Valued activities and informal caregiving in stroke: a scoping review

Jellema, Sandra; Wijnen, Mandy; Steultjens, Esther; Sanden, Maria W. G. Nijhuis-van der; Sande, Rob van der

doi:10.1080/09638288.2018.1460625

Cited by 20 publications

(24 citation statements)

References 64 publications

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“…In this respect, other studies have reported that negotiations about activity resumption are more pervasive in case of intimate social relationships [34,35]. Brain injury often results in a loss of mutual activities and connectivity, and in changes in expectations, roles and responsibilities between partners [36][37][38], which can lead to high levels of stress [39][40][41]. Also, parents with a son or daughter with brain injury often experience high levels of stress and burden [42].…”

Section: Discussionmentioning

confidence: 98%

Activity resumption after acquired brain injury: the influence of the social network as described by social workers

Jellema

Erp

Sanden

et al. 2019

Disability and Rehabilitation

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Purpose: To understand how the social network of patients with acquired brain injury facilitates or hinders resumption of their activities, such as social and leisure activities, and how this affects patients' wellbeing and quality of life. Methods: Thematic analysis was applied to 70 narratives about family members, friends, neighbors and colleagues helping or hindering patients in resuming their activities. The narratives were derived from social workers with extensive experience with brain-injured patients and their social networks. Results: The narratives show that an available, understanding and well-informed network enhances activity resumption by being inclusive and encouraging patients to develop their skills. This is in line with earlier studies based on patients' experiences. Whereas the patient-based studies emphasize that being unsupportive or overprotective hinders patients from resuming their activities, this study also shows that preventing patients from meeting others or placing too-high demands results in activity loss, social isolation and reduced well-being and quality of life. Conclusions: Several social network factors play a role in activity resumption, well-being, and quality of life of after brain injury. Early after the brain injury, rehabilitation professionals should work with patients' family members, friends, and others and educate them about how to provide adequate support. ä IMPLICATIONS FOR REHABILITATION Since the patient's social network is an important determinant of activity resumption, rehabilitation professionals should analyze its features soon after brain injury, such as whether patients have an understanding network that encourages them and includes them in their activities. Since especially close network members tend to be protective of or place high demands on the patient, rehabilitation professionals should explain to them the importance of activity resumption for the patient's wellbeing and the adverse effects of being overprotective or over-demanding. Rehabilitation professionals should include other network members, such as friends or colleagues, in the rehabilitation process and educate them about how to support patients in resuming their activities.

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Section: Discussionmentioning

confidence: 98%

Activity resumption after acquired brain injury: the influence of the social network as described by social workers

Jellema

Erp

Sanden

et al. 2019

Disability and Rehabilitation

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“…However, the provision of informal care is associated with a range of personal and societal costs. Costs include high caregiving burden (Oliva-Moreno et al, 2018;Pucciarelli et al, 2018), reductions in paid employment and associated financial difficulties (Andrew et al, 2015), social isolation (Lou et al, 2017), loss of self-identify (Knowles et al, 2016) and reduced engagement with valued activities (Jellema et al, 2019). Provision of informal care is also associated with greater risk of poor physical health (Hiel et al, 2015) and mental health (Haley et al, 2015) in informal caregivers themselves, with pooled prevalence rates of 40.2 and 21.4% found for depressive and anxiety-related symptoms, respectively (Loh et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

Supported cognitive-behavioural therapy self-help versus treatment-as-usual for depressed informal caregivers of stroke survivors (CEDArS): feasibility randomised controlled trial

Farrand

Woodford

Coumoundouros

et al. 2020

tCBT

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Demands placed on informal caregivers can result in an increased likelihood of experiencing common mental health difficulties that may affect their ability to undertake the caring role. Currently, however, few evidence-based interventions have been specifically developed for informal caregivers and available interventions are difficult to access. The Improving Access to Psychological Therapies (IAPT) programme aims to improve access to evidence-based psychological therapies for all groups and may therefore present an opportunity to meet informal caregiver needs. Located within the MRC Complex Intervention Framework, a Phase II feasibility randomised controlled trial (RCT) examines key methodological, procedural and clinical uncertainties associated with running a definitive Phase III RCT of an adapted written cognitive behavioural therapy (CBT) self-help intervention for informal caregivers of stroke survivors. Recruitment was low despite different recruitment strategies being adopted, highlighting significant challenges moving towards a Phase III RCT until resolved. Difficulties with study recruitment may reflect wider challenges engaging informal caregivers in psychological interventions and may have implications for IAPT services seeking to improve access for this group. Further attempts to develop a successful recruitment protocol to progress to a Phase III RCT examining effectiveness of the adapted CBT self-help intervention should be encouraged. Key learning aims After reading this article, readers should be able to: (1) Consider key feasibility issues with regard to recruitment and attrition when running a randomised controlled trial of an adapted written cognitive behavioural therapy (CBT) self-help intervention for informal caregivers of stroke survivors. (2) Understand potential barriers experienced by an informal caregiving population to accessing psychological interventions. (3) Appreciate implications for clinical practice to enhance access to IAPT services and low-intensity CBT working with an informal caregiver population.

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“…Stroke is an umbrella term that includes infarction or hemorrhage in the brain, which can result in reduced performance capacity due to impaired mobility, cognition, speech, sensation or vision [1,2]. A stroke often leads to reduced life satisfaction and participation in everyday life for those affected and their significant others [3,4]. In many cases, the need for healthcare services and rehabilitation remains for years [1,5].…”

Section: Introductionmentioning

confidence: 99%

Exploring future possibilities of using information and communication technology in multidisciplinary rehabilitation after stroke – a grounded theory study

Gustavsson

Ytterberg

Guidetti

2019

Scandinavian Journal of Occupational Therapy

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Background: Using Information and Communication Technology (ICT) could increase the intensity of rehabilitation, the level of patient activity and participation in everyday life after stroke and is in line with having a person-centred approach. Aim: To explore how healthcare professionals use and could potentially use ICT to enable a person-centred rehabilitation process after stroke. Methods: Six individual and two focus group interviews were conducted with a group of healthcare professionals working within rehabilitation after stroke. A grounded theory approach was used to collect and analyze the data. Results: The professionals described their current use of ICT as well as their vision of how ICT could be incorporated as a tool in rehabilitation for sharing in four categories: (1) Sharing of information, (2) Collaborating from a distance, (3) Having transparency in the documentation and (4) Supporting patients' use of ICT. Conclusion: Professionals state that using ICT solutions in rehabilitation after stroke could increase sharing between professionals and their patients and increase patient participation in the rehabilitation process. Significance: This study highlights the importance of developing ICT that healthcare professionals could use along with a person-centred approach. The results will be used to develop an ICT-supported multidisciplinary intervention for rehabilitation after stroke.

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Valued activities and informal caregiving in stroke: a scoping review

Cited by 20 publications

References 64 publications

Activity resumption after acquired brain injury: the influence of the social network as described by social workers

Activity resumption after acquired brain injury: the influence of the social network as described by social workers

Supported cognitive-behavioural therapy self-help versus treatment-as-usual for depressed informal caregivers of stroke survivors (CEDArS): feasibility randomised controlled trial

Exploring future possibilities of using information and communication technology in multidisciplinary rehabilitation after stroke – a grounded theory study

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