Integrating Palliative Care Social Workers into Subacute Settings: Feasibility of the Assessing & Listening to Individual Goals and Needs Intervention Trial.

Objectives: Determine feasibility, acceptability, and preliminary effects of the Palliative Care Social Worker-led ALIGN (Assessing & Listening to Individual Goals and Needs) intervention in older persons admitted to Skilled Nursing Facility (SNF) and their caregivers. Design: A pilot pragmatic randomized stepped wedge design of ALIGN versus usual care in three SNFs. Setting and Participants: One hundred and twenty older adults and caregivers (optional) with advanced medical illnesses. Measures: Primary outcomes were feasibility and acceptability. We collected exploratory patient-/caregiver-centered outcomes at baseline and three months and conducted a medical record review at six months to assess documentation of Advance Directives (AD). We also collected exploratory health care utilization data, including hospitalizations, mortality, and hospice utilization. Results: Of 179 patients approached, 120 enrolled (60 ALIGN patients with 15 caregivers and 60 usual care patients and 21 caregivers). Four intervention patients refused ALIGN visits, 8 patients died or discharged before initial visit, and 48 intervention patients received ALIGN visits, with ∼80% having caregivers participating in visits, regardless of caregiver study enrollment. Quantitative exploratory outcomes were not powered to detect a difference between groups. We found 91% of ALIGN patients had a completed AD in medical record compared to 39.6% of usual care patients (p < 0.001). Qualitative feedback from participants and SNF staff supported high acceptability and satisfaction with ALIGN. Conclusion and Clinical Implications: A pragmatic trial of the ALIGN intervention is feasible and preliminary effects suggest ALIGN is effective in increasing AD documentation. Further research is warranted to understand effects on caregivers and health care utilization. The current model for SNF does not address the palliative care needs of patients. ALIGN has potential to be an effective, scalable, acceptable, and reproducible intervention to improve certain palliative care outcomes within subacute settings.

Understanding Social Isolation Among Urban Aging Adults: Informing Occupation-Based Approaches.

Socially isolated aging adults are at risk of poor health and well-being. Occupational therapy can help address this issue; however, information is needed to guide such work. National surveys characterize social isolation in populations of aging adults but fail to provide meaningful information at a community level. The objective of this study is to describe multiple dimensions of social isolation and related factors among aging adults in diverse urban neighborhoods. Community-based participatory research involving a door-to-door survey of adults 50 years and older was used. Participants ( N = 161) reported social isolation in terms of small social networks (24%) and wanting more social engagement (43%). Participants aged 50 to 64 years reported the highest levels of isolation in most dimensions. Low income, poor health, lack of transportation, and infrequent information access appeared linked to social isolation. Occupational therapists can address social isolation in similar urban communities through policy and practice that facilitate social engagement and network building.

Lessons learned from community-based participatory research: establishing a partnership to support lesbian, gay, bisexual and transgender ageing in place.

Background: Due to a history of oppression and lack of culturally competent services, lesbian, gay, bisexual and transgender (LGBT) seniors experience barriers to accessing social services. Tailoring an evidence-based ageing in place intervention to address the unique needs of LGBT seniors may decrease the isolation often faced by this population. Objective: To describe practices used in the formation of a community-based participatory research (CBPR), partnership involving social workers, health services providers, researchers and community members who engaged to establish a LGBT ageing in place model called Seniors Using Supports To Age In Neighborhoods (SUSTAIN). Methods: A case study approach was employed to describe the partnership development process by reflecting on past meeting minutes, progress reports and interviews with SUSTAIN's partners. Results: Key partnering practices utilized by SUSTAIN included (i) development of a shared commitment and vision; (ii) identifying partners with intersecting spheres of influence in multiple communities of identity (ageing services, LGBT, health research); (iii) attending to power dynamics (e.g. equitable sharing of funds); and (iv) building community capacity through reciprocal learning. Although the partnership dissolved after 4 years, it served as a successful catalyst to establish community programming to support ageing in place for LGBT seniors. Conclusion: Multi-sector stakeholder involvement with capacity to connect communities and use frameworks that formalize equity was key to establishing a high-trust CBPR partnership. However, lack of focus on external forces impacting each partner (e.g. individual organizational strategic planning, community funding agency perspectives) ultimately led to dissolution of the SUSTAIN partnership even though implementation of community programming was realized.

