Mia Berglund

Suffering caused by care—Patients’ experiences from hospital settings

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 ones 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.

Learning turning points - in life with long-term illness - visualized with the help of the life-world philosophy

A long-term illness is an occurrence that changes ones life and generates a need to learn how to live with it. This article is based on an empirical study of interviews on people living with different long-term illnesses. The results have shown that the learning process is a complex phenomenon interwoven with life as a whole. The essential meaning of learning to live with long-term illness concerns a movement toward a change of understanding of access to the world. In this movement, in which everyday lives as well as relationships with oneself and others are affected, a continual renegotiation is needed. Texts from existential/lifeworld philosopher, Heidegger and Gadamer, have been used to get a greater understanding of the empirical results. These texts have been analysed with particular focus on learning turning points and the importance of reflection. The results are highlighted under the following themes: Pursuit of balance—the aim of learning, The tense grip—the resistance to learning, To live more really—the possibilities of the learning, Distancing—the how of the learning, and The tense of the learning—the whole of the learning. In those learning turning points are present. Knowledge from this study has been used to make a didactic model designed to give caregivers a tool to support patients’ learning. The didactic model is called: The challenge to take charge of life with a long-term illness.

Suffering caused by care—elderly patients’ experiences in community care

Background Growing 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. Aim The 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 methods A lifeworld hermeneutical approach was used. Phenomenological interviews and conversations with an open approach were conducted and analysed with a focus on meanings. Findings The 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 caregivers inability to be present, to show their face, and truly meet the patient. Conclusion Suffering 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 patients lifeworld.

The Movement to a New Understanding: A Life-World-Based Study about How People Learn to Live with Long-Term Illness

Objective: The objective of the present study was to analyze and describe the phenomenon of learning to live with long-term illness. Method: The design and implementation of the research was based on a reflective lifeworld approach. The study consisted of interviews with people who live with different types of long-term illness. Results: Learning to live with a long-term illness happens in such a way as to respond to the will to live everyday life. The essential meaning of learning to live with long-term illness is constituted by the following elements: learning to know and live with a stranger, the driving forces of learning, learning methods are a balancing act, making the illness visible, as well as seeking knowledge and understanding. The result of the learning process can be understood as movement to a new understanding that is shown in the way the person with the illness acts and gives herself with the illness more space in life. Conclusion: The results show that genuine learning is something that differs from learning information and that the learning must be supported by the sufferer’s situation for a long period of time at an existential level.

Students’ experiences of learning in relation to didactic strategies during the first year of a nursing programme: a qualitative study

BackgroundIn university undergraduate nursing programmes, didactic strategies that enable students to learn nursing skills, solve problems and develop reflective and critical thinking and practice are needed. The aim of this study was to explore how different didactic strategies support nursing students’ experiences of learning during the first year of a reconstructed nursing curriculum.MethodsThis study employed a qualitative approach. The data were gathered through written narratives that were analysed using qualitative content analysis.ResultsNursing students’ experiences of learning through different didactic strategies, were evident in the text. These perspectives were organised into the following themes: To focus on the patient perspective and paying more attention to others, Learning from discussions and reflections on one’s own learning, Training for the professional role and becoming more courage, and Gaining insights into nursing and increasing one’s self-awareness. The education increased the students’ self-awareness, which helped them to pay greater attention to patients and their relative. During the learning process, the students became more courageous, reflected and discovered their shortcomings.ConclusionStated didactic strategies supported a broad base of knowledge on nursing and the professional role of nurses. Educators are challenged to strengthen meaningful learning in nursing and to facilitate the progression of nursing programmes.

