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Background: Patients who undergo the complex series of transitions from the hospital to a skilled nursing facility (SNF) back to home represent a unique patient population with multiple comorbidities and impaired functional abilities. The needs and outcomes of patients who are discharged from the hospital to SNF before returning home are understudied in care transitions scholarship., Objective: To study the patient and caregiver challenges and perspectives on transitions from the hospital to the SNF and back to home., Design: Between 48 h and 1 week after discharge from the SNF, semi-structured interviews were performed with a convenience sample of patients and caregivers in their homes. Within 1 to 2 weeks after the baseline interview, follow-up interviews were performed over the phone., Participants: A total of 39 interviewees comprised older adults undergoing the series of transitions from hospital to skilled nursing facility to home and their informal caregivers., Main Measures: A constructionist, grounded-theory approach was used to code the interviews, identify major themes and subthemes, and develop a theoretical model explaining the outcomes of the SNF to home transition., Key Results: The mean age of the patients was 76.6 years and 64.8 years for the caregivers. Four major themes were identified: comforts of home, information needs, post-SNF care, and independence. Patients noted an extended time away from home and were motivated to return to and remain in the home. Information needs were variably met and affected post-SNF care, including medication management, appointments, and therapy gains and setbacks. Interviewees identified independent function at home as the most important outcome of the transition home., Conclusions: Post-SNF in home support is needed rapidly after discharge from the SNF to prevent adverse outcomes. In-home support needs to be highly individualized based on a patient's and caregiver's unique situation and needs.

The National Institute on Aging IMbedded Pragmatic Alzheimer's Disease and Alzheimer's Disease-Related Dementias Clinical Trials (IMPACT) Collaboratory serves as a national resource for the conduct of embedded pragmatic clinical trials to improve the care of people living with dementia (PLWD) in partnership with the healthcare systems that serve them. Inherent in this objective is the need to train and support a cadre of investigators prepared to conduct this work now and in the future. The Training Core of the IMPACT Collaboratory supports the training of investigators to become experts in this field through three objectives: (1) curricula development and dissemination; (2) network generation and navigation; and (3) a career development award program. The innovative approach of the Training Core will require developing content and providing training experiences that recognize the unique challenges of research at the intersection of health systems, pragmatic trials, and PLWD and their caregivers. Ultimately, we seek to build the nation's capacity to conduct research that bridges the gaps between efficacy studies to effectiveness research to implementation science. Although foundational resources in the methods of each of these areas are already available, few actually focus on pragmatic trials embedded within healthcare systems that focus on PLWD. To bring new interventions for PLWD from efficacy to widespread implementation, researchers must build diffusability, adaptability, heterogeneity, and scalability into the design of the intervention. In achieving these objectives, the Training Core will utilize the network of investigators, institutions, and stakeholders represented in the IMPACT Collaboratory. J Am Geriatr Soc 68:S21-S27, 2020., (© 2020 The American Geriatrics Society.)

Background: Emotional distress often causes patients with cancer and their family caregivers (FCGs) to avoid end-of-life discussions and advance care planning (ACP), which may undermine quality of life (QoL). Most ACP interventions fail to address emotional barriers that impede timely ACP., Aim: We assessed feasibility, acceptability, and preliminary effects of a mindfulness-based intervention to facilitate ACP for adults with advanced-stage cancer and their FCGs., Design: A single-arm pilot was conducted to assess the impact of a 6-week group mindfulness intervention on ACP behaviors (patients only), QoL, family communication, avoidant coping, distress, and other outcomes from baseline (T1) to post-intervention (T2) and 1 month later (T3)., Participants: Eligible patients had advanced-stage solid malignancies, limited ACP engagement, and an FCG willing to participate. Thirteen dyads (N = 26 participants) enrolled at an academic cancer center in the United States., Results: Of eligible patients, 59.1% enrolled. Attendance (70.8% across 6 sessions) and retention (84.6% for patients; 92.3% for FCGs) through T3 were acceptable. Over 90% of completers reported high intervention satisfaction. From T1 to T3, patient engagement more than doubled in each of 3 ACP behaviors assessed. Patients reported large significant decreases in distress at T2 and T3. Family caregivers reported large significant improvements in QoL and family communication at T2 and T3. Both patients and FCGs reported notable reductions in sleep disturbance and avoidant coping at T3., Conclusions: The mindfulness intervention was feasible and acceptable and supported improvements in ACP and associated outcomes for patients and FCGs. A randomized trial of mindfulness training for ACP is warranted. The study is registered at ClinicalTrials.gov with identifier NCT02367508 ( https://clinicaltrials.gov/ct2/show/NCT02367508 ).

