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1.
Cancer ; 130(7): 1171-1182, 2024 04 01.
Artículo en Inglés | MEDLINE | ID: mdl-38009953

RESUMEN

BACKGROUND: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. METHODS: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. RESULTS: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007). CONCLUSIONS: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.


Asunto(s)
Aflicción , Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Tutoría , Neoplasias , Femenino , Humanos , Cuidadores/psicología , Familia/psicología , Cuidados Paliativos al Final de la Vida/psicología , Neoplasias/terapia
2.
Med Care ; 57(2): 159-166, 2019 02.
Artículo en Inglés | MEDLINE | ID: mdl-30570589

RESUMEN

BACKGROUND: Previous approaches to measuring and improving nursing-sensitive, patient-centered metrics of pain quality and outcomes in hospitalized patients have been limited. METHODS: In this translational research study, we disseminated and implemented pain quality indicators in 1611 medical and/or surgical, step-down, rehabilitation, critical access, and obstetrical (postpartum) units from 326 US hospitals participating in the National Database of Nursing Quality Indicators. Eligible patients were English-speaking adults in pain. Trained nurses collected patients' perceptions via structured interview including 9 pain quality indicators, demographic, and clinical variables; these patient experience data were merged with unit and hospital level data. Analyses included geographic mapping; summary statistics and 3-level mixed effects modeling. RESULTS: Hospitals in 45 states and District of Columbia participated. Of 22,293 screened patients, 15,012 were eligible; 82% verbally consented and participated. Pain prevalence was 72%. Participants were 59.4% female; ages ranged from 19 to 90+ (median: 59 y); 27.3% were nonwhite and 6.5% were Hispanic. Pain intensity on average over the past 24 hours was 6.03 (SD=2.45) on a 0-10 scale. 28.5% of patients were in severe pain frequently or constantly. Race (nonwhite), younger age, being female and nonsurgical were associated (P<0.001) with greater pain. Care quality indicators ranking lowest related to discussion of analgesic side effects and use of nonpharmacologic approaches. CONCLUSIONS: Unrelieved pain remains a high-volume problem. Individual factors and unit type were significantly associated with pain outcomes. Hospitals can employ these quality indicators to direct continuous quality improvement targeting pain care quality.


Asunto(s)
Personal de Enfermería en Hospital , Manejo del Dolor/métodos , Dolor , Atención Dirigida al Paciente/métodos , Indicadores de Calidad de la Atención de Salud , Estudios Transversales , Femenino , Hospitales/normas , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Resultado en la Atención de Salud , Atención Dirigida al Paciente/organización & administración , Mejoramiento de la Calidad , Encuestas y Cuestionarios , Estados Unidos
3.
J Hosp Palliat Nurs ; 20(2): 153-159, 2018 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-29657556

RESUMEN

Despite hospital palliative care consultations during which goals of care are discussed in the context of poor prognoses, older adults are admitted to nursing homes for post-acute care where the focus is on rehabilitation. The purpose of this qualitative descriptive study was to describe factors that influence discontinuity between a palliative care consult and nursing home care and explore the potential consequences of this discontinuity. Twelve adults (mean age of 80 years) were enrolled from one community hospital and nursing home in the mid-Atlantic United States. Semi-structured interviews and medical record reviews were used to elicit information about clinical course, care processes, and patient/family preferences at hospital discharge and up to four times after nursing home admission. Data were analyzed using inductive content analysis techniques. Analysis revealed two themes: Inadequate Communication characterized by the lack of information about the palliative care consult after hospital discharge and Prognosis Incongruence evidenced by data demonstrating a discrepancy between hospital prognosis and nursing home care. Ongoing communication between settings to re-address goals of care, prognosis, and symptoms-the central tenets of palliative care-is lacking. Efforts to improve access to comprehensive palliative care delivery after hospitalization and during nursing home transitions are greatly needed.

4.
Palliat Support Care ; 16(2): 209-219, 2018 04.
Artículo en Inglés | MEDLINE | ID: mdl-28464961

RESUMEN

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support. METHOD: Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. RESULTS: Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05). SIGNIFICANCE OF RESULTS: Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.


