"A little bit different now": Impacts of caregiving for parent with cancer on psychosocial development in emerging and young adulthood.

Serving as a family caregiver for, and ultimately losing, a parent with advanced cancer in emerging and young adulthood has substantial, life phase-specific implications for psychosocial development. This qualitative study characterizes domains of psychosocial development impacted by cancer caregiving and parental death in this life phase. As part of a larger study, 33 bereaved emerging/young adult caregivers of parents who died following advanced cancer completed semi-structured interviews. A thematic analysis leveraging the constant comparative method was conducted by two coders and generated three themes, which described impacts of caregiving on: identity, life path, and relational intimacy and roles. Analyses also defined specific outcomes within these domains. Findings suggest that cancer caregiving-loss experiences can greatly influence developmental pursuits in this life phase. Findings validate a range of possible psychosocial impacts these caregivers may experience and can guide development of supportive resources for this growing subgroup of bereaved family caregivers.

Reflecting on death: Priorities for living well.

The positive death movement has popularized considering one's mortality. Stemming from this, Before I Die Walls erected globally prompt individual reflection on life goals, considering life's finitude. The aims of the study: (i) examined relative extent of three categories of responses to a Before I Die task, moderated by age, and (ii) tested whether purpose in life is associated with categories of Before I Die responses, moderated by age. Young, middle aged and older adults (N = 195) completed a Before I Die task (BID) and several measures including a purpose in life scale. BID task responses were reliably card-sorted into theoretically derived categories. Findings show responses most frequently represent living an Accomplished and Productive Life. Having higher purpose was related to focus on an Accomplished and Productive Life for younger adults. Before I Die walls may be a useful activity allowing adults to generate goals aligned with living well.

Rewriting the Story of Mid- and Late-Life Family Caregiving: Applying a Narrative Identity Framework.

Family caregivers of older people with health needs often provide long-term, intensive support. Caregivers are, in turn, shaped by these caregiving experiences. According to the narrative identity framework, self-narratives from lived experiences influence self-beliefs and behaviors. We assert that family caregiving experiences, filtered through individuals' memory systems as self-narratives, provide substantial scaffolding for navigating novel challenges in late life. Self-narratives from caregiving can guide positive self-beliefs and behaviors, leading to constructive health-focused outcomes, but they also have the potential to guide negative self-beliefs or behaviors, causing adverse consequences for navigating late-life health. We advocate for incorporating the narrative identity framework into existing caregiving stress models and for new programs of research that examine central mechanisms by which caregiving self-narratives guide self-beliefs and behavioral outcomes. To provide a foundation for this research, we outline 3 domains in which caregiving self-narratives may substantially influence health-related outcomes. This article concludes with recommendations for supporting family caregivers moving forward, highlighting narrative therapy interventions as innovative options for reducing the negative consequences of maladaptive caregiving self-narratives.

Former dementia caregivers' high and low point narratives: what is remembered, and how is it shared?

OBJECTIVES: To characterize core themes conveyed by caregivers when sharing narratives of high and low caregiving points and to describe how caregivers structured these narratives. METHODS: Using consensual qualitative research and thematic analysis, high and low point narratives from 32 former caregivers of persons living with dementia were examined. RESULTS: High point narrative themes involved strengthening relationships with care partners, fulfillment derived from care, lighthearted moments, and fostering the care partners' joy and dignity. Low point narratives involved family conflict and lack of support, personal deficiencies, loss of the caregivers' 'pre-caregiving' life, health system failures, and alienation from their care partner. Across high and low points, caregivers' narratives were structured by three types of narrative elaborations; details unnecessary for factual recall but which enriched narrative sharing. CONCLUSION: Themes across high and low point narratives encompassed relational issues, how caregiving shaped the caregiver's self-efficacy, and factors that made navigating caregiving easier or more difficult. Both high point and low point narration often involved describing positive aspects of caregiving (PAC). Narrative elaborations may be used by former caregivers to engage in deeper evaluation of their caregiving experiences. We consider how psychotherapeutic techniques can help former caregivers reframe maladaptive narratives, supporting their mental health.

Personal Health Planning in Adult-Child Former Caregivers of Parents Living With Dementia.

