Being a close relative of a person with severe, chronic heart failure in palliative advanced home care -- a comfort but also a strain

Within previous research on family care of terminally ill people, studies have only rarely been carried out concerning heart failure care. This study aims to illuminate meanings of being a close relative of a person with severe, chronic heart failure (CHF) in palliative advanced home care (PAHC). Narrative interviews were conducted with three close relatives, tape-recorded, transcribed verbatim and a phenomenological-hermeneutic method was used to interpret the text. Meanings of being a close relative is to follow the life-threatening ups and downs, the person with CHF is going through. This means being on primary call, always on standby to mediate security and pleasure. In the deepest downs it is also to call for the back-up call i.e. the PAHC team, trusting their ability to show up on time to alleviate in the worst downs i.e. ease suffering. This study reveals that to be the close relative that the ill person is dependent on 24 hours a day is both a comfort and a strain.     

Being a family in the midst of living and dying

The aim of this study was to illuminate the way of being a family when one family member is in the midst of living and dying. A family systems frame and a life world perspective were used in interviews with five families. A qualitative analysis inspired by Giorgi revealed dialectic and dynamic processes in constant motion within and between the continua being in affinity-being in loneliness, being in power-being in helplessness, and being in continuity-being in disruption. When families were moving in the direction of being in affinity, power, and continuity, these seemed to be prerequisites for enduring their challenged life situation and for giving them a kind of repose. When the movements were in the opposite direction, existential and emotional suffering were manifested as individual embodied experiences such as depression and anxiety.     

Bereavement related to the death of a close relative. Nursing care

The authors publish a consensus document designed to assist nursing professionals to recognize and work with bereavement related to the death of an intimate family member or friend, inside the conceptual framework for nursing treatment and care. This project exposes bereavement in a fashion similar to that used by "NANDA" for its distinct diagnostic categories: title, definition and distinguishing characteristics. Furthermore, the authors include an evaluation guide which may facilitate making a diagnosis between normal and dysfunctional bereavement; the authors propose objectives and activities which a nurse can perform to help to complete the bereavement process in a healthy and adaptive manner. In order to deal with these situations, a consensus document may be useful; at the same time this can become a professional development aide which includes theoretical knowledge about bereavement, adroitness in relation to helpful measures and which facilitates a conscious awareness by health professionals regarding their own personal attitudes and difficulties in the face of death and bereavement. Adequate nursing care during the first phases of this process, which helps the individual or family to mobilize all their resources, may lead to a better evolution of this process and to a recuperation of the affective loss.     

Emotional involvement with the dying in a coronary care unit

The conflict between professional distance and emotional involvement has been identified as a central problem for nurses in their care of dying patients. While some nurses may attempt to maintain their professional distance, individualised methods of patient care encourage the development of emotional involvement between nurses and their patients. Where such nursing methods are used it is essential that appropriate ways exist of handling the problems which such involvement may cause nurses. In the coronary care unit studied, the organisation of nursing work facilitated close and continuing contact between nurses and their patients, thereby increasing the chance that emotional involvement would develop. The death of a patient was not viewed by the nurses as a 'failure', but there were sometimes difficulties for them arising from their involvement with the patient. This paper describes the handling of death and dying in the unit, and some of the issues surrounding emotional involvement and communication with dying patients.     

The meaning of being a middle-aged close relative of a person who has suffered a stroke, 1 month after discharge from a rehabilitation clinic

The sudden and unexpected impact of stroke may have a stressful affect on close relatives. To illuminate the essential meaning in the lived experience of a middle-aged close relative of a person who has suffered a stroke, narrative interviews were conducted with 10 close relatives of people who had suffered their first stroke where both parties were aged over 18 and under 65. A phenomenological-hermeneutic interpretation of the narratives was then conducted. Three intimately intertwined themes emerged during the analysis: 'being called to mission', 'feeling lost and set adrift' and 'struggling to keep going'. The middle-aged close relatives felt unreflectively duty bound. There was a struggle with suffering and enduring the process of coping with life and overcoming a feeling of helplessness. Life turned out to be a struggle with overwhelming feelings. They felt alienated in a restricted life situation, disconnected from themselves and others, and from a world that supports feelings of being lost and set adrift (i.e. feeling homeless). Strength was found in moments when the situation improved, in being related to oneself and others, and when feelings of normality were regained.     

Being in the situation of a significant other to a person with inoperable lung cancer

Little is known about how significant others experience their own situation when a family member becomes seriously ill. To illuminate the meanings of significant others' experiences of their situation after a family member had been diagnosed with inoperable lung cancer, we analyzed narratives from 12 significant others, using a phenomenological hermeneutic approach. Findings revealed 4 themes: feeling dislocated in life, being in an altered relationship, being in a struggle, and feeling secure. When reflecting on these findings, we considered the transition theories and works of Ricoeur and L?gstrup. The significant others' experiences indicated a transition process because of the changes brought about by the diagnosis of lung cancer and a struggle to endure and overcome difficulties and distress on the way to regaining a smooth functioning life. Furthermore, the diagnosis of lung cancer had altered the relationship toward the next of kin and meant not only feelings of increased closeness but also loss of intimacy and reciprocity. The significant others suffered in this process of transition, and healthcare professionals, who recognize the World Health Organization's definition of palliative care, may consider the findings of this study useful when reflecting on their care of families.     