Asunto(s)
Cuidadores/psicología , Servicios de Atención de Salud a Domicilio , Cuidados Paliativos al Final de la Vida/métodos , Adulto , Femenino , Grupos Focales , Servicios de Atención de Salud a Domicilio/organización & administración , Servicios de Atención de Salud a Domicilio/tendencias , Cuidados Paliativos al Final de la Vida/tendencias , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Enfermería de Cuidados Paliativos al Final de la Vida/normas , Humanos , Masculino , Enfermeras y Enfermeros/psicología , Investigación Cualitativa , Recursos Humanos
5.
Geriatr Nurs ; 38(6): 531-536, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28457493

RESUMEN

Palliative care consultation (PCC) during hospitalization is increasingly common for older adults with life-limiting illness discharged to nursing homes. The objective of this qualitative descriptive study was to describe the care trajectories and experiences of older adults admitted to a nursing home following a PCC during hospitalization. Twelve English-speaking adults, mean age 80 years, who received a hospital PCC and discharge to a nursing home without hospice. Data were collected from medical records at five time points from hospital discharge to 100 days after nursing home admission and care trajectories were mapped. Interviews (n = 15) with participants and surrogates were combined with each participant's medical record data. Content analysis was employed on the combined dataset. All PCC referrals were for goals of care conversations during which the PCC team discussed poor prognosis. All participants were admitted to a nursing home under the Medicare skilled nursing facility benefit. Seven were rehospitalized; six of the 12 died within 6 weeks of initial nursing home admission. The two care trajectories were Focus on Rehabilitative Care and Comfort Care Continuity. There was a heavy emphasis on recovering functional status through rehabilitation and skilled nursing care, despite considerable symptom burden and poor prognosis. Regardless of PCC with recommendations for palliative interventions, frail older adults with limited life expectancy and their family caregivers often perceive that rehabilitation will improve physical function. This perception may contribute to inappropriate, ineffective care. More emphasis is needed to coordinate care between PCC recommendations and post-acute care.


Asunto(s)
Continuidad de la Atención al Paciente , Casas de Salud/organización & administración , Cuidados Paliativos/estadística & datos numéricos , Derivación y Consulta , Anciano de 80 o más Años , Femenino , Hospitalización , Humanos , Masculino , Casas de Salud/estadística & datos numéricos , Alta del Paciente
6.
J Correct Health Care ; 23(1): 43-55, 2017 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-28100141

RESUMEN

The increasing numbers of aging and chronically ill prisoners incarcerated in Western nations is well-documented, as is the growing need for prison-based palliative and end-of-life care. Less often discussed is specifically how end-of-life care can and should be provided, by whom, and with what resources. One strategy incorporates prisoner volunteers into end-of-life services within a peer-care program. This article reports on one such program based on focused ethnographic study including in-depth interviews with inmate hospice volunteers, nursing staff, and corrections officers working in the hospice program. We describe how inmate volunteers learn hospice care through formal education and training, supervised practice, guidance from more experienced inmates, and support from correctional staff. We discuss how emergent values of mentorship and stewardship are seen by volunteers and staff as integral to prison hospice sustainability and discuss implications of this volunteer-centric model for response-ability for the end-of-life care of prisoners.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Prisioneros/educación , Prisiones/organización & administración , Cuidado Terminal , Voluntarios/educación , Curriculum , Empatía , Femenino , Humanos , Entrevistas como Asunto , Louisiana , Masculino , Mentores , Estudios de Casos Organizacionales , Recursos Humanos
7.
Oncol Nurs Forum ; 43(1): 67-76, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-26679446

