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Knowledge of patient end-of-life (EOL) wishes and discussions are vital for family caregivers, including children and youth who may be in caregiving roles ("young carers" or "caregiving youth"). However, little is known about caregiving youth awareness and perceptions of EOL issues. This study sought to explore caregiving youth knowledge of EOL wishes and their willingness for EOL discussions. Face-to-face interviews with 40 caregiving youth ages 10-20, who have a parent with Huntington's disease (HD), provided information about their knowledge of the presence of their ill parent's living will (LW) and durable power of attorney for health care (DPAHC), and willingness to talk with the parent about EOL choices and possibility of death. Less than one-half of the participants were aware of the parent's LW or DPAHC. Content analysis revealed themes in reasons to want or not want EOL discussion with the parent: respect for the parent's wishes, caregiving youths' opinion not valued, and avoidance of EOL issues. Themes also included reasons to not want discussion with the parent about possibility of death: protecting the parent, parent in denial, parent not ready, and realization of the terminal outcome. Findings suggest HD patients and their caregiving youth need support for open EOL discussions, and could benefit from educational programs and support groups around EOL issues.

This study explored next-of-kin's retrospective accounts of hospice and palliative care discussions for hospitalized veterans. In-depth, face-to-face interviews were used to generate narrative accounts of 78 next-of-kin's experience of their loved one's hospital care during the last days of the patient's life. One-third of participants reported taking part in a hospice or palliative care discussion during the patient's final hospitalization. In over one-half of those cases, the patients died before discharge or transfer to hospice or palliative care was accomplished. Hospice and palliative care discussions in the hospital setting shaped family perceptions of the patients' care, directed family efforts in the days prior to death, and engendered anticipation of remaining quality time with the patient. Discussions about hospice or palliative care have meaning, emotional impact, practical effects, and unintended consequences for next-of-kin. Social workers in hospital settings can play a critical role in supporting family members through the hospice and palliative care discussion process and facilitate timely care transitions. They also can attend to the psychosocial concerns of family members, particularly when death occurs prior to discharge to hospice or transfer to an inpatient palliative care service.

This study explores the support needs of an isolated and little known caregiver population: children and adolescents aged 12–20, who provide care to a parent with Huntington’s disease (HD), often referred to as “young carers.” Stigmatizing symptoms of HD, including depression, personality change, psychosis, and involuntary movements, often leave family caregivers isolated with little support. Increasing attention is paid to the support of adult caregivers, yet little attention has been given to young carers in the family, including support needs they describe as important. Individual interviews were conducted with 40 young carers from 18 states, recruited through the Huntington’s Disease Society of America. Participants were asked two open-ended questions: (1) what things can people do to help you care for your mom/dad? (2) what things do you need to help you care for your mom/dad that you do not currently have? Content analysis was used to analyze the interview transcripts. Data analysis elicited three m...

This study explored terminally ill elders' anticipation of future support, which may be particularly important due to their vulnerable state and resulting support needs. Qualitative data was gathered from face-to-face interviews with 100 elders receiving hospice care; 85 of whom discussed anticipating future support. Content analysis revealed that anticipating support was based on current experiences of received support and that the definition of future extended beyond death for some who anticipated surviving loved ones receiving grief support. Not all anticipation of support evoked positive feelings. Some respondents anticipated receiving unhelpful support or felt guilty about anticipating support from overburdened caregivers. Implications are discussed regarding the role of social workers in working with caregivers to insure that the terminally ill elders they care for can anticipate future support in their dying process and after death.