Living on the edge: Family caregivers' experiences of caring for post-stroke family members in China: A qualitative study

Lu, Qi; Mårtensson, Jan; Zhao, Yue; Johansson, Linda

doi:10.1016/j.ijnurstu.2019.02.016

Cited by 53 publications

(94 citation statements)

References 26 publications

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“…Informal care provision has been shown to come at a personal cost: providing care for a loved one who is dealing with illness or disability can be stressful, time-consuming, physically exhausting and this can negatively affect the process and experience of caregiving and the physical and psychological outcomes of both giver and receiver. Previous studies, including several reviews (Angelo & Egan, 2013 ; Chiao, Wu, & Hsiao, 2015 ; Faronbi, Faronbi, Ayamolowo, & Olaogun, 2019 ; Faucher & Garner, 2015 ; Lu, Mårtensson, Zhao, & Johansson, 2019 ; Parveen, Morrison, & Robinson, 2011 ; Viitanen, Winblad, Tuomilehto, Rovio, & Ka, 2007 ; Williams, Morrison, & Robinson, 2014 ), have typically highlighted prevalent negative consequences with regards to caregiver burden and strain, unmet needs and concerns. Care recipients may also report feelings of being worthless, lonely, fearful and not in control of decision making with regards to their care receiving experience (Clissett, Porock, Harwood, & Gladman, 2013 ; Cowdell, 2010 ; Stenwall, Jönhagen, Sandberg, & Fagerberg, 2008 ).…”

Section: Introductionmentioning

confidence: 99%

Getting back or giving back: understanding caregiver motivations and willingness to provide informal care

Zarzycki

Morrison

2021

Health Psychology and Behavioral Medicine

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Background: Informal caregivers are those providing care, which exceeds that which is typically provided, to a relative or friend with care needs. Informal caregiving constitutes the backbone of a society's care supply and with ageing populations the need for informal care is growing. We know little as to why caregivers start caring and continue doing so, yet understanding of motivations and willingness to provide care is important if informal caregivers are to be supported. However, both motivations and willingness are inconsistently defined making it difficult to compare the empirical findings that do exist. Methods: This paper reviews and synthesises thinking about the theoretical constructs of motivations to provide care and willingness to perform informal care, and presents those in relation to existing theoretical and empirical literature. Results and Conclusions: Theoretical reflections based on various motivational frameworks and available empirical data are presented to illustrate that: caregiving motivations should be conceptualised as multifaceted and multiply determined; intrinsic and extrinsic motivations should not be treated as antagonistic and can occur simultaneously; the commonly applied model of extrinsic/intrinsic motivations is oversimplified and omits consideration of the diversity of caregiver motives; other motivational models can be discerned in the context of the empirical research; there are differences between motivations and willingness to provide care with the latter being more consequent to the motives; both should be considered dynamic in nature; and finally, that the two constructs may not inevitably lead to actual caregiver behaviour. The implications of these theoretical reflections for methodology and research as well as their relevance for practice and policy are indicated.

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Section: Introductionmentioning

confidence: 99%

Getting back or giving back: understanding caregiver motivations and willingness to provide informal care

Zarzycki

Morrison

2021

Health Psychology and Behavioral Medicine

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“…Another theme mentioned is creating a new life interpreted by two sub-themes: learning by doing and attitude adjustment. Another study has several different themes: total responsibility, feel alone, feel uncertain about the future, and become prisoners in their own lives to the conclusion that exciting life changes and creating An unstable situation can reduce their well-being [14]. The number of sources that create emotional distress also comes as a different theme in this study [12].…”

Section: Discussionmentioning

confidence: 88%

“…A similar study conducted in Sri Lanka delivered one big theme, namely caring with love, which there are four sub-themes: life changes (increased workload, limitations in IVCN social life, physical changes, and dependency), lack of resources (financial problems, deficiency of knowledge and lack of facilities at home), loving care (taking responsibility, dedicating full care), and coping strategies (self-strength, social support, and feeling valued) [13]. The study involved 26 participants generating one theme: live on the edge by bringing up four sub-themes: having total responsibility, being alone, being a prisoner in one's own life, and being uncertain about the future [14]. Qualitative research on family experiences has yielded unique and mixed results.…”

Section: Resultsmentioning

confidence: 99%

Family Experience as Caregivers in the Rehabilitation of Stroke Patients: A Literature Review

Nurrandi¹,

Putri

2021

KLS

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This study aims to summarize the research results on family experiences as caregivers in post-stroke patients’ rehabilitation processes. The method of this study used a literature review. Google Scholar and PubMed were used to find Bahasa and English articles examining families as caregivers of stroke patients. These studies were assessed using the JBI critical appraisal tools for Qualitative Study with a total of 8 factors used to the quality of the selected articles. Nine articles were reviewed with JBI scores of about 90-100%. This study found 327 articles, and after quality assessment of these studies, nine articles came to review process. The review process generated six general aspects that have been summarized by researchers representing all emerging themes, namely physical, psychological, spiritual, economic, social, and family effort aspects. The results of this literature review hope can be a reference or provision related to families as caregivers. Keywords: caregiver, family, experience, stroke

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“…The mental health and communication skills of caregivers gradually attracted attention with burst keywords “anxiety”, “stress”, and “communication” (Mazanec et al, 2019; Nguyen, Terry, Phan, Vickers, & McInerney, 2019). Qualitative research was also used to explore the caring experience and the needs of caregivers (Lu, Martensson, Zhao, & Johansson, 2019; Preisler et al, 2019) and “education” was the main kind of intervention method for caregivers. An increasing amount of research is focusing on the dependence between patients and caregivers, so we predict that research on patient–caregiver dyads will become a future hotspot in the coming years.…”

Section: Discussionmentioning

confidence: 99%

Research trends and hotspots in caregiver studies: A bibliometric and scientometric analysis of nursing journals

Dong

Wei

Wang

et al. 2020

Journal of Advanced Nursing

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Aims: To explore the intellectual landscape of care-giving studies and identify research trends and hotspots in this field. Design: A bibliometric and scientometric analysis of care-giving literature was undertaken from January-February 2020. Methods: CiteSpace was used to analyse research published between 1900-2019. A references-based co-citation analysis was used to identify the intellectual landscape of care-giving research. A keywords-based co-occurrence analysis with citation bursts was used to explore research hotspots and frontiers. Lastly, a co-authorship network analysis was used to identify cooperation among authors, countries, and institutions. Results: There has been an increasing trend in the number of publications on caregiving research with light fluctuations. Relevant literature mainly focused on the fields of oncology and psychiatry. The keywords-based analysis indicated that the main research targets had previously been informal caregivers of patients with stroke, Alzheimer's disease, and schizophrenia. In recent years, focus has shifted onto informal caregivers of patients with cancer, heart failure, and those at end-of-life. Conclusion: This bibliometric and scientometric analysis helps us understand the current state of caregiver research and its recent developments. Impact: • Caregivers' mental health and care experience have become research hotspots. Where and on whom will the research have an impact?: • This research allows the development of future research on care-giving. • Future researchers should explore effective interventions for the health of patient-caregiver dyads.

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Living on the edge: Family caregivers' experiences of caring for post-stroke family members in China: A qualitative study

Cited by 53 publications

References 26 publications

Getting back or giving back: understanding caregiver motivations and willingness to provide informal care

Getting back or giving back: understanding caregiver motivations and willingness to provide informal care

Family Experience as Caregivers in the Rehabilitation of Stroke Patients: A Literature Review

Research trends and hotspots in caregiver studies: A bibliometric and scientometric analysis of nursing journals

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