Challenges, rewards, and lessons learned from family and community caregivers of individuals with serious mental illness and cancer.

PURPOSE: The caregiving experience for individuals with serious mental illness (SMI) and cancer has not been explored in previous cancer caregiver research. This study assessed the challenges, rewards, and lessons learned from this unique population of caregivers. METHODS: We conducted qualitative interviews with 13 caregivers (9 family caregivers, 4 community caregivers) of patients recently diagnosed with head and neck, breast, lung, or gastrointestinal cancer and SMI who participated in a single-arm pilot of person-centered collaborative care. Interviews were transcribed and analyzed using inductive and deductive approaches. Investigators developed a coding scheme based on the interview guide. Interviews were double-coded and themes were identified via an iterative consensus process consistent with a content analysis framework. Comparisons between community and family caregiver experiences were explored. RESULTS: Caregiving challenges included the impact of mental health symptoms on timely diagnosis, treatment, and coordination of care and lack of resources specific to SMI and cancer caregiving. Family caregivers valued increased closeness and meaningfulness in their relationships. Family and community caregivers found it rewarding to be part of a person-centered care model that was effective for the patient. Lessons learned included tending to their own needs too, and the importance of advocacy and a team approach to decrease mental health stigma and coordinate care. CONCLUSIONS: This study highlights the complex challenges and rewards experienced by family and community caregivers for individuals with cancer and SMI. Tailored approaches to support caregivers as individuals are needed. Additional research on community caregiver-patient dyads and non-spousal family caregiver-patient dyads are needed to inform intervention development.

Study protocol for a randomized trial of bridge: Person-centered collaborative care for serious mental illness and cancer.

BACKGROUND: Individuals with serious mental illness (SMI) experience inequities in cancer care that contribute to increased cancer mortality. Involving mental health at the time of cancer diagnosis may improve cancer care delivery for patients with SMI yet access to care remains challenging. Collaborative care is a promising approach to integrate mental health and cancer care that has not yet been studied in this marginalized population. METHODS/DESIGN: We describe a 24-week, two-arm, single-site randomized trial of person-centered collaborative care (Bridge) for patients with SMI (schizophrenia, bipolar disorder, or major depression with psychiatric hospitalization) and their caregivers. 120 patients are randomized 1:1 to Bridge or Enhanced Usual Care (EUC) along with their caregivers. Researchers proactively identify individuals with SMI and a new breast, lung, gastrointestinal, or head and neck cancer that can be treated with curative intent. EUC includes informing oncologists about the patient's psychiatric diagnosis, notifying patients about available psychosocial services, and tracking patient and caregiver outcomes. Bridge includes a proactive assessment by psychiatry and social work, a person-centered, team approach including collaboration between mental health and oncology, and increased access to evidence-based psycho-oncology care. The primary outcome is cancer care disruptions evaluated by a blinded panel of oncologists. Secondary outcomes include patient and caregiver-reported outcomes and healthcare utilization. Barriers to Bridge implementation and dissemination are assessed using mixed methods. DISCUSSION: This trial will inform efforts to systematically identify individuals with SMI and cancer and generate the first experimental evidence for the impact of person-centered collaborative care on cancer care for this underserved population.

Bridge: Person-Centered Collaborative Care for Patients with Serious Mental Illness and Cancer.

BACKGROUND: Individuals with serious mental illness (SMI) experience increased cancer mortality due to inequities in cancer treatment. Psychiatric care at cancer diagnosis may improve care delivery, yet models for integrating psychiatry and cancer care are lacking. We assessed the feasibility and acceptability of a person-centered collaborative care trial for SMI and cancer. SUBJECTS, MATERIALS, AND METHODS: We developed the Bridge intervention for patients with SMI (schizophrenia, bipolar disorder, and severe major depression) and cancer. Bridge includes proactive identification of SMI, person-centered care from a psychiatrist and case manager, and collaboration with oncology. We conducted a 12-week, single-group trial in patients with SMI and a new breast, gastrointestinal, lung, or head/neck cancer. We assessed the feasibility of patient identification, enrollment and study completion; evaluated acceptability and perceived benefit with exit interviews with patients, caregivers, and oncology clinicians; and examined change in psychiatric symptoms with the Brief Psychiatric Rating Scale (BPRS). RESULTS: From November 2015 to April 2016, 30/33 eligible patients (90.9%) enrolled, and 25/29 (86.2%) completed assessments at all timepoints, meeting feasibility criteria. Of 24 patients, 23 (95.8%) found meeting with the psychiatrist helpful; 16/19 caregivers (84.2%) shared that Bridge addressed key caregiving challenges. Oncology clinicians evaluated Bridge as "very" or "most" useful for 94.3% of patients. Exit interviews with all participant groups suggested that Bridge fostered patient-clinician trust, increased access to psychiatric treatment, and enabled patients to initiate and complete cancer treatment. Psychiatric symptoms on the BPRS improved from baseline to 12 weeks. CONCLUSION: Bridge is a feasible and acceptable care delivery model for patients with SMI, their caregivers, and oncology clinicians. Randomized trials are warranted to assess the efficacy of improving cancer outcomes in this underserved population. IMPLICATIONS FOR PRACTICE: Serious mental illness affects 13 million U.S. adults who experience increased cancer mortality. To improve outcomes, new models of integrated oncology and mental health care are urgently needed. This study found that it was feasible to identify, enroll, and retain patients with serious mental illness and a new cancer in a trial of integrated mental health and cancer care (Bridge). Patients, caregivers, and oncologists reported that Bridge facilitated the initiation and completion of cancer care. Randomized trials are warranted to investigate the impact on cancer outcomes. Trial procedures may inform consent, engagement, and trial retention for patients with mental illness.