Understanding Hospice Patients' Beliefs About Their Life Expectancy: A Qualitative Interview Study.

BACKGROUND: Patients with advanced disease often overestimate their life expectancy, which potentially impacts decision making. OBJECTIVE: To examine the nature and source of hospice patients' life expectancy estimates, about which little is known. DESIGN: Using semi-structured interviews, patients were asked to estimate their life expectancy and elaborate on their response. SETTING/SUBJECTS: Participants were hospice patients (n = 20, 55% male; 60% cancer). MEASUREMENT: We conducted thematic analysis using open and focused coding. RESULTS: Many participants had difficulty answering the life expectancy question and expressed uncertainty about when they would die. One-third overestimated their length of life relative to actual survival. The most common source of patients' prognostic beliefs was knowledge about their body, including physical symptoms and change over time. Half of patients reported that a provider had given them a prognostic estimate, and one-third agreed with, or gave estimates consistent with, the provider's estimate. Some patients said providers do not know prognosis or that time of death was unknowable. CONCLUSIONS: Key findings were that 1) many hospice patients had difficulty estimating life expectancy, and 2) hospice patients' life expectancy estimates were frequently based on their body and not on information from medical providers. These findings have implications for measuring prognostic awareness, as valid assessment is a necessary component of determining whether prognostic awareness is beneficial for patients. Future research should examine how life expectancy estimates are associated with well-being and whether results extend to larger samples of patients with advanced disease not in hospice.

Family caregiver recruitment via social media: challenges, opportunities and lessons.

BACKGROUND: Illness blogs are a way seriously ill people communicate publicly about their illness journey. As communication about serious illness increases on social media, it is important to evaluate how this affects the family caregiver. However, identifying and accessing family caregivers remains challenging, especially via social media. PURPOSE: The aim of this article is to report the opportunities, challenges and lessons learned from using social media to recruit family caregivers. METHODS: Recruitment methods included posting study invitations on illness blogs, advertising through Facebook and placing study fliers in the community. RESULTS: Using social media to recruit was inexpensive and provided a wide geographical reach. One important finding was discovering the importance of using language in the recruitment materials that family caregivers could identify with to help deem themselves as eligible to participate in the study.

Parental relationships beyond the grave: Adolescents' descriptions of continued bonds.

OBJECTIVE: Many people experience an ongoing relationship with a deceased loved one. This is called a "continued bond." However, little is known about the adolescent experience with continued bonds once a parent has died. This study describes three ways that adolescents continue their relationship with a parent after that parent's death. METHOD: Individual semistructured interviews were conducted with nine adolescent children of deceased hospice patients from a large hospice in northeastern Ohio as part of a larger grounded-theory study. The interviews were audiotaped, transcribed verbatim, and analyzed using a conventional content analysis approach. RESULTS: Adolescents continued their bonds with deceased parents in one of three ways: experiencing encounters with the deceased parent, listening to the inner guide of the parent, and keeping mementos to remind them of the parent. SIGNIFICANCE OF RESULTS: The ways that the adolescents continued their bond with a deceased parent assisted them in creating meaning out of their loss and adjusting to life without that parent. Our results can be used by health professionals and parents to help adolescents after a parent has died.

Recruiting for end of life research: lessons learned in family research.

A main hurdle for end of life research is recruitment of patients. Researchers can enroll interested patients and their families for end of life studies by gaining the trust of the hospice staff, who can make valuable referrals of patients nearing the end of life. Participants in the study should be made as comfortable as possible and not be coerced into the interview process. Once the patients have confidence in the researchers, they are more than willing to be a part of the research process because it can prove to be cathartic to many of the patients and their family members.