Perspectives of LGBTQ Older Adults on Aging in Place: A Qualitative Investigation.

This qualitative study conducted by a community-research partnership used multiple types of data collection to examine variables relevant for LGBTQ older adults who wished to age in place in their urban Denver neighborhood. Focus groups, interviews, and a town hall meeting were used to identify barriers and supports to aging in place. Participants (N = 73) identified primarily as lesbian or gay, aged 50-69, and lived with a partner. Ageism, heterosexism, and cisgenderism emerged as cross-cutting themes that negatively impact access to health care, housing, social support, home assistance, and legal services. Resilience from weathering a lifetime of discrimination was identified as a strength to handle aging challenges. Recommendations for establishing an aging in place model included establishing welcoming communities and resource centers and increasing cultural competence of service providers. This study provides a unique contribution to understanding the psychosocial, medical, and legal barriers for successfully aging in place.

Patterns in PARTNERing across Public Health Collaboratives.

Inter-organizational networks represent one of the most promising practice-based approaches in public health as a way to attain resources, share knowledge, and, in turn, improve population health outcomes. However, the interdependencies and effectiveness related to the structure, management, and costs of these networks represents a critical item to be addressed. The objective of this research is to identify and determine the extent to which potential partnering patterns influence the structure of collaborative networks. This study examines data collected by PARTNER, specifically public health networks (n = 162), to better understand the structured relationships and interactions among public health organizations and their partners, in relation to collaborative activities. Combined with descriptive analysis, we focus on the composition of public health collaboratives in a series of Exponential Random Graph (ERG) models to examine the partnerships between different organization types to identify the attribute-based effects promoting the formation of network ties within and across collaboratives. We found high variation within and between these collaboratives including composition, diversity, and interactions. The findings of this research suggest common and frequent types of partnerships, as well as opportunities to develop new collaborations. The result of this analysis offer additional evidence to inform and strengthen public health practice partnerships.

How to Identify Success Among Networks That Promote Active Living.

OBJECTIVES: We evaluated organization- and network-level factors that influence organizations' perceived success. This is important for managing interorganizational networks, which can mobilize communities to address complex health issues such as physical activity, and for achieving change. METHODS: In 2011, we used structured interview and network survey data from 22 states in the United States to estimate multilevel random-intercept models to understand organization- and network-level factors that explain perceived network success. RESULTS: A total of 53 of 59 "whole networks" met the criteria for inclusion in the analysis (89.8%). Coordinators identified 559 organizations, with 3 to 12 organizations from each network taking the online survey (response rate = 69.7%; range = 33%-100%). Occupying a leadership position (P < .01), the amount of time with the network (P < .05), and support from community leaders (P < .05) emerged as correlates of perceived success. CONCLUSIONS: Organizations' perceptions of success can influence decisions about continuing involvement and investment in networks designed to promote environment and policy change for active living. Understanding these factors can help leaders manage complex networks that involve diverse memberships, varied interests, and competing community-level priorities.

New perspectives on the "silo effect": initial comparisons of network structures across public health collaboratives.

OBJECTIVES: We explored to what extent "silos" (preferential partnering) persist in interorganizational boundaries despite advances in working across boundaries. We focused on organizational homophily and resulting silo effects within networks that might both facilitate and impede success in public health collaboratives (PHCs). METHODS: We analyzed data from 162 PHCs with a series of exponential random graph models to determine the influence of uniform and differential homophily among organizations and to identify the propensity for partnerships with similar organizations. RESULTS: The results demonstrated a low presence (8%) of uniform homophily among networks, whereas a greater number (30%) of PHCs contained varying levels of differential homophily by 1 or more types of organization. We noted that the higher frequency among law enforcement, nonprofits, and public health organizations demonstrated a partner preference with similar organizations. CONCLUSIONS: Although we identified only a modest occurrence of partner preference in PHCs, overall success in efforts to work across boundaries might be problematic when public health members (often leaders of PHCs) exhibit the tendency to form silos.