PURPOSE: To examine how former caregivers for parents living with dementia engage in personal health planning. DESIGN: An inductive, qualitative study. SETTING: Virtual, audio-recorded, semi-structured interviews. PARTICIPANTS: Thirty-two midlife former primary caregivers for parents who died following advanced dementia 3 months to 3 years prior. METHOD: Participants responded to a series of open-ended interview prompts. Interview recordings were transcribed and evaluated by a trained, diverse team to generate Consensual Qualitative Research (CQR) domains and categories. RESULTS: Caregivers developed health planning outlooks (ie, mindsets regarding willingness and ability to engage in personal health planning) that guided health planning activities (ie, engaging in a healthy lifestyle, initiating cognitive/genetic testing, maintaining independence and aging in place, ensuring financial and legal security). An agentic outlook involved feeling capable of engaging in health planning activities and arose when caregivers witnessed the impact and feasibility of their parents' health planning. Anxiety-inducing and present-focused outlooks arose when caregivers faced barriers (eg, low self-efficacy, lack of social support, perception that parent's health planning did not enhance quality of life) and concluded that personal health planning would not be valuable or feasible. CONCLUSION: Caregiving for a parent living with dementia (PLWD) shapes former caregivers' personal health planning. Interventions should support former caregivers who have developed low self-efficacy or pessimistic views on healthy aging to support them in addressing health planning activities.

Narrating Final Memories From Spousal Loss: The Role of Place and Quality of Death.

Objective: Personal memories of the death of a spouse can guide bereavement adjustment. Place of death and quality of death are end-of-life factors that are likely to influence death experiences and formation of subsequent personal memories. The current study employs narrative content-analysis to examine how place and quality of death relate to affective sequences present in older adults' final memories from the death of their spouse. Method: Based on power analyses, 53 older adults were recruited and completed a Final Memory Interview. They also reported place of spouse's death (ie, in hospital, out of hospital) and quality of death across four subscales. Final memory narratives were reliably content-analyzed (interrater agreements >.70), revealing positive and negative affective sequences, including: redemption, contamination, positive stability, and negative stability. Findings: Experiencing the death of a spouse in hospital was related to narrating final memories with contamination. In terms of quality of death, reporting a less comforting social environment at time of death was related to the presence of redemption in final memories. Reporting that one's spouse received appropriate medical care related to narrating memories that showed positive stability. Conclusions: Final memories are carried with the bereaved long after their loss. Positive final memories appear to stem from witnessing a comfortable, medically appropriate death outside of a hospital setting. End-of-life 'that is' between care and aligned with patients' values for place and treatment may be critical for spouses' formation of constructive final memories and bereavement adjustment.

Empathic communication between clinicians, patients, and care partners in palliative care encounters.

OBJECTIVE: Palliative care encounters often involve empathic opportunities conveyed by patients and their care partners. In this secondary analysis, we examined empathic opportunities and clinician responses with attention to how presence of multiple care partners and clinicians shapes empathic communication. METHODS: We used the Empathic Communication Coding System (ECCS) to characterize emotion-focused, challenge-focused, and progress-focused empathic opportunities and responses in 71 audio-recorded palliative care encounters in the US. RESULTS: Patients expressed more emotion-focused empathic opportunities than did care partners; care partners expressed more challenge-focused empathic opportunities than did patients. Care partners initiated empathic opportunities more frequently when more care partners were present, though they expressed fewer as the number of clinicians increased. When more care partners and more clinicians were present, clinicians had fewer low-empathy responses. CONCLUSION: The number of care partners and clinicians present affect empathic communication. Clinicians should be prepared for empathic communication focal points to shift depending on the number of care partners and clinicians present. PRACTICE IMPLICATIONS: Findings can guide development of resources to prepare clinicians to meet emotional needs in palliative care discussions. Interventions can coach clinicians to respond empathically and pragmatically to patients and care partners, particularly when multiple care partners are in attendance.

A Mixed-Method Examination of Emerging and Young Adult Cancer Caregivers' Experiences during the COVID-19 Pandemic.

