Recruiting bereaved family and friends left behind after a suicide loss to participate in research.

BACKGROUND: Although understanding bereavement experiences following a suicide is necessary for development of better interventions to support and provide mental health care services for friends and family members, recruiting suicide loss survivors (friends and family members left behind following a suicide) to participate in research presents challenges. Expanding recruitment to include previously underrepresented male and rural participants can further complicate recruitment. PURPOSE: In this paper, the author describes the methods used for recruiting suicide loss survivors (the friends and family members left behind following loss of a loved one to suicide) to participate in this qualitative research study. CONCLUSION: Facebook, Twitter, and Instagram were useful social media platforms used to recruit 28 participants for telephone interviews. Participants in this study reported an interest in research in hopes they could help others with suicide bereavement.

Advance care planning at life milestones.

Much progress has been made in advance care planning (ACP), especially related to end of life and palliative care. These advances have moved thinking about ACP from a checklist approach to an upstream recognition that ACP is an iterative process that should begin early in adulthood and be revisited with each milestone or life-changing event. It is recognized that there are many stages and milestones in adult life that contribute to changing loci of responsibility and life goals. These changes impact how individuals view their lives, the complexity of health care, and the myriad of health conditions they may encounter. ACP discussions should routinely be started and reexamined at the time of key life events like starting a career or a marriage and not delayed until hospitalization, the occurrence of a serious accident, or the development of a catastrophic illness.

"My problems aren't their fault": Mexican American women managing diabetes while caring for grandchildren.

Diabetes affects many aspects of family life for the Mexican American (MA) population. Caregiving grandmothers, the traditional family nurturers, are often simultaneously managing their type 2 diabetes (T2DM). The purpose of this qualitative descriptive study was to describe the perceptions of MA grandmothers managing T2DM while caring for a grandchild. Eight participants were interviewed. Participants consistently reported feeling a personal responsibility for their T2DM self-management as well as for the health and wellbeing of their families, including their grandchildren. Regardless of associated caregiving stress, grandchildren were described as the main source of positive motivation for T2DM self-management.

Interventions for Loneliness Among Adult Cancer Survivors: A Systematic Review and Meta-Analysis.

Problem identification: Loneliness is common after cancer, contributing to poor outcomes. Interventions to modify loneliness are needed. This systematic review describes the current literature regarding loneliness interventions in cancer survivors.Literature search: Databases including: Ovid/MEDLINE; The Cochrane Central Register of Controlled Trials (CENTRAL); Elsevier/Embase; Clarivate/Web of Science (Core Collection), EBSCO/PsycINFO, EBSCO/CINAHL were used to perform a systematic review of literature using PRISMA guidelines. Second, risk of bias, meta-analysis and a narrative synthesis approach was completed to synthesize findings from multiple studies.Data evaluation/synthesis: Six thousand five hundred three studies were initially evaluated; eight studies met inclusion criteria. Findings indicate a paucity of interventions, generally of lower quality. Interventions were feasible and acceptable; those interventions with cultural modifications were more likely to demonstrate effectiveness.Conclusions: There are limited interventions addressing loneliness in cancer survivors. Development and testing of culturally-relevant programs are warranted.Implications for psychosocial oncology: Current studies suggest the psychosocial symptom of loneliness is modifiable among adult cancer survivors. Few interventions have been tested and shown to be effectiveness in cancer survivors in the U.S. and none have been tailored for older adult survivors, by patient gender/sex and few for specific race/ethnic groups. Results from this systematic review: a narrative synthesis and meta-analysis can inform future interventions targeting loneliness in this growing, yet vulnerable, adult cancer survivor population.

A Guide for Intentional Home Telehealth Assessment: Patient and Caregiver Perceptions.

Telehealth can provide expanded access to healthcare. The Comprehensive Patient Assessment for Using Telehealth at Home is a comprehensive approach for an intentional remote patient meeting that provides a high-quality patient encounter when using technology. In this study, we describe the perspectives of seriously ill older adults and their caregivers on the usability of the Comprehensive Patient Assessment for Using Telehealth at Home using technology to meet remotely and assess patients in their own homes. This study used qualitative description with semistructured interviews to explore participants' user experience of the telehealth visit using the Comprehensive Patient Assessment for Using Telehealth at Home. The overarching theme of participants' experiences with the Comprehensive Patient Assessment for Using Telehealth at Home intervention was of a continuum of acceptance of technology use. Participants felt that a combination of in-person and telehealth visits was ideal, and telehealth visits were appropriate for routine visits. In-person assessments would be necessary if the communication was not adequately received through remote technology. Other themes were satisfaction and detractors, usability of the technology, privacy and confidentiality, and timing of the telehealth visit. Telehealth presents new opportunities for patients to engage and connect with providers, allowing them to seek care in the comfort of their own home. In some circumstances, telehealth is appropriate but is not a permanent replacement for in-person visits.

