These authors contributed equally to this work.
Pacific Analytics, the firm with which Kyle VanDuser and Emma Donaldson were affiliated, received payment from the treatment provider to conduct the longitudinal outcomes study. Dustin Wagner and Avonlea Ware held leadership roles with the treatment provider during the study. The authors report that the independent research team collaborated with the treatment provider for publication decisions.
This phenomenological qualitative study explored the lived experience of caregivers who had a child suffering from self-harm, suicidal ideation, or a suicide attempt. The study followed caregivers from their loved one’s intake at a residential mental health treatment center to one-month post-discharge. Caregivers (n = 17) participated in interviews conducted at intake, discharge, and approximately one-month post-discharge. At intake, caregivers commonly described persistent fear and anxiety, financial strain, and a desire for greater peer support from others facing similar circumstances. Following discharge, caregivers reported perceived improvements in communication alongside ongoing concerns related to continuity of care. The findings highlight the importance of supporting caregivers not only during a young person’s treatment but also during the transition back to the community.
Suicide has risen to be the second leading cause of death for 15 to 24 year olds. Nearly 20% of highschoolers think about suicide and approximately 9% have made an actual attempt. The effects of suicide are far reaching. It is estimated that 115 people are exposed to a single suicide ([
Research has demonstrated that caregivers to those who engage in deliberate self-harm experience significant emotional challenges including decreased social support, poor communication within the family, and lower levels of overall well-being ([
The purpose of this qualitative inquiry is to understand the lived experience of caregivers who have a child suffering from depression. More specifically, the effect suicidal ideation, self-harm, and suicide attempts have on caregivers. Further, this study seeks to understand the caregiver’s experience from entry into a residential behavioral health facility through one month post discharge. Ultimately, the aim of the study is to help inform practice and provide a resource to future caregivers who have children struggling with suicidal ideation, self-harm, and suicide attempts.
This qualitative research inquiry sought to answer the following questions:
1) What is the lived experience of caregivers with children suffering from depression?
2) What was the lived experience of caregivers who sent their children to a residential treatment center?
3) What (if any) perception of change occurred after participation in treatment within the family dynamic?
This research follows the framework of Murray Bowen’s Family Systems Theory, also known as Bowen Theory ([
This study employed a phenomenological qualitative design. The purpose of the phenomenological approach is to illuminate the specific, to identify phenomena through how they are perceived by the actors in a situation. In the human sphere this normally translates into gathering “deep” information and perceptions through inductive, qualitative methods such as interviews, discussions and participant observation, and representing it from the perspective of the research participant(s). Phenomenology is concerned with the study of experience from the perspective of the individual, “bracketing” taken-for-granted assumptions and usual ways of perceiving. Epistemologically, phenomenological approaches are based in a paradigm of personal knowledge and subjectivity, and emphasis the importance of personal perspective and interpretation. As such they are powerful for understanding subjective experience, gaining insights into people’s motivations and actions, and cutting through the clutter of taken-for-granted assumptions and conventional wisdom. With this study, we are seeking to understand the lived experiences of parents with children suffering from depression. More specifically, the research inquiry sought to understand the effect suicidal ideation, self-harm, and suicide attempts had on caregivers.
The research transpired through a residential treatment center across their northern California and southern California facilities. The research site has over 200 active employees and provides teens, young adults and their families with meticulously thought-through, Joint Commission-accredited mental health treatment in safe, luxurious, residential settings. The research site serves individuals between the ages of 12 - 26 who experience moderate to severe mental health issues. The research site utilizes in-depth processes for assessment, treatment, and aftercare to best meet the unprecedented mental health concerns confronting today’s youth. Utilizing a curated blend of traditional, evidence-based, and progressive therapeutic practices, the research site works closely with clients and their families to treat issues that include but are not limited to anxiety, depression, grief and loss, mood disorders and trauma. The research site treats the socio-emotional underpinnings of behaviors rather than simply focusing on behaviors themselves. As such, the research site does not use point systems, phase systems or other punitive techniques. Rather, the research site approach focuses on the whole individual, and the unique needs of each client and family served. The research site prioritizes lasting efficacy as a cornerstone of its treatment philosophy, which empowers its young clients to build and hone the skills they need to lead meaningful, productive lives, long after they complete the treatment program.
