Problems of family caregivers of people with Parkinson’s disease as a challenge for social work

2021 ◽  
Vol 36 (1) ◽  
pp. 97-119
Author(s):  
Beata Szluz
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Social Work ◽  
Family Caregivers ◽  
Elderly Person ◽  
Chronically Ill ◽  
Financial Costs ◽  
The People ◽  
Depth Interview ◽  
The Family

Due to the aging of societies the increased prevalence of patients with dementia is observed. Parkinson’s disease is one of the most frequent neurodegenerative disorders and occurs mainly among the people agedover 50 years. Caring for a person with Parkinson’s disease is not only exhausting physically and emotionally, but it also meanshigh financial costs. Caring is associated with a high risk of a decreasedquality of life, it is especially in case of the family caregivers who are emotionally attached to the patient. The article attempts to show the problems associated with caring for a person with Parkinson’s disease that set tasks for social work with a family experiencing disease and disability. The survey was conducted in July 2019 in the Podkarpackie Voivodeship, using the (In-Depth Interview – IDI technique. The study was qualitative. Its assumption was not to obtain representative data characterizing the family caregivers of people with Parkinson’s disease, but to try to capture how the problems associated with caring for this category of patients burden caregivers and to what extent they expect support (supporting supporters). Presenting the burden on family caregivers in the light of qualitative research made it possible to identify the specific tasks facing a social worker who works with the family of a chronically ill elderly person and to propose a training program for caregivers.

Polypharmacy in chronic neurological diseases: Multiple sclerosis, dementia and Parkinson’s disease

2021 ◽  
Vol 27 ◽  
Author(s):  
Niklas Frahm ◽  
Michael Hecker ◽  
Uwe Zettl
Keyword(s):  
Multiple Sclerosis ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Neurological Diseases ◽  
Severe Disease ◽  
Inappropriate Medication ◽  
Medication Management ◽  
Chronically Ill ◽  
Symptom Profile ◽  
Quantitative Definition

: Polypharmacy is an important aspect of medication management and particularly affects elderly and chronically ill people. Patients with dementia, Parkinson’s disease (PD) or multiple sclerosis (MS) are at high risk for multimedication due to their complex symptomatology. Our aim was to provide an overview of different definitions of polypharmacy and to present the current state of research on polypharmacy in patients with dementia, PD or MS. The most common definition of polypharmacy in the literature is the concomitant use of ≥5 medications (quantitative definition approach). Polypharmacy rates of up to >50% have been reported for patients with dementia, PD or MS, although MS patients are on average significantly younger than those with dementia or PD. The main predictor of polypharmacy is the complex symptom profile of these neurological disorders. Potentially inappropriate medication (PIM), drug-drug interactions, poor treatment adherence, severe disease course, cognitive impairment, hospitalisation, poor quality of life, frailty and mortality have been associated with polypharmacy in patients with dementia, PD or MS. For patients with polypharmacy, either the avoidance of PIM (selective deprescribing) or the substitution of PIM with more suitable drugs (appropriate polypharmacy) is recommended to achieve a more effective therapeutic management.

scholarly journals “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

scholarly journals DETERMINING FACTORS IN THE SITUATIONAL TRANSITION OF FAMILY MEMBERS WHO CARE OF ELDERLY PEOPLE WITH PARKINSON'S DISEASE

2019 ◽  
Vol 28 ◽  
Author(s):  
Simony Fabíola Lopes Nunes ◽  
Angela Maria Alvarez ◽  
Maria Fernanda Baeta Neves Alonso da Costa ◽  
Rafaela Vivian Valcarenghi
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Health Services ◽  
Physical Health ◽  
Family Support ◽  
Elderly People ◽  
Advanced Age ◽  
The Family ◽  
Elderly Caregivers

