Caring for Caregivers | asmina-shaikh

Caring for

Cancer Caregivers

BACKGROUND

As cancer care shifts from an inpatient to an outpatient treatment model, the role and responsibility of the caregiver is changing significantly. The increased burden transferred from the clinical care team to the caregiver is a recent phenomenon, one that may have wide ranging implications for the patient and their support system.

The Caring for Caregivers research was completed by an interdisciplinary team of graduate student interns in the MSKCC Design Innovation Group during the summer of 2016. We collaborated with different groups throughout the institution including colleagues, patients and caregivers, to problem solve, find opportunities, design new solutions, and ultimately improve the patient experience at MSK.

SPONSOR

Memorial Sloan Kettering Cancer Center (MSKCC), New York

TEAM

Asmina Shaikh, Noah Litvin, Jenni Schneiderman, Sophie Riendau

How might MSKCC better understand and support the cancer caregiver’s experience?

RESEARCH PROCESS

Qualitative Surveys

The design, distribution and collection of 100+ qualitative surveys from caregivers in various MSK waiting rooms and inpatient units (Kimmel, BAIC, BIC, Radiation-Oncology, Counseling Center, 53rd Street, 1275 York, and Pediatrics, Rec Room)

Ethnographic Interviews

14 Ethnographic Interviews with cancer caregivers and 10 Stakeholder Interviews with MSK staff (social work, childlife specialist, chaplaincy, inpatient, patient representative, nurse)

Literature Review

Literature review on the burden and benefits of caregiving

Patient Advisory Committee Meetings

Weekly advisory meetings with a former caregiver and a former patient who both sit on the PFACQ

Co-Design Sessions

Facilitation of 2 Ideation Workshops attended by caregivers, patients and hospital staff

Survey Design for a qualitative survey for cancer caregivers. The survey was designed for caregivers to fill out in the hospital waiting room. The design helped caregivers reflect on their surroundings and their experience as a whole as well as included an outreach piece for the recruitment of participants in the research.

Live visualization of information during discussions & interviews to capture information visually & ease sense making.

Design and production of stimulus cards and activities to aid the research process.
1. Hats of a caregiver - card exercise

2. Support network maps

Design and production of stimulus cards and activities to aid the research process.
1. Hats of a caregiver - card exercise

2. Support network maps

ANALYSIS & SYNTHESIS

DESIGN PRINCIPLES

CO-DESIGN SESSIONS

CONCEPT POSTERS

STRATEGIC VISION

A series of strategic philosophical statements to guide how MSK thinks about the caregiver moving forward.

1. From ancillary to an integral member of the holistic care team.

2. From silo-ed programming to a cohesive, designed experience

3. From reactive support to preventive tools & navigation oriented support

FINAL SHARE OUT

Outcomes of this project include a range of things such as an exhibit that visualized the analysis of stories of the caregivers that contributed to the research as well as 4 core concepts, a presentation to a leadership panel at MSKCC comprising of the Director of Palliative Care, Strategy & Innovation & Social Work & a dense report that documented the findings and concepts generated over the course of the project.