A phenomenological framework requires a relatively homogenous group of participants ([
Upon admission to research site, caregivers were asked if they wanted to participate in a study examining the affect their loved one’s struggle with mental health was having on them. Caregivers who opted to participate completed an informed consent document which outlined the purpose of the study and procedures. Caregivers were then provided with a scheduling link for the initial intake interview. In total, 17 caregivers participated in the study which represented 11 families. The initial design of the study sought to schedule an interview at intake, at discharge, and one-month post. However, due to scheduling issues, some interviews with participants N = 3, only transpired at intake and one month post discharge from the research site. In those instances, the discharge questions and one month post discharge questions were asked during the same meeting.
2.3.1. Participant Characteristics and Interview Completion
The 17 caregivers represented 11 families and included mothers and fathers. No other caregiver relationship was observed. The young people were aged 16 to 23 years old and were admitted with depression accompanied by suicidal ideation, self-harm, and/or a history of suicide attempts. All 17 caregivers completed an intake interview, however only 14 caregivers, 9 mothers and 5 fathers, completed separate discharge and one-month post-discharge interviews. The remaining three caregivers, 3 mothers, completed an intake interview and a combined interview one month after discharge, during which both the discharge and one-month questions were asked.
2.3.2. Analytic Unit
The family was the primary analytic unit (n = 11), rather than each caregiver being treated as a fully independent case. When more than one caregiver from the same family participated, their interviews were retained as distinct perspectives during initial coding and then compared within a family-level case summary. Overlapping descriptions were treated as shared evidence about one family experience when themes were compared across families, while differences between caregivers were retained as divergent perspectives. Themes were therefore developed across the 11 family cases rather than by treating all 17 caregiver accounts as independent observations.
In this phenomenological study, the major data gathering method involved in-depth interviews with participants. The purpose of a phenomenological interview is to describe the meaning of a phenomenon that several individuals share ([
Interview Procedures
Kyle VanDuser, the study’s lead researcher and an investigator with Pacific Analytics, conducted the interviews through HIPAA-compliant video conference software. As this study occurred during the tail-end of the pandemic, video conferencing was preferred by families. Interviews lasted approximately 45 minutes to 1 hour. With participant permission, interviews were recorded and transcribed verbatim through the video conferencing software. The transcripts were checked against the recordings. The three semi-structured interview guides were related but not identical. A common set of questions examined caregiver experiences and family relationships across time points; intake questions focused on experiences before admission, discharge questions focused on caregivers’ perceived changes during residential treatment, and one-month questions focused on experiences after return home and whether perceived changes had continued, changed, or diminished. The same lead interviewer conducted the serial interviews whenever scheduling permitted.
The study employed
Ensuring credibility is arguably one of the most important aspects of any research inquiry. Credibility helps build trustworthiness in the findings, which in turn, allows practitioners to utilize findings in professional practice ([
Relationship with the Treatment Provider and Use of Records for Triangulation
Pacific Analytics was paid by the treatment provider to conduct the longitudinal outcomes study. The lead interviewer and primary research team were affiliated with Pacific Analytics, while two coauthors held leadership roles with the treatment provider and facilitated study implementation and participant coordination. To manage this relationship, provider-affiliated staff could offer factual or contextual feedback during peer examination but did not conduct primary coding or determine the final themes. The final publication decisions remained in a collaborative effort with the independent research team and treatment provider. Client files, therapist notes, and standardized mental health assessments were consulted only to verify chronology and contextualize interview accounts; they were not independently coded and did not contribute to code or theme development. Participants’ written consent specifically authorized access to and use of these records for triangulation.
The lead researcher consulted with Advarra, a private human subjects Institutional Review Board (IRB), to determine if the study needed formal oversight. All human-related procedures were performed in accordance with the Declaration of Helsinki and IRB ethics regulations. Using the Department of Health and Human Services (DHHS) regulations at 45 CFR 46, Advarra IRB determined that the research project did not meet the DHHS definition of human subjects research under 45 CFR 46 and, therefore, did not require IRB oversight. Specifically, data presented in the findings are for an undisclosed recovery program’s institutional improvement, anonymized, and aggregated in a way that safeguards any personally identifiable information. While IRB oversight was not deemed a requirement, written consent was ascertained throughout the data collection process.
