Spiritual Uncertainty Among Hospice Providers: "There Were Tensions".

How providers of end-of-life care perceive spirituality both within themselves and for others can directly impact their ability to provide spiritual care to patients and families. Uncertainty about spirituality can contribute to the awkwardness of spiritual care. Spiritual uncertainty includes the questions, worries, and doubts people have about the meaning, beliefs, connections, self-transcendence, and value that comprise spirituality. This article reports qualitative findings from a mixed-methods study that sought to understand spiritual uncertainty among hospice providers. Data were collected from 28 hospice team members (nurses, physicians, social workers, and expressive therapist) using focus groups, reflective journals, and one-on-one interviews. An overarching theme emerged that described the tensions perceived by providers caring for hospice patients. Those tensions were further categorized as being interpersonal, intrapersonal, and transpersonal in nature. The identification of tension as a source of strain for providers delivering spiritual care is necessary to the development of future interventions that can assist providers and patients navigating end-of-life spirituality.

An Examination of Interactions between Hospice Health Care Providers and Adolescents with a Parent in Hospice.

Interviews conducted with adolescents living with a dying parent were examined to identify the type of interactions the adolescents had with members of a hospice healthcare team. Four types of interactions were identified: No Interactions, In-passing Interactions, Engaged Interactions, and Formal Interactions. Results indicated that most of the adolescents had no contact with the hospice healthcare team or interacted with providers only briefly. Some adolescents reported more engagement with one or more hospice healthcare team members, and a few received formal counseling services from the hospice healthcare team or outside provider. Overall, limited contact occurred because of logistics or because the teens perceived that hospice services were exclusively targeted to dying patients, not their families. Based on these findings, strategies to increase engagement between adolescents and hospice healthcare team are discussed.

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.

Two worlds: Adolescents' strategies for managing life with a parent in hospice.

OBJECTIVE: This study aimed to generate an explanatory model of the coping strategies that adolescents employ to manage the stressors they experience in the final months of their ill parent's life and shortly after their death. METHOD: The sample included 26 families of adolescents with a parent receiving care in a large hospice program in northeastern Ohio. A semistructured interview was conducted with 14 ill parents, 17 well parents/guardians, and 30 of their adolescent children before the parent's death and, additionally, with 6 of these families after the death. The interviews were audiotaped, transcribed verbatim, and analyzed using a grounded-theory approach. RESULTS: The participants described two worlds that constituted the lives of the adolescents: the well world of normal adolescence and the ill world of having a parent near the end of life. The adolescents experienced a common challenge of living in two worlds and responded to the challenge with a process we labeled "managing two worlds." Five stages through which adolescents manage their worlds were identified: keeping the ill world and the well world separate; having the ill world intrude into the well world; moving between the ill world and the well world; being immersed in the ill world; and returning to the well world having been changed by the ill world. SIGNIFICANCE OF RESULTS: The explanatory model of "managing two worlds" outlines a complex and nuanced process that changes over time. The model can be used by health professionals who seek to help adolescents navigate this critical time when their parents are dying or have recently died. These results can also be used to inform the development of interventions that assist families with strategies tailored to an adolescent's specific needs. Future research should investigate associations among the process of "managing two worlds" and outcomes related to adolescent bereavement.

Uncertainties experienced by family members when one parent is dying.

PURPOSE: This research examined uncertainty as a salient theme for families in which a parent was dying while receiving hospice care. METHODS: Interviews were conducted with 61 participants from 26 families in the parent study to explore the strategies used by adolescents with a parent in a hospice. Second interviews were conducted with 15 original participants after the death of their parent. Conventional content analysis was used to analyse data. RESULTS: Uncertainty was a prevalent and salient theme in the participants' stories revealing patterns about the causes, barriers, effects and strategies used to manage uncertainty. CONCLUSION: Uncertainties associated with the end of life can be problematic for some people, requiring attention by health professionals.

Exploring family relationships through associations of comfort, relatedness states, and life closure in hospice patients: A pilot study.

OBJECTIVE: Research at the end of life tends to focus on the dying patient's symptoms, often overlooking issues associated with family interactions. However, many families struggle just to maintain or initiate these valuable connections. The purpose of our pilot study was to explore family relationships at the end of life and investigate associations among perceived comfort, relatedness states, and life closure. METHOD: This descriptive study used a cross-sectional design, and a convenience sample (n = 30; 18 women; mean age = 71 years) was recruited from patients admitted to a large not-for-profit hospice in northeastern Ohio. In-person interviews using the Hospice Comfort Questionnaire, Relatedness States Visual Analog Scales, and the Life-Closure Scale provided data for analyses. RESULTS: Family interactions that were not associated with the physical tasks of caregiving were related to life closure (r = 0.36, p = 0.001), and life closure and comfort were highly correlated (r = 0.69, p < 0.001). Participants residing in an inpatient setting had higher levels of involvement (t[18] = -2.07, p = 0.05) and comfort in relationships (t[28] = -2.06, p = 0.05) than those in the home setting. SIGNIFICANCE OF RESULTS: This is the first known study investigating the associations among comfort, relatedness, and life closure at the end of life. The majority of participants had high levels of involvement and comfort in their relationships, and they preferred interactions that required minimal effort. Studies that focus on both patients' and family members' perceptions of relationships are needed as well as outcome studies that test simple interventions.