Assessing capacity for providing culturally competent services to LGBT older adults.

This qualitative, interview-based study assessed the cultural competence of health and social service providers to meet the needs of LGBT older adults in an urban neighborhood in Denver, Colorado, known to have a large LGBT community. Only 4 of the agencies were categorized as "high competency"; 12 were felt to be "seeking improvement" and 8 were considered "not aware." These results indicate significant gaps in cultural competency for the majority of service providers. Social workers are well-suited to lead efforts directed at improving service provision and care competencies for the older LGBT community.

Implications of network structure on public health collaboratives.

Interorganizational collaboration is an essential function of public health agencies. These partnerships form social networks that involve diverse types of partners and varying levels of interaction. Such collaborations are widely accepted and encouraged, yet very little comparative research exists on how public health partnerships develop and evolve, specifically in terms of how subsequent network structures are linked to outcomes. A systems science approach, that is, one that considers the interdependencies and nested features of networks, provides the appropriate methods to examine the complex nature of these networks. Applying Mays and Scutchfields's categorization of "structural signatures" (breadth, density, and centralization), this research examines how network structure influences the outcomes of public health collaboratives. Secondary data from the Program to Analyze, Record, and Track Networks to Enhance Relationships (www.partnertool.net) data set are analyzed. This data set consists of dyadic (N = 12,355), organizational (N = 2,486), and whole network (N = 99) data from public health collaborations around the United States. Network data are used to calculate structural signatures and weighted least squares regression is used to examine how network structures can predict selected intermediary outcomes (resource contributions, overall value and trust rankings, and outcomes) in public health collaboratives. Our findings suggest that network structure may have an influence on collaborative-related outcomes. The structural signature that had the most significant relationship to outcomes was density, with higher density indicating more positive outcomes. Also significant was the finding that more breadth creates new challenges such as difficulty in reaching consensus and creating ties with other members. However, assumptions that these structural components lead to improved outcomes for public health collaboratives may be slightly premature. Implications of these findings for research and practice are discussed.

Patient-identified factors related to heart failure readmissions.

BACKGROUND: Although readmission after hospitalization for heart failure has received increasing attention, little is known about its root causes. Prior investigations have relied on administrative databases, chart review, and single-question surveys. METHODS AND RESULTS: We performed semistructured 30- to 60-minute interviews of patients (n=28) readmitted within 6 months of index heart failure admission. Established qualitative approaches were used to analyze and to interpret data. Interview findings were the primary focus of the study, but patient information and provider comments from chart data were also consulted. Patient median age was 61 years; 29% were nonwhite; 50% were married; 32% had preserved ejection fraction; and median time from discharge to readmission was 31 days. Reasons for readmission were multifactorial and not easily categorized into mutually exclusive reasons. Five themes emerged as reasons cited for hospital readmission: distressing symptoms, unavoidable progression of illness, influence of psychosocial factors, good but imperfect self-care adherence, and health system failures. CONCLUSIONS: Our study provides the first systematic qualitative assessment of patient perspectives concerning heart failure readmission. Contrary to prior literature and distinct from what we found documented in the medical record, patient experiences were highly heterogeneous, not easily categorized as preventable or not preventable, and not easily attributed to a single cause. These findings suggest that future interventions designed to reduce heart failure readmissions should be multifaceted, should be systemic in nature, and should integrate patient input.

Patient and caregiver congruence: the importance of dyads in heart failure care.