The data coding and analysis yielded major themes across families. Findings are presented for intake and for the post-discharge period. Intake themes were a continuous state of fear and uncertainty, financial challenges, and a need for peer group support. Post-discharge themes were caregiver-perceived changes in communication and issues with continuity of care. Discharge and one-month observations are identified separately where the time point was documented. Because three caregivers received both sets of questions in one follow-up interview and the analysis did not treat the time points as fully separate datasets, the post-discharge findings should not be interpreted as evidence that treatment caused change or that perceived changes were sustained for all families. An explanation of each theme and support using
3.1.1. Continuous State of Fear and Uncertainty
Caregivers expressed a continuous state of fear prior to their loved one entering residential treatment. In many ways, caregivers put their life on hold to help prevent their loved one from engaging in self harm or attempting to complete suicide. One father noted “
3.1.2. Financial Challenges
The decision to have a loved one participate in a residential treatment center is a major financial cost for most families. The cost for 35 days of treatment at the research site is $65,000. For the families that can afford treatment, they see it as an investment, as stated by one parent, “
Financial challenges were not just associated with cost of treatment, but also traversed to employment issues due to care-taking responsibilities. Caregivers had to take extensive time off work or were forced to leave work entirely. One mother stated: “
3.1.3. Need for Peer Group Support
Another reoccurring theme among families was the importance of support from other caregivers with a similar experience. Caregivers were concerned that their child’s suicidal ideation and self-harm are so personal and potentially disturbing to hear that they are hesitant to disclose this to their typical support system. One father stated, “
3.2.1. Caregiver-Perceived Changes in Communication
At discharge and/or the one-month follow-up, caregivers who participated in family therapy and other clinician recommendations described perceived changes in how they communicated with their loved one. These accounts reflect caregivers’ interpretations rather than a causal estimate of treatment effects. One mother reflected on her interactions with her daughter and stated:
“
Caregivers also described feeling better able to respond to their child’s suicidal ideation and impulses to self-harm. One mother attributed part of the perceived change in her approach to what she learned during family therapy. The mother stated:
“
Caregivers described perceived communication changes extending beyond conversations about self-harm and suicidal ideation to other aspects of the relationship. One father believed that reframing his responses from evaluative to more open and trust-focused made it easier for his daughter to discuss substance use. The father stated:
“
At the discharge time point, one mother began to cry while describing renewed hope for her future relationship with her daughter. This account represents an observation at discharge and does not, by itself, demonstrate that the perceived change was sustained one month later. The mother stated:
“
Some caregivers perceived broader changes in relationships within the family. The research site grounds its work with families on Dr. Thomas Gordon’s Parent Effectiveness Training (PET) model and asks caregivers to read PET while their loved one is in residential care. Caregivers who read the book and participated in clinician-led training described perceived changes that extended beyond the relationship with the young person receiving treatment. One mother reflected:
“[
3.2.2. Issues with Continuity of Care
A major theme that appeared across nearly all families was issues related to continuity of care. The caregivers in the study expressed their frustration with the insurance agencies hindering the continuity of care for their loved one. The caregivers felt it served as a negative contributing factor to their loved one’s mental health. One father stated “
One caregiver requested there be a mandatory transitional program. The caregiver stated “
Bowen theory may offer one tentative lens for interpreting the relational themes in these findings. Caregivers’ fear and hypervigilance occurred in the context of acute suicide risk and may represent understandable efforts to maintain safety; these responses should not be pathologized or treated as direct evidence of an inability to differentiate self. From a family-systems perspective, the accounts may suggest that sustained crisis affected the emotional functioning of the family as a whole. Caregivers attributed perceived improvements in communication and family relationships to changes in the young person, family therapy, and participation in the residential program. However, the qualitative design cannot establish that treatment caused these changes. Caregivers described early hope and communication shifts at discharge, while the combined analysis of discharge and one-month data limits conclusions about whether those changes were sustained one month after discharge.
