and elements of community-engaged participatory research. We employed techniques of memoing and peer debriefing for added rigor. We prioritized actionable and positively-oriented strategies for interdisciplinary exchange in our analysis.

Results

We present results from two primary categories of beliefs: perceptions of causal variables and treatment goals. Each category begins with results from the focus groups with researchers and clinicians across the SIB-NSSI divide and continues with a summary of the beliefs of the family caregivers we interviewed.

Perceptions of Causal Variables

Focus Groups with Experts in SIB-NSSI

This category explored how focus group participants think about causes of self-injury. The five themes are: Cause is Complex, Timeline Framing, Uneven Consideration of Internal vs. External Functions, The Role of Self-Report and the Assessment of Internal Functions, and The Role of Comorbidities.

Cause is complex.

The SIB and NSSI researchers and clinicians in our sample agreed that self-injury is multicausal, individualized, and context matters. There was consensus that there is no simple answer to the cause of self-injury. From a SIB clinician: “I feel like when people say- why is my kid injuring? I go into this long tirade of, well... it’s multifactorial, right? They don’t have any functional communication. They have a genetic disorder. They are constipated and can’t tell you. You know, you have seven kids in your home, right? There’s so many things going on that it’s hard to say that one reason why it may emerge or maintain over time.” Similarly, this response came from a participant from the NSSI side: “I think there’s so many different reasons or theories or aspects of that. I just can’t fully- at least for me, I can’t boil that down into one easy, simple answer, because I think for the people I work with, it’s very multifactorial and complex.”

Timeline framing.

SIB and NSSI researchers and clinicians in our sample also agreed that self-injury changes across time and can differ in the onset versus the maintenance of the behavior (i.e. why the behavior begins and why it continues). However, SIB and NSSI professionals tended to conceptualize the development of self-injury across time differently and noted different variables as relevant to change across time.

In SIB, participants typically conceptualized onset in terms of developmentally appropriate proto-SIB in early childhood: “We see it in typically developing kids all the time, young kids, toddlers who engage in headbanging or tantrum-like behavior, but it typically goes away. Whereas we see with the kids with intellectual developmental disabilities, we see really high persistence rates once they start engaging in self-injury.” In NSSI, onset was typically conceptualized in terms of accidental injury or peer contagion in adolescence: “Like it accidentally happened and then she liked it. And then so she kept on doing it and she looked forward to it,” “initially they may do it for group affiliation. So there’s cutting clubs in schools, that kind of thing.”

In SIB, entrenchment was typically conceptualized in terms of behavioral shaping and/or impulsivity. In NSSI, entrenchment was typically conceptualized in terms of an addiction model: “we would say... it’s usually a matter of satiation. Like they start with one or two and they increase the severity of the self-harm and the intensity to get the same response from the brain that they got the first time they did it.” Further, acquired capability for suicide across time was highly relevant to change across time in NSSI, and was not discussed in SIB.

Uneven consideration of internal vs. external functions.

In the focus group discussions, internal and external functions of the behavior were not evenly considered in NSSI and SIB. Generally, NSSI researchers and clinicians tended to weigh internal functions more and SIB researchers and clinicians tended to weigh external functions more. For example, compare the following statements. An NSSI clinician’s explanation of the cause of NSSI: “...a difference in the ability to regulate emotions in response to certain stimuli that have been previously due to difficulties in attachment, previously sort of sensitized.” A SIB clinician’s explanation of the cause of SIB: “In our field, it’s pretty clear that those environmental contingencies are what maintains the behavior for a lot of people.” Further, there were commonly specified internal functions of NSSI that have been minimally explored or not explored at all in SIB, such as trauma exposure, marginalized identity status, or genetic temperament.

The role of self-report and the assessment of internal functions.

While lack of self-report can create real challenges in the assessment and treatment of SIB (many who engage in SIB are nonverbal or otherwise unable to self-report; McClintock et al., 2003), participants discussed how the inaccessibility of self-report can also be used as an excuse not to consider internal functions of the behavior or pursue certain treatment avenues: “part of this is the bias implicit in developmental disabilities where... the aura of the cognitive and intellectual disability, you assume implicitly or explicitly that more complex cognitive affective operations aren’t happening, just because you don’t have access to their language where they can tell you about that.”

