The unmet needs of family members of patients with progressive neurological disease in the Czech Republic

Bužgová, Radka; Kozáková, Radka; Juríčková, Ľubica

doi:10.1371/journal.pone.0214395

Cited by 9 publications

(5 citation statements)

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“…The discussions and interviews were recorded by a voice recorder, transcribed verbatim and anonymized to ensure confidentiality. On the basis of the initial analysis, three main themes were selected, and then analyzed individually: 1. unmet needs of patients with PND [13], 2. unmet needs of family members [14], and 3. provision of information to patients and adaptation to the disease. This article describes the analysis of domain 3 only.…”

Section: Methodsmentioning

confidence: 99%

Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

Bužgová

Kozáková

2019

BMC Neurol

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BackgroundProgressive neurological diseases, such as multiple sclerosis, Parkinson’s disease, Huntington’s disease, significantly interfere with patients’ lives, and those of their families. The aim of the research was to establish whether the extent of the information on patients’ health conditions, and the way patients learn this information from doctors affect their adaptation to chronic and progressive diseases.MethodsQualitative methodology was used for a total of 52 participants (patients with progressive neurological diseases, their family members, and health and social workers). Data were collected using individual, in-depth interviews and focus groups. Analysis of data for interpretation, conceptualization, and re-integration was performed by open, axial, and selective coding.ResultsIt was determined that adequate information about patients’ health status, and the use of coping strategies are related to their adaptation to their disease, and consequently, to their quality of life. The participants often considered the extent of the information provided, and the way they were informed to be inadequate. Receiving the diagnosis, the progression of the disease, and the end of life were found to be the most burdensome.ConclusionOur results show that Czech neurologist should develop better communication skills, particularly for informing patients with progressive neurological diseases. Open communication, emotional support, and support in selecting effective coping strategies can help patients adapt more readily to their disease, and improve their quality of life.

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Section: Methodsmentioning

confidence: 99%

Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

Bužgová

Kozáková

2019

BMC Neurol

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“…Contemporary social and economic realities were sometimes acutely in conflict with cultural patterns. The issues of caregivers’ confusions on sharing responsibilities with professional care providers, as well as their uncertainty regarding their role in care of severely ill patients, followed by burdens and loss of caregivers’ dignity were also reported by recent Norwegian, Czech and Iranian qualitative studies [ 25 , 36 , 37 ].…”

Section: Discussionmentioning

confidence: 96%

“…For example, Baji and colleagues demonstrated the impact of demographic changes in Poland and Eastern Europe, and changes to the familial system of care for the elderly and dying urge the necessity for action in EoL care [ 24 ]. The unmet needs in all constructs decreased quality of life of family members and increased the care burden [ 25 ].…”

Section: Introductionmentioning

confidence: 99%

What does it mean to be the main caregiver to a terminally ill family member in Lithuania?: A qualitative study

et al. 2022

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Introduction Family caregivers are a great resource for providing dignified end-of-life care for terminally ill patients. Framed from the perspective of role theory and the relational nature of providing and receiving care, study objectives were as follows: (1) to capture caregivers’ understanding of the process of taking on the role of main caregiver, (2) to conceptualize their understanding of the functions that they assume while being the main caregivers, and (3) to understand how they experienced the consequences they confronted. Methods The research team employed the methodological strategy of descriptive thematic analysis using a semi-structured interview guide. The sample consisting of 33 family caregivers was recruited using purposeful and snowball sampling strategies in 2020. Interview data was analyzed using content-driven inductive thematic analysis. Results The data analysis revealed four main themes that structure the process of becoming the main care giver of a terminally ill family member and the meaning of the caregiver role: (1) inaccessibility and mistrust of public care services for persons with terminal illness, (2) moral obligations and responsibilities of immediate family and friends, (3) cultural traditions, (4) the caregiver feels responsible for everything. The themes describe the social role of family caregiver in social context, address the process of taking on the role of caregiver and living with systemic corruption. Conclusions Recognition of caregiving experiences is essential in planning better systems, in direct practice and in confronting corruption. The study suggests the need for open communication, accessibility of quality services, and the recognition of caregivers as care-team members. The larger implication is that the increasing numbers of distressed caregivers and aging populations can be considered as public health populations, and thus addressable through public health methods.

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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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The unmet needs of family members of patients with progressive neurological disease in the Czech Republic

Cited by 9 publications

References 47 publications

Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

What does it mean to be the main caregiver to a terminally ill family member in Lithuania?: A qualitative study

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

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