scholarly journals Exploring the perspectives of people post-stroke, carers and healthcare professionals to inform the development of an intervention to improve cognitive impairment post-stroke

2020 ◽  
Vol 3 ◽  
pp. 93
Author(s):  
Mairéad O' Donoghue ◽  
Pauline Boland ◽  
Siobhan Leahy ◽  
Rose Galvin ◽  
Sara Hayes

Background: Stroke is a leading cause of death and disability worldwide. Cognitive impairment is common post-stroke and can result in negative sequalae such as a lower quality of life, increased carer burden and increased healthcare costs. Despite the prevalence and associated burden of post-stroke cognitive impairment, there is uncertainty regarding the optimum intervention to improve cognitive function post-stroke. By exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment, this qualitative study aims to inform the design and development of an intervention to rehabilitate cognitive impairment post-stroke. Methods: A qualitative descriptive approach will be applied, using semi-structured interviews with people post-stroke, carers and healthcare professionals. People post-stroke will be recruited via gatekeepers from a local stroke support group and Headway, a brain injury support service. Carers will be recruited via a gatekeeper from a local carers branch. Healthcare professionals will be recruited via gatekeepers from relevant neurological sites and via Twitter. The final number of participants recruited will be guided by information power. Data will be collectively analysed and synthesised using thematic analysis. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines will be used to standardize the conduct and reporting of the research. Conclusions: It is anticipated that exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment post-stroke will inform the development of an evidence-based optimal intervention to rehabilitate cognitive deficits post-stroke. This study was granted ethical approval from the Faculty of Education and Health Sciences Research Ethics Committee at the University of Limerick. Study findings will be disseminated locally through presentations at stroke support groups, as well as internationally through academic conferences and peer-reviewed journals.

2021 ◽  
Vol 3 ◽  
pp. 93
Author(s):  
Mairéad O' Donoghue ◽  
Pauline Boland ◽  
Siobhan Leahy ◽  
Rose Galvin ◽  
Sara Hayes

Background: Stroke is a leading cause of death and disability worldwide. Cognitive impairment is common post-stroke and can result in negative sequalae such as a lower quality of life, increased carer burden and increased healthcare costs. Despite the prevalence and associated burden of post-stroke cognitive impairment, there is uncertainty regarding the optimum intervention to improve cognitive function post-stroke. By exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment, this qualitative study aims to inform the design and development of an intervention to rehabilitate cognitive impairment post-stroke. Methods: A qualitative descriptive approach will be applied, using semi-structured interviews with people post-stroke, carers and healthcare professionals. People post-stroke will be recruited via gatekeepers from a local stroke support group and Headway, a brain injury support service. Carers will be recruited via a gatekeeper from a local carers branch. Healthcare professionals will be recruited via gatekeepers from relevant neurological sites and via Twitter. The final number of participants recruited will be guided by information power. Data will be collectively analysed and synthesised using thematic analysis. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines will be used to standardize the conduct and reporting of the research. Conclusions: It is anticipated that exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment post-stroke will inform the development of an evidence-based optimal intervention to rehabilitate cognitive deficits post-stroke. This study was granted ethical approval from the Faculty of Education and Health Sciences Research Ethics Committee at the University of Limerick. Study findings will be disseminated locally through presentations at stroke support groups, as well as internationally through academic conferences and peer-reviewed journals.


2019 ◽  
Vol 2 ◽  
pp. 9
Author(s):  
Daniel D. Carter ◽  
Katie Robinson ◽  
John Forbes ◽  
Jane C. Walsh ◽  
Sara Hayes

Background: Physical inactivity is both the second-highest population attributable risk factor for and a common consequence of stroke. Despite well-documented health benefits associated with physical activity, its levels typically remain below recommended guidelines in stroke survivors. Consequently, calls have been made for novel interventions targeting the promotion of physical activity in stroke survivors. Mobile health is an emerging field which can offer personalised health interventions through mobile and wireless technology. However, a paucity of research has focused on mobile health to promote physical activity in stroke survivors and, more broadly, this field has been criticised for not incorporating the views of stakeholders. This study aims to explore the perspectives of stroke survivors and healthcare professionals on the development of a mobile health intervention for the promotion of physical activity. Methods: The current study will employ a qualitative descriptive approach using separate, semi-structured focus groups for two key stakeholder groups. Community-dwelling stroke survivors will be recruited through an early supported discharge service for acute stroke and stroke support groups. Healthcare professionals will be recruited through the same early supported discharge service, relevant professional bodies and Twitter. The final number of focus groups will depend on data saturation. Thematic analysis will be conducted using NVivo 12 and findings will be reported in accordance with the Consolidated Criteria for Reporting Qualitative Studies. Conclusion: This study was granted ethical approval from the HSE Mid-Western Regional Hospital Research Ethics Committee and the Faculty of Education and Health Sciences Research Ethics Committee at the University of Limerick. Output will consist of recommendations for the development of a mobile health intervention aimed at the promotion of physical activity in stroke survivors. Findings will be disseminated locally through presentations at stroke support groups, as well as internationally through academic conferences and peer-reviewed journals.


