About a Third of Nursing Home Social Services Directors Have Earned a Social Work Degree and License.

Nursing home (NH) residents have high psychosocial needs related to illness, disability, and changing life circumstances. The staff member with the most expertise in addressing psychosocial needs is the social worker. However, federal regulations indicate that only NHs with 120+ beds need hire a social services staff member and that a "qualified social worker" need not have a social work degree. Therefore, two-thirds of NHs are not required to employ a social services staff member and none are required to hire a degreed social worker. This is in stark contrast to NASW professional standards. Reporting findings from this nationally representative sample of 924 social services directors, we describe the NH social services workforce and document that most NHs do hire social services staff, although 42% of social services directors are not social work educated. 37% of NHs have a degreed and licensed social worker at the helm of social services. The odds of hiring a degreed and licensed social workers are higher for larger NHs, especially if not-for-profit and not part of a chain. NH residents deserve psychosocial care planned by staff with such expertise. Quality of psychosocial care impacts quality of life.

Validation of the Quality of Dying-Hospice Scale.

CONTEXT: Measuring the quality of dying (QOD) experience is important for hospice providers. However, few instruments exist that assess one's QOD; and those that do have not been well validated in hospice. OBJECTIVES: This study tested the properties of the QOD-Hospice Scale (QOD-Hospice) to provide preliminary validation data on internal consistency, inter-rater reliability, convergent validity, and factorability in a hospice setting. Additionally, results of the factor analysis were used to create a brief version of the measure. METHODS: Bereaved informal caregivers who had provided care for a hospice patient were recruited from a large nonprofit hospice. Participants completed post-death surveys, which included the QOD-Hospice and other study measures. Convergent validity was tested by exploring hypothesized associations with related instruments measuring negative emotional states (Depression Anxiety Stress Scale-21), emotional grief (Texas Revised Inventory of Grief-2), social support (Lubben Social Network Scale-6), and a single-item measure of satisfaction with hospice care. RESULTS: A total of 70 caregivers participated in the survey (40 primary and 30 secondary caregivers), most of whom were female (67%) and white (81%). The QOD-Hospice produced an alpha of 0.86, an intraclass correlation of 0.49 between caregivers of the same decedent, and was correlated with all measures testing convergent validity (P<0.05; in the hypothesized direction) and most, but not all, subscales. An exploratory factor analysis elicited two factors, Preparation (seven items) and Security (six items), which were combined to create a 13-item version of the scale, the QOD-Hospice-Short Form. CONCLUSION: Although further testing of the QOD-Hospice measures is needed, preliminary evidence suggests that the instruments are reliable and valid for use in hospice.

Long-distance caregiving: a systematic review of the literature.

There are an estimated 5-7 million long-distance caregivers (LDCs) in the United States, but little is known about this growing population. This study reviewed the literature on LDCs and examined 16 identified studies. Although studies defined LDCs differently, a composite description of who LDCs are and what they do is presented. LDCs make substantial contributions in terms of physical, financial, and social support. Distance complicates communication about care recipients' health and care needs, as well as the types of care that can be provided. Related to this, geographic separation can exacerbate care-related stressors. Implications for future research were also identified.

The end-of-life experience in long-term care: five themes identified from focus groups with residents, family members, and staff.

PURPOSE: We designed this study to examine the end-of-life (EOL) experience in long-term care (LTC) based on input from key stakeholders. DESIGN AND METHODS: The study consisted of 10 homogeneous focus groups drawn from a purposive sample of LTC residents (2 groups; total n = 11), family caregivers (2 groups; total n = 19), paraprofessional staff (3 groups; total n = 20), and licensed/registered staff (3 groups; total n = 15) from five nursing homes and eight residential care/assisted living communities in North Carolina. We analyzed data by using grounded theory techniques to elicit manifest and latent themes. RESULTS: Five overarching themes emerged: (a) components of a good death in LTC, (b) normalcy of dying in LTC, (c) the role of relationships in the provision and receipt of care, (d) hospice contributions to care at the EOL in LTC, and (e) stakeholder recommendations for enhancing EOL care in these settings. Underlying these themes was one central category, closeness, based on physical proximity and frequency of contact. IMPLICATIONS: Findings suggest that promoting collaborative relationships among the four stakeholder groups, increasing social worker involvement, and removing barriers to hospice may enhance the EOL experience in LTC.

Pain, dyspnea, and the quality of dying in long-term care.

