The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention.

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.

"People don't understand what goes on in here": A consensual qualitative research analysis of inmate-caregiver perspectives on prison-based end-of-life care.

BACKGROUND: The age demographic of the incarcerated is quickly shifting from young to old. Correctional facilities are responsible for navigating inmate access to healthcare; currently, there is no standardization for access to end-of-life care. There is growing research support for prison-based end-of-life care programs that incorporate inmate peer caregivers as a way to meet the needs of the elderly and dying who are incarcerated. AIM: This project aims to (a) describe a prison-based end-of-life program utilizing inmate peer caregivers, (b) identify inmate-caregiver motivations for participation, and (c) analyze the role of building trust and meaningful relationships within the correctional end-of-life care setting. DESIGN: A total of 22 semi-structured interviews were conducted with inmate-caregivers. Data were analyzed using Consensual Qualitative Research methodology. SETTING/PARTICIPANTS: All inmate-caregivers currently participating in the end-of-life peer care program at Briarcliff Correctional Facility were given the opportunity to participate. All participants were male, over the age of 18, and also incarcerated at Briarcliff Correctional Facility, a maximum security, state-level correctional facility. RESULTS: In total, five over-arching and distinct domains emerged; this manuscript focuses on the following three: (a) program description, (b) motivation, and (c) connections with others. CONCLUSION: Findings suggest that inmate-caregivers believe they provide a unique and necessary adaptation to prison-based end-of-life care resulting in multilevel benefits. These additional perceived benefits go beyond a marginalized group gaining access to patient-centered end-of-life care and include potential inmate-caregiver rehabilitation, correctional medical staff feeling supported, and correctional facilities meeting end-of-life care mandates. Additional research is imperative to work toward greater standardization of and access to end-of-life care for the incarcerated.

Screening for Delirium: Development and Validation of the Buffalo Delirium Scale for Use in a Home-Based Hospice Setting.

BACKGROUND: Delirium is a challenging occurrence among people at end of life. It can be difficult to detect and treat because of its episodic nature. The Buffalo Delirium Scale (BDS) was designed to identify risk factors for hospice patients in the prodromal stage of delirium. OBJECTIVE: This study evaluated the psychometric properties of items assessing delirium risk factors related to cognitive problems, psychological distress, and sleep problems. METHODS: Hospice nursing staff assessed patients with the 11-item BDS over a 6-month period as part of standard weekly visits to monitor for emerging signs of delirium, for example, sleep patterns, cognition, and behavior. SETTING/PARTICIPANTS: The rating period produced 4992 assessments from 817 hospice home care patients. RESULTS: Factor analysis of nurses' ratings identified 3 factors: (1) cognitive problems, (2) distress, and (3) sleep problems. Coefficient αs for these factors and total score were moderate to high (range = .66-.82). Nurses' ratings of presence of delirium highly correlated with scores on distress ( r = .40, P < .01), while dementia highly correlated with cognitive problems ( r = .50, P < .01). Analysis of at-risk cases with high BDS total scores where no delirium was assessed indicated that quality sleep may mitigate delirium onset. CONCLUSION: Preliminary psychometric testing suggests BDS to be a valid and appropriate measure for hospice patients. Use of BDS may help differentiate individuals in prodromal stage of delirium versus dementia. Examination of BDS scores may help identify patients for whom sleep interventions may delay onset of or reduce the frequency of delirium.

A consensual qualitative research analysis of the experience of inmate hospice caregivers: Posttraumatic growth while incarcerated.

A growing number of correctional facilities train inmates to provide end-of-life care for dying inmates. This study explores the phenomenological perspective of inmate-caregivers participating in an inmate-facilitated hospice program (IFHP) with regard to meaning and purpose in life, attitudes on death and dying, and perceived personal impact of participation. Twenty-two inmate-caregivers were interviewed at a maximum-security state correctional facility in the United States. The interviews were transcribed verbatim and analyzed using the Consensual Qualitative Research Methodology. Results suggest that participating in an IFHP may facilitate personal growth and transformation that mirrors the tenets of posttraumatic growth.