In NSSI, participants discussed how self-report is more complex than is often acknowledged. Sometimes self-report is overrelied upon and at other times self-report is not trusted. Often, even individuals with typical cognitive function and verbal communication can’t articulate explanations for their own behavior: “I mean, in general amongst humans, we’re not always- we don’t always understand why we do things when asked.” Further, some participants brought up the idea that topography, or the form of the self-injury, tends to be undervalued as a strategy for assessing internal functions: “A closer objective view of the topography of the behavior could actually be hugely beneficial in clinical work... where physically on the body did it happen and what else was happening in that part of their body around the same time?”

The role of comorbidities.

In both SIB and NSSI, participants agreed, the presence of comorbidities complicates understandings of cause. In SIB, it can be difficult to discern if there is a mental health related comorbidity, because people with IDD are often excluded from the mental healthcare system. One clinician described her difficulty in determining a care pathway for a teen with IDD and mental health symptoms: “I’m in a quandary right now with a non-speaking teenager because, you know, he’s had sort of what we consider SIB his whole life in the form of hand to head. But, you know, I just did an evaluation with him and…there are some pretty significant indicators that suggest he is in the midst of a depressive episode, just based on his activity levels and tearfulness and things like that. And so now I’m in this quandary of- well, what do I call this? Is this still SIB, has it become NSSI?” Post-traumatic stress disorder is a common comorbid diagnosis with NSSI but is not typically considered in SIB, even though there is evidence that people with IDD experience more trauma and abuse than people without IDD (Emerson & Hatton, 2018; Stalker & McArthur, 2010). On the NSSI side, it is sometimes difficult to disentangle compulsive diagnoses (i.e. obsessive-compulsive disorder, trichotillomania) from NSSI: “...those kids, I think where there is almost like an OCD-ish component, are the ones that are really hard to treat because it’s not clear what’s what. It’s kind of like mixed in together with the emotion regulation and the OCD behaviors.”

Interviews with Family Caregivers of Individuals with SIB

Family caregivers in our sample reported a variety of beliefs about why their family member engages in SIB. The most common beliefs were related to pain or an untreated medical condition, communication, sensory stimulation, or emotional expression (i.e. anxiety). Less commonly, caregivers expressed beliefs that the SIB was related to trauma, seizures, puberty, a social contingency, a sense of control, a dietary issue, a medication side effect, or habit. A few caregivers expressed the idea that SIB is part of the intellectual or developmental disability: “this is just part of the package.” One caregiver said: “sometimes I think he thinks he’s being funny. You know, like I’m doing this because I’m just being silly, kind of thing... a mixed up emotion.”

Each caregiver cited multiple potential reasons for why they believed their family member self-injures and they tended to express their perceptions with uncertainty. Part of the challenge of self-injurious behavior, the caregivers described, is that it is not clear why it is happening, and each case is unique: “there’s really no rhyme or reason. Like we don’t know what was different yesterday versus, you know, any other day.” This uncertainty added to their stress: “especially a child who’s nonverbal- it’s really hard playing detective trying to figure out what is going on every day, it could be something different.”

Treatment Goals

Focus Groups with Experts in SIB-NSSI

In this section we discuss NSSI and SIB researcher and clinician beliefs about the goal(s) of treatment for self-injury. The four themes are: Harm Reduction vs. Elimination, Risk and Early Intervention, Autonomy in Treatment, and Quality of Life.

Harm reduction vs. elimination.

There was disagreement among NSSI researchers and clinicians in our sample about whether NSSI is a replacement behavior for suicide or if it demonstrates acquired capability for suicide. This belief in turn informed beliefs about the goals of treatment, specifically whether the behavior needs to be eliminated or clinicians should take a harm reduction approach. For example, compare the following two beliefs: “As long as someone’s self-injury isn’t kind of escalating to be putting them in quite a medically dangerous position, I think... we work on what else is going on for that young person. Particularly because one of the functions of NSSI is anti-suicide. So it’s a way to prevent yourself from doing something worse. And we really don’t want to be kind of removing that as a possibility from someone’s toolkit.” Compare this belief system to the following: “I mean, the whole function of decreasing the self harm is… you can’t move on to other goals treatment-wise as long as you’re engaging in self-harm because the self-harm is- it opens the door to suicide.” Harm reduction was not explicitly discussed by the SIB professionals in our sample, but the ideas were implicitly present, particularly in discussion of cases of chronic SIB: “I’m trying to get it at a level that is more appropriate and increase more appropriate ways of coping or handling distress or managing expectations in their world. You know, I think that is kind of my goal for treatment is really to think about increasing functioning, increasing safety.”

