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J Pain Symptom Manage. 2019 Dec;58(6):1040-1047. doi: 10.1016/j.jpainsymman.2019.08.019. Epub 2019 Aug 22.

Support Network Factors Associated With Naming a Health Care Decision-Maker and Talking About Advance Care Planning Among People Living With HIV.

Author information

1
Internal Medicine, Palliative Medicine Program, Johns Hopkins Hospital, Baltimore, Maryland, USA. Electronic address: dcruzoli@jhmi.edu.
2
Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
3
Friends Research Institute, Baltimore, Maryland, USA.
4
Johns Hopkins University School of Nursing, Baltimore, Maryland, USA.
5
Palliative Medicine Program, JHMI, Johns Hopkins Hospital, Baltimore, Maryland, USA.
6
Berman Institute of Bioethics-Research Program, Johns Hopkins School of Nursing, Maryland, USA.
7
Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.

Abstract

CONTEXT:

Little attention has been given to social environmental factors associated with advance care planning (ACP) among African Americans or people living with advanced HIV (PLHIV).

OBJECTIVES:

The present study aimed to identify support network factors that affect the likelihood of naming a decision-maker and of talking to family/friends and doctors about ACP among vulnerable PLHIV.

METHODS:

PLHIV were recruited from a large urban HIV clinic. A social support network inventory was used to calculate number of persons available for various types of support. Characteristics of network members were also collected. Multivariable logistic regression models were fit to examine associations between social network factors and ACP discussion, adjusting for age, sex, education, and total number of network members.

RESULTS:

The sample (N = 370) was mostly African American (95%), male (56%), and 48% had less than a high school education. Almost half the sample (48%) had talked to their family/friends or doctor about ACP, and 34% had named a medical decision-maker. Adjusted analysis revealed that talking about ACP with family/friends was associated with female sex and a larger closer support network who provided health information and physical assistance. Talking to doctors about ACP was associated with larger support networks who provided physical assistance but lower numbers from whom emotional support was received. Naming a decision-maker was associated with greater numbers of network members who provided emotional support, health information, and medication adherence reminders.

CONCLUSION:

The findings revealed aspects of family/support network structures and caregiving function associated with ACP in a population with often vital yet vulnerable networks.

KEYWORDS:

African American or black; HIV/AIDS; Support network; advance care planning; family or informal caregiver; naming decision-maker; palliative care

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