“Can You Give Me Respect?” Experiences of the Urban Poor on a Dedicated AIDS Nursing Home Unit

Abstract

In this interpretive phenomenology study, 10 impoverished adults with advanced HIV disease, ages 35 to 58 years, described their understanding of dignity and their everyday experiences in an urban AIDS-dedicated nursing home unit. Three group interviews, along with field notes, were audiotaped, transcribed, and analyzed. For most, dignity meant respect received by others and respect for oneself; some did not understand the word dignity. Receiving respectful care enhanced a sense of dignity for some, and for others, difficulties with caregivers led to feeling unrecognized or disrespected. Everyday experiences of living on the unit included narratives about how they got there, taking antiretrovirals, escaping, the unit as a community of caring, witnessing deaths, relationships with nurses, the unit as a place of safety, and knowing when to leave. This study contributes to knowledge of marginalized minority groups with advanced HIV disease whose experiences often remain silenced.

“I'm Sitting Here By Myself …”: Experiences of Patients with Serious Illness at an Urban Public Hospital

“…1,2 Although there is little research about the end of life of patients with underrepresented cultural and disadvantaged educational and socioeconomic backgrounds, limited data suggest that these patients have worse experiences than the general population. [3][4][5][6][7][8][9][10][11][12][13][14][15] For example, studies indicate that ethnic and racial disparities exist in access to opioid analgesics 6,9,16 and that hospice is underutilized by minorities. 9,10,17,18 The homeless underuse hospice for financial and logistical reasons and have high rates of mental illness and substance abuse that complicate the dying process.…”

Concept analysis of dignity‐centered care for people with chronic progressive disease

“…The distressing symptoms and the inability to continue with usual routines results in a loss of autonomy, freedom, independence, and role (Albers et al, ; Tong et al, ), loss of spontaneity and personal freedom (Monaro et al, ), and a sense of vulnerability (Tong et al, ). Also described were feelings of shame and isolation (Hughes, ) and loss of social connectedness (Monaro et al, ).…”

“…Promotion of emotional resilience (Tong et al, ), early recognition of existential concerns and interventions (Vehling & Mehnert, ) and respecting and restoring the sense of personhood (Aoun et al, ) bolstered self‐esteem. To maintain one's personality (Nawa et al, ) by being valued (Delmar et al, ) and having respect for oneself (Hughes, ) affirmed one's self‐concept. Self‐esteem related to self‐management required independence, and self‐control (Delmar et al, ).…”

“…Preservation of personality (Nawa et al, ), reinforcing a positive identity and enhancing self‐esteem (Russell et al, ) and shaping self‐perception (van Gennip et al, ) supported the stability of self‐concept. Sense of selfhood (Reynolds et al, 1974) increased self‐respect (Coventry, ; Dager et al, ; Hughes, ) and the maintenance of self‐esteem (Werner & Malterud, ) improved self‐esteem. Stabilizing of self‐concept and deepening self‐esteem stabilized self‐esteem and securely established self; these helped patients improve self‐esteem.…”

“…Another related term is that of “respect” (Delmar et al, ; Hughes, ). Being respected as an individual is closely connected to being enabled to manage on one's own and to be independent of others' help as much as possible.…”