ABSTRACT Objective: to investigate the facilitator and inhibitory factors in the transition of elderly caregivers with Parkinson's disease. Method: a qualitative, exploratory and descriptive study, based on the family transition nursing theory developed with 20 elderly caregivers of elderly people with Parkinson 's disease, enrolled in the Associação Parkinson de Santa Catarina, from March to August 2015. To analyze and interpret the data, we used the thematic analysis of content proposed by Bardin, with the help of the ATLAS.ti software for data organization. Results: some factors were identified and considered as facilitators for the process of transition from the familiar to the exercise of the role of caregiver, such as: previous experiences as caregiver; spirituality and religiosity; family support network and health services. Other factors were identified as inhibiting factors for transition: emotional and physical health conditions; advanced age; personal life activities/commitments; family financial burden; and inadequate family support. It was observed that most family caregivers reported having previous experience in caring, having advanced age, and being able to care for the elderly with the disease. However, he considers his condition of emotional and physical health insufficient, resulting in overload. Lack of access to health services and family and financial support make it difficult to provide care. Conclusion: nurses should seek strategies to direct attention to facilitating factors in the family context in order to help the family to achieve well-being and healthy transition to the role of caregiver.

Travels With My Father

2017 ◽  
Vol 23 (4) ◽  
pp. 257-266 ◽  
Author(s):  
Lise Claiborne
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Later Life ◽  
Changing Climate ◽  
The Family ◽  
The Difference

Barad’s diffractive methodology was used to explore one man’s encounter with Parkinson’s disease after long exposure to pesticides in home maintenance. The study moved from a realist account of relevant studies in toxicology, entomology, and neurology toward an onto-ethico-epistemological enquiry that asked how humans and insects live and work within the shared mattering of minerals, water, and time. Constructed memories of my father’s later life were explored within masculine discourses about protection of the family from invading insects and an intra-active reconsideration of the contradictions involved in the use of poison as both care and harm. New materialist theorizing took the focus from an exploration of the difference experienced by one fragile body toward a larger engagement with material and discursive forces, ending with questions about U.S. modernism and the tenaciousness of human subjectivities in a time of changing climate and movement of species around the globe.

scholarly journals The Phenomenon of Brain World : Neuroculture in the Making by Patients with Parkinson’s Disease

2018 ◽  
Vol 10 (1) ◽  
pp. 102-114
Author(s):  
Markus Idvall
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Clinical Trials ◽  
Biomedical Research ◽  
Daily Life ◽  
Chronically Ill ◽  
Main Body ◽  
Embodied Experience ◽  
Clinical Neuroscience ◽  
The Brain

The aim of this article is to explore how the phenomenon of brain world, as a symptom of a possible emerging neuroculture, is perceived and enacted by patients with Parkinson’s disease, who, in their daily life, are subjected to neuroscience, most often as chronically ill individuals hoping for a cure, but also in some instances as participants in clinical trials. The article is based on a multifaceted ethnographic material that maps the experiences of biomedical research among patients with Parkinson’s. The main body of material consists of interviews carried out in 2012 and 2015, and comprises 19 transcripts of recorded conversations, conducted in groups as well as individually. The article argues that the exposure of the patients to clinical neuroscience gives birth to neuroculture. A materialist-discursive phenomenon called brain world—perceptions and enactments of the brain—is problematized on the basis of how patients cope with and reflect on their chronic illness in everyday life situations and in confrontation with clinical neuroscience. The embodied experience of the illness operates as the route into the brain world and also becomes the ground for how this world is featured with specific properties. Brain world is in this respect a contradictory entity: both plastic and fragile, both accessible and too complex, both strange and known. Most of all, brain world, in the eyes of the patients, relates to a territory still dominated by neuroscientists.

scholarly journals Traditions Of Child Raising In Uzbek Rural Family

2021 ◽  
Vol 03 (06) ◽  
pp. 81-94
Author(s):  
Ubaydullaeva B.M. ◽  
◽  
◽  
Keyword(s):  
Economic History ◽  
Sociology Of Education ◽  
Functional Theory ◽  
Child Socialization ◽  
The People ◽  
Depth Interview ◽  
The Family ◽  
Major Stage ◽  
History Of ◽  
The Village