RESUMEN

PURPOSE/OBJECTIVES: To (a) compare pain knowledge and attitudes between nurses with oncology certified nurse (OCN®) status, non-OCN®-certified nurses, and nurses ineligible for certification and (b) examine the relationships among OCN® status, nurses' knowledge and attitudes about pain, patient-reported quality of nursing pain care, and pain outcomes. 
. DESIGN: Prospective, correlational survey design. Patients were nested within nurses. 
. SETTING: Six inpatient oncology units in three hospitals. SAMPLE: 91 nurses in three states (28 OCN®-certified nurses, 37 noncertified nurses, and 26 not eligible for certification). Certification status was validated for 105 nurses who were matched with a sample of 320 patients. 
. METHODS: Nurses completed a survey, and matched adult patients who were experiencing pain rated their pain care quality and pain experience during the past shift. 
. MAIN RESEARCH VARIABLES: Demographic characteristics, certification status, and responses to the Nurse Knowledge and Attitudes Survey Regarding Pain (NKASRP), Pain Care Quality Survey-Nursing, and modified Brief Pain Inventory (Short Form). 
. FINDINGS: OCN®-certified nurses scored significantly higher on the NKASRP (82% correct) compared to non-OCN® eligible nurses (76%) and non-OCN® ineligible nurses (74%) (p < 0.001). Only 43% overall achieved a benchmark of 80% correct. No statistically significant relationships existed between (a) certification status and pain care quality or pain outcomes or (b) NKASRP and care quality or outcomes (p > 0.05).
. CONCLUSIONS: OCN®-certified nurses' knowledge and attitudes related to pain management were superior to noncertified nurses. Neither knowledge and attitudes nor OCN® status were associated with pain care quality or pain outcomes. 
. IMPLICATIONS FOR NURSING: Knowledge is necessary but insufficient to improve patient outcomes; providing optimal pain care requires action. Sustained efforts to improve cancer pain management are indicated.


Asunto(s)
Actitud del Personal de Salud , Certificación , Conocimientos, Actitudes y Práctica en Salud , Enfermería Oncológica , Manejo del Dolor/enfermería , Manejo del Dolor/normas , Calidad de la Atención de Salud , Adulto , Estudios Transversales , Autoevaluación Diagnóstica , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Adulto Joven
8.
Gerontologist ; 56(4): 733-42, 2016 08.
Artículo en Inglés | MEDLINE | ID: mdl-26035890

RESUMEN

PURPOSE OF THE STUDY: Using an interpretive phenomenological approach, this study explored the meaning African American (AA) caregivers ascribed to the dementia-related changes in their care-recipients. DESIGN AND METHODS: Data were gathered in this qualitative study with 22 in-depth interviews. Eleven AA caregivers for persons with dementia, living in the Pacific Northwestern United States, were interviewed twice. Four caregivers participated in an optional observation session. RESULTS: Analysis based on the hermeneutic circle revealed that, for these caregivers, the dementia-related changes meant that they had to hang on to the care-recipients for as long as possible. Caregivers recognized that the valued care-recipients were changed, but still here and worthy of respect and compassion. Ancestral family values, shaped by historical oppression, appeared to influence these meanings. IMPLICATIONS: The results from this study suggest that AA caregivers tend to focus on the aspects of the care-recipients' personalities that remain, rather than grieve the dementia-related losses. These findings have the potential to deepen gerontologists' understanding of the AA caregiver experience. This, in turn, can facilitate effective caregiver decision making and coping.


Asunto(s)
Actitud Frente a la Salud/etnología , Negro o Afroamericano , Cuidadores , Demencia/enfermería , Adaptación Psicológica , Adulto , Anciano , Anciano de 80 o más Años , Toma de Decisiones , Femenino , Hermenéutica , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa
9.
Am J Hosp Palliat Care ; 33(4): 390-402, 2016 May.
Artículo en Inglés | MEDLINE | ID: mdl-25735806

RESUMEN

As the number of prison inmates facing end-stage chronic illness grows, more prisons across the U.S. must address the need for end-of-life care. Many will likely need to develop a plan with potentially limited resources and external support. This case study presents one long-running model of care, the Louisiana State Penitentiary Prison Hospice Program. Based on field observations and in-depth interviews with hospice staff, inmate volunteers and corrections officers, we identify five essential elements that have contributed to the long-term operation of this program: patient-centered care, an inmate volunteer model, safety and security, shared values, and teamwork. We describe key characteristics of each of these elements, discuss how they align with earlier recommendations and research, and show how their integration supports a sustained model of prison end-of-life care.