Health Care Professionals' Experiences as Family Caregivers During Intra-Hospital Transitions.

Family caregivers are often perceived as inexperienced family members assuming caregiving duties. However, health care professionals may also find themselves in an informal caregiving role as older adult relatives or friends are hospitalized and experience intra-hospital transitions. The purpose of the current study was to describe the experiences of health care professionals assuming the role of informal caregiver during intra-hospital transitions. As part of a larger study, a separate analysis of six semi-structured interviews from family caregivers with health care backgrounds was considered. Health care professionals as family caregivers (HCP-FCs) reported they sought inclusion in the care provided, they had unique insider perspectives, and experienced role struggle between health care professional and new informal caregiver. Moreover, HCP-FCs reported increased role struggle during interactions with colleagues and fellow health care professionals. Understanding of the role of HCP-FCs during transitions in care is necessary to develop interventions supportive of patient- and family-centered care. [Journal of Gerontological Nursing, 47(2), 31-36.].

Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit.

BACKGROUND: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life. PURPOSE: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice. SEARCH STRATEGY: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making. FINDINGS: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care. IMPLICATIONS FOR PRACTICE: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC. IMPLICATIONS FOR RESEARCH: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research.

Oregon's Familias en Acción replicates benefits for underserved cancer co-survivors through Un Abrazo Para la Familia.

OBJECTIVE: Our goal in this study was to determine if we could replicate initial findings when providing the intervention, Un Abrazo Para La Familia ("Abrazo"). Abrazo is a community-focused psychoeducational preventive intervention addressing the cancer information and coping needs of low-income, underserved family members of cancer survivors, developed and first implemented in Tucson, Arizona. METHODS: We used a preintervention and postintervention evaluation design to assess the effectiveness of replicating the Abrazo intervention with underserved Hispanic/Latino family members facing cancer as co-survivors. We describe lessons learned in an expansion of Abrazo from one region of the United States to another. RESULTS: Portland promotoras demonstrated that when the Abrazo intervention is provided via a culturally congruent, accessible format, the significant gains in cancer knowledge and self-efficacy reported by underserved co-survivors can be replicated. This is important because Oregon represents a US region different from Abrazo's origins in the Southwest. CONCLUSION: Our replication study provides a useful roadmap for others focusing on the psychosocial needs of Hispanic/Latino cosurviving family members of cancer. A manualized 12-hour training program based on the initial discovery and efficacy work was developed to train promotoras as a part of this study. The manual provides a clear protocol for others to replicate our intervention and evaluation procedures. Abrazo may be particularly important for family-centered care if the family does not have the cancer knowledge or self-confidence needed to fully participate.

Using cognitive interviews to improve a Psychological-Social-Spiritual Healing instrument: Voices of aging African Americans with serious illness.

AIM: The purpose of this study was to contribute to content validity, by providing input into the linguistic and pragmatic validities, of a 53 item Psychological-Social-Spiritual Healing instrument. BACKGROUND: Discovery of cultural values and beliefs from African American elders' experiences of illness provides insight for development of more culturally sensitive instruments. METHODS: Through an exploratory descriptive design, this study used cognitive interviewing methods to examine linguistic and pragmatic validity of the Psychological-Social-Spiritual Healing instrument, from the perspectives of aging seriously ill AAs. Participants were recruited from urban Jackson, MS from community settings from October 2014 to January 2015. With a purposefully chosen sample of seriously ill African Americans elders (N=15), and using the method of cognitive interviewing, responses related to cultural relevance, clarity and meaning of the 53 items of the instrument were collected. This in-depth query of items was accomplished through the use of both verbal probing and think aloud methods of cognitive interviewing. RESULTS: Thirty-seven items were retained. Eight items were revised. Eight items were deleted. CONCLUSIONS: From the expert input of seriously ill African American elders, a systematic decision-making process of item retention, revision or deletion led to the development of a more culturally sensitive Psychological-Social-Spiritual Healing instrument.

Family Caregivers' Experiences of Within-Hospital Handoffs for Older Adults in Acute Care.

Family caregivers' experiences during within-hospital handoffs between acute care units are not well understood. Qualitative description methodology was employed to describe family caregivers' experiences during their loved ones' handoffs. Semistructured interviews were conducted with 10 caregivers of hospitalized older adults. Three themes emerged: Lack of care coordination, Muddling through handoffs alone, and Wariness toward the care delivery system. Findings can help clinicians shape their interactions with caregivers to maximize their involvement in post-hospital care.