The study of the issue of child socialization is one of the current problems of ethnology. Because through the upbringing of children, one can learn a lot about the lifestyle, spiritual outlook, psychological image and socio-economic history of the people. This article aims to study the features of child socialization in a modern Uzbek village on the example of a village. The information in the article was collected during the author's expeditions to the village of Mindon in 2012-2014. Research methods: direct observation, in-depth interview-based interviews and questionnaires. Theoretically, it was based on T. Parsons' structural functional theory on the study of socialization [26, p.58.]. In this theory, the family is shown as the first major stage of socialization. The study shows that the traditional method of upbringing in the family depends on the lifestyle of the people and is based on the experience of the people in child psychology, taking into account the mental and physical aspects of the mother from pregnancy to childbirth and adulthood. The data presented in the study can be used to study the culture, ethnography, spiritual and moral characteristics of the Uzbek people and to theoretically enrich such areas as ethnopsychology, ethnopedagogy, gender socialization, sociology of education.

scholarly journals Parkinson’s disease: coping and coexistence

2019 ◽  
Vol 22 (6) ◽  
Author(s):  
Rafaela Vivian Valcarenghi ◽  
Angela Maria Alvarez ◽  
Simony Fabíola Lopes Nunes ◽  
Karina Silveira de Almeida Hammerschimidt ◽  
Maria Fernanda Baeta Neves Alonso da Costa ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Support ◽  
Leisure Activities ◽  
Self Esteem ◽  
Health Condition ◽  
Lifestyle Changes ◽  
Ways Of Coping ◽  
Data Coding ◽  
Depth Interview

Abstract Objective: To know the ways of coping when living with Parkinson’s disease. Method: The methodological framework used was the Grounded Theory. Thirty people diagnosed with Parkinson’s disease registered at the Parkinson Santa Catarina Association, SC, Brazil. participated in the in-depth interview. After the data coding process, five people with the disease validated the findings. Data collection took place between September 2013 to April 2014. Results: The categories that emerged were: Share activities with people with Parkinson’s disease; Have family support; Seek healthy living: activities for self-esteem and quality of life. Discussion: The study highlights the importance of family company in promoting patient stability and self-esteem, where family support helps in coping with the health condition. Conclusion: It was possible to know the ways of coping to live with the disease, especially in sharing experiences with peers; family support, leisure activities, and lifestyle changes; Such characteristics are pertinent to the health care of people with neurodegenerative diseases.

scholarly journals Living with Parkinson’s disease and connected to the duodopa pump: A qualitative study

2021 ◽  
Vol 4 (3) ◽  
Author(s):  
Yolanda María Chacón Gámez ◽  
Nikola Biller-Andorno
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Multimodal Approach ◽  
Structured Interviews ◽  
Advantages And Disadvantages

Parkinson’s Disease (PD) is a complex and heterogeneous disease that has a major impact on the lives of patients and their family caregivers. The duodopa pump is one of the treatments options for advanced PD. The experience of patients with this treatment is largely unexplored, however. This study is based on the experiences of patients with PD as well as their family caregivers using the pump. We take a multimodal approach that includes narrative semi-structured interviews and drawings. This methodology helps participants, particularly those with difficulty articulating themselves, express their experience with the disease and their perception of the treatment. We believe that the use of drawings complementing semi-structured interviews offers additional insights into the participants’ perception of PD and the pump. In this article we focus on the following topics: the participants’ perception of PD and the pump, the reasons for choosing the pump over alternatives, and the advantages and disadvantages of this treatment for patients and family caregivers. Our findings show that the participants consider PD as a complex and unpredictable disease that changed their lives and affect everyone differently, while the pump makes the disease less changeable and more manageable.

scholarly journals Posture Instability of People Diagnosed with Parkinson’s Disease-A Review

2018 ◽  
Vol 7 (3.6) ◽  
pp. 330
Author(s):  
T Ravi ◽  
Rajesh Ranganathan ◽  
A Sivasankar
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Fear Of Falling ◽  
Literature Survey ◽  
Clinical Aspect ◽  
The People ◽  
History Of ◽  
Risk Of Fall

The intent of the paper is to ascertain the reasons behind the posture instability which is being the most disabling feature encountered by the people diseased with Parkinson’s which interns leads to risk of fall thereby increases the fractures with history of falls. In this paper a literature survey has been carried out to look after the recent inventions/aids in the clinical aspect and mechanical aspects for supporting PD patients to walk freely without Fear of Falling(FOF).  

Sign in / Sign up

Export Citation Format

Share Document