scholarly journals The Experiences of Family Caregivers in Response to a Dementia Diagnosis Disclosure

2021 ◽  
Author(s):  
Miao-Chuan Chen ◽  
Hung-Ru Lin
Keyword(s):  
Family Caregivers ◽  
Comparative Method ◽  
Medical Attention ◽  
Theory Approach ◽  
Dementia Diagnosis ◽  
Care Needs ◽  
Diagnosis Disclosure ◽  
Care Plans ◽  
Living Well ◽  
Diagnostic Disclosure

Abstract Background: Dementia is a serious disease that can lead to disability because it impacts the individual’s memory, cognition, behavior, and capacity to perform activities of daily living. While most people prefer to receive a full diagnostic disclosure, the actual care requirements of family caregivers, based on their perspectives, are often unknown. The primary aim of this study was to explore the experiences of family caregivers in response to a dementia diagnosis disclosure and analyze the care needs of caregivers.Methods: A qualitative study conducted in accordance with COREQ guidelines. The grounded theory approach was undertaken in 20 family caregivers of patients with dementia, who were selected using purposive sampling. Data were analysed using the constant comparative method.Results: Diagnostic disclosure: Start the long road of care challenges was identified as the core category of this study, which was defined as describing the experiences of family caregivers of patients with dementia after first being informed of the patients’ diagnosis, which activates their willpower to progress against the disease. Five major categories describing the experiences of family caregivers following a dementia diagnosis was developed: ‘deciding to seek medical attention,’ ‘the moment of disclosure,’ ‘conveying information,’ ‘maintaining the patients’ functioning,’ and ‘receiving support and living well with dementia.’ Subcategories within each major category also emerged.Conclusions: Clear diagnostic disclosure is important for ensuring that positive developments can occur in response to disclosure. Healthcare professionals must develop strategies to prevent disclosure from triggering overreactive emotions from patients with cognitive impairments, assist them in understanding their illness in a tactful manner, and ensure that they understand how to cooperate in any subsequent care plans.

scholarly journals The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

2019 ◽  
Vol 33 (6) ◽  
pp. 676-684 ◽  
Author(s):  
Martina Sinta Kristanti ◽  
Christantie Effendy ◽  
Adi Utarini ◽  
Myrra Vernooij-Dassen ◽  
Yvonne Engels
Keyword(s):  
Grounded Theory ◽  
Family Caregivers ◽  
Comparative Method ◽  
Asian Country ◽  
Theory Approach ◽  
Patients With Cancer ◽  
The Core ◽  
Constant Comparative Method ◽  
Will Power ◽  
Grounded Theory Approach

Background: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered “normal”: a societal and religious obligation. The values underpinning this might influence families’ perception of it. Aim: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks. Design: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model. Setting/participants: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer. Results: A total of 24 family caregivers participated. “Belief in caregiving” appeared to be the core phenomenon. This reflects the caregivers’ conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified. Conclusion: We developed a model of family caregivers’ experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.

Addressing cancer care needs for Latino adults: A formative qualitative evaluation.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 105-105
Author(s):  
Gladys M. Rodriguez ◽  
Maria Leach ◽  
Jennifer Osorio ◽  
Emily Wood ◽  
Ysabel Duron ◽  
...  
Keyword(s):  
Cancer Diagnosis ◽  
Low Income ◽  
Cancer Care ◽  
Comparative Method ◽  
The United States ◽  
Care Needs ◽  
Community Based ◽  
Care Plans ◽  
Incidence And Mortality ◽  
Latino Adults

