Challenges of caregiving to neurological patients

Ransmayr, Gerhard

doi:10.1007/s10354-021-00844-8

Cited by 11 publications

(5 citation statements)

References 46 publications

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“…In line with the interpersonal process model of intimacy, when caregivers’ - care recipients’ open communication was met with care recipients’ understanding and validating responses (i.e., perceived responsiveness), caregivers reported higher intimacy with the care recipient, less burden, and higher communal motivation to care. In line with wider research, caregivers report greater wellbeing when caregiving is valued and acknowledged by the care recipient, the whole family, and broader society (Ransmayr, 2021). Even when a care recipient is ill and unable to reciprocate with tangible support, there is evidence that perceptions of being supported, acknowledged, and validated by care recipients, are of importance in terms of relationship satisfaction and positive aspects of caring role (Kuijer et al, 2001; Ybema et al, 2001).…”

Section: Discussionmentioning

confidence: 72%

The interpersonal process model of intimacy, burden and communal motivation to care in a multinational group of informal caregivers

Ferraris

Bei

Coumoundouros

et al. 2023

Journal of Social and Personal Relationships

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The interpersonal process model of intimacy suggests that intimacy within dyads develops when open communication from one dyad member is met with validating, understanding and caring responses from the other dyad member. Little is known about interpersonal processes between informal caregivers and care recipients in different illness contexts (i.e., coping with neurological, physical or other impairments/comorbidities) and relationship types (i.e., spouses, adult children and others), and how interpersonal processes are linked to the caregivers’ wellbeing. In this cross-sectional study, caregivers ( N = 882) from nine countries reported on their open communication with care recipients, care recipients’ responsiveness, and caregivers’ wellbeing (i.e., intimacy, burden and communal motivation to care). Although caregivers of care recipients with neurological impairments and adult child caregivers reported lower mean levels of open communication and perceived responsiveness, similar mediating effects of perceived responsiveness between open communication and intimacy (effect = 0.05; CI95 = [0.04, 0.06]), burden (effect = −0.42; CI95 = [−0.49, −0.35]), and communal motivation to care (effect = 0.28; CI95 = [0.21, 0.36]) were reported across different illness contexts and relationship types. Only the negative relationship between perceived responsiveness and burden was stronger for spouses (b = −0.23, CI95 = [-0.26, −0.19]) than for adult children and others. Results suggest the interpersonal process model of intimacy may be used to identify caregivers at risk of poor wellbeing in different illness contexts and with different relationships with their care recipients. Lack of open communication and caregivers’ misperceptions of care recipients’ responsiveness may represent opportunities to intervene to enhance caregivers’ intimacy to the care recipients, communal motivation to care, and to decrease caregiver burden.

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Section: Discussionmentioning

confidence: 72%

The interpersonal process model of intimacy, burden and communal motivation to care in a multinational group of informal caregivers

Ferraris

Bei

Coumoundouros

et al. 2023

Journal of Social and Personal Relationships

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“…We observed that sadness and fear were the most clearly associated sentiments, although anger and surprise are reported in our work. Compelling evidence has claimed that the impact of neurological disorders on the relatives of affected patients is a largely underestimated issue and needs more political and public awareness [33,34]. Thus, understandably, Twitter can be an ideal platform to turn to in order to express your needs and seek social and community support.…”

Section: Discussionmentioning

confidence: 99%

Navigating the Digital Neurolandscape: Analyzing the Social Perception of and Sentiments Regarding Neurological Disorders through Topic Modeling and Unsupervised Research Using Twitter

Domingo-Espiñeira,

Fraile-Martínez,

Garcia-Montero

et al. 2024

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Neurological disorders represent the primary cause of disability and the secondary cause of mortality globally. The incidence and prevalence of the most notable neurological disorders are growing rapidly. Considering their social and public perception by using different platforms like Twitter can have a huge impact on the patients, relatives, caregivers and professionals involved in the multidisciplinary management of neurological disorders. In this study, we collected and analyzed all tweets posted in English or Spanish, between 2007 and 2023, referring to headache disorders, dementia, epilepsy, multiple sclerosis, spinal cord injury or Parkinson’s disease using a search engine that has access to 100% of the publicly available tweets. The aim of our work was to deepen our understanding of the public perception of neurological disorders by addressing three major objectives: (1) analyzing the number and temporal evolution of both English and Spanish tweets discussing the most notable neurological disorders (dementias, Parkinson’s disease, multiple sclerosis, spinal cord injury, epilepsy and headache disorders); (2) determining the main thematic content of the Twitter posts and the interest they generated temporally by using topic modeling; and (3) analyzing the sentiments associated with the different topics that were previously collected. Our results show that dementias were, by far, the most common neurological disorders whose treatment was discussed on Twitter, and that the most discussed topics in the tweets included the impact of neurological diseases on patients and relatives, claims to increase public awareness, social support and research, activities to ameliorate disease development and existent/potential treatments or approaches to neurological disorders, with a significant number of the tweets showing negative emotions like fear, anger and sadness, and some also demonstrating positive emotions like joy. Thus, our study shows that not only is Twitter an important and active platform implicated in the dissemination and normalization of neurological disorders, but also that the number of tweets discussing these different entities is quite inequitable, and that a greater intervention and more accurate dissemination of information by different figures and professionals on social media could help to convey a better understanding of the current state, and to project the future state, of neurological diseases for the general public.

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“…Caregiver burden (CB) refers to the health outcomes that the relatives and the carers of patients who are affected by severe illness face on their own journey in providing informal care throughout the onset and the progression of a particular disease in others (Liu et al, 2020;Maguire & Maguire, 2020;Ransmayr, 2021).…”

Section: Discussionmentioning

confidence: 99%

Caregivers’ Burden in Parkinson’s Disease: A Study on Related Features and Attachment Styles

et al. 2023

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Parkinson’s disease (PD) is a chronic progressive neurological disease clinically characterized by motor and non-motor symptoms, with an increasing impact on the quality of life not only for the patient but also for the caregivers. Twenty-six primary caregivers (female = 19; mean age = 57.04, SD = 10.64) of PD patients were consecutively recruited. Several psychological aspects were verified through clinical screening tests: EQ-5D and PQoL CARER for quality of life, Hospital Anxiety and Depression Scale (HADS), Caregiver Burden Inventory (CBI), Family Strain Questionnaire (FSQ), and Adult Attachment Questionnaire. We found that the burden was generally higher in cohabiting female caregivers of patients with dementia as compared with not cohabiting caregivers. Severe burden emerged in 7.7% of the participants according to the PQoL. The mean score of this scale was higher in cohabiting caregivers. Finally, according to the CBI, 19.2% of the participants suffered from severe burden, with mean scores of the CIB-S and CIB-E subscales higher in cohabitants. Our study highlights the need to investigate more thoroughly the burden of caregivers of PD patients and its associated factors, and to pay more attention to the physical and psychological health of caregivers to improve their quality of life.

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Challenges of caregiving to neurological patients

Cited by 11 publications

References 46 publications

The interpersonal process model of intimacy, burden and communal motivation to care in a multinational group of informal caregivers

The interpersonal process model of intimacy, burden and communal motivation to care in a multinational group of informal caregivers

Navigating the Digital Neurolandscape: Analyzing the Social Perception of and Sentiments Regarding Neurological Disorders through Topic Modeling and Unsupervised Research Using Twitter

Caregivers’ Burden in Parkinson’s Disease: A Study on Related Features and Attachment Styles

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