Challenges with Initial Engagement
When a patient was identified in the hospital as potentially having made a suicide attempt, every effort was made to establish contact while the patient was still in the hospital. After patients had been discharged home, they were difficult to contact, and recruitment efforts often faltered. Medical records were often out of date, displaying incorrect or out-of-service phone numbers and addresses at which the patients had not resided for years. In order to address this problem, study staff completed a location interview that included information on family and friends with whom the participant had contact as well as care providers, parole officers, shelters used by the participant, and other means of tracking the participant. This interview was conducted at each assessment to keep the information as current as possible.
Once patients had been contacted, several issues served as obstacles in obtaining informed consent. For example, finding an appropriate incentive for participation in extensive research interviews was a challenge. Some patients were interested in receiving the free therapy and/or financial compensation offered by the study, but on the other hand hesitant to enter into a research study. Some individuals conveyed an air of suspicion toward research in general, expressing reluctance to, in their words, be “lab rats” in our “laboratory experiment.” Thus, care needed to be taken to minimize the chances of coercion or participation strictly for the initial financial compensation. Study personnel emphasized the commitment required for participation (attending treatment and/or follow-up evaluation sessions regularly). In addition, study personnel read the consent form aloud to the prospective participants and quizzed them on their understanding of what the research participation entailed, their rights as participants, and their chances of being randomized into the therapy condition. In addition, care was taken not to obtain consent from patients if they were heavily medicated or too emotionally distraught to give informed consent. In such cases, study personnel called or returned to the hospital after some time had elapsed and the patient was stabilized.
Some problems were encountered when patients were assigned to the usual care condition. The prospect of nocost mental-health treatment often motivated patients to participate in the study. Although study personnel explained that treatment assignments were completely random and generated by a computer, when some patients found out that they had not been assigned to therapy, they expressed a range of negative emotions, from sadness to frustration and anger. Some indicated that being assigned to the control condition reinforced negative beliefs about themselves and the world around them, and the research team became concerned that this aspect of the research might reinforce feelings of hopelessness among the participants in this condition.
In the clinical trial, the problem was addressed by offering the services of “study-case managers.” Case managers served many functions, as outlined below, but one primary function was to provide support for participants who did not receive active treatment. Case managers worked to help participants get treatment outside of the study and contacted participants throughout the follow-up period by mail and by telephone. Study participants in both conditions of the clinical trial reported a high degree of satisfaction with the case-management component of the study, and our research team became convinced that the case-management component is a crucial element of any effort to intervene with this population.
Other problems were encountered when attempting to complete the baseline assessment. If the evaluation was conducted on an inpatient unit, some patients were too heavily medicated and too somnolent to participate, and interviews had to be postponed until they were more lucid. The intake interview required about 2 hours to complete, and many patients experienced difficulty staying focused for that length of time because of the effects of both depressive symptoms and medications. Another significant problem was some patients’ tendency to disaffirm answers regarding their current suicide ideation or substance use in order to speed up the interview. In order to avoid any type of response bias as well as to counteract the effect of poor concentration, interviewers in the clinical trial were trained to ask open-ended questions as well as multiple follow-up questions. Increasing the amount of participation by the patient helped increase focus and decrease false responses.