Risk and early intervention.

Generally, risk is better understood in NSSI than in SIB. However, NSSI and SIB experts face similar challenges in terms of understanding the role of early intervention. For example, participants from both fields agreed they need a better understanding of the development of the behavior and how to intervene on a behavior that is not yet dangerous, but has the potential to become dangerous: “In both fields what is really still emerging is how can we intervene at the antecedent and community level to not get folks into a situation where we’re even having to intervene at the consequent level when there’s already been damage that’s been done.” Further, participants also described how efforts to promote early intervention come with similar challenges for both SIB and NSSI: “You’re basically telling parents whose children aren’t really showing any massive problematic behaviors that you want to do some extra work with them to prevent something that they don’t think is going to happen.”

Autonomy in treatment.

Individuals with intellectual and developmental disabilities and adolescents facing mental health challenges are two populations who tend to lack high levels of autonomy in their lives. Participants discussed parallel controversies in NSSI and SIB related to autonomy and the rights of individuals to refuse and guide treatment for self-injury. In SIB, the role of Applied Behavior Analysis (ABA; the most common treatment for SIB) is controversial, as some believe “that behavioral approach isn’t going to benefit them in the long run because they’re just going to end up with probably more distress.” In NSSI, the right of treatment refusal is under debate: “We have a group who says we should change the stigma, not the behavior. That if I can do multiple piercings or tattoos, body art, why can’t I have burns and cuts and bruises?”

Quality of life.

In alignment with a harm reduction perspective, participants described movement in both NSSI and SIB clinical practice toward understanding the goal of treatment as improving quality of life rather than eliminating the behavior. This was understood broadly as ensuring safety, providing relief to caregivers, and incorporating elements of wraparound care. However, it is unclear who decides what is safe, what defines high quality of life, or how these concepts are measured. From an NSSI expert: “It comes back to that quality of life thing, like- can you live well with a mental health condition? And I do believe that people can live well, like we don’t need to cure people, but what would be really nice is to just make sure everyone is, you know, being able to do what they want to do, rather than being in a horrible situation where actually, someone’s life is taken too early.” Notice how the same sentiments come through in a different way from a SIB expert: “In IDD, self-injury predicts placement breakdown and lack of access to community services and lack of education access and increasing restrictive practices and- you know, pharmacology and all of those things. And actually, I guess the goal is- yes, we want to reduce self-injury, but it’s so that you can have access to all of these things in your life and live a life that is absolutely your potential and that has all of the access to community that you deserve.”

Interviews with Family Caregivers of Individuals with SIB

The most commonly expressed direct goal of treatment by the family caregivers in our sample was for their family member to “calm down”: “you need to figure out what calms your child,” “try to settle them down, you know, try to find ways to relax them,” “start taking his own personal responsibility for calming down,” “Risperdal was a miracle drug because it helped a lot at just calming him down.”

Family caregivers cited access to specific types of treatment as a goal; namely, psychoactive medications, behavior therapy services, speech language pathology services, or occupational therapy services. The latter were related to beliefs that improved functional communication and sensory integration would support their family member in a way that ultimately reduced the SIB.

The goals of treatment were not framed only by what the individual with SIB needed; rather, family caregivers often stated goals that incorporated the needs of the caregivers and family. Several caregivers expressed feelings of hesitation or having reservations about certain types of treatments (e. g. medication, restraints, protective gear like helmets). They expressed reservations because of the side effects of psychoactive medication (namely, sedation or personality changes), the way restraints limit their family member’s freedom of mobility (and for some, how this limits learning), and the potential of protective gear to be stigmatizing. The caregivers expressed that whether they employed these treatments was as much a factor of if they believed they were needed as if they, the caregivers, were ready for them: “for a long time I was very reluctant to try pharmaceuticals, because he’s nonverbal... I didn’t want to put him on a mind- you know, emotional manipulator, if he can’t talk to me about it. But it got to the point where...we’ve got to do something.” The caregiver’s emotional readiness seemed to be related to a sense of reaching a limit of what the family could manage; as one caregiver put it: “I was like, I can’t live like this anymore.”

