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.

Social Work Involvement in Advance Care Planning: Findings from a Large Survey of Social Workers in Hospice and Palliative Care Settings.

BACKGROUND: Few data are available describing the involvement and activities of social workers in advance care planning (ACP). OBJECTIVE: We sought to provide data about (1) social worker involvement and leadership in ACP conversations with patients and families; and (2) the extent of functions and activities when these discussions occur. METHODS: We conducted a large web-based survey of social workers employed in hospice, palliative care, and related settings to explore their role, participation, and self-rated competency in facilitating ACP discussions. Respondents were recruited through the Social Work Hospice and Palliative Care Network and the National Hospice and Palliative Care Organization. Descriptive analyses were conducted on the full sample of respondents (N = 641) and a subsample of clinical social workers (N = 456). Responses were analyzed to explore differences in ACP involvement by practice setting. RESULTS: Most clinical social workers (96%) reported that social workers in their department are conducting ACP discussions with patients/families. Majorities also participate in, and lead, ACP discussions (69% and 60%, respectively). Most respondents report that social workers are responsible for educating patients/families about ACP options (80%) and are the team members responsible for documenting ACP (68%). Compared with other settings, oncology and inpatient palliative care social workers were less likely to be responsible for ensuring that patients/families are informed of ACP options and documenting ACP preferences. CONCLUSIONS: Social workers are prominently involved in facilitating, leading, and documenting ACP discussions. Policy-makers, administrators, and providers should incorporate the vital contributions of social work professionals in policies and programs supporting ACP.

A national agenda for social work research in palliative and end-of-life care.

BACKGROUND: Social work practitioners have the potential to make meaningful contributions to improving palliative and end-of-life care because of their work in varied and divergent practice settings across the lifespan, their role in addressing mental health needs, grief and psychosocial aspects of well-being, and their commitment to promoting culturally competent, effective, and humane care, particularly for the most vulnerable and oppressed members of society. The federal government and several national and professional institutes have called for steps to increase the participation of social work researchers as well as to improve the quality, quantity, and dissemination of social work research. OBJECTIVE: This paper proposes a national agenda for social work research in palliative and end-of-life care. DESIGN: The agenda was developed by a multimethod effort that included an extensive analysis of the literature, discussions with a purposive national sample of social work leaders in palliative or end-of-life care, and consideration of established national research priorities. RESULTS: Eleven domains of palliative and end-of-life care and their related research objectives were identified. Their relevance to the mission and value base of the profession and to established national research priorities is highlighted. CONCLUSIONS: This research agenda should serve to stimulate social work research initiatives to improve palliative and end-of-life care, and ultimately inform direct practice, policy and professional education.

Telling adolescents a parent is dying.

BACKGROUND: When a parent is terminally ill, one of the major challenges facing families is informing children of the parent's condition and prognosis. This study describes four ways in which parents disclose information about a parent's life-threatening illness to their adolescent children. METHODS: We audio-recorded and transcribed 61 individual interviews with hospice patients who were recruited from a large hospice in northeastern Ohio, their spouses/partners, and their adolescent children. The interviews were coded and analyzed using a constant comparison approach. RESULTS AND CONCLUSIONS: Families inform adolescents about the progression of a parent's terminal illness in characteristic ways that remain fairly consistent throughout the illness, and are aimed at easing the adolescents' burden and distress. The families engaged in the process of disclosure in one of four ways: measured telling, skirted telling, matter-of-fact telling, and inconsistent telling. These results will inform the development of interventions that assist families with disclosure and are tailored to each family's communication style.

Current approaches to helping children cope with a parent's terminal illness.

Much has been learned about childhood bereavement in the last few decades as studies have increasingly focused on the direct interviewing of children about their recovery from the tragic loss of a parent. It has been shown that children do indeed mourn, although differently from adults. Important moderating and mediating variables have been identified that impact their recovery from the loss of a parent, which can be the focus of intervention. When death is expected, the terminal phase of an illness has been found to be particularly stressful for children, yet seldom investigated. Similarly, few studies have explored the impact of development on children's experience and expression of grief. We present research findings that clarify phases in children's experience during the terminal illness, hospital visits, the death, and its immediate aftermath, as well as how the parent is mourned and issues in longer term reconstitution. Variations in children's responses in these phases are described as they were experienced by 87 children from 3 different developmental groupings: 3 to 5 years, 6 to 8 years, and 9 to 11 years. Recommendations are suggested for parents and professionals about ways to understand and support children during the terminal illness, at the time of death, and during the phase of reconstitution.

Setting an agenda for social work in end-of-life and palliative care: an overview of leadership and organizational initiatives.

This article describes leadership efforts within social work to promote, enhance, and shape the future of social work practice, education, and research in end-of-life and palliative care. The background and outcomes of the Project on Death in America, Open Society Institute's Social Work Leadership Development Award Program, and the 2002 Social Work Leadership Summit on End-of-Life and Palliative Care are reviewed.

Evaluation of a preventive intervention for bereaved children.

One hundred eighty four families completed a twelve month parent-guidance (experimental) or a parent telephone-monitoring (comparison) intervention initiated during one parent's terminal cancer illness and continued until six months after the death. Children in the parent-guidance intervention reported greater reduction in trait anxiety and greater improvement in their perceptions of the surviving parent's competence and communication, a primary goal of the intervention. Identified problems in implementing evaluations of experimental interventions with bereaved children include the following: (1) Available and commonly used standardized psychopathology measures do not adequately capture changes in non-psychopathological but bereaved distressed, grieving children and adolescents. (2) Experimental and control samples usually have very few children with psychopathology (scores). Relatively small changes in scores within the normal range may be insufficient to allow measurement of meaningful differences between interventions. (3) Both experimental and control interventions must provide sufficient help to retain families for later evaluation. The level of general support and referral for other treatments, if adequately done, may be sufficient to blur differences in standardized psychopathology measure scores between any two interventions. It may only be in the specifically targeted intervention area that differences can be expected to be significant in adequately resourced families.

Adolescent grief: "It never really hit me...until it actually happened".

In the United States, more than 2 million children and adolescents (3.4%) younger than 18 years have experienced the death of a parent. When death can be anticipated, as with a terminal illness, and even when the death is sudden, as in the September 11, 2001, attacks on the World Trade Center and Pentagon, physicians and other health care professionals have an opportunity to ameliorate the impact of the loss. Developmental factors shape adolescents' reactions and responses to the death of a parent. Recent research in childhood and adolescent bereavement shows how health professionals can support the adolescent's coping strategies and prepare the family to facilitate an adolescent's mastery of adaptive tasks posed by the terminal phase of the parent's illness, the death, and its aftermath. Robert, a bereaved 14-year-old, illustrates some of these adaptive challenges.