Objective: Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients' and families' emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement., Method: The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.ResultFour salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease.Significance of resultsThe MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.

Background: Critically ill adult patients who face medical decisions often delegate others to make important decisions. Those who are authorized to make such decisions are typically family members, friends, or legally authorized representatives, often referred to as surrogates. Making medical decisions on behalf of others produces emotional distress. Spirituality and/or religion provide significant assistance to cope with this distress. We designed this study to assess the role of surrogates' spirituality and religion (S/R) coping resources during and after making medical decisions on behalf of critically ill patients. The study's aim was to understand the role that S/R resources play in coping with the lived experiences and challenges of being a surrogate., Methods: Semistructured interviews were conducted with 46 surrogates by trained interviewers. These were audio-recorded and transcribed by research staff. Three investigators conducted a thematic analysis of the transcribed interviews. The codes from inter-rater findings were analyzed, and comparisons were made to ensure consistency., Results: The majority (67%) of surrogates endorsed belief in God and a personal practice of religion. Five themes emerged in this study. Personal prayer was demonstrated as the most important coping resource among surrogates who were religious. Trusting in God to be in charge or to provide guidance was also commonly expressed. Supportive relationships from family, friends, and coworkers emerged as a coping resource for all surrogates. Religious and nonreligious surrogates endorsed coping strategies such as painting, coloring, silent reflection, music, recreation, and reading. Some surrogates also shared personal experiences that were transformative as they cared for their ill patients., Conclusion: We conclude that surrogates use several S/R and other resources to cope with stress when making decisions for critically ill adult patients. The coping resources identified in this study may guide professional chaplains and other care providers to design a patient-based and outcome-oriented intervention to reduce surrogate stress, improve communication, increase patient and surrogate satisfaction, and increase surrogate integration in patient care. We recommend ensuring that surrogates have S/R resources actively engaged in making medical decisions. Chaplains should be involved before, during, and after medical decision making to assess and address surrogate stress. An interventional research-design project to assess the effect of spiritual care on surrogate coping before, during, and after medical decision making is also recommended.

Background: Alzheimer's disease and related dementias (ADRD) impact a woman's life expectancy and her ability to participate in medical decision-making about breast cancer screening, necessitating the involvement of family caregivers. Making decisions about mammography screening for women with ADRD is stressful. There are no data that suggest that breast cancer screening helps women with ADRD live longer or better. Decision aids may improve the quality of decision-making about mammography for ADRD patients and may inform family caregivers about the risks, benefits, and need for decision-making around mammography screening., Methods/design: The Decisions about Cancer Screening in Alzheimer's Disease (DECAD) trial, a randomized controlled clinical trial, will enroll 426 dyads of older women with ADRD (≥75 years) and a family caregiver from clinics and primary-care practices in Indiana to test a novel, evidence-based decision aid. This decision aid includes information about the impact of ADRD on life expectancy, the benefit of mammograms, and the impact on the quality of life for older women with ADRD. Dyads will be randomized to receive the decision aid or active control information about home safety. This trial will examine the effect on the caregiver's decisional conflict (primary outcome) and the caregiver's decision-making self-efficacy (secondary outcome). A second follow-up at 15 months will include a brief, semi-structured interview with the caregiver regarding the patient's experience with mammograms and decision-making about mammograms. At the same time, a review of the patient's electronic medical record (EMR) will look at discussions about mammography with their primary-care physician and mammogram orders, receipt, results, and burden (e.g., additional diagnostic procedures due to false-positive results, identification of an abnormality on the screening exam but further work-up declined, and identification of a clinically unimportant cancer). A third follow-up at 24 months will extract EMR data on mammogram orders, occurrences, results, and the burden of mammograms., Discussion: We hypothesize that caregivers who receive the decision aid will have lower levels of decisional conflict and higher levels of decision-making self-efficacy compared to the control group. We also hypothesize that the DECAD decision aid will reduce mammography use among older women with ADRD., Trial Registration: Clinical Trials Register, NCT03282097 . Registered on 13 September 2017.