Patients’ experiences of support for learning to live with diabetes to promote health and well-being: A lifeworld phenomenological study

Learning to live with diabetes in such a way that the new conditions will be a normal and natural part of life imposes requirements on the person living with diabetes. Previous studies have shown that there is no clear picture of what and how the learning that would allow persons to incorporate the illness into their everyday life will be supported. The aim of this study is to describe the phenomenon of support for learning to live with diabetes to promote health and well-being, from the patients perspective. Data were collected by interviews with patients living with type 1 or type 2 diabetes. The interviews were analysed using a reflective lifeworld approach. The results show that reflection plays a central role for patients with diabetes in achieving a new understanding of the health process, and awareness of their own responsibility was found to be the key factor for such a reflection. The constituents are responsibility creating curiosity and willpower, openness enabling support, technology verifying bodily feelings, a permissive climate providing for participation and exchanging experiences with others. The study concludes that the challenge for caregivers is to create interactions in an open learning climate that initiates and supports reflection to promote health and well-being.Learning to live with diabetes in such a way that the new conditions will be a normal and natural part of life imposes requirements on the person living with diabetes. Previous studies have shown that there is no clear picture of what and how the learning that would allow persons to incorporate the illness into their everyday life will be supported. The aim of this study is to describe the phenomenon of support for learning to live with diabetes to promote health and well-being, from the patient’s perspective. Data were collected by interviews with patients living with type 1 or type 2 diabetes. The interviews were analysed using a reflective lifeworld approach. The results show that reflection plays a central role for patients with diabetes in achieving a new understanding of the health process, and awareness of their own responsibility was found to be the key factor for such a reflection. The constituents are responsibility creating curiosity and willpower, openness enabling support, technology verifying bodily feelings, a permissive climate providing for participation and exchanging experiences with others. The study concludes that the challenge for caregivers is to create interactions in an open learning climate that initiates and supports reflection to promote health and well-being.

Manoeuvring between anxiety and control: Patients’ experience of learning to live with diabetes: A lifeworld phenomenological study

Research shows that people with diabetes want their lives to proceed as normally as possible, but some patients experience difficulty in reaching their desired goals with treatment. The learning process is a complex phenomenon interwoven into every facet of life. Patients and healthcare providers often have different perspectives in care which gives different expectations on what the patients need to learn and cope with. The aim of this study, therefore, is to describe the experience of learning to live with diabetes. Interviews were conducted with 12 patients afflicted with type 1 or type 2 diabetes. The interviews were then analysed with reference to the reflective lifeworld research approach. The analysis shows that when the afflicted realize that their bodies undergo changes and that blood sugar levels are not always balanced as earlier in life, they can adjust to their new conditions early. The afflicted must take responsibility for balancing their blood sugar levels and incorporating the illness into their lives. Achieving such goals necessitates knowledge. The search for knowledge and sensitivity to changes are constant requirements for people with diabetes. Learning is driven by the tension caused by the need for and dependence on safe blood sugar control, the fear of losing such control, and the fear of future complications. The most important responsibilities for these patients are aspiring to understand their bodies as lived bodies, ensuring safety and security, and acquiring the knowledge essential to making conscious choices.Research shows that people with diabetes want their lives to proceed as normally as possible, but some patients experience difficulty in reaching their desired goals with treatment. The learning process is a complex phenomenon interwoven into every facet of life. Patients and healthcare providers often have different perspectives in care which gives different expectations on what the patients need to learn and cope with. The aim of this study, therefore, is to describe the experience of learning to live with diabetes. Interviews were conducted with 12 patients afflicted with type 1 or type 2 diabetes. The interviews were then analysed with reference to the reflective lifeworld research approach. The analysis shows that when the afflicted realize that their bodies undergo changes and that blood sugar levels are not always balanced as earlier in life, they can adjust to their new conditions early. The afflicted must take responsibility for balancing their blood sugar levels and incorporating the illness into their lives. Achieving such goals necessitates knowledge. The search for knowledge and sensitivity to changes are constant requirements for people with diabetes. Learning is driven by the tension caused by the need for and dependence on safe blood sugar control, the fear of losing such control, and the fear of future complications. The most important responsibilities for these patients are aspiring to understand their bodies as lived bodies, ensuring safety and security, and acquiring the knowledge essential to making conscious choices.