Sometimes the parent’s readiness was more about practical considerations and the demands of caregiving than emotional readiness: “if we stay with ABA, can we survive? That problem is more complicated because I’m navigating this thing as basically an unemployed and unemployable single parent;” “it’s hard to be told try this and this and this and this, especially when you have two other young kids;” “he pretty much slept for three months straight. But we had a lot of family stuff going on.... I couldn’t focus on [name redacted] 24–7. So that helped us get through.” These quotes demonstrate how the goals of treatment may be influenced by the family context, including parent employment status, the needs of siblings, or the presence of other sources of family stress.

Multiple caregivers in our sample described a shift in their beliefs about pharmacological intervention specifically as the behavior became more severe: “I don’t want him to have to take medication for this forever. But I’m over that and it’s like, it is what it is and if he has to take it to make our lives livable and bearable, then that’s what we have to do;” “He had never been on pharmaceuticals ever in his life. We were very strongly opposed to that. But we quickly realized something was wrong.” Finally, among caregivers of adults who had been self-injuring for a long time, there was sometimes a sense of needing to accept that SIB was inevitably a part of their lives, and treatment was more about managing the behavior than eliminating it: “It’s not something we can fix. It’s something to deal with;” “...knowing that it’s not going to go away. It’s what we’ve got.”

Discussion

According to our analysis there were a variety of beliefs about the cause(s) of SIB and the goal(s) of treatment among caregivers, clinicians, and researchers. In some areas there was consensus (at least within our samples) and in some areas there were clear differences between the beliefs of participants from each group, different beliefs within groups, or considerations that one group was more concerned with than others. This confirms our previous study finding that there is a multiplicity of beliefs about SIB and expands it beyond family caregivers (Roberts et al., 2023). In the following sections, we will compare the reported beliefs of each group- SIB caregivers, SIB professionals, and NSSI professionals- to explore how similarities and differences in those beliefs may impact treatment provision. Note that participants in the interviews and focus groups did not directly discuss points of consensus; rather, we identified these points as part of our analysis.

Points of Similarity

Individualized Care

There was agreement between all our included groups that SIB is complex and treatment needs to be individualized. Self-injury in individuals of all abilities is a challenging clinical and research problem, though each group had a different lens on the issue, and each participant had their own unique challenges in treating, studying, or caring for individuals with self-injury.

Reactive Care System

Each group particularly emphasized the issues of reactive care, lack of early intervention, and hesitation to implement interventions (for caregivers, this is exemplified in the previous study theme Wait Until Crisis; Roberts et al., 2023). The quote from a focus group participant “we converge right now in emergency departments” succinctly illustrates how the care systems for both SIB and NSSI, though initially siloed by separate service systems for individuals with IDD or mental health concerns, ultimately end up in the same setting- the emergency room- because of the reactive, crisis management nature of the current system.

Autonomy in Treatment

Participants from each group brought up issues of autonomy and the right of individuals and caregivers to guide and control treatment. Caregivers discussed the impact of their emotional and practical readiness for certain treatments, including initial opposition to certain types of treatments such as psychoactive medications or restraints. They indicated that a key part of the treatment access process was the family decision to allow certain more invasive treatment options to be pursued, something providers may not typically take under consideration if they have not actively sought case knowledge on their patient’s family context. This is likely to be the case for many providers, given that most treatment approaches for SIB are at the individual level (family-level treatment options for SIB have not been developed; Roberts & Symons, 2023). SIB experts brought up the relevance of controversy (particularly in the autistic community) around the most common treatment option for SIB, Applied Behavior Analysis (ABA; it is important to note that focus group participants were not referring to ABA approaches which specifically support client autonomy, i.e. trauma-informed behavior analytic approaches; Rajaraman et al., 2022). Similarly, NSSI experts brought up issues of bodily autonomy and the standpoint of a faction of self-advocates who believe it’s their right to change their body how they choose, including through self-injury.

The ethics of autonomy in healthcare-related decision-making is an area of active scholarly discussion (i.e. Halpern, 2023; Ubel et al., 2020). At particular issue is the assessment of an individual’s capacity to make informed decisions. Current guidance for medical professionals of all kinds instructs providers to engage capable adolescents in decision-making about their own healthcare; however, there is little guidance on how to assess adolescent capability (Duncan & Sawyer, 2010). Research indicates providers are susceptible to various biases in their assessments of patient competence, such as being more likely to presume competence if the patient makes what they perceive as the right choice about their treatment (Duncan & Sawyer, 2010).

