Unmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study (original) (raw)
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BMC Palliative Care, 2014
Background: In Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. This study was aimed at investigating how severely affected MS patients and their health professionals perceive palliative care to determine how to better approach these patients in Germany about this topic. Methods: 15 patients feeling severely affected by MS and 23 health professionals experienced with MS patients (3 social workers, 7 nurses, and 13 physicians) in both in-/outpatient and rural/ urban settings participated in this qualitative study in Germany. Semi-structured interviews (patients, health professionals) and focus groups (health professionals) were conducted, transcribed verbatim and analyzed via qualitative content analysis. Results: MS patients were mostly unfamiliar with the term "palliative care" or were aware of it only in relation to cancer and dying. They did not view it as relevant to themselves. Health professionals predominantly associated palliative care with dying cancer patients, if familiar with it at all. Most physicians doubted its relevance for neurological patients and denied MS as a cause of death. Nevertheless, most felt they already offered their patients sufficient palliative care, or thought that it could not meet MS patients' complex needs. Most nurses and social workers recognized deficits in existing care structures and regarded palliative care as an opportunity for MS patients. Conclusion: MS patients', and health professionals' restricted, death-associated awareness of palliative care leads to discomfort, fear or rejection of this idea. Therefore, a defined concept of palliative care emphasizing opportunities for severely affected MS patients and considering early integration should be spread throughout the German MS community as an additional layer of support for this patient group.
Iranian journal of nursing and midwifery research, 2014
The broad spectrum of problems caused by multiple sclerosis (MS) imposes heavy responsibility to caregivers in caring of their patients. Therefore, they encounter many issues and challenges in this situation. The purpose of this study was to explore the experiences and challenges of MS family caregivers. A qualitative design, based on a thematic analysis approach, was used to reach the study aim. Data were collected and analyzed concurrently through in-depth unstructured interviews, field notes, and observations that were held with 23 participants (14 family caregivers and 9 MS patients) at two referral centers in Ahvaz, Iran. THREE MAJOR THEMES WERE EXTRACTED FROM THE ANALYSIS OF THE TRANSCRIPTS: "emotional exhaustion of caregivers," "uncertain atmosphere of caring," and "insularity care." The first theme consisted of three subthemes: "stressful atmosphere of caring," "conflict and animism," and "continuing distress affecting t...
Caregiver Burden: Meeting the Needs of People who Support the Person with Multiple Sclerosis
International Journal of MS Care, 1999
Reliance on informal arrangements to support the person with multiple sclerosis (MS) is an increasingly common phenomenon. The focus of this Australian-based research is on the impact of the caregiver role, the identification of stressors that might prevent a continuation of the role, and the determination of resources needed by caregivers to continue in this role. Using surveys that were sent through the mail, the views of 34 people who care for an individual with MS were collected in order to identify the caregivers’ views on the impact of their role. The results indicate that caregivers provide between 2 and 10 hours daily of physical, emotional, financial, or informational support to the person with MS. The majority of people who provide support to individuals with MS are married to them; they provide care out of love; and they are overtaxed by day-to-day tasks with reduced physical, emotional, and financial resources. Caregivers requested practical support rather than informati...
2016
Family members of patients are often considered informal primary caregivers, particularly for those living with chronic diseases including multiple sclerosis (MS). Caregivers often report increased burden and stress when caring for individuals with chronic care needs. It is important to explore the caregiver experience in the context of MS. The aim of this study is to describe the experiences of family caregivers caring for individuals with Multiple Sclerosis. A purposive sampling method was utilized. A total of eighteen family member caregivers of patients with multiple sclerosis participated in this study. Data were collected through semi-structured and in-depth interviews conducted in the multiple sclerosis society and hospitals of Tabriz in Iran. Data were analyzed using qualitative content analysis assisted by MAXQDA 10 software. Three main categories emerged from interviews about their caregiving experiences. These include1) emotional reactions; 2) caregiver needs; and 3) care...
The care burden and social support levels of caregivers of patients with multiple sclerosis
Kontakt, 2017
This study aims to identify the relationship between social support, level of disability of patients and burden of care perceived by caregivers of individuals with multiple sclerosis. Methods: This descriptive and cross-sectional study was conducted with family caregivers of patients with multiple sclerosis admitted to the neurology clinic of a university hospital in eastern Turkey. Of the family caregivers of patients with MS, 98 family members participated in the study. The study data were collected using the "Zarit caregiver Burden inventory (ZcBi)", "expanded Disability Status Scale (eDSS)" and "Multidimensional Scale of Perceived Social Support (MSPSS)". Results: The mean burden of care score of the family members was 30.67 ± 15.66, and the mean social support score was found to be 54.88 ± 20.02. A negative significant correlation was found between the mean social support and burden of care scores of caregivers (r =-0.38, p < 0.01). furthermore, a positive correlation between mean burnout scores of caregivers and the loss of ability of the patients was found (r = 0.32, p < 0.01). Conclusion: The burden of care decreases as the social support perceived by the caregivers increases. The burden of caregivers increases with the increasing disability of the patients.
Journal of Palliative Medicine, 2014
Background: The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general. Objective: The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS. Methods: The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients selfreporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis. Results: Unmet needs were identified in the main categories ''support of family and friends,'' ''health care services,'' ''managing everyday life,'' and ''maintaining biographical continuity.'' Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated. Conclusions: To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professionalpatient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support.
The needs of carers of people with multiple sclerosis: a literature review
2009
The needs of carers of people with multiple sclerosis: a literature review People with multiple sclerosis depend heavily upon their families and other informal carers as they receive limited support from health-care professionals or health-care services. Adopting the carer role results in a life-changing experience, which may bring rewards and challenges to the carer. This paper reviews the research addressing the experiences of carers of people with multiple sclerosis published between 2002 and 2007 building upon an earlier review. The literature suggests that carers have needs across various domains and that spouses/partners have particular needs. Much of the evidence has limited generalizibility although the geographical spread of the evidence indicates considerable consistency of need. The review describes ongoing carer needs which require supportive care and provides the basis for the development and testing of carer interventions for use by health-care professionals.
Journal of Contemporary Medical Sciences, 2020
Objectives: The present research aimed to explore factors affecting psychological problems among primary caregivers of individuals with Multiple Sclerosis (PCIMS). Methods: The present qualitative research employed a content analysis approach and was conducted in Isfahan, Iran in 2018-19. The participants were selected through purposive sampling method. Semi-structured interviews were conducted to explore psychological problems involved in providing care to MS patients and the factors affecting them with 8 patients, 10 caregivers and 3 healthcare providers. Conventional content analysis was used to analyze the data. Results: The acquired data were put in 4 main categories of “isolation and loneliness”, “caregiver’s concerns”, “frustration and hopelessness” and “Disruption in the family foundation”, each with certain sub-categories. Conclusion: The present results can be helpful to manage psychological disorders and the underlying factors of PCIMS. Thus, healthcare providers and poli...
What do multiple sclerosis patients and their caregivers perceive as unmet needs?
BMC Neurology, 2013
Background: Multiple sclerosis (MS) has a major impact on the physical, psychological and social life of patients and their families. The aim of this study was to evaluate the different perceptions of patients and caregivers about management of MS, particularly about the same items, to gather information to ameliorate the care of patients.