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Delivering palliative care to patients and caregivers in inner-city communities: Challenges and opportunities

Published online by Cambridge University Press:  24 October 2013

Karen Kayser ,
Rosanna F. DeMarco ,
Charu Stokes ,
Susan DeSanto-Madeya  and
Philip C. Higgins
Karen Kayser*
Affiliation:
Graduate School of Social Work, Boston College, Boston, Massachusetts
Rosanna F. DeMarco
Affiliation:
Connell School of Nursing, Boston College, Boston, Massachusetts
Charu Stokes
Affiliation:
Graduate School of Social Work, Boston College, Boston, Massachusetts
Susan DeSanto-Madeya
Affiliation:
Connell School of Nursing, Boston College, Boston, Massachusetts
Philip C. Higgins
Affiliation:
Graduate School of Social Work, Boston College, Boston, Massachusetts
*
Address correspondence and reprint requests to: Karen Kayser, Kent School of Social Work, University of Louisville, Oppenheimer Hall, Louisville, Kentucky 40292. E-mail: [email protected]
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Abstract

Objective:

Social and economic barriers can hinder access to quality palliative and end-of-life care for patients living in inner-city communities. Using a community-based participatory research (CBPR) approach, we investigated the stresses associated with living with a chronic disease and barriers to access and utilization of palliative care resources experienced by low-income patients and caregivers in five inner-city communities.

Methods:

Four focus groups (N = 33) were conducted with community stakeholders, including healthcare professionals (social workers and nurses), persons living with chronic illnesses (e.g., HIV/AIDS, cardiovascular disease, and cancer), and caregivers. Focus group responses were analyzed using thematic analyses.

Results:

Patients' and caregivers' stresses centered around five themes: lack of family support, communication barriers with healthcare professionals, minority stress, caregiver burden, and lack of spiritual support. The community stakeholders identified resources and services to improve access to care and the quality of life of underserved, low-income populations living with chronic illnesses.

Significance of Results:

A CBPR approach enabled us to develop an interdisciplinary and culturally sensitive intervention to begin addressing the palliative and end-of-life needs of the patients and caregivers of the inner-city community.

Keywords

Palliative careCommunity-based participatory research (CBPR)InterdisciplinaryPsychosocial intervention
Type
Original Articles
Information
Palliative & Supportive Care , Volume 12 , Issue 5 , October 2014 , pp. 369 - 378
Copyright
Copyright © Cambridge University Press 2013 

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