In individuals with intellectual and developmental disabilities, self-determination is a common phrase to refer to the ability to make decisions about one’s own life, though this is more commonly applied to decisions outside of healthcare. While self-determination is a buzzword in the disability service system, the nuances of its meaning in complex decisions like mental healthcare decision-making are not well-defined. For example, there are multiple theories of autonomy with different implications for the interaction between individuals with IDD and their healthcare providers (as well as third parties who may be involved, such as guardians or caregivers; Lotan & Ells, 2010). Further, there is evidence that the beliefs and intentions of providers about offering and honoring choices may not always align with actual practice; a study by Veverka et al. found that most behavior analysts who were surveyed believed that offering choice is an important component of their practice but encountered barriers to doing so, such as funding and agency policies (2024). Even when social validity measures are in place to assess the acceptability of behavior therapy programs, individuals with IDD themselves (rather than their caregivers or guardians) may be excluded from the social validation process (Hanley, 2010).

Treatment Goals

Members of each group brought up elements of quality of life and/or a harm reduction lens when discussing the goals of treatment for self-injury. Caregivers emphasized family life and the wellbeing of the whole family. This is aligned with qualitative research indicating that challenging behavior negatively impacts the entire family system (Fox et al., 2002). NSSI researchers and clinicians explicitly discussed the phrase harm reduction, which aligns with the addiction model more commonly applied to NSSI than SIB. SIB researchers and clinicians, however, discussed similar concepts with phrases like wraparound services and person-centered planning. Though members of different groups used different words, they shared an implication of considering the broad impact of self-injury- beyond just the behavior itself- and considering treatment goals within the context of a person’s life, including their family and community.

This consensus that treatment for self-injury requires a broad consideration of context is not aligned with the design and function of many current systems of care. In many settings, different professionals are responsible for different aspects of an individual’s care (i.e. a psychiatrist manages medications, a behavior analyst provides behavior therapy) and it is not standard practice to collaborate in care provision. Experiential knowledge suggests an interdisciplinary, team-based approach is needed for effective care provision. Innovative, interdisciplinary models of care coordination are becoming more common in mental healthcare (i.e. Gathright et al., 2016) and guidelines for effective working relationships between behavior analysts and other professionals who may be involved in the treatment of SIB have been developed (Brodhead, 2015). The results of this study support continued implementation of interdisciplinary care models that better incorporate aspects of patient context.

SIB Professional Beliefs in Contrast to NSSI Professional Beliefs

There were numerous differences in how SIB and NSSI professionals in the sample conceptualized cause and treatment. This is unsurprising given the current classification of NSSI and SIB as categorically different behaviors; however, our previous work has elucidated ways that SIB research and treatment may benefit from consideration of the many psychosocial factors that are commonly discussed in NSSI research and treatment (Roberts & Symons, 2023; Roberts et al., 2024). We believe consideration of a broad array of psychosocial factors and the development of treatment approaches that address them is highly relevant to addressing the treatment gap. This may include integrating consideration of psychosocial factors into existing treatment approaches for SIB; for example, applying the movement toward trauma-informed care in applied behavior analysis to SIB (Rajaraman et al., 2022). In this section, we will discuss the translation of NSSI knowledge to SIB treatment, particularly with respect to factors which may have relevance to the SIB treatment gap.

Internal vs. External Functions

In the focus groups, SIB professionals were more likely to default to external functions of self-injury while NSSI professionals were more likely to default to internal functions of self-injury. Beliefs about the function of self-injury (whether based in an evidence-based assessment or not) will likely be highly influential in the treatment provision process, particularly in decision-making about what avenues of treatment are pursued. For example, a SIB clinician who does not consider internal functions of the behavior is unlikely to pursue treatments other than behavior therapy. The risk factors that are common to the NSSI literature and have not been considered for SIB, such as trauma exposure or marginalized identity status, may relate to internal functions that are not considered in decision-making about treatment for SIB because they are underexplored by researchers. A particular avenue for integration between the NSSI and SIB literatures as it relates to function may be for researchers to consider common internal functions of NSSI in relation to emerging research on subtypes of automatically-reinforced SIB, as identified by Hagopian et al. (2015; 2017). For example, it is possible that trauma exposure or emotional regulation processes may have relevance to patterns of responding in a functional analysis or the presence of self-restraint.

