Deborah P. Waldrop

From Grandparent to Caregiver: The Stress and Satisfaction of Raising Grandchildren

The circumstances faced by grandparents who become caregivers for their grandchildren are complicated and stressful. Indepth interviews were conducted with 54 grandparent caregivers (37 grandmothers and 17 grandfathers). Analysis of qualitative data involved the use of QSR NUD*IST software for organizing and coding interview transcripts. Subsets of financial, family, and legal problems specific to grandparent caregiving were identified. Grandparent caregivers acquire problem-specific coping strategies, which include taking action, talking about feelings, religious faith, focus on the grandchild, outreach to others, and some “less desirable” means. Caregiver satisfaction was related to the joys of children, the tasks of child rearing, participating in grandchildrens activities, a new focus for life, and watching a childs accomplishments. This study identified the need for additional research about interventions for the stress and coping responses of grandparent caregivers.

Communication and advanced care planning in palliative and end-of-life care

Communication about and planning for the end of life has evolved with medical and technological changes. This article presents a focused literature review of Advance Directives (ADs), Advanced Care Planning (ACP), and communication in palliative and end-of-life care. Two focused Medline searches were conducted to locate articles that addressed ACP in the U.S. Content analysis was utilized to summarize and categorize the literature into five domains: (1) ADs, (2) ACP and communication, (3) Barriers to ACP, (4) Differential domains of ACP, and (5) Interventions to enhance the process. Policies and protocols for ACP and communication have been developed to facilitate the process in different patient populations and locations of care. Effective ACP is an essential component of person-centered end-of-life and palliative care.

LIFE AND DEATH DECISIONS: USING SCHOOL-BASED HEALTH EDUCATION TO FACILITATE FAMILY DISCUSSION ABOUT ORGAN AND TISSUE DONATION

Public education that encourages family discussions about organ and tissue donation can enhance understanding, facilitate a donors wishes and increase the numbers of donations. Action research methods were used to explore the impact of a student-initiated family discussion about donation. Most discussions were positive; only 7% middle school and 4% high school participants described them as “terrible.” “Getting it started” was the most difficult. High school students felt “very” or “somewhat” prepared, whereas middle school students only felt “somewhat prepared”. Guided family discussions ensure that families have accurate information about donation and an opportunity to talk about end-of-life choices in a non-crisis situation.

Hospice Decision Making: Diagnosis Makes a Difference

PURPOSE This study explored the process of decision making about hospice enrollment and identified factors that influence the timing of that decision. METHODS This study employed an exploratory, descriptive, cross-sectional design and was conducted using qualitative methods. In-depth in-person semistructured interviews were conducted with 36 hospice patients and 55 caregivers after 2 weeks of hospice care. The study was guided by Janis and Manns conflict theory model (CTM) of decision making. Qualitative data analysis involved a directed content analysis using concepts from the CTM. RESULTS A model of hospice enrollment decision making is presented. Concepts from the CTM (appraisal, surveying and weighing the alternatives, deliberations, adherence) were used as an organizing framework to illustrate the dynamics. Distinct differences were found by diagnosis (cancer vs. other chronic illness, e.g., heart and lung diseases) during the pre-encounter phase or before the hospice referral but no differences emerged during the post-encounter phase. IMPLICATIONS Differences in decision making by diagnosis suggest the need for research about effective means for tailored communication in end-of-life decision making by type of illness. Recognition that decision making about hospice admission varies is important for clinicians who aim to provide person-centered and family-focused care.

Rural–Urban Differences in End-of-Life Care: Implications for Practice

Most older adults with advanced illnesses express the wish to die at home. Home-based care from home health and hospice agencies makes this possible, but there are great geographic variations in utilization. Interviews and focus groups with key constituents in home health and hospice agencies across the 8-county region of Western New York State were used to explore how rural–urban location and agency type (home health or hospice) influence variations in end-of-life care. Emergent themes were: Rural-Urban Differences (geographic challenges, market forces, and programming issues) and End-of-life Care Issues (macrosocial, mezzosocial, and microsocial factors). Implications for social work practice are discussed.

Caregiving Systems at the End of Life: How Informal Caregivers and Formal Providers Collaborate

End-of-life care is moving out of hospitals and families are replacing professionals in the delivery of care as death approaches. Guided by concepts from the social care model (Cantor & Brennan, 2000), this qualitative study aimed to explore and describe the interrelationship between informal and formal care in a terminal illness. In-depth interviews with 64 families were audiotaped, transcribed, and coded. Genograms and ecomaps were created to visually represent caregivers’ sources of support and used to analyze caregiving networks. Results indicate that quasi-formal and informal social support become an important link between informal and formal caregiving. As a relative is dying, families value kindness and compassion, clear and straightforward communication, information, anticipatory guidance, and respect for self-determination from formal caregivers.