Challenges with Tracking and Follow-Up
Difficulty was encountered in the pilot study tracking patients through the follow-up phase of the research as well as maintaining a regularity of sessions with patients in therapy. Locating patients once they had been discharged from the hospital was generally difficult and time-consuming. Many of the depressed patients in the study had failed to maintain contact with friends or relatives, and when they were discharged from the hospital, they often found themselves without a place to live. In general, over the course of the research study, participants tended to be transient, with sporadic contact with friends and family. One of the methods used to target this problem in the final study was collecting a greater number of contacts for the participants. Upon providing informed consent, all participants were asked to provide their contact information as well as information of at least two friends or family members whom they would consent to be called about their whereabouts. These numbers were then verified prior to their entrance into the study, and contacts were asked to give permission to be contacted periodically if the patient could not be reached by other means. Generally, within appropriate bounds of confidentiality, rapport was established between the research team and the participant’s relatives and friends, greatly improving the ability to contact patients. Unless the participant signed a release allowing for more detailed information to be provided, all contacts were simply told that the study personnel were calling from the university to set up or discuss meetings with the patient. Additionally, the contact problem was improved in the final study by the use of a community voicemail system. Many participants in the study did not have their own phone, and messages communicated via friends and family were frequently not passed on. In the final trial, patients without stable contact information were given a voicemail box in which they recorded an outgoing message and could call from any phone to hear incoming messages. This aided in communication with the study as well as family and potential employers, and was extremely popular with the patients.
Case managers also played a large role in the successful follow-up of participants in the final study. Each patient, regardless of treatment condition, was followed throughout the study by his or her case manager, who kept in touch with the patient on a weekly or monthly basis by phone or mail. At each contact with the patient, their location and contact information was verified. Case managers also sent participants birthday and holiday cards. Participants reported that they greatly appreciated this contact and found it to be very beneficial. Many came to view the study as an important aspect of their life, and study staff were considered a trusted resource if they found themselves in crisis.
Because of the high incidence of substance abuse among our participants (68% were diagnosed with substance abuse or dependence), many were discharged from the hospital into rehabilitation programs or entered rehabilitation during the course of follow-up. When this occurred there were obstacles to conducting assessments with patients, because of confidentiality or treatment policies at the treatment programs. Several times study participants contacted us from the rehabilitation site to express willingness to do a follow-up interview over the phone, but it was not allowed by their facility. The same was true for patients who wished to attend sessions or follow-ups with study staff in person.
Similar problems occurred when study participants entered a homeless shelter. Homeless shelters appropriately keep client records confidential, and we were unable to locate patients who entered the system unless they contacted us. This was especially a problem when attempting to locate female study participants with children. When study staff became aware that study participants were planning to enter the shelter system, they provided the participants with multiple business cards with our name and phone number and urged them to call as soon as they were settled. Participants were also provided subway tokens to drop by the office when they were able to do so. This improved attendance, but future suicide research would be enhanced by collaboration with multiple treatment and service facilities.
Challenges with Therapy Attendance
Many patients were reluctant to commit to treatment or to establish treatment goals, a pattern not unusual for depressed individuals. Regular attendance of psychotherapy sessions was often difficult for study participants. At times, their psychopathology was characterized by impulsivity and an inability to use available supports and community resources effectively. Rather than going to outpatient services (or contacting study staff), the hospital emergency department was often a first point of contact when they experienced physical or emotional distress. Avoidance was also an important clinical issue to consider. Many patients reported that they would avoid treatment sessions because they did not want to talk about the problems that had led up to their suicide attempt. Furthermore, re-engagement could be difficult after patients missed several consecutive therapy sessions because of feelings of guilt or awkwardness about having missed appointments with their therapist.
Such information was routinely synthesized into the conceptualization of the patient, but it was also crucial that therapists remained mindful of their own reactions to their patients. It would be easy to dismiss a noncompliant patient as “unmotivated” and to decrease efforts to engage them, but such interpretations of therapy-interfering behaviors did not fully capture the complexity of the patients’ experiences. Many of the patients in our study led very chaotic and unpredictable lives, and they experienced many genuine, practical barriers to regular attendance of therapy sessions. Because of the transience and unpredictability of their lifestyles, patients would often lose our contact information or forget appointments. It was also not uncommon for something unexpected to happen that precluded attendance at the last minute, such as unpredictable work schedules and childcare difficulties. Initially some patients also had difficulty understanding directions to their appointment or navigating public transportation if our center was not in a part of town they generally visited. In addition, because some cultural and familial values do not support help-seeking behaviors, patients could not count on help from their families or friends for childcare or transportation to appointments, and at times they may have been discouraged from seeking treatment at all. Furthermore, individuals who live in poverty often find themselves in the position of prioritizing their most immediate needs. If they were given a subway token to attend therapy, but had a more pressing need to use the token to attend a meeting with a parole officer, housing coordinator, or social services benefits coordinator, it was not uncommon for them to do so and miss the appointment with the therapist.
