The Core Bereavement Items (CBI) is a commonly used measure that assesses core grief and bereavement experiences. Although previous psychometric testing has been conducted, no studies have assessed its use specifically aimed at adults aged 50 and older or for those who lost a loved one who was hospice care. This is critical, as losses and additional obstacles in bereavement compound throughout the aging process. The present study investigated reliability, content validity, and internal structure of the CBI in bereaved adults aged 50 and older whose loved one died while in hospice care (N = 205). Associations based on age, marital status, and relationship with the died patients were consistent with preexisting research. Results of a Cronbach a reliability test found that the CBI has excellent reliability in this population. Further, content validity was established based on the judgment of subject matter experts. Exploratory factor analysis supported a 1-factor structure, with all items loading as General Grief Experiences. Based on this analysis, the CBI is a valid and reliable tool when used with adults aged 50 and older.
BACKGROUND: While the majority of research assesses the impact of end-of-life dreams and visions (ELDVs) on patients, more recent research has begun to explore their impact on family caregivers (FCG).
OBJECTIVE: This study evaluates the relationship between general attitudes about dreams, perspectives of ELDV and their role the bereaved FCG experience.
DESIGN: Mixed-methods using a cross-sectional survey and five focus groups.
SETTINGS/SUBJECTS: A total of 500 FCGs of patients who died under hospice care were recruited for the survey. Focus group members were self-selected through identified interest from the survey.
MEASUREMENTS: In addition to demographics and ELDV prevalence, general attitude toward dreams, ELDV perspectives, and impact on grief were assessed using ad hoc surveys.
RESULTS: Participants reporting ELDVs were significantly more validating of everyday dreams (p < .001). Positive attitudes toward dreams strongly correlated with comfort from ELDVs for both patients and FCGs. Openness correlated positively with comfort from the ELDV for both the patient (r = .149, p = .038) and FCG (r = .217, p = 0.002) and negatively with fear/anxiety (r = -.141, p = 0.050). Negative ELDV perceptions (ex. ELDVs were caused by medications) affected grief in areas such as accepting the loss (r = -.235, p = .010) or maintaining connection (r = -.255, p = .010) with the deceased. Focus group discussions were thematically analyzed resulting in 4 themes: ELDV narrative, Connection, Reflection, and Other Experiences.
CONCLUSIONS: Positive general attitudes toward dreams and positive ELDV perceptions are correlated with better bereavement outcomes. Therefore, patient and family education on ELDVs that focuses on awareness and understanding of ELDVs may enhance clinical outcomes for both family and patients.
Background: The ability to perceive care goals of the dying may be an indicator of future quality patient-centered care. Research conducted on end-of-life goals indicates discrepancies between patients and physicians.
Objective: The aim of this study is to compare end-of-life care goals of hospice patients and medical student perceptions of patient care goals.
Design: Hospice patients and medical students were surveyed on their care goals and perceptions, respectively, using an 11-item survey of goals previously identified in palliative care literature. Medical student empathy was measured using the Interpersonal Reactivity Index.
Settings/Participants: Eighty hospice patients and 176 medical students (97 first-year and 79 third-year) in a New York State medical school.
Results: Medical students ranked 7 of the 11 care goals differently than hospice patients: not being a burden to family ( p < .001), time with family and friends ( p = .002), being at peace with God ( p < .001), dying at home ( p = .004), feeling that life was meaningful ( p < .001), living as long as possible ( p < .001), and resolving conflicts ( p < .001). Third-year students were less successful than first-year students in perceiving patient care goals of hospice patients. No significant differences in medical student empathy were found based on student year.
Conclusions: Medical students, while empathetic, were generally unsuccessful in perceiving end-of-life care goals of hospice patients in the psychosocial and spiritual domains. Differences impeding the ability of medical students to understand these care goals may be generationally based. Increased age awareness and sensitivity may improve future end-of-life care discussions. Overall, there is a need to recognize the greater dimensionality of the dying in order to provide the most complete patient-centered care.
Background: End-of-life dreams and visions (ELDVs) are a recognized phenomenon that can occur as part of the normal dying process. Data suggest that ELDVs can provide comfort, foster discussion of waking life concerns, and lessen the fear of death. Current literature on ELDVs focuses on the prevalence, content, and effects of ELDVs exclusively in adult populations.