Reflective STRENGTH-Giving Dialogue Developed to Support Older Adults in Learning to Live with Long-Term Pain: A Method and a Study Design

Background: Long-term musculoskeletal pain is a major health problem that significantly impacts quality of life among older adults. Many lack professional guidance and must learn on their own to live with pain. This calls for a holistic method that addresses older adults’ needs in their situations. The developed method has its foundation in the didactic model: “The challenge – to take control of one’s life with long-term illness. Aim: The aim was to describe the method, Reflective STRENGTH-Giving Dialogue, and present a study design where the method is learned and used by health care providers to support older adults in learning to live their lives with long-term pain at home in a way that promotes health, well-being, meaning and strength in life. Methods: The pilot study design consists of an educational program including continuous supervision to health care providers during the accomplishment of dialogues with community dwelling older adults. The key dimensions in Reflective STRENGTH-Giving Dialogue are: Situation: Confront and ascertain the facticity in the current situation; Transition from “one to I” and Take charge in the situation; Reflect upon possibilities and choices; Engagement in fulfilling small and large life projects that gives joy and meaning in life; Get inner strength and courage; Tactful and challenging approach and Holistic perspective. Data will be collected through interviews and questionnaires. Qualitative and quantitative methods (NRS, BPI-SF, GDS, KASAM, MSQ) will be used for analysis. A control-group will be enrolled. Discussion and Relevance of Study: STRENGTH can be used to secure and enhance the quality of personcentered care. The method for dialogues can be a way to holistically and individually guide and support older adults in finding ways to live a meaningful life despite pain and to fulfill their desire to remain at home as long as possible .

Fluctuation between Powerlessness and Sense of Meaning - A Qualitative Study of Health Care Professionals' Experiences of Providing Health Care to Older Adults with Long-Term Musculoskeletal Pain

BackgroundThere is an increasing number of older adults living with long-term musculoskeletal pain and related disabilities. These problems are frequently unrecognized, underreported, and inadequately treated. Since many older adults desire to remain at home for as long as possible, it is important that individualized and holistically tailored care is provided in these settings. However, there is a complexity in providing care in this context. The aim of this study was to describe health care professionals’ experiences of providing health care to older adults living with long-term musculoskeletal pain at home.MethodsThe phenomenon, “To provide health care to older adults living with long-term musculoskeletal pain at home”, was studied using reflective lifeworld research (RLR) which is based on phenomenological epistemology. Ten health care providers (nurse, physiotherapists, and occupational therapists) were interviewed and data was analysed.ResultsThe health care professional’s emotions fluctuated between powerlessness and meaningfulness. Needs, opportunities, understanding and respect had to be balanced in the striving to do good in the provision of health care in differing situations. Caring for older adults with long-term pain required courage to remain in the encounter despite feelings of insecurity and uncertainty about the direction of the dialogue. The essence of caring for older adults with long-term pain consisted of the following constituents: Sense of powerlessness; striving to provide good health care; and understanding and respect.ConclusionsThe findings indicated that the health care professionals strived to do good and to provide health care that was holistic and sensitive to the older adults’ needs. A significant sense of powerlessness in the situation was experienced by the health care professionals. These findings address and support the need to develop methods that can be used to guide health care providers who support older adults in the context of their homes.

The growing research field of patient education and learning: The significance of a Nordic network

The research field of patient learning and patient education is growing due to the high prevalence of people living with lifelong disease and illness. The aim of the present article is to argue for and describe the building of a Nordic Network for Patient Education and Learning. The article describes the Network and the activities, theoretical framework and ongoing research within the Network. If patients’ voices are to be heard within healthcare settings, patient learning and patient education are of the utmost importance. Furthermore, it is essential to share experiences from the research we have conducted and are currently carrying out with nurses in Nordic countries as well as around the world.