Based on these lessons learned in the pilot study, several strategies were adopted in the clinical trial to increase therapy attendance. The first treatment session was conducted in the hospital whenever possible in order to establish rapport and maximize the likelihood of patients transitioning to sessions in our office. Patients were given explicit verbal and written directions to our office, including maps and customized public transportation routes. Case managers also made reminder calls both the day before and the day of appointments and worked with patients to address any barriers that might prevent them from attending. In addition, more explicit descriptions were given to patients about their expected role in therapy. Therapists were encouraged to keep one regular weekly time for each patient, so that even if appointment cards were lost, patients would might recall that were due to come in every week at the same time. For patients with inconsistent work schedules, therapists were encouraged to have a set weekly phone conversation and schedule appointments week-by-week during this call. And, patients were not discouraged from bringing their children to the office when necessary.
Nevertheless, despite the implementation of these strategies, additional flexibility was necessary until patients became accustomed to attending therapy regularly and were able to problem solve effectively enough to make their appointments. Attendance was boosted in the final study by having therapists on the full-time staff so that patients could be seen whenever they were came into the center. Mindful of the genuine barriers and difficulties faced by the clients, therapists worked to balance impressing upon patients the importance of attending regularly while validating patient feelings and circumstances. An important part of the treatment protocol was an emphasis anticipating obstacles to attending appointments and problem-solve how to handle them. This aspect of treatment may have served to help patients learn new ways of coping with practical problems and prevent such problems from snowballing into a crisis.
Summary and Integration
The current paper describes problems encountered in implementing a randomized controlled trial with urban suicide attempters. Problems were encountered in many areas, including difficulties with attendance and severe financial and social problems that led to the absence of a fixed residence or social support network. Overall, in terms of treatment implementation, the most successful step taken to increase attendance in the final study was to work with each therapy patient as an individual. Therapists in the clinical trial were encouraged to be flexible and involved with the patient, and most became the patient’s first point of contact when any crisis arose. Such availability is extremely difficult to achieve in community mental health settings, and Ghahramanlou-Holloway, Stirman, Brown, and Salsman (2008)
described strategies described to increase attendance in therapy in effectiveness trials based in community-based mental health agencies.
Our experience to date suggests that treatments may be improved if clinicians in community mental health settings were able to implement a more flexible treatment model. For instance, it may be beneficial if, early in treatment, high-risk patients were able to go into the clinic if they were in need of support or (nonemergency) intervention without an appointment and wait for a slot in the therapist’s schedule (either when they are free or when the therapist has a cancellation or missed appointment). Therapists could emphasize that when the patient keeps his or her scheduled appointment time, their waiting time would be decreased, but that that it is better to reach out to the therapist than to not attend treatment at all. Another possible strategy for high-risk patients such as those who recently attempted suicide is implementing a walk-in clinic. Here, a small team of therapists make themselves available during a few hours per week or when they have missed appointments throughout the day. In all cases, one of the goals of treatment is to assist the client to develop the strategies and skills necessary to attend regularly scheduled sessions – which is only possible if the high-risk patient is suitably engaged in the first place. In our experience, flexibility is the key to engagement.
Problems and obstacles are likely to be present when conducting any longitudinal research with this or any similar population, and researchers should be aware of such problems and anticipate them prior to beginning their study in order to maximize patient retention and subsequent validity. Although, when working with high-risk patient populations, many challenges will remain despite the most thoughtful efforts to reduce barriers to attendance, our experience suggests that working to meet the needs and realities of study participants’ lives can result in better retention and better outcomes.