105 Background: Cancer remains the number one cause of death among the Latino population despite the decrease in cancer incidence and mortality in the United States. Latino patients experience worse quality of life, more advanced stages of disease, and longer times to definitive diagnosis and treatment initiation. Yet there are few interventions that leverage clinical and community-based approaches to address these disparities. The aim of this formative qualitative study was to explore the specific care needs and barriers encountered by Latino patients to refine a community-based intervention delivered by community health workers (CHWs). Methods: We conducted semi-structured, in-depth, one-on-one qualitative interviews with low-income, Latino adults with a past or current history of cancer and/or their caregivers in a county comprised of 80% Latino populations in California. Interviews were conducted in Spanish, audio-recorded, transcribed and translated. Analysis was based in grounded theory and performed using the constant comparative method. Results: Fourteen interviews were conducted with a total of 18 participants; 9 involved the patient, 4 involved the patient and a designated caregiver, and 1 involved a caregiver only. Four major themes emerged that included: 1) lack of overall understanding of all aspects of cancer including their cancer diagnosis, significance of advance directives, precision medicine, and cancer care plans; 2) severe challenges in communicating cancer care needs and receiving support services due to language barriers; 3) stress and anxiety regarding financial hardships related to job loss and insurance barriers; 4) the need for supportive, bilingual and bicultural personnel to assist in overcoming these challenges. Conclusions: Latino patients with cancer and caregivers described major barriers they encounter after a cancer diagnosis. Participants described important approaches to address these cancer specific needs and reduce cancer disparities among these populations.

The Arabic Origins of English and Indo-European “Definite Articles”: A Radical Linguistic Theory Approach

2016 ◽  
Vol 4 (6) ◽  
pp. 26
Author(s):  
Zaidan Ali Jassem
Keyword(s):  
Comparative Method ◽  
Linguistic Theory ◽  
General Level ◽  
Theory Approach ◽  
Tree Model ◽  
Linguistic Change ◽  
European Languages ◽  
The Family ◽  
Different Types ◽  
Definite Articles

This paper traces the Arabic origins or cognates of the “definite articles” in English and Indo-European languages from a radical linguistic (or lexical root) theory perspective. The data comprises the definite articles in English, German, French, Spanish, Portuguese, Italian, Romanian, Latin, Greek, Macedonian, Russian, Polish, Sanskrit, Hindi, Bengali, Persian, and Arabic. The results clearly indicate that five different types of such articles emerged in the data, all of which have true Arabic cognates with the same or similar forms and meanings, whose differences are due to natural and plausible causes and different routes of linguistic change, especially lexical, semantic, or morphological shift. Therefore, the results support the adequacy of the radical linguistic theory according to which, unlike the Family Tree Model or Comparative Method, Arabic, English, German, French, Latin, Greek, and Sanskrit not only belong to the same language family, renamed Eurabian or Urban family, but also are dialects of the same language, with Arabic being their origin all because only it shares the whole cognates with them all and because it has a huge phonetic, morphological, grammatical, and lexical variety. They also manifest fundamental flaws and grave drawbacks which plague English and Indo-European lexicography for ignoring Arabic as an ultimate ancestor and progenitor not only in the treatment of the topic at hand but in all others in general. On a more general level, they also show that there is a radical language from which all human languages stemmed and which has been preserved almost intact in Arabic, thus being the most conservative and productive language

Protective preparation: a process central to family caregivers of persons with mild cognitive impairment

2017 ◽  
Vol 30 (3) ◽  
pp. 375-384 ◽  
Author(s):  
Ching-Lin Wang ◽  
Li-Min Kuo ◽  
Yi-Chen Chiu ◽  
Hsiu-Li Huang ◽  
Huei-Ling Huang ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiving ◽  
Healthcare Providers ◽  
Theory Approach ◽  
Face To Face ◽  
The Family ◽  
The Impact

ABSTRACTBackground:To develop a theoretical model explaining the longitudinal changes in the caregiving process for family caregivers of persons with mild cognitive impairment (MCI) in Taiwan.Methods:A longitudinal, grounded theory approach using in-depth face-to-face interviews and an open-ended interview guide. We conducted 42 interviews over a two-year period; each participant was interviewed at least once every six months. All participants were interviewed in their home. The participants total of 13 family caregivers of persons with MCI.Results:One core theme emerged: “protective preparation.” This reflected the family caregiving process of preparation for a further decline in cognitive function, and protection from the impact of low self-esteem, accidents, and symptoms of comorbidities for the family member with MCI. Protective preparation contained three components: ambivalent normalization, vigilant preparation, and protective management.Conclusions:Interventions to help family caregivers manage the changes in persons with MCI can reduce caregiver burden. Our findings could provide a knowledge base for use by healthcare providers to develop and implement strategies to reduce caregiver burden for family caregivers of persons with MCI.

