Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

Katbamna, Savita; Manning, Lisa; Mistri, Amit; Johnson, Mark Rd; Robinson, Thompson

doi:10.1080/13557858.2016.1244740

Cited by 6 publications

(13 citation statements)

References 17 publications

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“…A qualitative study showed that the emotional and physical well-being of caregivers of people with sequelae of stroke was impaired because of the uncertainty and unpredictability of the time of care, in addition to their expectations and misunderstood needs. The responsibility to care for other people was a factor that influenced the increase in tension (31) . The social changes evaluated by the items "time for activities with the family, " "time for activities with the friends" and "social roles" obtained, respectively, the scores 2.79, 2.77 and 3.79, the lowest means, except for the item that assesses the change in social roles.…”

Section: Discussionmentioning

confidence: 99%

Burden on caregivers of patients with sequelae of cerebrovascular accident

et al. 2020

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Objectives: to evaluate the burden and its relationship with the sociodemographic characteristics of caregivers of people with sequelae of stroke. Methods: a cross-sectional, exploratory, and quantitative study was conducted with 151 caregivers of people with sequelae of stroke, through home interviews between September and December 2017. Results: there was a general mean of low burden. The items that indicated the worst changes were: “My time for social activities with friends,” “My time for family activities,” “My ability to cope with stress,” and “My physical functioning.” There was an association of burden with the female sex and with caregivers who have been assisting for longer. Conclusions: the results allow us to reflect on the need to create a policy aimed at family caregivers to reduce the impact of care delivery.

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Section: Discussionmentioning

confidence: 99%

Burden on caregivers of patients with sequelae of cerebrovascular accident

et al. 2020

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“…Following the event, caregivers detailed their lack of knowledge as maintaining their uncertainty. Specifically, they reported an inability to “know” the cause of the event [ 26 , 30 , 34 ], the stroke survivors’ prognosis [ 25 , 27 , 29 , 31 , 32 , 33 , 34 , 35 ], the safety of the survivor if left alone [ 24 , 27 , 29 , 30 , 36 ], the support options available [ 27 , 29 , 35 , 36 ], and how to provide care to the survivor [ 27 , 30 , 34 , 35 , 36 ]. While only expressed by some caregivers in one study [ 35 ], the loss of intimacy with and lack of empathy from survivors also contributed to uncertainty.…”

Section: Resultsmentioning

confidence: 99%

“…As a result of this uncertainty, caregivers reported worries about their abilities to successfully navigate their newfound responsibilities. Specifically, they noted concerns about their abilities to manage finances [ 24 , 35 , 36 ], effectively plan for the future [ 24 , 26 , 29 ], identify others who would assume caregiving responsibilities for the survivor if they themselves fell ill [ 25 , 27 , 35 ], and ways to cope with the stroke event [ 26 , 35 ]. The lack of clarity surrounding these concerns resulted in feelings of hopelessness [ 24 , 25 , 27 ].…”

Section: Resultsmentioning

confidence: 99%

“…Encouragingly, caregivers were able to identify effective coping mechanisms to manage their distress. Specifically, caregivers engaged in present-focused thinking [ 24 , 29 , 31 , 32 , 33 , 34 , 36 ], acceptance [ 32 , 36 ], gratitude and positivity [ 29 , 31 , 34 , 35 ], and faith (both spiritual and hope-based); [ 30 , 31 , 32 ].…”

Section: Resultsmentioning

confidence: 99%

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Addressing Uncertainty in Informal Familial Caregivers of Stroke Survivors: A Systematic Meta-Ethnography

Ponzini

Kirk

Segear

et al. 2022

IJERPH

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Background: Informal familial caregivers of stroke survivors experience uncertainty that begins at the time of the stroke event and continues into home-based care. The uncertainty faced by caregivers contributes to poor mental and physical health outcomes. Objective: This review details the factors associated with, impacts of, and coping skills used to manage uncertainty across the caregiving trajectory. By defining uncertainty reduction and tolerance recommendations, this review also builds upon the Stroke Caregiver Readiness Model to improve preparedness following the stroke event. Methods: A meta-ethnographic review was systematically conducted on thirteen qualitative studies with 218 participants from four countries. The Critical Appraisal Skills Programme (CASP) was used to assess study quality. Results: Following the stroke event, caregivers reported a lack of knowing (e.g., about the cause of the stroke event and survivor prognoses) as contributing to post-stroke uncertainty. As a result of this uncertainty, caregivers expressed concerns about their abilities to navigate caregiving responsibilities and how to plan for the future. Longer-term concerns (e.g., managing finances) and feelings of hopelessness occurred after discharge. Still, caregivers identified strategies to manage uncertainty. Caregiver coping skills included present-focused thinking, gratitude, faith, humor, and social support. Conclusions: The uncertainty faced by informal familial caregivers of stroke survivors is pervasive and changes across time. Uncertainty reduction and tolerance interventions can be used to build upon caregiver strengths and promote preparedness across the caregiving trajectory.

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“…It identifies support for carers (family members, friends or neighbours who provide help and assistance to someone) as a global public health issue with a focus on maintaining carer well-being (Zwingmann et al, 2020). The impact of the caring role and the stressors carers can experience when supporting people with complex care needs are well documented (Katbama et al, 2016;Farina et al, 2017;Temple and Bow, 2018). The provision of short breaks is identified as a means of sustaining caring relationships.…”

Section: Introductionmentioning

confidence: 99%

Making personalised short breaks meaningful: a future research agenda to connect academia, policy and practice

Seddon

Miller

Prendergast

et al. 2021

QAOA

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Purpose There is a growing policy impetus to promote carer well-being through the provision of personalised short breaks. However, understanding of what makes for a successful personalised short break is limited. This paper aims to identify key evidence gaps and considers how these could be addressed. Design/methodology/approach A scoping review mapping the evidence base relevant to respite and short breaks for carers for older people, including those living with dementia, was completed. National and international literature published from 2000 onwards was reviewed. The scoping review focused on well-being outcomes, identified by previous research, as being important to carers. Findings Most studies investigating the outcomes of short breaks for carers supporting older people focus on traditional day and residential respite care. Although there have been developments in more personalised break options for carers, research exploring their impact is scarce. There is limited knowledge about how these personalised breaks might support carers to realise important outcomes, including carer health and well-being; a life alongside caring; positive caregiving relationships; choices in caring; and satisfaction in caring. Three priority lines of inquiry to shape a future research agenda are identified: understanding what matters – evidencing personalised short break needs and intended outcomes; capturing what matters – outcomes from personalised short breaks; and commissioning, delivering and scaling up personalised short breaks provision to reflect what matters. Originality/value This paper contributes to the development of an outcome-focused research agenda on personalised short breaks.

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Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

Abstract: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.

Cited by 6 publications

References 17 publications

Burden on caregivers of patients with sequelae of cerebrovascular accident

Burden on caregivers of patients with sequelae of cerebrovascular accident

Addressing Uncertainty in Informal Familial Caregivers of Stroke Survivors: A Systematic Meta-Ethnography

Making personalised short breaks meaningful: a future research agenda to connect academia, policy and practice

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