Advanced cancer caregivers in emerging and young adulthood (EYACs; ages 18-35) are an understudied yet vulnerable caregiving population. The COVID-19 pandemic created new challenges for advanced cancer caregivers but also created unique contexts from which caregivers sometimes benefited. To understand how the pandemic may have positively and negatively impacted their caregiving and bereavement experiences, we examined EYACs' experiences of caring for and losing a parent with advanced cancer during the pandemic in comparison to those of EYACs with a parent who died outside the context of the pandemic. Eligible EYACs completed an online survey and semi-structured interview. Quantitative analyses compared responses for pre-pandemic EYACS (n = 14) and pandemic EYACs (n = 26). A thematic analysis of the interview transcripts of pandemic EYACS (n = 14) was conducted. Pandemic EYACs experienced non-significant but higher communal coping, benefit finding, negative emotional experiences, and caregiver strain than pre-pandemic EYACs. Thematic analysis revealed that the pandemic negatively affected EYACs' caregiving efficacy, personal well-being, interpersonal dynamics, and bereavement; shifts to remote work and schooling were reported as benefits. The findings can inform the design of resources to support EYACs whose parents died during the pandemic and who are navigating the healthcare system today.

Navigating the COVID-19 pandemic together: Discussions between persons with early-stage dementia and their adult children.

OBJECTIVES: Studies have separately examined the health impacts of the COVID-19 pandemic on persons with dementia and their caregivers. Less attention has been paid to the social and emotional impacts of the pandemic in this population or how these individuals are mutually coping with the pandemic. Guided by the social citizenship theory, this qualitative study sought to characterize how persons with dementia and their adult children are coping during this time with a focus on the strengths demonstrated by persons with dementia. METHODS: Participants were 43 dyads of individuals aged 55 and older with early-stage dementia and their adult children. Discussions between parent-child dyads were recorded. Using reflexive thematic analysis, themes related to social and emotional impacts of the pandemic and coping strategies were identified. RESULTS: Adult children shared with their parents how the pandemic resulted in reduced social engagement and challenging work arrangements. Dyads described how the pandemic positively impacted their relationship, allowing some of them to spend more time together. In coping with the pandemic, adult children provided instrumental support to their parents and parents reciprocated with emotional support. Participants also coped by making meaning of their situation during discussions. CONCLUSIONS: Findings characterize the resilience of persons with dementia and the mutuality of the relationship between both members of the care partner dyad, as both parents and adult children offered support to one another. Facilitating dyadic discussions may be a cost-effective way to sustain social connections and offer ongoing coping support through the pandemic or other challenging circumstances.

"Been there, done that:" A grounded theory of future caregiver preparedness in former caregivers of parents living with dementia.

BACKGROUND: Family caregivers offer essential support to persons living with dementia (PLWD). Providing care for more than one family member or close other across adulthood is becoming increasingly common, yet little is known about the ways that caregiving experiences shape caregiver preparedness. The current study presents a grounded theory of future caregiver preparedness in former caregivers of PLWD. METHOD: A coding team (five coders and two auditors) used Consensual Qualitative Research and grounded theory techniques to analyze transcripts from 32 semi-structured interviews with midlife former caregivers of parents who died following advanced Alzheimer's disease and related dementias. RESULTS: Qualitative analysis revealed two dimensions of future caregiver preparedness: caregiving confidence and caregiving insights. Narratives from caregiving experiences informed participants' descriptions of their future caregiver preparedness. Though some former caregivers described a positive (i.e., boosted or sustained) sense of caregiving confidence following care for their parents, others described a diminished (i.e., restricted or impeded) sense of confidence. Regardless of their confidence, all caregivers described specific caregiving insights related to one or more categories (i.e., caregiving self-conduct, care systems and resources, and relating with a care partner). CONCLUSIONS: Preparedness for future caregiving following recent care for a PLWD varies: For some, past experiences appear to offer cumulative advantages in anticipating future care roles, whereas for others, past experiences may contribute to apprehension towards, or rejection of, future care roles. Entering new caregiving roles with diminished confidence may have negative consequences for caregivers' and care partners' wellbeing. Multidimensional assessment of future caregiver preparedness in former caregivers of PLWD may support development of resources for former caregivers entering new caregiving roles.

Acceptability and use of an online health priorities self-identification tool for older adults: A qualitative investigation.