2019 ◽  
Vol 29 (7) ◽  
pp. 460-468
Author(s):  
Rebekah Tan ◽  
Serena Koh ◽  
Min En Wong ◽  
Ma Rui ◽  
Shefaly Shorey

The diagnosis of childhood cancer not only affects the life of the child but also impacts the lives of the caregivers as well. This study aims to explore the caregiving stress, coping strategies, and support needs of mothers caring for children/adolescents with cancer during the active treatment phase. Individual semi-structured interviews were conducted, and two authors independently and thematically analyzed data. Caregiving mothers went through a process of emotional changes and a change in lifestyles when their children were diagnosed with cancer and undergoing treatments. It is important to ensure that caregiving mothers of children/adolescents with cancer are well supported by family, friends, and healthcare professionals. Healthcare professionals can develop informational booklets on cancer treatment protocols and work together with mothers. Parent support groups and plans for psychoeducational and spiritual care programs for mothers as forms of informational and emotional support may also be established.


2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.


Delirium is a common serious complication in dementia that is associated with poor prognosis and a high burden on caregivers and healthcare professionals. Appropriate care is therefore important at an early stage for patients with delirium superimposed on dementia To gain insight into the care of six patients with delirium superimposed on dementia, 19 semi-structured interviews were conducted focused on the experiences of caregivers and professionals. The interviews revealed four themes that appeared to play a role: 1. experiences with and views on behavioral problems of these patients, 2. recognition and diagnosis of delirium in dementia, 3. views on good care and 4. organizational aspects. Knowledge gaps about delirium in dementia, as well as ethical considerations, play an important role in organizing timely and adequate care for patients with delirium superimposed on dementia.


2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ingrid Johansen Skogestad ◽  
Marit Kirkevold ◽  
Petra Larsson ◽  
Christine Råheim Borge ◽  
Bent Indredavik ◽  
...  

Abstract Background Post-stroke fatigue (PSF) is commonly reported and described as disabling by patients recovering from stroke. However, a major challenge is how to accurately diagnose and assess PSF. Therefore, the aim of this study was to explore PSF as it is experienced by stroke survivors and described by health professionals to guide future development of a PSF-specific PROM. Methods Individual semi-structured interviews were conducted with stroke survivors experiencing PSF (n = 9) and three focus groups were conducted with health professionals (n = 16). Data were analyzed through inductive content analysis. Results The analysis revealed four themes illustrating the experience and descriptions of PSF: 1) PSF characteristics, 2) interfering and aggravating factors, 3) management, and 4) PSF awareness, which refers to stroke survivors first becoming aware of PSF after their initial hospital admission. Conclusion This study highlights the complexity and multidimensionality of PSF. The results from this study will guide future development of a PSF-PROM and support its content validity.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
M. Torensma ◽  
B. D. Onwuteaka-Philipsen ◽  
X. de Voogd ◽  
D. L. Willems ◽  
J. L. Suurmond

Abstract Background The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers’ efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. Methods We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. Results Researchers’ efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers’ efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. Conclusion Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.


Author(s):  
Chia-Hui Yu ◽  
Chu-Yu Huang ◽  
Nai-Ying Ko ◽  
Heng-Hsin Tung ◽  
Hui-Man Huang ◽  
...  

People living with HIV (PLWH) face social stigma which makes disclosure of HIV status difficult. The purpose of this descriptive qualitative study was to understand the lived experiences of stigmatization in the process of disease disclosure among PLWH in Taiwan. Analysis of the semi-structured interviews from 19 PLWH in Taiwan revealed two phases and six themes. Phase one “experiences before disclosure” involved three themes: “Struggles under the pressure of concealing the HIV Status,” “Torn between fear of unemployment/isolation and desire to protect closed ones,” and “Being forced to disclose the HIV status.” Phase two “experiences after disclosure” included three themes: “Receiving special considerations and requirements from school or work,” “Receiving differential treatments in life and when seeking medical care,” and “Stress relief and restart.” Healthcare professionals need to assess stigmatization in PLWH and develop individualized approaches to assist with the disease disclosure process.


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