The Experience of Occupational Disruption among Student Musicians

2007 ◽  
Vol 22 (4) ◽  
pp. 140-146 ◽  
Author(s):  
Shannon McCready ◽  
Denise Reid
Keyword(s):  
Health Care Providers ◽  
Sense Of Belonging ◽  
Qualitative Data ◽  
Comparative Method ◽  
Theory Approach ◽  
Care Providers ◽  
Constant Comparative Method ◽  
Grounded Theory Approach ◽  
Depth Interviews ◽  
Major Occupation

Student musicians frequently need to take breaks from playing their instruments because of physical playing-related injuries, yet little is known about their experiences with these occupational disruptions. We conducted a qualitative study that explored student musicians' lived experiences with unplanned disruptions stemming from engagement in their major occupation of playing an instrument. In-depth interviews with seven student musicians who attended either a special arts high school or a university were conducted. Consistent with a grounded theory approach to qualitative research, the constant comparative method of qualitative data analysis was implemented. A major finding related to the theme of “being and becoming,” where student musicians expressed a strong sense of belonging to a group of other like musicians who they learned from, relied on for support, and created music with. Another theme was motivation to excel, where students expressed a strong desire and motivation to improve and master their instrument. Occupational tensions and pressures emerged as another theme. Students were aware of the need to practice and the need to care for their bodies. A constant negotiation was required in which students struggled to find a good balance between the need to practice and to respect their bodies while maintaining an identity of a musician. These findings are discussed in relation to how health care providers and educators need to understand the demands and stresses associated with playing an instrument so that they can better support these young musicians.

A scoping review to inform care coordination strategies for youth with traumatic brain injuries: Care coordination tools

2021 ◽  
pp. 205343452110706
Author(s):  
Brandy Shook ◽  
Cara Palusak ◽  
Susan C Davies ◽  
Jennifer P Lundine
Keyword(s):  
Scoping Review ◽  
Care Coordination ◽  
Brain Injuries ◽  
Unmet Needs ◽  
Chronic Health Condition ◽  
Service Access ◽  
Care Needs ◽  
Term Care ◽  
Care Plans

Introduction & importance Children with traumatic brain injury (TBI) report unmet needs several years after their injury and may require long-term care. However, this chronic health condition is often only treated and monitored in the short-term. Care for young persons with TBI often relies on parents to manage their child's complex care network. Effective care coordination can close these gaps and facilitate continuity of care for children with TBI. The purpose of this scoping review was to develop a better understanding of tools that improve care coordination for Children with Special Health Care Needs (CSHCN). This, in turn, can inform care for children with TBI. Methods A scoping review was conducted following the PRISMA framework and methodology. OVID/Medline, CINAHL, PsycINFO, EMBASE, and ERIC databases were searched for articles relevant to care coordination tools used with CSHCN. Results 21 articles met the criteria for inclusion in the review, and 6 major categories of care coordination tools were identified: telehealth, online health records and tools, care plans, inpatient discharge protocols, family training, and reminders. Discussion Studies examining telehealth, online tools, care plans, and family training care coordination interventions for CSHCN have shown positive outcomes and would be relevant strategies to improve the care of children with TBI. Future prospective research should investigate these tools to explore whether they might improve communication, reduce unmet needs, increase service access, and improve long-term outcomes for children with TBI.

The importance of dignity and choice for people assessed as having intellectual disabilities

2020 ◽  
pp. 174462952090520
Author(s):  
Savra Anne Frounfelker ◽  
Anne Bartone
Keyword(s):  
New York ◽  
Day Treatment ◽  
Comparative Method ◽  
Theory Approach ◽  
Group Settings ◽  
Self Confidence ◽  
Constant Comparative Method ◽  
Day Habilitation ◽  
Grounded Theory Approach

Individuals assessed as having an intellectual disability often spend a significant amount of time in day treatment/day habilitation programs after they graduate from school. The quality of these programs varies widely and is not federally legislated. The purpose of the current study is both to explore factors that lead to higher satisfaction for participants in these programs and to better understand what participants want in a program. Using a grounded theory approach, researchers interviewed 25 participants, staff, and family members in focus group settings to collect qualitative data. Interviews focused on what worked and what could be improved at a program located in Western New York. Using the constant comparative method, themes emerged from the data that pointed to the importance of dignity and choice in a day program to facilitate empowerment, higher levels of satisfaction and self-confidence.

Sign in / Sign up

Export Citation Format

Share Document