BACKGROUND: Informal (family) caregivers are integrally involved in chronic heart failure (HF) care. Few studies have examined HF patients and their informal caregiver as a unit in a relationship, or a dyad. Dyad congruence, or consistency in perspective, is relevant to numerous aspects of living with HF and HF care. Incongruence or lack of communication could impair disease management and advance care planning. OBJECTIVES: The purpose of this qualitative study was to examine for congruence and incongruence between HF patients and their informal (family) caregivers. Secondary analyses examined the relationship of congruence to emotional distress and whether dyad relationship characteristics (eg, parent-child vs spouse) were associated with congruence. METHODS: Thirty-four interviews consisting of HF patients and their current informal caregiver (N = 17 dyads) were conducted. Each dyad member was asked similar questions about managing HF symptoms, psychosocial care, and planning for the future. Interviews were transcribed and analyzed using the general inductive approach. RESULTS: Congruence, incongruence, and lack of communication between patients and caregivers were identified in areas such as managing illness, perceived care needs, perspectives about the future of HF, and end-of-life issues. Seven dyads were generally congruent, 4 were incongruent, and 6 demonstrated a combination of congruence and incongruence. Much of the tension and distress among dyads related to conflicting views about how emotions should be dealt with or expressed. Dyad relationship (parent-child vs spouse) was not clearly associated with congruence, although the relationship did appear to be related to perceived caregiving roles. CONCLUSIONS: Several areas of HF clinical and research relevance, including self-care, advance care planning, and communication, were affected by congruence. Further research is needed to define how congruence is related to other relationship characteristics, such as relationship quality, how congruence can best be measured quantitatively, and to what degree modifying congruence will lead to improved HF patient and caregiver outcomes.

An Exploratory Analysis of Network Characteristics and Quality of Interactions among Public Health Collaboratives.

ABSTRACT: While the benefits of collaboration have become widely accepted and the practice of collaboration is growing within the public health system, a paucity of research exists that examines factors and mechanisms related to effective collaboration between public health and their partner organizations. The purpose of this paper is to address this gap by exploring the structural and organizational characteristics of public health collaboratives. Design and Methods. Using both social network analysis and traditional statistical methods, we conduct an exploratory secondary data analysis of 11 public health collaboratives chosen from across the United States. All collaboratives are part of the PARTNER (www.partnertool.net) database. We analyze data to identify relational patterns by exploring the structure (the way that organizations connect and exchange relationships), in relation to perceptions of value and trust, explanations for varying reports of success, and factors related to outcomes. We describe the characteristics of the collaboratives, types of resource contributions, outcomes of the collaboratives, perceptions of success, and reasons for success. We found high variation and significant differences within and between these collaboratives including perceptions of success. There were significant relationships among various factors such as resource contributions, reasons cited for success, and trust and value perceived by organizations. We find that although the unique structure of each collaborative makes it challenging to identify a specific set of factors to determine when a collaborative will be successful, the organizational characteristics and interorganizational dynamics do appear to impact outcomes. We recommend a quality improvement process that suggests matching assessment to goals and developing action steps for performance improvement. ACKNOWLEDGEMENTS: the authors would like to thank the Robert Wood Johnson Foundation's Public Health Program for funding for this research.

Giving voice to patients' and family caregivers' needs in chronic heart failure: implications for palliative care programs.

BACKGROUND: The American College of Cardiology Foundation/American Heart Association (ACC/AHA) Guidelines for the Management of Heart Failure recommend palliative care in the context of Stage D HF or at the end of life. Previous studies related to heart failure (HF) palliative care provide useful information about patients' experiences, but they do not provide concrete guidance for what palliative care needs are most important and how a palliative care program should be structured. OBJECTIVES: Describe HF patients' and their family caregivers' major concerns and needs. Explore whether, how, and when palliative care would be useful to them. DESIGN AND PARTICIPANTS: Qualitative study using in-depth interviews of 33 adult outpatients with symptomatic HF identified using purposive sampling and 20 of their family caregivers. APPROACH: Interviews were transcribed verbatim and analyzed using the constant comparative method. KEY RESULTS: Overall, patients and caregivers desired early support adjusting to the limitations and future course of illness, relief of a number of diverse symptoms, and the involvement of family caregivers using a team approach. A diverse group of participants desired these elements of palliative care early in illness, concurrent with their disease-specific care, coordinated by a provider who understood their heart condition and knew them well. Some diverging needs and preferences were found based on health status and age. CONCLUSIONS: HF patients and their family caregivers supported early integration of palliative care services, particularly psychosocial support and symptom control, using a collaborative team approach. Future research should test the feasibility and effectiveness of integrating such a program into routine HF care.