Linda E. Francis

Qualitative study of affective identities in dementia patients for the design of cognitive assistive technologies

Our overall aim is to develop an emotionally intelligent cognitive assistant (ICA) to help older adults with Alzheimers disease (AD) to complete activities of daily living more independently. For improved adoption, such a system should take into account how individuals feel about who they are. This paper investigates different affective identities found in older care home residents with AD, leading to a computational characterization of these aspects and, thus, tailored prompts to each specific individuals identity in a way that potentially ensures smoother and more effective uptake and response. We report on a set of qualitative interviews with 12 older adult care home residents and caregivers. The interview covered life domains (family, origin, occupation, etc.), and feelings related to the ICA. All interviews were transcribed and analyzed to extract a set of affective identities, coded according to the social–psychological principles of affect control theory (ACT). Preliminary results show that a set of identities can be extracted for each participant (e.g. father, husband). Furthermore, our results provide support for the proposition that, while identities grounded in memories fade as a person loses their memory, habitual aspects of identity that reflect the overall “persona” may persist longer, even without situational context.

The longitudinal relationship between quality of life and survival in advanced stage cancer

Quality of Life (QoL) at baseline is frequently found to be a prognostic factor in cancer studies. However, little is known about the relationship of the trajectory of QoL and survival in patients with advanced cancer. This study evaluates the effects of both level and change of QoL on survival to explore the potential of utilizing longitudinal information of QoL for prognosis.

Word on the Street: Engaging Local Leaders in a Dialogue About Prostate Cancer Among African Americans

African American men face the highest rates of prostate cancer, yet with no consensus for screening and treatment, making informed health care decisions is difficult. This study aimed to identify approaches to empowering African American men as proactive participants in prostate cancer decision making using an established community–campus partnership employing elements of community-based participatory research methods. Community stakeholders with an interest in, and knowledge about, health care in two local African American communities were recruited and completed key informant interviews (N = 39). Grounded theory coding identified common themes related to prostate cancer knowledge, beliefs, attitudes, and responses to them. Common barriers such as gender roles, fear, and fatalism were identified as barriers to work-up and treatment, and both communities’ inadequate and inaccurate prostate cancer information described as the key problem. To build on community strengths, participants said the change must come from inside these communities, not be imposed from the outside. To accomplish this, they suggested reaching men through women, connecting men to doctors they can trust, making men’s cancer education part of broader health education initiatives designed as fun and inexpensive family entertainment events, and having churches bring community members in to speak on their experiences with cancer. This study demonstrated the success of community engagement to identify not only barriers but also local strengths and facilitators to prostate cancer care in two suburban/rural African American communities. Building collaboratively on community strengths may improve prostate cancer care specifically and health care in general.

Preferences for aggressive care in underserved populations with advanced-stage lung cancer: looking beyond race and resuscitation

PurposeThis paper examines the relationship between race, religiousness, spiritual well-being, antitumor treatment and preference for aggressive care among Black and White patients with advanced stage lung cancer receiving ambulatory cancer care in an urban setting.MethodsA cross-sectional exploration of patients enrolled in a Cleveland-based longitudinal study after initial diagnosis of advanced lung cancer were interviewed in Cleveland regarding religiousness, spiritual well-being, preferences for cardiopulmonary resuscitation (CPR), goals of aggressive care, and willingness to tolerate adverse health states. Receipt of antitumor treatment was identified from medical records.ResultsWe analyzed data from 67 Black and 129 White patients (N = 196). Regression analysis for CPR showed that race was not associated with preference for CPR (OR = 1.12, CI 0.44–2.85). The odds of choosing CPR were three times higher among patients receiving antitumor treatment (OR = 3.26, CI 1.12–9.44). Greater willingness to endure adverse health states was associated with higher spiritual well-being scores (b = 0.12, CI 0.01–0.25). Choosing goals to extend life versus relieve pain was higher among persons with higher spiritual well-being as well (RRR = 1.08, CI 1.01–1.16), yet the relationship with religiousness was negative (RRR = 0.46, CI 0.22–0.98).ConclusionsAfter controlling for multiple factors, race was associated only with CPR, but not with other measures of preference for aggressive care. In addition, receipt of active antitumor treatment was positively associated with preference for CPR and spiritual well-being was important to setting end-of-life care goals and perspectives. Future directions for tailoring end-of-life care decision-making initiatives should move beyond race and discussions of CPR alone and focus on a full spectrum of patient beliefs and preferences at the end of life.

Grief and Risk of Depression in Context The Emotional Outcomes of Bereaved Cancer Caregivers

We investigated the relationships of grief and depression to cancer caregiving in early bereavement. We began with three expectations: (a) each outcome would reflect different situational predictors, (b) grief would be more directly related to such predictors, and (c) components of grief would relate differently to the caregiving context and depressed mood. We conducted telephone interviews with family caregivers of incurable cancer patients from two hospitals. A total of 199 family caregivers were interviewed at the time of the patient’s diagnosis and reinterviewed 3 months after the patient’s death. Results showed grief severity was predicted by caregiving circumstances, but bereavement depressed mood was largely unrelated to caregiving. Grief was the main predictor of depressed mood and mediated almost all other effects. We conclude that while grief may trigger depression, the dissimilar connection to context means that the two emotional states should not be equated based purely on similarity of expression.

Cancer patient age and family caregiver bereavement outcomes.

PurposeThis study drew on life course theory to argue that the strains of cancer caregiving and bereavement are modified by the age of the patient. We expected that caregivers of middle-aged patients would be more distressed than caregivers of older patients.MethodsThis panel study conducted 199 interviews with family caregivers of advanced cancer patients; first following diagnosis and again shortly after the patient’s death.ResultsAmong caregivers of middle-aged patients (40–59), grief mediated the relationship between baseline caregiving and bereavement depressed mood, with grief increasing risk of depression in bereavement. Among caregivers of young-old patients (60–79), grief had a suppressor effect on the relationship between caregiving and bereavement depressed mood, showing greater distress during caregiving than at bereavement.ConclusionsCaregiving for middle-aged cancer patients may increase the risk for severe grief and depression, whereas caregivers of young-old cancer patients appeared to experience relief at bereavement. After bereavement, continued observation may be warranted for caregivers of a middle-aged patient; grief, added to the ongoing demands of their lives (which may include those left behind by a middle-aged patient), may put such caregivers at risk for greater psychological and emotional distress.