Asunto(s)
Cuidados Paliativos al Final de la Vida/organización & administración , Prisiones/organización & administración , Humanos , Relaciones Interpersonales , Grupo de Atención al Paciente , Seguridad del Paciente , Atención Dirigida al Paciente/organización & administración , Grupo Paritario , Investigación Cualitativa , Estados Unidos , Voluntarios
10.
J Correct Health Care ; 21(3): 298-308, 2015 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-26084951

RESUMEN

Increasing numbers of prisoners in the United States are dying from age-related and chronic illnesses while incarcerated. This study is among the first to document characteristics of a population of prison hospice patients. Retrospective review of medical records for all patients admitted to the Louisiana State Penitentiary prison hospice program between January 1, 2004, and May 31, 2012 (N = 79) examined demographics, medical history, hospice diagnosis, length of stay, and end-of-life symptom prevalence on admission and during final 72 hours before death. Resulting data were contrasted with community-based end-of-life care study data, demonstrating a unique clinical profile of this group. As prisons consider adopting programs to meet the growing need for inmate end-of-life care, more research concerning the particular characteristics and unique needs of prison hospice patients will inform these efforts.


Asunto(s)
Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Prisiones/estadística & datos numéricos , Adulto , Anciano , Causas de Muerte , Femenino , Humanos , Tiempo de Internación , Louisiana , Masculino , Persona de Mediana Edad , Prevalencia , Estudios Retrospectivos , Factores Socioeconómicos , Cuidado Terminal , Estados Unidos
11.
Palliat Support Care ; 13(3): 465-72, 2015 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-24528800

RESUMEN

OBJECTIVE: The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs. METHOD: As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match. RESULTS: Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed. SIGNIFICANCE OF RESULTS: Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.


Asunto(s)
Cuidadores/psicología , Disentimientos y Disputas , Cuidados Paliativos al Final de la Vida/psicología , Enfermeros de Salud Comunitaria/psicología , Apoyo Social , Emociones , Grupos Focales , Humanos
12.
Artículo en Inglés | MEDLINE | ID: mdl-24628143

RESUMEN

Correctional institutions are obligated to provide end-of-life care to a population with complex medical needs. Prison hospices are increasingly being formed to address this demand. Few empirical studies have examined the impact of caring for dying inmates on the hospice inmate volunteers, who, in several prison health care systems, provide direct care. In this study, experiences of the inmate hospice volunteers with death were investigated to illuminate their grief processes. Understanding the bereavement needs of hospice volunteers and how prison hospice volunteers navigate grief and remain committed to providing excellent hospice care can inform the grief processes and practices of hospice care professionals.


Asunto(s)
Aflicción , Cuidadores/psicología , Cuidados Paliativos al Final de la Vida/psicología , Prisioneros , Voluntarios/psicología , Adulto , Anciano , Actitud Frente a la Muerte , Pesar , Cuidados Paliativos al Final de la Vida/organización & administración , Hospitales para Enfermos Terminales/organización & administración , Humanos , Masculino , Persona de Mediana Edad , Servicio Social/organización & administración
13.
Am J Hosp Palliat Care ; 31(7): 735-48, 2014 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-24071627

RESUMEN

Some US prisons are meeting the growing need for end-of-life care through inmate volunteer programs, yet knowledge of the motivations of inmate caregivers is underdeveloped. This study explored the motivations of inmate hospice volunteers from across Louisiana State (n = 75) through an open-ended survey, a grounded theory approach to analysis, and comparison of responses by experience level and gender. Participants expressed complex motivations; Inter-related themes on personal growth, social responsibility and ethical service to vulnerable peers suggested that inmate caregivers experience an underlying process of personal and social transformation, from hospice as a source of positive self-identity to peer-caregiving as a foundation for community. Better understanding of inmate caregiver motivations and processes will help prisons devise effective and sustainable end of life peer-care programs.