The association among knowledge of and confidence in home health care services, acculturation, and family caregivers' relationships to older adults of Mexican descent.

The purposes of this study were to examine the relationships among knowledge of and confidence in health care services (HHCS), acculturation, characteristics of family caregivers of Mexican descent, and differences by caregivers' relationship (spouse or adult child). A sample of Mexican-descent older adults and their caregivers was recruited (n = 74 dyads) in Arizona. Each participant completed questionnaires on knowledge, confidence, and acculturation. There were moderate but significant associations among higher Anglo Orientation with Knowledge and with Confidence. Fear of HHCS was positively associated with higher Anglo Orientation and English Language Preference; and negatively associated with Mexican Orientation and Spanish Language Preference. For Spouse caregivers, Fear of HHCS was positively correlated with higher Anglo Orientation and English Language Preference; for Offspring caregivers, Fear of HHCS was negatively correlated with Mexican Orientation and Spanish Language Preference. Results support assessing caregiver cohort and socio-cultural context to decrease HHCS use disparities by Mexican-descent caregiving families.

African American Elders' Serious Illness Experiences: Narratives of "God Did," "God Will," and "Life Is Better".

The foundation of culturally sensitive patient-centered palliative care is formed from one's social, spiritual, psychological, and physical experiences of serious illness. The purpose of this study was to describe categories and patterns of psychological, social, and spiritual healing from the perspectives of aging seriously ill African American (AA) elders. Using narrative analysis methodology, 13 open-ended interviews were collected. Three main patterns were "prior experiences," "I changed," and "across past, present experiences and future expectations." Themes were categorized within each pattern: been through it . . . made me strong, I thought about . . . others, went down little hills . . . got me down, I grew stronger, changed priorities, do things I never would have done, quit doing, God did and will take care of me, close-knit relationships, and life is better. "Faith" in God helped the aging seriously ill AA elders "overcome things," whether their current illness or other life difficulties.

Psychosocial and cognitive health differences by caregiver status among older Mexican Americans.

This study identifies the risk and protective factors associated with informal caregiving by older (≥70 years) Mexican Americans and profiles caregiving arrangements. Overall, a greater number of informal caregivers (n = 92) were married and female. They also had higher physical functioning and better cognition than non-caregivers (n = 1,888) but fewer visited a physician regularly. Informal caregivers also showed an increased risk of depressive symptoms. A third of caregivers spent more than 20 h/day caregiving and the majority (84%) of care recipients were family members. In order to support the efforts of this disproportionately burdened caregiver group, increased social support and healthcare services are needed.

Healthcare Worker Perceptions of LGBTQ+ Older Adults: Integrative Review.

Lesbian, gay, bisexual, transgender, and queer (LGBTQ+) older adults (OAs) may require care in long-term care (LTC), assisted living, and home health settings. Healthcare workers' (HCWs, e.g., registered nurses, social workers, certified nursing assistants, home health aides) perceptions and attitudes could influence care, health disparities, and outcomes. The aim of this integrative review was to discover what is known about HCWs' perceptions toward LGBTQ+ OAs. Searched databases included PsycINFO, PubMed, CINAHL, and Web of Science. Quality review assessment was conducted separately by two reviewers; Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines were followed. A total of 370 studies were identified; 10 studies were included in the review. Five studies were quantitative, four were qualitative, and one was a mixed methods study. Major themes included preparedness/training, responsibility of disclosure, and clinical practice. HCW's perceptions may be associated with discriminatory care and health disparities in the LGBTQ+ OA population.

Family caregiving of older Chinese people with dementia: testing a model.

BACKGROUND: The process of taking care of older people with dementia at home is complex and influenced by cultural factors, necessitating a better understanding of the interrelationships of factors within the context of culture. OBJECTIVES: The aim of this study was to test the proposed Dementia Caregiving Model, specifying how caregiving appraisal, coping, perceived social support, and familism influence the impact of caregiving stressors on the psychological health of caregivers. METHODS: A cross-sectional correlational design with a convenience sample (n = 96) from three outpatient clinics of hospitals in China was used. Questionnaires were utilized to measure the variables in the model. Path analysis was used to assess model fit and paths. RESULTS: The original proposed model did not fit the data, butminor modifications produced a very good model fit (χ(10, n = 96) = 8.14, p = .62; goodness-of-fit index = .98, comparative fit index = 1.00, and root mean square error of approximation < .001). Care recipients' behavioral problems had direct and indirect negative effects on caregivers' psychological health. Perceived social support had direct and indirect positive effects on caregivers' psychological health. Familism had indirect positive effects on caregivers' psychological health in relation with caregiving satisfaction and coping. Caregiving appraisal and coping were mediators in the model. CONCLUSIONS: The model findings lend support that caregivers' cognitive appraisal and coping explain some observed individual differences in stress response and outcomes. The findings broaden understanding of the effects of familism on caregivers' psychological health. In the future, programs should include interventions for caregivers, as well as interventions for care recipients.