Objective: To examine the use of a web-based, self-directed health priorities identification tool for older adults with multiple chronic conditions (MCCs). Methods: We recruited a gender- and racially-diverse, highly educated sample of older adults with MCCs to engage with our My Health Priorities tool, then complete a semi-structured interview. Thematic analysis was used to examine interview transcripts. Results: Twenty-one participants shared perspectives on the acceptability and use of the tool. Three themes (with eleven subthemes) were generated to describe: website user experience feedback, the content of the health priorities identification process, and the tool's capacity to empower communication and decision making. Conclusion: Participants found this tool acceptable and easy to use, describing a variety of benefits of the priorities self-identification process and offered suggestions for refinement and broader implementation. Older adults with limited internet navigation abilities or misconceptions about the self-directed process may benefit from clinicians clarifying the purpose of the process or initiating priorities-aligned discussions. Innovation: This novel tool can help older adults with MCCs define what matters most for their health and healthcare, informing a variety of health decisions. This tool may enable and motivate patients to lead health priorities decision-making discussions with clinicians and care partners.

Empathic Communication in Specialty Palliative Care Encounters: An Analysis of Opportunities and Responses.

Background: Although empathic responding is considered a core competency in specialty palliative care (PC), patterns of empathic communication in PC encounters are not well understood. Objectives: In this secondary analysis, we delineate types and frequency of empathic communication and examine relationships between patient empathic opportunities and clinician responses. Design: We used the Empathic Communication Coding System to analyze empathic opportunities across three types: emotion (i.e., negative affective state), progress (i.e., stated recent positive life event or development), and challenge (i.e., stated problem or recent, negative life-changing event) and clinician responses. Setting/Subjects: Transcripts from a pilot randomized trial of communication coaching in specialty PC encounters (N = 71) audio-recorded by 22 PC clinicians at two sites in the United States: an academic health system and a community-based hospice and PC organization. Results: Empathic opportunities were frequent across encounters; clinicians often responded empathically to those opportunities (e.g., confirming or acknowledging patients' emotions or experiences). Even though challenge empathic opportunities occurred most frequently, clinicians responded empathically more often to progress opportunities (i.e., 93% of the time) than challenge opportunities (i.e., 75% of the time). One in 12 opportunities was impeded by the patient or a family member changing the topic before the clinician could respond. Conclusions: PC patients frequently express emotions, share progress, or divulge challenges as empathic opportunities. Clinicians often convey empathy in response and can differentiate their empathic responses based on the type of empathic opportunity. PC communication research and training should explore which empathic responses promote desired patient outcomes.

When Harry Met Sally: Older Adult Spouses' First Encounter Reminiscing and Well-Being.

BACKGROUND AND OBJECTIVES: Interest in reminiscence activities for older adults has grown in recent years, but the benefits of co-reminiscence are not well-known. Drawing from a narrative identity framework, this study examined older adult spouses' co-reminiscence about their first encounters. We hypothesized that perceived closeness and support increase when spouses co-reminisce and that greater perceptions of closeness and support after reminiscing relate to lower depressive symptoms and greater marital satisfaction in daily life. RESEARCH DESIGN AND METHODS: One hundred and one couples completed questionnaires measuring marital satisfaction and depressive symptoms at home and then participated in a laboratory session in which they co-reminisced about their first encounters. Self-reported perceived support and relationship closeness were obtained before and after reminiscence. t Tests and the Actor Partner Interdependence Model were used to examine hypotheses. RESULTS: As hypothesized, closeness and perceived support increased from pre- to postreminiscence for husbands and wives. In addition, one's own relationship closeness after reminiscence was positively associated with own marital satisfaction (actor effect). One's perceived support after reminiscence was positively related to spouse's marital satisfaction and negatively associated with their spouse's depressive symptoms (partner effects). DISCUSSION AND IMPLICATIONS: Findings suggest that co-reminiscence about early relationship development can boost feelings of closeness and support for older adults. Benefiting from co-reminiscence in this way also appears to indicate broader relationship and individual well-being. Brief co-reminiscence activities may nurture late-life relational well-being.

Quality of Life for Older Cancer Patients: Relation of Psychospiritual Distress to Meaning-Making During Dignity Therapy.

