What Matters Most? A Mixed Methods Study of Critical Aspects of a Home-Based Palliative Program.
BACKGROUND
Home-based palliative care programs have shown value in improving quality of care and lowering costs for seriously ill patients. It is unknown what specific elements of these programs matter most to patients and caregivers.


OBJECTIVE
To identify what services are critical and why they matter to patients in a home-based palliative program.


METHODS
A mixed methods study of 18 participants in the At Home Support (AHS) program in Southeast Michigan.


METHODS
Two semistructured interviews were conducted for each participant, one while enrolled in AHS and another 3 months after the program ended to elicit the impact of AHS on their care. Qualitative theme data were merged with quantitative data on demographics, social and financial resources, symptoms, medical conditions, functional status, and utilization of health care while in AHS.


RESULTS
Four major themes of critical services reported by distinct populations of participants were described-medical support, endorsed by nearly every participant; emotional and spiritual support, endorsed by those with serious illness and symptom burden; practical assistance, endorsed by those with functional disability and isolation; and social services, endorsed by those in poverty. Medical monitoring was also described as critical but only by healthier participants.


CONCLUSIONS
This study presents a conceptual model of the critical services in home-based palliative care and why these services are important to high-risk patients. This model may be used to guide further research and evaluation work on the benefits of home-based palliative care.
1 Robert Wood Johnson Clinical Scholars Program, University of Michigan, Ann Arbor, MI, USA.|2 Department of Family Medicine, University of Michigan, Ann Arbor, MI, USA.
Claire K
CK
Ankuda
3 School of Social Work, University of Michigan, Ann Arbor, MI, USA.
Kaileen
K
Kersting
2 Department of Family Medicine, University of Michigan, Ann Arbor, MI, USA.
Timothy C
TC
Guetterman
1 Robert Wood Johnson Clinical Scholars Program, University of Michigan, Ann Arbor, MI, USA.
Jessica
J
Haefner
4 Hospice of Michigan, Detroit, MI, USA.
Evan
E
Fonger
4 Hospice of Michigan, Detroit, MI, USA.
Michael
M
Paletta
5 School of Social Work, Wayne State University, Detroit, MI, USA.
Faith
F
Hopp
D000203:Activities of Daily Living; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D004644:Emotions; D005260:Female; D006296:Health Services / Q000706:statistics & numerical data; D006699:Home Care Services / Q000191:economics / Q000458:organization & administration*; D006801:Humans; D008297:Male; D008824:Michigan; D008875:Middle Aged; D008991:Monitoring, Physiologic; D010166:Palliative Care / Q000191:economics / Q000458:organization & administration*; D012720:Severity of Illness Index; D012934:Social Isolation; D012947:Social Work / Q000458:organization & administration; D012959:Socioeconomic Factors; D029181:Spirituality
disability; evaluation; home-based palliative care; mixed methods; palliative care; patient experience; qualitative