Methods: We present the case of a 15-year-old girl with terminal glioblastoma who was enrolled in a pediatric palliative care program and later in hospice care. During her end-of-life trajectory, the patient experienced two distinct ELDV experiences, from which she recalled vivid details regarding the setting, characters, and content. These ELDV experiences afforded comfort and meaning to the patient and her family through her end-of-life trajectory as well as provided relief for her grieving family.
Conclusion: In the case presented, ELDVs appear to show similar characteristics and impact in the adolescent population as described in the previous literature examining adult ELDVs. In addition, this case demonstrates the potential benefits of ELDV awareness for the bereaved. Clinicians working with pediatric and adolescent end-of-life populations should take note of the potential for ELDVs and the impact they can have on both patients and families.
The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. During the social media portion of the POM-PPCG, participants were presented with weekly themes based on a meaning-making curriculum. In response, they took photographs, applied either audio or typed narratives, and shared them via social media. Ninety-five photographs with narratives were produced during the intervention. Through thematic qualitative analysis with consensual qualitative research components, 5 themes were identified: Love, Challenges, Loss, Coping, and The New Normal. This study adds to existing literature by shedding light on the experiences of caregivers of children with palliative care needs. Findings from this research contribute not only to the innovative use of qualitative methods but also to the clinical knowledge and practice regarding the pediatric palliative caregiver experience.
Background: End-of-life dreams and visions (ELDVs) can provide both meaning and comfort to individuals nearing death. While research has examined the prevalence and content of ELDVs, little is known on how dreaming at end of life may affect psychological processes.
Objective: This study aimed to explore differences in posttraumatic growth (PTG) between hospice patients who experience ELDVs and hospice patients who do not experience this phenomenon.
Design: This is a multimethod cross-sectional comparison study.
Settings/Subjects: 70 hospice patients (35 with ELDV experiences and 35 without ELDV experiences) were recruited after being admitted to a hospice inpatient unit.
easurements: PTG was assessed using a modified version of the Posttraumatic Growth Inventory (PTGI). Demographic information, ELDV occurrence, and a brief description of ELDVs were also collected.
Results: Significant differences emerged between groups in terms of personal strength (p = 0.012), spiritual change (p = 0.002), and overall PTG (p = 0.019). Patients with ELDV experiences had higher scores on all subscales as well as overall PTG compared to nondreaming patients.
Conclusions: Dreams and visions at the end of life affect PTG of dying individuals in hospice care. Further research should be conducted between groups to examine the effects ELDVs may have on other psychological processes.
Background: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need.
Objective:This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers.
Design:Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close.
Setting/Participants:Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York.
Results: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants (P = .022). Exit interviews conveyed satisfaction with the intervention.
Conclusions: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.
Background: End-of-life dreams and visions (ELDVs) are prevalent experiences that provide comfort and meaning to dying individuals. Limited research has examined the impact of ELDVs on the bereaved.
Objective: This study aimed to explore differences in self-reported grief for people whose loved ones shared ELDVs and those who did not, and to describe the role of ELDVs in the grieving process.
Design: Mixed-methods cross-sectional survey.
Settings/Subjects: A total of 228 bereaved family caregivers (FCGs) of patients who died while under the care of a comprehensive hospice program were recruited.
Measurements: Demographics and ELDV prevalence were collected. Bereavement was assessed using the Core Bereavement Items (CBI) a validated measure. Impact on grief was also evaluated using an ad hoc tool.
Results: Comfort from dreams significantly related to total CBI score (r = 0.224, p = 0.047) as well as the images and thoughts (r = 0.258, p = 0.025) and acute separation subscales (r = 0.224, p = 0.047). Comfort from dreams had a positive relationship with accepting the reality of loss (r = -0.511, p < 0.001), working through the pain of grief (r = -0.556, p < 0.001), adjusting to the new environment (r = -0.405, p = 0.001), and continuing bonds (r = -0.538, p < 0.001). CBI scores were not significantly different between caregivers who reported loved ones with ELDVs and others. Open-ended responses were thematically analyzed resulting in three emergent themes: comfort, reflection and emotions, and sense-making.
Conclusions: ELDVs' impact extends beyond those experiencing them to bereaved loved ones. Bereaved FCGs report that comforting ELDVs experienced by their dying loved ones influenced their grief process in terms of the Worden's tasks of mourning.