Abstract
Gage LA, Washington K, Oliver DP, et al.: Family members' experience with hospice in nursing homes. Am J Hosp Palliat Med 2016;33:354–362.
Research has documented numerous benefits and challenges associated with receiving hospice care in nursing homes; however, the study of this partnership from the perspective of residents' family members has been limited. The purpose of this qualitative study was to explore family members' experience with hospice services received in the nursing home setting. Researchers conducted a secondary data analysis of 175 family member interviews using a thematic analytic approach. Findings highlighted the critical role of communication in supporting residents and their family members. Care coordination, support and oversight, and role confusion also impacted family members' experience of hospice care in the nursing home. The authors suggest that efforts directed at enhancing communication and more clearly articulating the roles of members of the healthcare team are indicated.
Hupcey JE, Kitko L, Alonso W: Patients' perceptions of illness severity in advanced heart failure. J Hosp Palliat Nurs 2016;18:110–114.
Heart failure is a devastating chronic illness that impacts almost 6 million Americans. Complicating the high prevalence of heart failure is a five-year mortality rate approaching 50%. In addition, patients with advanced heart failure face greater risk of death and rehospitalization. However, little progress has been made in the use of palliative or end-of-life services. To help determine why patients may not be receiving services, this study attempted to describe the perceptions of illness severity and terminality of advanced heart failure patients during the terminal course of the disease. One hundred individuals were interviewed and asked to describe their disease and where they see themselves in one year. For participants who died during the study, services utilized at end of life were documented. Results demonstrated that the majority of participants did not understand the severity or the terminality of heart failure. Of the 51 participants who died, only 14% perceived heart failure as terminal. Moreover, regardless of predicted survival, few patients received palliative care.
Tabler J, Utz RL, Ellington L, et al.: Missed opportunity: Hospice care and the family. J Soc Work End Life Palliat Care 2016;11:224–243.
A typical mission statement of hospice services is to provide quality, compassionate care to those with terminal illness, and to support families through caregiving and bereavement. This study attempted to explore the ways that bereavement needs of caregivers, either predeath or postdeath of their spouse/partner, were addressed using qualitative retrospective phone interviews with 19 caregivers whose spouse/partner was enrolled in hospice care for cancer. Results demonstrated that overall, participants expressed high satisfaction with hospice care, most often noting a high satisfaction with the quality of care provided to their spouse/partner. During the predeath phase, caregivers recalled being so focused on their spouse/partner's needs that they rarely spoke with hospice staff about their own personal needs and emotions. Participants said that bereavement counseling occurred primarily after the death of the spouse/partner, in the form of generic pamphlets or phone calls from someone they had not met during prior interactions with hospice staff. These findings suggest that caregivers' high satisfaction with hospice may be more associated with the quality of care provided to the spouse/partner than with bereavement support they received. The authors suggest that their findings illustrated a potential missed opportunity for hospices to address the family-oriented goals that are commonly put forward in hospice mission statements. [The same findings from this study were also addressed in The Gerontologist 2015;55(Suppl 2):228.]
Beesley VL, Janda M, Goldstein D, et al.: A tsunami of unmet needs: Pancreatic and ampullary cancer patients' supportive care needs and use of community and allied health services. Psychooncology 2016;25:150–157.
People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer; however, no previous research has documented the supportive care needs of this population. The authors' objective of this study was to describe people's needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Pancreatic or ampullary cancer patients (n = 136, 54% of those eligible) completed a survey, which assessed 34 needs across five domains (Supportive Care Needs Survey-Short Form) and use of health services. Differences by resection were compared with chi-squared tests. Results demonstrated that overall 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs, whereas health system/information (32%), patient care (21%), and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included “not being able to do things they used to do” (41%), “concerns about the worries of those close” (37%), and “uncertainty about the future” (30%). Patients with nonresectable disease reported greater individual information needs, but their needs were otherwise similar to those of patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18%, and 15% consulted a dietician, complementary medicine practitioner, or mental health practitioner, respectively. Palliative care access was greater (59% vs. 27%) among those with nonresectable disease. The authors conclude that very high levels of needs were reported by people with pancreatic or ampullary cancer, and that future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.
Warner EL, Kent EE, Trevino KM, et al.: Social well-being among adolescents and young adults with cancer: A systematic review. Cancer 2016;122:1029–1037.
A cancer diagnosis during adolescence or young adulthood may negatively influence social well-being. The existing literature concerning the social well-being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research. A systematic review of the scientific literature published in English from 2000 through 2014 was performed. Eligible studies included patients and survivors diagnosed between the ages of 15 and 39 years that reported on social well-being domains in the City of Hope Cancer Survivor Quality of Life Model. Each article was reviewed for relevance using a standardized template. A total of 253 potential articles were identified. After exclusions, a final sample of 26 articles identified domains of social well-being that are believed to be understudied among AYAs with cancer: (1) educational attainment, employment, and financial burden; (2) social relationships; and (3) supportive care. Results demonstrated that AYAs with cancer report difficulties related to employment, educational attainment, and financial stability. They also report problems with the maintenance and development of peer and family relationships, intimate and marital relationships, and peer support. Supportive services are desired among AYAs. Few studies have reported results in reference to comparison samples or by cancer subtypes. The authors conclude that future research studies on AYAs with cancer should prioritize the inclusion of underserved AYA populations, more heterogeneous cancer samples, and comparison groups to inform the development of supportive services. Priority areas for potential intervention include education and employment reintegration, and social support networks.