OBJECTIVES: To evaluate the relationship between pain, dyspnea, and family perceptions of the quality of dying in long-term care. DESIGN: After-death interviews. SETTING: Stratified random sample of 111 nursing homes and residential care and assisted living facilities in four states. PARTICIPANTS: Paired interviews from facility staff and family caregivers for 325 deceased residents. MEASUREMENTS: The outcome variable was the Quality of Dying in Long-Term Care (QOD-LTC), a psychometrically sound, retrospective scale representing psychosocial aspects of the quality of dying, obtained from interviews with family caregivers. Facility staff reported the presence, frequency, and severity of pain and dyspnea. RESULTS: During the last month of life, nearly half of residents experienced pain or dyspnea. QOD-LTC scores did not differ for residents with and without pain (4.15 vs 4.02, P=.16). Overall, residents with dyspnea had better QOD-LTC scores than those without dyspnea (4.20 vs 3.99, P=.006). The association between dyspnea and a better QOD-LTC score was strongest in cognitively impaired residents and for those dying in residential care and assisted living facilities. CONCLUSION: For residents dying in long-term care, pain and dyspnea were not associated with a poorer quality of dying as perceived by families of deceased residents. Instead, dyspnea may alert staff to the need for care. Initiatives to improve the quality of dying in long-term care should focus not only on physical symptoms, but also on the alleviation of nonphysical sources of suffering at the end of life.

Measuring the quality of dying in long-term care.

OBJECTIVES: To describe two versions of a new measure, The Quality of Dying in Long-Term Care, for postdeath administration to surrogate respondents (staff and family caregivers) of all decedents (QOD-LTC) and of cognitively intact decedents (QOD-LTC-C) who die in nursing homes (NHs) and residential care or assisted living (RC/AL) facilities. DESIGN: Using two levels of exploratory factor analysis, 15 candidate items for the QOD-LTC and 36 candidate items for the QOD-LTC-C were tested using multiple criteria to determine factor structure and interpretability of the quality of dying in long-term care (LTC). SETTING: One hundred seventeen RC/AL facilities and 31 NHs in FL, MD, NC, and NJ. PARTICIPANTS: Family (n=439) and staff (n=332) caregivers of 633 decedents from a stratified random sample from RC/AL facilities and NHs in four states. MEASUREMENTS: Trained interviewers asked respondents to rate statements describing potentially important aspects of the quality of dying using a 5-point Likert scale. The scale items were analyzed using exploratory factor analysis with communalities set to unity using a Promax rotation. RESULTS: The 11-item QOD-LTC (alpha=0.66), appropriate for surrogate respondents for all decedents, consists of three domains (personhood, closure, preparatory tasks). The 23-item instrument for surrogate respondents of cognitively intact decedents, the QOD-LTC-C (alpha=0.85), consists of five domains (sense of purpose, closure, control, social connection, preparatory tasks). CONCLUSION: The QOD-LTC and QOD-LTC-C are psychometrically acceptable measures of the quality of the dying experience, developed for and tested in LTC settings. Use of these measures can increase understanding of the dying experience in LTC.

Is hospice associated with improved end-of-life care in nursing homes and assisted living facilities?

OBJECTIVES: To examine whether hospice enrollment for nursing home (NH) and residential care/assisted living (RC/AL) residents near the end of life is associated with symptoms and symptom management, personal care, spiritual support, and family satisfaction. DESIGN: Structured, retrospective telephone interviews with family and staff who attended to NH and RC/AL residents in the last month of life. SETTING: A stratified sample of 26 NH and 55 RC/AL facilities in four states. PARTICIPANTS: Family members (n=97) and long-term care (LTC) staff (n=104) identified as most involved in care of 124 residents who died over a 15-month period. MEASUREMENTS: A variety of reported measures of care and symptoms before death, including the Discomfort Scale for Dementia of the Alzheimer's Type. RESULTS: Of 124 decedents, 27 (22%) received hospice services. Dementia was less common in hospice enrollees than in decedents who did not receive hospice care. Hospice enrollees more often had moderate/severe pain and dyspnea and received pain treatment and were more likely to receive assistance with mouth care and eating and drinking. There were no differences related to unmet need, and observed differences were largely eliminated when comparisons were limited to residents whose deaths were expected. CONCLUSION: Rates of hospice use observed in this study (22%) were considerably higher than previously reported, although persons with dementia may continue to be underreferred. Hospice use is targeted to dying residents with higher levels of reported pain and dyspnea. Because difference in care largely disappears in cases when death was expected, LTC staff seem to be well positioned to provide end-of-life care for their residents and are advised to remain sensitive to instances in which death may be expected.

A good death for residents of long-term care: family members speak.

Little research has been done on the topic of end-of-life care in long-term care settings to identify important themes regarding end-of-life care structures, processes, and outcomes. This study utilized data gathered in a stratified, random sample of 437 family members of residents who died in 31 nursing homes (NHs) and 199 residential care/ assisted living facilities. Structural components of care including staffing adequacy, training, and consistency as well as facility environment and size were important factors for family members interviewed. "Being there" and manner of care delivery (e.g., staff attitudes/empathy) were major elements in the process of care. These factors were mentioned more than direct care, Hospice, or resident preferences. Family members identified themes of [dying at] home and being comfortable and clean as important outcomes of care. These identified structural components, processes, and outcomes have implications for the role of social workers in these settings despite that social work support is notably absent in these findings.