Suffering and well-being are significant aspects of human existence; in particular, suffering and well-being are important aspects of patients’ experiences following diseases. Increased knowledge about existential dimensions of illness and healthcare experiences may be needed in order to improve care and reduce unnecessary suffering. Therefore, the aim of this paper is to illuminate the phenomenon of suffering experienced in relation to healthcare needs among patients in hospital settings in Sweden. In this study, we used a reflective lifeworld approach. The data were analysed with a focus on meanings. The results describe the essential meaning of the phenomenon of suffering in relation to healthcare needs. The patients were suffering during care-giving when they felt distrusted or mistreated and when their perspective on illness and health was overlooked. Suffering was found to arise due to healthcare actions that neglected a holistic and patient-centred approach to care. Unfortunately, healthcare experiences that cause patients to suffer seem to be something one needs to endure without being critical. The phenomenon can be described as having four constituents: to be mistreated; to struggle for one's healthcare needs and autonomy; to feel powerless; and to feel fragmented and objectified. The study concludes that there are problems associated with patients experiencing suffering at the hands of healthcare providers, even if this suffering may not have been caused deliberately to the patient. Consequently, conscious improvements are needed to lessen the suffering caused by care-giving, as are strategies that promote more patient-centred care and patient participation.
The purpose of this study was to investigate the lived experience of dementia for spouses where one of them is diagnosed as having dementia. The study has been conducted using a phenomenological approach. Unstructured interviews were chosen in order to investigate the informants' lived experiences of dementia, both for the person with dementia and for his or her spouse. The essence of the phenomenon, the lived experience of dementia, is that the persons with dementia and their spouses live in a heteronomous existence in which they are lost and are strangers in their own world. The result of this is a life without coherence and a new but unknown meaning that can make them feel uncertain and puts them in a quandary. Whatever those with dementia and their spouses do, they have no real influence over their situation, which leads to feelings of awkwardness, perplexity, and futility.
The number of persons with dementia who lives at home for a longer period of time after diagnosis is increasing. Even if the literature in the dementia field is growing, there is a need for more knowledge about everyday life of persons with a dementia disease; particularly the lived perspective of persons who live alone. The aim of this study was to elucidate the phenomenon of living alone with dementia and having a manifest care need. This phenomenological study was carried out from a reflective lifeworld approach. The data material in the study consisted of field notes from 32 visits and transcriptions from 11 tape-recorded conversations with six participants. The results reveal that the person with dementia who lives alone ends up in a vague existence where they cannot survive alone. The person's level of activity comes to a halt and body movement becomes slower. Daily life becomes more difficult to manage and the person's earlier natural way of relating to the world and the people around them is gradually lost. This is followed by a loneliness and forgetfulness that cloud the meaning of life. This study highlights the importance of the patient's perspective needed to better understand the inner life of a person who suffers from dementia. This understanding is important in the organization of help and care as well as for caregivers to better understand these individuals and their needs.
BackgroundGrowing old involves many changes in life and implies an increased risks of illness and different forms of disabilities. Life may change in a radical way when a person gets a disease like dementia or moves to a nursing home due to disabilities or needs. In both cases, it often leads to an increased dependency on care where the patient becomes exposed and vulnerable and thereby at a higher risk for experiencing different forms of suffering.AimThe aim of this study was to elucidate and gain a deeper understanding of elderly patients’ experiences of suffering in relation to community care in nursing homes and home care services.Materials and methodsA lifeworld hermeneutical approach was used. Phenomenological interviews and conversations with an open approach were conducted and analysed with a focus on meanings.FindingsThe findings were presented in four main themes; an absence of the other in care, an absence of dialogues, a sense of alienation and a sense of insecurity. The findings in this study revealed that persons who were cared for in nursing homes and home care services sometimes were exposed to an unnecessary suffering. The suffering sometimes was caused by various caring actions, that is, unnecessary suffering. The suffering caused by care that aroused was due to caregiver’s inability to be present, to show their face, and truly meet the patient.ConclusionSuffering from care increased the elderly patients’ feelings of insecurity, loneliness, and alienation; this seemed to be the foundation for patients’ experiences of being outside a human community. There was a lack of knowledge and understanding about the patient’s lifeworld.
Growing old entails an increased risk of disabilities and illnesses such as dementia. The orientation in Sweden on national level is that individuals remain in their own homes if desired and receive person-centred home care. The aim of this study was to describe the experience of an educational program and its influence on daily provision of care to persons with dementia. A life-world approach was used. Data were collected through group interviews with care providers in the context of home. The findings are presented in five themes: Increased knowledge about dementia and treatment, Relationship-building in order to provide good care, Open and flexible approach conveys calm, Continuity and flexibility are cornerstones in the care and Perceived improvements. This person-centred educational intervention resulted in a care that was based on each individual's personality, preferences and priorities in life. Education given with continuity over time is key to improving provision of care to person with dementia.
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