Tracking patterns of needs during a telephone follow-up programme for family caregivers of persons with stroke

Abstract

Purpose: Programmes that address stroke family caregiver needs and skill-building are recommended based on the literature and patient care guidelines for stroke rehabilitation. The purpose of this study was to explore patterns of perceived needs and skill-building during a stroke caregiver intervention programme.

Method: Descriptive statistics were used to analyse data from 123 stroke caregivers enrolled in the intervention group of a randomised controlled clinical trial. Caregivers received eight weekly telephone sessions, with a booster session a month later. At each session, the Caregiver Needs and Concerns Checklist (CNCC) was used to identify and prioritise current needs that were then addressed through skill-building strategies.

Results: Perceived needs changed over time. Information about stroke was the highest priority need during Session 1. Managing survivor emotions and behaviours was the highest priority for Sessions 2 through 4. Caregivers generally waited until Sessions 5 through 9 to address their own emotional and physical health needs. Physical and instrumental care needs were relatively low but stable across all nine sessions. Skill-building was consistently high, though it peaked during Sessions 2 and 3.

Conclusions: Tracking patterns of needs and skill-building suggest appropriate timing for targeting different types of family caregiver support during stroke rehabilitation.

Implications for Rehabilitation

• Family caregivers of stroke survivors play an essential role in the rehabilitation process of the stroke survivor.

• Identifying and addressing the priority needs and concerns of stroke caregivers during the early discharge period enables caregivers to provide sustained support for the stroke survivor.

• Rehabilitation professionals are in a key position to address evolving caregiver needs and concerns as they transition to home settings with follow-up care.

Keywords:

• Behaviour
• caregiver
• clinical trials
• family
• stress
• stroke

Acknowledgements

The authors would like to acknowledge the assistance of Phyllis Dexter, PhD, RN, Indiana University School of Nursing, for her helpful review of this manuscript.

Declaration of interest

The funding for this study was provided by the National Institutes of Health, National Institute of Nursing Research, R01NR010388 (Tamilyn Bakas, PI) and K01NR008712 (Tamilyn Bakas, PI). The authors report no other conflicts of interest.

National Institute of Nursing Research 10.13039/100000056 K01NR008712,R01NR010388.