Asunto(s)
Actitud Frente a la Muerte , Cuidadores/psicología , Cuidados Paliativos al Final de la Vida/psicología , Motivación , Prisioneros/psicología , Cuidado Terminal/psicología , Voluntarios/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Louisiana , Masculino , Persona de Mediana Edad , Grupo Paritario , Estados Unidos
14.
J Hosp Palliat Nurs ; 16(5): 282-290, 2014 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-31007623

RESUMEN

CONTEXT: Home hospice providers are concerned with family caregiver perceptions about the quality of care and support offered. More research is needed to understand experiences of family caregivers and what "support" means to these family members. OBJECTIVE: We compared perceptions of caregiver needs from the family caregiver and the nurse case manager. METHODS: Former family caregivers and hospice nurses participated in focus groups. Discussions were audio-recorded, transcribed, inductively coded and qualitatively analyzed to describe patterns and themes. RESULTS: Both groups described information, honesty, trust, respect, and control as important to caregivers feeling supported, and to the development of positive relationships between hospice and family. Caregivers and nurses, however, talked about the concepts of caregiver needs, relationship building, and effective support differently, which suggested two themes that captured these contrasts while highlighting the importance of relationship-building to both groups: "Breaking it down to build it up" and "Doing to, doing for, doing with". CONCLUSION: Caregivers and nurses cited similar elements necessary for successful relationships between caregivers and the hospice team, but how they described them differed and these differences shape perceptions of support. Greater understanding of similarities and differences could inform and improve training and education programs for hospice teams.

15.
Health Serv Res ; 48(3): 1018-38, 2013 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-23205503

RESUMEN

OBJECTIVE: To examine the reliability and validity and to decrease the battery of items in the Pain Care Quality (PainCQ(©) ) Surveys. DATA SOURCES/STUDY SETTING: Patient-reported data were collected prospectively from 337 hospitalized adult patients with pain on medical/surgical oncology units in four hospitals in three states. STUDY DESIGN: This methodological study used a cross-sectional survey design. Each consenting patient completed two PainCQ(©) Surveys, the Brief Pain Inventory-Short Form, and demographic questions. Clinical data were extracted from the medical record. DATA COLLECTION/EXTRACTION METHODS: All data were double entered into a Microsoft Access database, cleaned, and then extracted into SPSS, AMOS, and Mplus for analysis. PRINCIPAL FINDINGS: Confirmatory factor analysis using Structural Equation Modeling supported the initial factor structure. Modification indices guided decisions that resulted in a superior, parsimonious model for the PainCQ-Interdisciplinary Care Survey (six items, two subscales) and the PainCQ-Nursing Care Survey (14 items, three subscales). Cronbach's alpha coefficients all exceeded .80. CONCLUSIONS: Cumulative evidence supports the reliability and validity of the companion PainCQ(©) Surveys in hospitalized patients with pain in the oncology setting. The tools may be relevant in both clinical research and quality improvement. Future research is recommended in other populations, settings, and with more diverse groups.


Asunto(s)
Pacientes Internos , Servicio de Oncología en Hospital/organización & administración , Manejo del Dolor/métodos , Atención Dirigida al Paciente/organización & administración , Encuestas y Cuestionarios/normas , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Servicio de Oncología en Hospital/normas , Manejo del Dolor/psicología , Manejo del Dolor/normas , Dimensión del Dolor/métodos , Grupo de Atención al Paciente/organización & administración , Satisfacción del Paciente , Atención Dirigida al Paciente/normas , Estudios Prospectivos , Calidad de la Atención de Salud/organización & administración , Reproducibilidad de los Resultados , Factores Socioeconómicos
16.
Am J Hosp Palliat Care ; 28(7): 483-6, 2011 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-21398262

RESUMEN

Conversations between hospice volunteers and patients provide patients with emotional and social support, and they are meaningful and satisfying to volunteers. Through questionnaires and interviews, hospice volunteers were asked to describe a meaningful conversation with a patient. Many volunteers stated that all conversations were meaningful. Most, however, were able to describe one specific conversation, though they noted that meaningful conversations cannot be forced and often arise after many interactions. Prominent themes were the meaning of life, experiences and life stories, talk about death and spirituality, discussions of families and relationships, and shared interests. Volunteers expressed appreciation for the opportunity to learn about patients' lives and to gain life lessons. They also indicated the need to listen and respond without judgment.