Objectives: To describe the perspectives of family caregivers toward stopping cancer screening tests for their relatives with dementia and identify opportunities to reduce harmful or unnecessary screening., Design: Focus group study., Setting: Alzheimer's Association support groups for family members of individuals with dementia., Participants: Four focus groups including 32 caregivers (25 female; 24 white, 7 African American, one American/Indian; mean age 65.5, range 49-85)., Measurements: Focus group transcripts were transcribed and analyzed using methods of grounded theory., Results: Caregivers considered decisions to stop cancer screening in terms of quality of life and burden on the patient and caregiver. Many described having to intervene in the patient's care to stop unnecessary or harmful screening, and others met resistance when they advocated for stopping. Physicians varied widely in their knowledge of dementia care and willingness to consider cessation of screening., Conclusion: Many family caregivers wish to stop cancer screening tests as dementia progresses and are relieved when physicians bring it up. Caregivers are open to discussions of screening cessation that focus on quality of life, burdens, and benefits. Interventions are needed to increase caregiver and clinician discussion of screening cessation and to increase clinician awareness of the need to reconsider cancer screening in individuals with dementia., (© 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.)

Background: Hospitalized older adults frequently have impaired cognition and must rely on surrogates to make major medical decisions. Ethical standards for surrogate decision making are well delineated, but little is known about what factors surrogates actually consider when making decisions., Objectives: To determine factors surrogate decision makers consider when making major medical decisions for hospitalized older adults, and whether or not they adhere to established ethical standards., Design: Semi-structured interview study of the experience and process of decision making., Setting: A public safety-net hospital and a tertiary referral hospital in a large city in the Midwest United States., Participants: The study included 35 surrogates with a recent decision-making experience for an inpatient aged 65 or older., Measurements: The key factors that surrogates considered when making decisions. Interview transcripts were coded and analyzed using the grounded theory method of qualitative analysis., Results: Surrogates considered patient-centered factors and surrogate-centered factors. Patient-centered factors included: (1) respecting the patient's input, (2) using past knowledge of the patient to infer the patient's wishes, and (3) considering what is in the patient's best interests. Some surrogates expressed a desire for more information about the patient's prior wishes. Surrogate-centered factors included: (1) surrogate's wishes as a guide, (2) surrogate's religious beliefs and/or spirituality, (3) surrogate's interests, and (4) family consensus., Conclusion: Our study indicates that surrogate decision making is more complex than the standard ethical models, which are limited to considerations of the patient's autonomy and beneficence. Because surrogates also imagine what they would want under the circumstances and consider their own needs and preferences, models of surrogate decision making must account for these additional considerations. Surrogates' desire for more information about patients' preferences suggests a need for greater advance care planning.

Objectives: To compare attitudes toward dementia screening of older adults with and without an experience of dementia caregiving., Design: A cross-sectional study., Setting: Primary care clinics in Indianapolis, Indiana., Participants: Eighty-one participants with dementia caregiving experience (CG) and a random sample of 125 participants without dementia caregiving experience (NCG)., Measurements: Attitudes of dementia screening, including acceptance of dementia screening and its perceived harms and benefits, as determined according to the Perceptions Regarding Investigational Screening for Memory in Primary Care questionnaire., Results: After adjusting for age, race, sex, and education, CGs had a lower dementia screening acceptance mean score (53.9 vs 60.6; P=.03) and a higher perceived suffering score (61.6 vs 55.9, P=.04) than NCGs, but there were no differences in perceived benefits of dementia screening (72.8 vs 69.0; P=.50), perceived stigma (32.9 vs 37.5; P=.12), and perceived negative effect on independence (47.6 vs 54.0; P=.20). The top three barriers to screening identified by both groups were emotional suffering by the family (86% of CGs and 75% of NCGs), loss of driving privileges (75% of CGs and 78% of NCGs), and becoming depressed (64% of CGs and 43% of NCGs)., Conclusion: The experience of being a dementia caregiver may influence one's own attitude about accepting dementia screening for oneself., (© 2011, Copyright the Authors. Journal compilation © 2011, The American Geriatrics Society.)