BACKGROUND: Nearly 500,000 older Americans die a cancer-related death annually. Best practices for seriously ill patients include palliative care that aids in promoting personal dignity. Dignity Therapy is an internationally recognized therapeutic intervention designed to enhance dignity for the seriously ill. Theoretically, Dignity Therapy provides opportunity for patients to make meaning by contextualizing their illness within their larger life story. The extent to which Dignity Therapy actually elicits meaning-making from patients, however, has not been tested. AIM: The current study examines (i) extent of patient meaning-making during Dignity Therapy, and (ii) whether baseline psychospiritual distress relates to subsequent meaning-making during Dignity Therapy. DESIGN: Participants completed baseline self-report measures of psychospiritual distress (i.e., dignity-related distress, spiritual distress, quality of life), before participating in Dignity Therapy. Narrative analysis identified the extent of meaning-making during Dignity Therapy sessions. PARTICIPANTS: Twenty-five outpatients (M age = 63, SD = 5.72) with late-stage cancer and moderate cancer-related symptoms were recruited. RESULTS: Narrative analysis revealed all patients made meaning during Dignity Therapy but there was wide variation (i.e., 1-12 occurrences). Patients who made greater meaning were those who, at baseline, reported significantly higher psychospiritual distress, including greater dignity-related distress (r = .46), greater spiritual distress (r = .44), and lower quality of life (r = -.56). CONCLUSION: Meaning-making was found to be a central component of Dignity Therapy. Particularly, patients experiencing greater distress in facing their illness use the Dignity Therapy session to express how they have made meaning in their lives.

Applying the Care and Communication Bundle to Promote Palliative Care in a Neuro-Intensive Care Unit: Why and How.

Background: Delivery of palliative care in neurointensive care units (neuro-ICUs) can be inconsistent, often due to absence of formal care triggers. The Care and Communication Bundle (CCB) of Quality Indicators provides a standardized process to deliver effective palliative care services in ICUs, but application of these indicators in this setting has not yet been systemically assessed. Objectives: To evaluate the fit of a CCB in the neuro-ICU through a novel scoring system and identify barriers to adherence. Design: CCB standards for a neuro-ICU were delineated. Assessment of documented indicators and barriers was conducted through electronic medical record retrospective review. Setting/Subjects: A 30-bed neuro-ICU in a large Academic Medical Center in the Southeastern United States. Chart reviews were conducted for 133 critically ill neurology and neurosurgery patients who expired between November 2018 and January 2020. Results: Results demonstrate moderate adherence to CCB standards, including excellent consistency in establishment of patient-centered communication and referral to supportive services (e.g., social work, spiritual support). Identified areas for improvement include documentation of patient and family involvement in care process (i.e., advance directive completion, interdisciplinary team meetings). Conclusions: Application of the CCB in the neuro-ICU is useful for examining adherence to time-based triggers of palliative care standards. The novel scoring system offers opportunities to motivate improvement and reduce variation in palliative care integration.

Palliative Care Services in the NeuroICU: Opportunities and Persisting Barriers.

BACKGROUND: End-of-life (EOL) supportive care, including palliative and hospice services, is an area of increasing importance in critical care. Neurointensivists face unique challenges in providing timely supportive care to terminally ill patients expected to expire in the NeuroICU. OBJECTIVE: This study explored the extent of effective utilization of, and recorded barriers to, palliative and hospice services in a dedicated 30-bed NeuroICU at a large academic medical center. DESIGN: A retrospective chart review of patients who expired in the NeuroICU was conducted. The timeline from patient admission to arrival of palliative care services was traced. Qualitative review of chart notes was used to identify barriers to provision of palliative services. SETTING: A total of 330 patients expired in the NeuroICU during the study period, including 176 from the neurology and 154 from the neurosurgical service. RESULTS: Across services, 146 expired patients were never referred to palliative care or hospice services. Of those referred, over one-third were referred more than 4 days past admission to the NeuroICU. On average, patients were referred with less than 1 day before expiration. Common barriers to referral for supportive services were documented (e.g., patient expected to expire, family declined service). CONCLUSIONS: Despite benefits of palliative care and an in-hospital hospice opportunity, we identified lack of referral, and particularly delays in referral to services as significant barriers. Our study highlights these as missed opportunities for patients and families to receive maximum benefits from these services. Future research should solidify triggers for EOL services in this setting.