Asunto(s)
Comunicación , Cuidados Paliativos al Final de la Vida , Relaciones Profesional-Paciente , Apoyo Social , Espiritualidad , Humanos , Pacientes , Satisfacción Personal , Voluntarios
17.
J Pain ; 11(12): 1311-9, 2010 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-20537957

RESUMEN

UNLABELLED: This study examined the psychometric properties of the Pain Care Quality (PainCQ) survey, a new instrument to measure the quality of nursing and interdisciplinary care related to pain management. Hospitalized medical/surgical oncology patients with pain from 3 states completed the 44-item version of the PainCQ survey following completion of a nursing shift. Interdisciplinary items were evaluated over the entire hospital stay; nursing care was evaluated during the previous shift. The sample included 109 patients ranging in age from 20 to 84 (mean = 53.09). The sample was 58.7% female, 88% non-Hispanic white. Principal Axis Factoring with an oblimin rotation was used as factors were correlated. Two scales resulted. The PainCQ-Interdisciplinary scale included 11 items representing 2 constructs and explaining 47.1% of shared item variance: partnership with the health care team (k = 6 items; α = .85) and comprehensive interdisciplinary pain care (k = 5 items; α = .76). The PainCQ-Nursing scale measured three constructs and explained 60.8 % of shared item variance: being treated right (k = 15 items; α = .95), comprehensive nursing pain care (k = 3 items; α = .77), and efficacy of pain management (k =4 items; α = .87). Results supported the internal consistency reliability and structural validity of the PainCQ survey with 33 items. PERSPECTIVE: This article presents the psychometric properties of a new tool to measure interdisciplinary and nursing care quality related to pain management from the patient's perspective. This tool can be used for research and as a clinical performance measure to monitor and improve quality of care and patient outcomes.


Asunto(s)
Encuestas Epidemiológicas/métodos , Dimensión del Dolor/métodos , Psicometría/métodos , Calidad de la Atención de Salud/normas , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Encuestas Epidemiológicas/normas , Hospitales/normas , Humanos , Masculino , Satisfacción del Paciente/estadística & datos numéricos , Adulto Joven
18.
BMC Palliat Care ; 9: 5, 2010 Apr 26.
Artículo en Inglés | MEDLINE | ID: mdl-20420698

RESUMEN

BACKGROUND: Transitions often occur suddenly and can be traumatic to both patients with advanced disease and their families. The purpose of this study was to explore the transition experience of older rural persons with advanced cancer and their families from the perspective of palliative home care patients, bereaved family caregivers, and health care professionals. The specific aims were to: (1) describe the experience of significant transitions experienced by older rural persons who were receiving palliative home care and their families and (2) develop a substantive theory of transitions in this population. METHODS: Using a grounded theory approach, 27 open-ended individual audio-taped interviews were conducted with six older rural persons with advanced cancer and 10 bereaved family caregivers. Four focus group interviews were conducted with 12 palliative care health care professionals. All interviews were transcribed verbatim, coded, and analyzed using Charmaz's constructivist grounded theory approach. RESULTS: Within a rural context of isolation, lack of information and limited accessibility to services, and values of individuality and community connectedness, older rural palliative patients and their families experienced multiple complex transitions in environment, roles/relationships, activities of daily living, and physical and mental health. Transitions disrupted the lives of palliative patients and their caregivers, resulting in distress and uncertainty. Rural palliative patients and their families adapted to transitions through the processes of "Navigating Unknown Waters". This tentative theory includes processes of coming to terms with their situation, connecting, and redefining normal. Timely communication, provision of information and support networks facilitated the processes. CONCLUSION: The emerging theory provides a foundation for future research. Significant transitions identified in this study may serve as a focus for improving delivery of palliative and end of life care in rural areas. Improved understanding of the transitions experienced by advanced cancer palliative care patients and their families, as well as the psychological processes involved in adapting to the transitions, will help health care providers address the unique needs of this vulnerable population.

