The quality of caring relationships (original) (raw)
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Medicine, Health Care and Philosophy, 2006
In Dutch healthcare policy patients are seen as informed, autonomous experts and active decision makers with control over their illness and care. Healthcare professionals are expected to operate as providers of information. The purpose of this article is to argue that the consumerist approach of the patient-professional relationship is not a productive way to envision the patient-professional relationship. We argue that an interpretive/deliberative model is a more productive way to envision this relationship, especially in the care for people with a chronic illness. This is illustrated with a case study. It concerns a study of the experiences of a Multiple Sclerosis (MS) patient and healthcare professionals involved in her care. The presented stories show that the participants did not act in line with the roles and responsibilities embodied in the consumerism rhetoric in Dutch healthcare policy. Expectations of patients and healthcare professionals are better met when care is redefined as mutual endeavour in which the caring abilities of healthcare professionals and the vulnerability of chronically ill patients are taken into account.
Health & Social Care in The Community, 2020
People with amyotrophic lateral sclerosis become dependent on caregivers for daily activities and to perform self-care activities at home. The family caregiver has an important role in the care. The patient decides and controls care but depends on the caregiver to implement self-care behaviours. The quality of caregiver-patient relationships could influence clinical outcomes, as it occurs in other illnesses, so the aim of this study was to investigate the relationship between the Amyotrophic Lateral Sclerosis patients and their family caregiver and how it impacts care, and patient and caregiver outcomes. We interviewed 22 patients/caregivers in a Neuromuscular Clinical Center in the South of Europe, between July and October 2018. A Grounded Theory approach was used, comprising line by line 'initial coding', memos writing, 'focused coding', advanced memos and categories definition. From the interviews three main categories emerged: 'reciprocity', 'loving to care' and 'changing to care' and four secondary categories: 'having support', 'sharing suffering', 'protecting each other' and 'thinking positive'. A stable and calm relationship between patient and caregiver, characterised by reciprocity, mutual help and affection affected patient selfcare provided at home and the caregiver burden. The concept of mutuality seems to describe this relationship, despite the patient's dependence on the caregiver. The relationship with health professionals and educational interventions could influence the quality of the relationship. Further studies are needed to describe the quality of the relationship in this dyad, to investigate the presence of mutuality and how it affects patient and caregiver outcomes.
Unmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study
Palliative & supportive care, 2015
Multiple sclerosis (MS) patients' caregivers are sometimes considered as "hidden patients." How much more this might be true for caregivers of severely affected MS patients has so far been scarcely studied. Palliative care also addressing relatives' needs might therefore be very relevant for these caregivers. However, we do not yet know which unmet needs they have and how these could be met. Our aim was to gain an insight into the subjectively unmet needs of caregivers of severely affected MS patients in Germany. The study employed a qualitative cross-sectional approach for assessing unmet needs. Twelve caregivers of severely affected MS patients were recruited using a convenience sampling approach. Face-to-face interviews were conducted, audiotaped, and transcribed verbatim, followed by qualitative content analysis. Unmet needs were sorted into the following categories: "relationship to physician," "individual support by the healthcare system,"...
BMC health services research, 2024
Background Persons with severe Multiple Sclerosis (PwsMS) face complex needs and daily limitations that make it challenging to receive optimal care. The implementation and coordination of health care, social services, and support in financial affairs can be particularly time consuming and burdensome for both PwsMS and caregivers. Care and case management (CCM) helps ensure optimal individual care as well as care at a higher-level. The goal of the current qualitative study was to determine the experiences of PwsMS, caregivers and health care specialists (HCSs) with the CCM. Methods In the current qualitative sub study, as part of a larger trial, in-depth semi-structured interviews with PwsMS, caregivers and HCSs who had been in contact with the CCM were conducted between 02/2022 and 01/2023. Data was transcribed, pseudonymized, tested for saturation and analyzed using structuring content analysis according to Kuckartz. Sociodemographic and interview characteristics were analyzed descriptively. Results Thirteen PwsMS, 12 caregivers and 10 HCSs completed interviews. Main categories of CCM functions were derived deductively: (1) gatekeeper function, (2) broker function, (3) advocacy function, (4) outlook on CCM in standard care. Subcategories were then derived inductively from the interview material. 852 segments were coded. Participants appreciated the CCM as a continuous and objective contact person, a person of trust (92 codes), a competent source of information and advice (on MS) (68 codes) and comprehensive cross-insurance support (128 codes), relieving and supporting PwsMS, their caregivers and HCSs (67 codes). Conclusions Through the cross-sectoral continuous support in health-related, social, financial and everyday bureaucratic matters, the CCM provides comprehensive and overriding support and relief for PwsMS, caregivers and HCSs. This intervention bears the potential to be fine-tuned and applied to similar complex patient groups.
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...
Journal of medical ethics and history of medicine, 2010
The aim of this article is to describe how Iranian patients and their companions explain their lived experiences with caring relationships in a central teaching hospital in Tehran, Iran. Despite a large number of theoretical articles on this topic, the meaning of caring is still ambiguous, particularly in specific cultures. In Iran, there is not enough qualitative evidence on this topic to indicate what patients actually mean when they refer to caring relationship. This article explores how Iranian patients and their companions perceive and describe caring relationships as an element of patients' rights practice. This is part of a phenomenological research on patients' rights practice in Iran conducted during 2003-2006. Semi-structured interviews were conducted with 16 patients/companions, and van Mannen's approach was used for thematic analysis. The ethics committee of Tehran University of Medical Sciences approved the study. Patient-centered care, compassion, effective...
Ethics of Care and the Experience of Disability: an Interview with
Revista Estudos Feministas, 2021
We met with Eva Feder Kittay in an afternoon of December at a café in New York City where she generously spoke for almost two hours about her work on the Ethics of Care and Disability, and her experience as Sesha's mother. A recently retired Professor of Philosophy from Stony Brook University, in New York, Kittay is a leading figure in feminist philosophy and philosophy of disability and has also made a substantial contribution to the fields of social and political theory and ethics. Along with other feminist theorists such as Joan Tronto and Virginia Held, Kittay was one of the pioneers in proposing an alternative ethical theory centered not on normative, general, universal principles of justice, but on interpersonal relationships, responsiveness to specific needs, and relationships of dependence and interdependence. An Ethics of Care. Her work as a philosopher is intertwined with her trajectory as Sesha's mother and she has built her career in a way that is not common within the discipline of philosophy: writing from one's own personal life. She was also a pioneer in bringing matters of care and disability-with special attention to cognitive disability-into philosophy. In 1999 she published the groundbreaking book Love's Labor: Essays on Women, Equality and Dependency (Eva KITTAY, 1999). In this collection of essays, she presented a feminist critique of John Rawls' theory of justice and formulated an alternative conception of equality that takes into account relationships of care, dependency, and the dependency workers. With that, she argued for the recognition of Care as a primary good. Moreover, she placed dependency, interdependency, and care in the center of the discussions on social justice. She also argues for a better distribution of dependency work, one that is not by gender, race or class, but through skills or inclination which requires the valorization of such labor. Since then, she has published over eighty papers, books and book chapters on issues of dependency, the relational self, the relationship of care and justice, asymmetry of relationships, social justice, politics of care, and disability. Kittay is also a prominent figure on Disability Studies. With a work grounded in an Ethics of Care, she has argued against philosophers and scholars who reduce the moral status of people with cognitive disability. With that, she addresses matters of the dignity of people with cognitive disability, personhood, justice, the role of care and of relationality, and also the guarantee of rights and access to health care for people with disabilities. She co-edited the book Cognitive Disability and its Challenge to Moral