Well known American Psychologist and a founder of the humanistic approach, Carl Rogers, highlights how the client-therapist relationship is one of the most important aspects of therapy. Therapists must first begin to build a relationship with the client to help facilitate the process of psychological growth ([
As evident from the findings, there are frequent lapses in care for loved ones struggling with their mental health. Not only are there lapses in care, but there are challenges with insurance covering the necessary costs for treatment. When costs can’t be picked up by insurance, the out-of-pocket costs can make receiving care near impossible. Even when families receive full insurance authorization or have readily available funds to cover the cost of care, there is still the issue of finding available space to match the level of care needed. In some rural parts of the country, appropriate treatment options are not readily available. From the caregiver’s perspective, frequent breaks in care hinder the perceived progress of their loved one suffering from depression.
While the findings are limited in scope and generalizability due to the small sample, they raise attention to the current model of mental health treatment for individuals who experience suicidal ideation, active self-harm, and suicide attempts. The model of abrupt transition between the stages of treatment hinders the therapeutic progress made by individuals. As noted in the findings, it takes time to build the therapeutic relationship for psychological growth. Caregivers and clients alike request the ability to have continued access to their therapists. At each stage of care, clinicians have full caseloads of incoming and current clients. Clinicians are not able to continue seeing discharging clients. The current mental health model for treatment does not support the possibility of ongoing relationships between clients and clinicians.
This qualitative inquiry has notable limitations. The study is bound by the research site. There is variability amongst residential treatment centers in their ability to help both clients and caregivers, treatment approach, and case load management. As such, the lived experiences of families going through treatment program are bound by the research site. Further, the study had a sample size of 17 and cannot be generalized to the millions of caregivers who have a loved one suffering from depression, and subsequent suicidal ideation, self-harm, and suicide attempts. Additionally, discharge and one-month interviews were not analyzed as fully separate datasets, and three caregivers received both sets of questions during one interview. The study therefore cannot determine whether perceived communication changes observed at discharge were sustained one month later for all families.
This qualitative study drew upon a phenomenological design to understand the lived experience of caregivers who have a child suffering from suicidal ideation, self-harm, and suicide attempts. Interviews served as the primary means of data collection. Interviews transpired at intake, discharge, and one month post discharge. In total, 17 caregivers participated in the study. Findings were separated between intake and post-discharge themes. Major themes that caregivers reported at intake included being in a constant state of fear and anxiety, financial challenges, and a need for peer group support. Post-discharge themes included caregiver-perceived changes in communication and issues with continuity of care. These findings reflect caregivers’ perceptions; they do not establish that treatment caused the reported changes or that perceived changes were sustained one month after discharge for every family.
This study does not call for an entire change to the mental health care model. Rather, it directly raises attention to the model itself and poses challenging questions. One question, is the current mental health model of hard transitions between treatment stages effective? How do we assess the effectiveness of the current model? Should the stages of treatment be a public service paid for through tax dollars, or, should it be privately run? As long as we continue to have deaths by suicide there will be a constant need to assess the effectiveness of the mental health treatment model.
We would like to acknowledge Paradigm Treatment for the support of this study, and the families that participated.
This study was reviewed by Advarra Institutional Review Board (IRB), which determined that the project does not meet the definition of human subjects research under 45 CFR 46 and therefore does not require IRB oversight. In accordance with this determination, the requirement for IRB review and approval was waived. All procedures were conducted in accordance with applicable ethical guidelines and regulations, including the Declaration of Helsinki.
Pacific Analytics was paid by the treatment provider to conduct the longitudinal outcomes study. The provider supported study implementation and participant coordination. The independent research team retained responsibility for analysis and manuscript preparation.
Kyle Van Duser designed the study, performed the interviews, and wrote up the findings; Emma Donaldson continued writing the findings and prepared the manuscript for publication; Dustin Wagner and Avonlea Ware oversaw the study implementation and coordinated with participants.
The anonymized data are available from the authors upon reasonable request.
*These authors contributed equally.
#Corresponding author.