19.
Nurs Res ; 59(2): 85-92, 2010.
Artículo en Inglés | MEDLINE | ID: mdl-20216010

RESUMEN

BACKGROUND: Research to document the effects of nursing on patient outcomes such as pain has been limited by the inability to measure the quality of nursing care effectively. OBJECTIVE: The purpose of this study was to establish content validity and to evaluate patient understanding of Pain Care Quality (PainCQ) survey items using cognitive interviewing. METHOD: In the development phase, 101 items representing four constructs were generated from the transcriptions of 33 qualitative interviews conducted with cancer patients in pain. In the judgment phase, items were reviewed systematically by two panels of pain experts. In the final phase, cognitive interviews were conducted with hospitalized cancer patients reporting pain. RESULTS: Content validity was established if eight of nine (p < .05) experts agreed the item was relevant or very relevant. On the basis of the expert panel review, items were deleted, reworded, and added, and 73 items remained. These items were evaluated by cognitive interviews with 39 hospitalized patients with multiple types of cancer in three states. The mean age was 58.87 years, and 60.5% were women. Most were non-Hispanic White (94.7%), and education varied. On a 0 to 10 scale, worst pain during the past shift averaged 5.24 (SD = 2.43). Participant responses to the PainCQ survey items were summarized for each item using a matrix tool and evaluated in team meetings. Through an iterative process, items were revised and reduced to produce the PainCQ survey (v3) with 44 items. DISCUSSION: Through this deliberative and iterative process, an instrument was produced that will contribute to the measurement of the quality of nursing and interdisciplinary care related to pain management. The items retained in the PainCQ were understood and judged by hospitalized patients with pain easily. Further psychometric testing of the PainCQ is indicated.


Asunto(s)
Neoplasias/enfermería , Enfermería Oncológica/métodos , Dimensión del Dolor/métodos , Dolor/enfermería , Encuestas y Cuestionarios/normas , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/complicaciones , Dolor/etiología , Dolor/prevención & control , Satisfacción del Paciente/estadística & datos numéricos , Desarrollo de Programa/métodos , Psicometría/métodos , Investigación Cualitativa , Garantía de la Calidad de Atención de Salud/métodos , Reproducibilidad de los Resultados , Índice de Severidad de la Enfermedad
20.
J Pain Symptom Manage ; 39(1): 100-15, 2010 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-19879107

RESUMEN

CONTEXT: The coexistence of high levels of satisfaction and high levels of pain has been perplexing. OBJECTIVES: The aims of this study were to 1) describe patient expectations related to the experience of cancer-related pain, 2) explore the cognitive processes and meaning that underlie patient judgments about satisfaction and dissatisfaction with pain management, and 3) explore the discrepancies between ratings of high satisfaction with pain management with high pain intensity. METHODS: The sample included 33 patients: 18 with advanced cancer and 15 experiencing pain after a surgery for a cancer diagnosis. All patients had experienced "worst pain" of at least moderate intensity and were interviewed using standard pain measures from the American Pain Society Patient Outcome Questionnaire and open-ended questions about the underlying meaning of their answers. We systematically analyzed the transcribed qualitative data using NVivo software. RESULTS: Fifty-five percent of patients were females and were aged 25-78 years. Most (75%) were satisfied or very satisfied with their overall pain management. Key findings indicate that for some, the worst pain rating was often brief, even momentary. Most patients expected pain relief. Four key themes were important to the quality of pain management: being treated right, having a safety net, being in a partnership with their health care team, and having pain treatment that was efficacious. Key aspects of the patient-provider relationship that mattered were how the nurses and doctors behaved toward them and how quickly they responded to reports of pain. For some, an important factor was whether they had control of the amount of pain they experienced. CONCLUSION: The findings inform measurement of patient satisfaction with the quality of pain management.


Asunto(s)
Neoplasias/complicaciones , Manejo del Dolor , Dolor/etiología , Satisfacción del Paciente , Adulto , Anciano , Actitud del Personal de Salud , Femenino , Humanos , Masculino , Persona de Mediana Edad , Dimensión del Dolor , Relaciones Profesional-Paciente , Investigación Cualitativa , Calidad de la Atención de Salud , Encuestas y Cuestionarios
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