Self-Report

Most assessments used in NSSI are self-report and most assessments used in SIB are not. The role of self-report in the treatment provision process is highly relevant. If an individual tells the provider why they self-harm (determines their own function) or what treatment they want to access, the weight the provider puts on self-report will determine its influence on decision-making about treatment.

The role of self-report in treatment decision-making may become complex for individuals with nontypical communication; for example, a clinician may receive self-reports through an augmentative or alternative communication device or a single-word utterance. From a behavioral point of view, some may consider the behavior of SIB itself a form of self-report if it has a communicative function. What is considered self-report and how patient self-report is weighed in clinical decision-making is related to the role of autonomy in treatment; a provider who believes strongly in patient capability and the patient’s right to guide their own treatment would be more likely to give weight to self-report. This may happen in a proxy fashion for SIB, i.e. providers rely on the proxy report of family caregivers in decision-making about treatment for SIB. In that case, an additional layer is introduced in terms of the validity of the proxy report and how it relates to the individual with SIB’s self-report.

Co-morbid Diagnoses

Both types of self-injury are highly likely to occur alongside co-morbid diagnoses. Whether an individual has other mental or physical health conditions may influence their treatment pathway for self-injury. More likely than not, an individual with NSSI will already be receiving treatment within the mental healthcare system, since NSSI is usually conceptualized as a symptom of another mental health condition rather than its own diagnosis (though this may change given the proposed non-suicidal self-injury disorder in the DSM-V; Buelens et al., 2020). An individual with SIB is likely to already be enmeshed in the medical system for other conditions, given that individuals with IDD are significantly more likely than individuals without IDD to have physical health conditions (Cooper et al., 2015); however it is less likely that they are receiving mental healthcare specifically, since there is a well-documented issue of barriers to mental healthcare for individuals with intellectual disabilities (Whittle et al., 2017). These barriers include organizational barriers, transitional barriers, referral barriers, individual-level barriers, and diagnostic barriers (i.e. barriers to the diagnosis of mental health conditions in individuals with IDD; Whittle et al., 2017). Mental healthcare treatment access is especially problematic for individuals with severe IDD, those most likely to engage in SIB (McClintock et al., 2003; Whittle et al., 2017).

Timeline Framing

How clinicians think about the long-term progression of self-injury is likely to influence treatment decision-making. Our analysis described differences in how SIB and NSSI experts think about the progression, or timeline, of self-injury. A SIB clinician who has a view of SIB onset as developmental (i.e. a typical behavior in early childhood that may occur at a different chronological age for individuals with developmental differences) may be likely to forgo treatment with the idea that the behavior will naturally go away when the child reaches a new developmental stage. It’s possible this sort of thinking contributes to the tendency to wait for treatment until crisis-level intervention is needed (see theme Wait Until Crisis in Roberts et al., 2023). Similarly, if a clinician believes the maintenance of the behavior is related to a process of behavioral shaping, they are likely to recommend a treatment of behavior therapy.

Of particular relevance to decision-making is how providers think about the relationship between the risk for suicide and self-injury. It is likely that providers who believe NSSI represents increased risk for suicide (rather than a replacement behavior) would have more urgency in efforts for treatment access. Since suicide risk is not part of the discussion for SIB researchers and clinicians, this sense of urgency would not be relevant to SIB treatment access.

On a broader systems-level, the timeline framing of providers has implications for the development of a less reactive care system. As discussed in the Points of Similarity section, all groups in our study agreed that a more proactive care system is needed. However, early intervention for self-injury would require provider beliefs about the progression of self-injury cases to align with treatment decision-making that happens earlier in the process and does not wait for new developments such as increased behavior severity or developmental maturation.

Family Caregiver Beliefs in Contrast to Professional Beliefs

There were a few key differences in how family caregivers in our study discussed their beliefs about self-injury compared to professionals. Importantly, SIB family caregivers emphasized emotions in a way that SIB professionals did not. As discussed in the Harm Reduction vs. Elimination theme, professionals tended to focus on the frequency of self-injurious behavior when they discussed treatment goals. In contrast, family caregivers did not tend to directly express a wish for the behavior to stop or reduce; rather, they focused on calming down, which implies that the self-injury stops but also implies lowered arousal and emotional stability. Family caregivers repeatedly described the goal of treatment in emotion-based words: “relieve the anxiety,” “chill,” “calm,” “ease the tension,” “settle them down.”

