Meeting caregivers’ needs that align with their values and life purpose

My offerings

  • Co-created a blueprint to map out the step-by-step details of the study visits

  • Co-designed strategies to ensure that visit sessions were participatory

  • Conducted interviews to inform prototypes for visits

  • Created prototypes to capture the caregiver’s stories, needs, and goals

  • Designed materials to engage the caregivers and research staff as equal collaborators and storytellers during the visits

Who are the caregivers?
Caregivers who care for people with advanced heart failure (at home).

Background
While many caregivers find it meaningful to care for someone, they can also feel more stressed, lonely, and burdened with responsibility. So there was a need to carry out a research project to improve caregivers’ health, comfort, and joy. The goal was to support caregivers to see and accept their own needs. Also, to build on their strengths to achieve their purpose and goals.

The research project had five visits between a caregiver and a nurse researcher. Each visit focused on making self-care goals like discussing the caregiver’s purpose in life or identifying someone in their community they could ask for help.

Co-creation
The research team worked with community partners, caregivers, healthcare specialists, and social workers to design the research. We did our best to develop a participatory research process where caregivers and nurse researchers engaged as equal partners.

Collaborator
Johns Hopkins School of Nursing
Nursing Research, Caregiver Support
2019, Baltimore, USA

Results

  • The common topics of caregivers’ life purpose were ‘faith’ and ‘self-care.’

  • Out of 85 action plans, 66.7% of the plans were completed.

Impact

Successful stories and evidence that can inform future strategies, policies and ways of working

Thank you for practicing so many role-plays and sharing infinite care and love!

Funded by the Hopkins PROMOTE Center 5P30NR01809303

Martha Abshire Saylor, PhD, RN

Lyndsay DeGroot, PhD, RN

Noelle Pavlovic, PhD (c), RN

Anna Peeler, PhD, RN

Katie Nelson, PhD, RN

N’Deye Diakhate, MA

Ashley Eberhart, MA

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Understanding research trial collaborators; their strengths, needs and interdependence