Jean Munn

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.

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.

Measuring the Quality of Dying and Quality of Care When Dying in Long-Term Care Settings: A Qualitative Content Analysis of Available Instruments

CONTEXT Long-term care (LTC) settings have become a significant site for end-of-life care; consequently, instruments that assess the quality of dying and care may be useful in these settings. OBJECTIVES To evaluate the content of available measurement instruments to assess the quality of dying and care when dying. METHODS Qualitative content analysis to categorize items as structure of care, process of care, satisfaction with health care (the first three representing quality of care and its evaluation), quality of dying, or patient factors. RESULTS Instruments that measure mostly quality of care and its evaluation are the Family Perception of Physician-Family Caregiver Communication, End-of-Life in Dementia (EOLD) Satisfaction With Care, Family Perception of Care Scale, Toolkit of Instruments to Measure End-of-Life Care after-death bereaved family member interview (nursing home version), and the Family Assessment of Treatment at the End-of-Life Short version. Instruments measuring quality of dying are the EOLD-Comfort Assessment in Dying, EOLD-Symptom Management, Mini-Suffering State Examination, and Palliative Care Outcome Scale. The Quality of Dying in Long-Term Care measures care and dying. The Minimum Data Set-Palliative Care measures mostly dying and patient factors. The instruments differ in dementia specificity, time of administration, and respondent. CONCLUSION Instruments that assess quality when dying differ in several ways and most do not measure a single construct, which is relevant to guiding and evaluating care. Comparing psychometric properties and usefulness of instruments that measure similar constructs is the next step in determining which are best suited for use in LTC.

A Good Death for Residents of Long-Term Care: Family Members Speak

Abstract 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 consistence 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.

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.

Advancing the Evidence Base for Social Work in Long-Term Care: The Disconnect between Practice and Research

ABSTRACT This article reviews the research literature relative to social work practice in geriatric long-term care (LTC) settings with the aim of determining the state of the evidence base for practice. Overall, this body of research supports the efficacy of social work services within the context of community-based case management and interdisciplinary models of geriatric intervention; however, there is less evidence of a discipline-specific contribution, particularly in institutional health care settings (e.g., nursing homes and hospitals) where a great number of gerontological social workers are employed. Implications of this review include the need to prioritize research within gerontological social work in order to enhance best practice knowledge and skills in settings where it is most needed.

By Invitation Only: Social Work Involvement at the End of Life in Long-Term Care

ABSTRACT This qualitative study used three focus groups of long-term care social workers to determine how they viewed their roles with dying residents. Using grounded theory methodology, social workers were found to have difficulty articulating their roles; social work involvement occurred most often at the request of other staff, specifically nursing; hospice involvement contributed positively to end-of-life care but makes the social work role less clear; and elements of time and space influence the end-of-life experience for long-term care social workers, residents, and family members. Findings suggested that the social work profession must step forward in articulating the social work role and that research to validate the value of social work involvement is needed.

Telling the Story Perceptions of Hospice in Long-Term Care

We used qualitative methods (13 homogenous focus groups of residents, bereaved family members, licensed staff, paraprofessional staff, and social workers) to examine the components of a good death in a long-term care (LTC). Hospice involvement as beneficial to end-of-life care emerged as a naturally occurring theme and hospice was deemed as expert in all groups. Participants indicated some barriers to hospice involvement as well as difficulties in collaboration between facility staff and hospice personnel. When viewed within the context of existing literature, these data suggest that a new model of hospice care in which hospice staff serve as expert consultants may be appropriate. This model that recognizes and optimizes the experience of both the facility staff and hospice personnel will benefit care recipients.

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 ones 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.

Revising the Lubben Social Network Scale for use in residential long-term care settings

ABSTRACT Purposes: We revised the Lubben Social Network Scale (LSNS) to develop a measure of social support specific to residential long-term care (LTC) settings, the LSNS-LTC with five domains (i.e., family, friends, residents, volunteers, and staff). Methods: The authors modified the LSNS-18 to capture sources of social support specific to LTC, specifically relationships with residents, volunteers, and staff. We piloted the resultant 28-item measure with 64 LTC residents. Fifty-four respondents provided adequate information for analyses that included descriptive statistics and reliability coefficients. Results: Twenty of the items performed well (had correlations >0.3, overall α = 0.85) and were retained. Three items required modification. The five items related to volunteers were eliminated due to extensive (>15%) missing data resulting in a proposed 23-item measure. Discussion: We identified, and to some degree quantified, supportive relationships within the LTC environment, while developing a self-report tool to measure social support in these settings.