An emotion-based lens is much more common to frames of NSSI than SIB. In some ways, it seems the family caregivers had beliefs that combined insights from the SIB and NSSI sides. In addition to emotion-based thinking, family caregivers cited both internal and external functions of the behavior in their discussions of cause (i.e. trauma and social contingencies). This finding is especially interesting given that family caregivers are likely unaware of the context of self-injury research and treatment as siloed depending on whether an individual does or does not have IDD. Thus their thinking is probably not biased by this context (though it probably is influenced by the providers they interact with, who would be more likely to think in a behavioral frame if they were trained as SIB clinicians).

Finally, as discussed in the Points of Similarity section, all groups in our study discussed how self-injury treatment must go beyond the behavior itself. However, family caregivers emphasized the impact on the family in a way that professionals did not. Family caregivers emphasized beliefs aligned with family systems theory: self-injury impacts the whole family, and the whole family impacts self-injury. This suggests a need for family-level interventions for SIB (Roberts & Symons, 2023).

Limitations and Future Directions

A primary limitation of the family caregiver interview dataset is that we did not conduct interviews with the individuals who SIB themselves, so our information about the SIB experience was delivered by proxy. A future direction, especially considering the importance of autonomy in treatment and to apply this principle to research as well, would be to conduct adaptive interviews with individuals who engage in SIB as well as to interview individuals who engage in NSSI and their caregivers.

Neither the family caregiver interviews nor the expert focus groups had a representative sample. Both datasets were collected with samples of convenience. This means that we cannot make population level claims; for example, we do not know if the consensus in our samples around the nature of self-injury as multicausal and individualized is true of all experts in self-injury. Further, our research design and analytic approach were not suited to making claims about frequency and proportion within the sample. Though we sometimes reference proportion with words like “many” or “a few,” this is intended to give a general sense to readers rather than make claims about the populations of family caregivers or researchers and clinicians. The qualitative design of this study was intended to explore initial belief systems among groups that have not been previously compared in this way. Further research with quantitative methods and representative sampling techniques would be useful to expand this study’s initial findings, such as in a mixed method sequential exploratory design which builds upon the initial qualitative inquiry of this study (Creswell & Clarke, 2017).

Implications for Practice

Even though this is an initial exploratory study, the results have immediate implications for practice. Results from this study indicate that professionals treating or studying self-injury can benefit from reflection and awareness of potential biases in their thinking and decision-making related to their training, disciplinary perspective, or assumptions, and this can be facilitated by the opportunity to participate in interdisciplinary discussions. Many participants expressed they enjoyed and felt they learned from participating in the study: “having ways to really connect and learn from each other is so important.” Though we didn’t examine this directly, it is possible this benefit led to positive changes in the participants’ professional practice.

Considering family caregiver beliefs about cause and treatment goals can support family-centered care and implementation of clinical recommendations. For example, it likely that a caregiver is more likely to maintain treatment fidelity if their beliefs or concerns are heard, understood, and addressed by a clinician, such as hesitancy to try more invasive treatments. The family is more likely to receive family-centered care if the whole family’s needs are considered, rather than only the needs of the individual with IDD.

Conclusion

The prevalence and potentially devastating impact of SIB in IDD will not be reduced by the development of new treatment approaches alone. It is vital to consider the process of treatment access and the many potential influences, including the beliefs of individuals with personal or professional lived experience, on how and if treatment is accessed and provided effectively. This study and the previous study (Roberts et al., 2023) have begun to demonstrate the complexity of the treatment access process in SIB. This process is made more complicated by the lack of clarity about the construct of SIB and how it is viewed categorically differently from NSSI. What is the nature of SIB and how do clinicians make treatment decisions for and with individuals with SIB and their caregivers? More research is needed to illuminate this complexity within a context that is deeply influenced by historical and disciplinary divisions in how self-injury is understood in people with and without IDDs. This context, as well as the unique perspectives of different groups involved in the treatment process, must be considered in further research on the treatment gap in SIB in IDD. Without a depth of descriptive knowledge of this issue, mental healthcare disparities for individuals with intellectual and developmental disabilities will persist (Hall & Kurth, 2019).