Intimate Partner Violence Stories of Appalachian Women.

The purpose of this study was to explore past intimate partner violence as it occurred in Appalachian women residing in rural and non-urbanized areas. The methodology was qualitative description. Twelve former intimate partner violence female victims shared their experiences through the socioculturally appropriate tradition of story-telling. The meta-theme, Turning Points, reflecting the perceived non-linearity of intimate partner violence was supported by three themes: (1) The Process of Abuse: (2) Learn from my Story; Don't Let it be Your Story; and (3) Does Where I Live Make a Difference? All participants experienced patterns of abuse that cycled in frequency and severity, similar injuries and health problems, fear, helplessness, and, at times, hopelessness. Application of knowledge gained through naturalistic methods can advance our understanding of intimate partner violence as it occurs in vulnerable populations and the depth and breadth of sociocultural influences which may affect the public health threat of this type of violence.

Experiences With Suicide Loss: A Qualitative Study.

To better understand suicide loss survivors' experiences and barriers to accessing support and mental health care, 28 (21 women and 7 men) suicide loss survivors were interviewed. Using qualitative analysis of 28 in-depth, semi-structured phone interviews data, three categories emerged: Life before Suicide, Life after Suicide, and Meaning of Life. This deeper understanding of suicide loss survivors along with inclusion of experiences of male and rural participants' suicide loss, fill previously identified research gaps. Our findings suggest importance in providing emotional support and mental health resources to those with suicide intent or experiences with suicide loss. Most importantly, the recognition of suicide loss survivors extends beyond the immediate family and includes cousins, friends, and work associates. Recognition of extended suicide loss survivors' bereavement will provide additional opportunities for healthcare providers to effectively intervene with this vulnerable population.

Graphic Novela: Mexican American Families' Use of Community Services for Older Adults.

Knowledge gaps exist about how to help Mexican American (MA) families seek assistance when their capacity to assist older family members is challenged. MA families may resist confronting unpleasant but real situations with the older adult, for example, the need to access long term support services (LTSS), because of cultural and structural barriers. The purpose was to describe stakeholders' reactions to a culturally focused graphic novela created in partnership with a community advisory council. Qualitative description with content analysis of a focus group's reactions to the graphic novela was used. Results included positive reactions as well as suggestions for improvement and dissemination. Graphic novelas can be an effective medium for modeling conversations about older adults' needing additional care, and demonstrating how to identify and access available LTSS or other services. Included is a description of the researchers' process of partnering with diverse stakeholders, which is essential for creating new solutions.

Social Determinants of Health and Health Care Delivery: African American Women's T2DM Self-Management.

African American (AA) women have high prevalence of Type 2 diabetes mellitus (T2DM) and complications. No studies have been conducted about how social determinants of health and health care delivery affect their T2DM self-management. The purpose was to describe how social determinants of health and healthcare delivery may influence AA women's T2DM self-management using qualitative descriptive methodology (N = 10). Ten participants were interviewed. Participants' geographical location, education, level of income, health literacy, and systemic racism, that is, healthcare delivery services, for example, inadequate healthcare services, providers' assumptions about the patient's knowledge of diabetes, providers' attitudes toward patients, and stigma related to diabetes as a disease were identified. Understanding the role of social determinants of health and the health care delivery system in influencing T2DM self-management is a powerful tool for providers and practitioners for improving practice and health care policies to decrease health disparities and improve health outcomes among AA women with T2DM.

"I put diabetes on the shelf": African-American Women's Perceptions of Risk for Diabetes Complications.

The purpose of this study was to describe the perceptions of African American (AA) women with Type 2 diabetes mellitus (T2DM) about developing diabetes mellitus (DM) complications and explore how their perceived risk influenced DM self-management. Ten (N = 10) AA women participated in the qualitative description study through semi-structured interviews. Thematic analysis informed by the Health Belief Model and Risk Perception Conceptual Model revealed the perceived probability of DM complications by AA women with T2DM and how they made judgments regarding the seriousness, extent, or severity of complications. Those with high levels of DM knowledge perceived themselves at high risk of developing DM complications and those with low DM knowledge perceived themselves at low risk of DM complications. Risk perceptions and health literacy also influenced DM self-management behaviors.