The Impact of Interactions with Providers on Stroke Caregivers' Needs

Abstract

Purpose Preparation for caregiving is improved through engaged interactions between stroke family caregivers and healthcare providers throughout the care trajectory. We explored caregivers’ perceptions about interactions with providers in rehabilitation, and how these experiences affected caregiver preparation. Design Seventeen caregivers, included in this grounded theory study, were interviewed during a rehabilitation stay and post-discharge. Data were analyzed using dimensional and comparative analysis. Findings Caregivers described interactions with providers on a continuum from collaborative to disconnected, and a range of strategies to enhance interactions. Conclusions Caregivers want to be actively engaged with providers during inpatient rehabilitation and collaborative interactions enhance preparedness and care satisfaction. Relevance Family members should be assessed for caregiving capacity and interactions between providers and caregivers should be individualized to specific needs. Providers must also be aware that many caregivers are not active information seekers. They must engage caregivers who may not even know what questions to ask.

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

“…Health care providers consistently considered the patient as the primary focus of care. However, caregivers also wanted to receive support, beginning from the discharge (preparation) to the post-discharge (adaptation) phases [18], a finding consistent with other studies [8, 9, 15, 16]. …”

“…This finding underscores the need for early caregiver assessment followed by individualized caregiver interventions during these critical time periods following stroke [19, 27, 28]. Results in Creasy et al’s [16] study showed it was important to caregivers that information about stroke was presented in a timely fashion and was applicable to the person with stroke, and also that health care providers emphasized the importance of this information to the caregivers. Cameron et al’s 2013 [18] and 2014 [36] studies using the “Timing it Right” framework illustrated how stroke caregivers’ needs for information and support change over time.…”

“…In the findings from Cobley et al, [9], O’Shea & Goode, [15], and Perry and Middleton [11], caregivers reported they were either not given any or enough information information about stroke, and communication mismatches were common. Caregivers described feeling isolated, neglected, and excluded from the discharge decision and planning process [9], and they wanted a more collaborative interaction with health care providers [16]. Wilz and Barskova [17] emphasized the importance of studying the long-term effects of caregiving, noting that their multi-component intervention for spousal stroke caregivers did not produce significant changes in caregiver depressive symptoms until six months after the intervention.…”

”I Don’t Believe in Leading a Life of My Own, I Lead His Life”: A Qualitative Investigation of Difficulties Experienced by Informal Caregivers of Stroke Survivors Experiencing Depressive and Anxious Symptoms

“…Uncertainty is a further common theme found within the caregiver qualitative research (Greenwood, MacKenzie, Wilson, & Cloud, 2009b), coupled with poor communication from healthcare providers and lack of stroke specific information and discharge needs not being met (Camak, 2015;Creasy, Lutz, Young, Ford, & Martz, 2013). However, previous research identifying uncertainty underling the caregiving experience has focused on caregivers of stroke survivors recently discharged up to 3 months post-discharge (Greenwood et al, 2009b).…”

Caregiver’s burden in pulmonary arterial hypertension: a clinical review

“…They are concerned about not having the necessary skills which are required for optimal care given to their partners. Creasy et al (2013) conducted a study of 17 family caregivers of stoke patients and their interaction with physicians. The study found that caregivers felt very disconnected and ignored by physicians and there was a lack of communication between each other.…”