An exploratory analysis of intimate partner violence and postpartum depression in an impoverished urban population

Research on the relationship between intimate partner violence (IPV) and postpartum depression (PPD) is limited. Numerous antecedents and consequences of both IPV and PPD are noted in the literature; however, understanding the mechanisms by which intimate partner violence impacts the postpartum mood are not clearly understood. This study utilized retrospective chart reviews from a pediatric/perinatal social work outreach program to explore urban minority women experiences with IPV and depression both during pregnancy and after. Findings do not suggest a direct relationship between IPV and PPD; however, there was a high co-occurrence of prenatal depression and PPD. The severity of IPV appears to influence the occurrence and acuity of prenatal depression suggesting an indirect relationship. Implications for health and social work practitioners are discussed.

Caring for People With Intellectual Disabilities and Life-Limiting Illness: Merging Person-Centered Planning and Patient-Centered, Family-Focused Care

The number of older people with intellectual disabilities (IDs) is increasing in parallel to the lengthening life expectancy of the overall population. Little is known about the needs of older people with IDs who are at lifes end. Service providers who offer direct care to people with IDs have begun to develop partnerships with hospice and palliative care specialists to provide focused care that is more specialized for their clients or residents who are approaching the end of life. However, community-based programs utilize different philosophies of care that focus on the daily management of people with IDs compared to programs that focus on care at the end of life. Merging these two approaches to care in community-based residences or community-based programs for people with IDs brings challenges for both types of programs. This article compares person-centered planning and patient-focused, family-centered care and proposes means for merging the two seemingly disparate approaches to care.

Final decisions: how hospice enrollment prompts meaningful choices about life closure.

OBJECTIVE The purpose of this study was to explore and describe decisions that faced newly enrolled hospice patients and their caregivers after hospice enrollment. METHOD An exploratory, descriptive, cross-sectional design was employed using qualitative methods. In-depth in-person interviews were conducted with current hospice patients (n = 35) and caregivers (n = 45) from 53 families. RESULTS The decision to enroll in hospice was a critical juncture on the trajectory of a terminal illness that allowed patients and their families an opportunity to consider subsequent tasks that were important for life closure. A typology of five decisions is presented: (1) operationalized advance care planning (ACP): a renewed focus on decisions about care at lifes end; (2) surrogate decision-making: caregivers begin making both informal and formal decisions for the dying person; (3) meaning-making: the foreshortened time brings into focus decisions about seeing special people, attending events, and creating memories; (4) Location of death: decisions about whether the person wants to and can remain at home to die; and (5) final acts: decisions about funeral arrangements, wills, and leaving a legacy become central. ACP was found to exist on a continuum that ranged from absent ACP, dormant ACP, simplified ACP to activated ACP. Hospice enrollment became a catalyst for reactivating discussion of end-of-life choices. SIGNIFICANCE OF RESULTS Hospice enrollment prompts the need to consider subsequent important choices that contribute to meaningful life closure, are central to the completion of a family relationship, and may influence adaptation in bereaved caregivers. It is important for clinicians to recognize that well-timed encouragement to consider and explore the use of hospice services, although it may indeed diminish hope for cure or recovery, simultaneously offers an opportunity to engage with important and time-sensitive developmental tasks.

Prehospital Providers’ Perceptions of Emergency Calls Near Life’s End

The nature of emergency end-of-life calls is changing as people live longer and die from chronic illnesses. This study explored prehospital providers’ perceptions of (1) end-of-life 911 calls, (2) the signs and symptoms of dying, and (3) medical orders for life sustaining treatment (MOLST). The exploratory–descriptive pilot study was survey based and cross-sectional. Calls to nursing homes occur most often, (47.8% every shift). The MOLST was seen infrequently (57.9% rarely never). The most frequent signs and symptoms of dying were diagnosis (76%), hospice involvement (82%), apnea (75%), mottling (55%), and shortness of breath (48%). The MOLST identifies wishes about intubation (74%), resuscitation (74%), life-sustaining treatment (72%), and cardiopulmonary resuscitation (70%). Synergy exists between the fields of prehospital, hospice, and palliative medicine which offers potential for improved education and care.