The experiences of the registered nurse caring for the person dying of cancer in a nursing home

This paper reports on research that set out to identify and describe the experiences of the registered nurse caring for the resident dying of cancer in a nursing home. The research method used was a qualitative single case study involving five registered nurses in one nursing home. Thematic analysis of data from unstructured interviews and reflective journals was used to explicate the nurses' experiences. Four major themes were extracted from the data. These themes were the exclusivity of the relationships, difficulties in the management of pain, the expectations of the registered nurse and the impact of caring. The nurses' experiences were loving, fascinating, compelling and rich. The overarching experience of the nurses came from the relationship they formed with the residents. A crucial finding in this study was that these registered nurses valued the elderly resident and developed meaningful relationships with them. All aspects of the relationships were unique and profound. However, the emotional involvement with the resident, multiple death losses, confrontation of personal losses, limited workplace support such as counselling, potentially places these registered nurses at emotional risk from burnout and complicated bereavement. The implications of these findings for nursing practice, education and research are discussed.     

The experience of being a middle-aged close relative of a person who has suffered a stroke – six months after discharge from a rehabilitation clinic

Scand J Caring Sci; 2010; 24; 116–124
The experience of being a middle‐aged close relative of a person who has suffered a stroke – six months after discharge from a rehabilitation clinic Being a close relative brings with it a large number of consequences, with the life situation changing over time. The aim of this study was to illuminate the experiences of being a middle‐aged close relative of a person who has suffered a stroke 6 months after being discharged from a medical rehabilitation clinic. Narrative interviews were conducted with nine middle‐aged close relatives and analysed using a content analysis with a latent approach. The analysis revealed that being close to someone who had suffered a stroke 6 months after discharge meant; a struggling for control and a renewal of family life in the shadow of suffering and hope. The middle‐aged close relatives began to perceive the changed reality. They were struggling to take on something new, become reconciled and find a balance in their family life. Their ability to work, relief from caring concerns and having support and togetherness with others seemed to be essential for the close relatives in their efforts to manage their life situation and maintain their well‐being. Having reached the ‘halfway point’ in their lives and still with half of their life in front of them created worries. They felt dejected about their changed relationships and roles, experience a sense of loss of shared child responsibilities, a negative impact on their marital relationships and sexual satisfaction. They felt trapped in a caring role and they worried about how to endure in the future. The middle‐aged close relatives’ experiences were of being alone and neglected, in an arduous and complex life situation filled with loss and grief. The findings highlights that health professionals need to see and listen to the close relatives’ experiences of transition in order to provide appropriate support adjusted to their varying needs during a time of renewal.     

The experience of being a middle-aged close relative of a person who has suffered a stroke, 1 year after discharge from a rehabilitation clinic: A qualitative study

Background

Living in close emotional and physical proximity to a person who has suffered a stroke may alter almost every aspect of daily living and will inevitably impact family life. Age seems to be a factor in the experiences of stroke sufferers’ close relatives after the stroke.

Objectives

This study aimed to illuminate the experience of being a middle-aged close relative of a person who has suffered a stroke; 1 year after the stroke sufferer's discharge from a rehabilitation clinic.

Participants

Nine middle-aged close relatives of persons with a confirmed diagnosis of a first-time stroke were consecutively included in the study and interviewed.

Methods

The narrative interviews were audio-taped, transcribed verbatim and analyzed using a thematic content analysis. The study was part of a longitudinal study.

Results

Four themes emerged from the data, intertwined and in conflict with one another. A turning point was reached, and the inevitability of an altered future became self-evident, so much so that the middle-aged close relatives felt forced to accept and become reconciled to a changed way of living, even if feelings of grief from loss were still present. The middle-aged close relatives’ process of coming to awareness and recognition of their own needs was part of a complex interplay of emotions, in which they learned to leave feelings of shame and guilt behind. They experienced movement from self-denial to self-recognition in their search for their own well-being and the recovery of their strength for a functioning family life. Even if they experienced a greater sense of freedom, they still face living life within limits. A significant challenge appears to be the effects of the personality changes among the person with a stroke, and the resulting sense of being an outsider. Relatives struggled with health care providers for visibility and confirmation. Their experiences were ones of standing alone, outside a closing door to the rehabilitation. Their ability to work, the benefits of functioning home care, and support from their family helped them through these challenges.

Conclusion

This study highlights the middle-aged relatives’ realization that they will live an inevitability altered future. Individually, the stroke sufferer's relatives need support in their relationships within the family for emotional confirmation and to help them recognize and verbalize their needs without feeling guilt; gaining these supportive factors may help the relatives to recover their sense of well-being and give strength for a future, properly functioning family life.     

病人关怀与实践课程的效果评价

目的评估“病人关怀与实践课程”结束后学生体验的效果。方法课程活动包括由专业辅导员带领辅导团体进行同理心体验,尔后让学生至附设医院陪伴病人及家属以及陪伴后分享相关经验三部分。参加学生为2005年入学的医学系一年级新生118人。结果学生回馈数据显示,经由课程设计之团体辅导及陪伴病人后,学生更能体验何谓同理心,并能体会到陪伴病人的正向情绪经验。结论学生参加“病人关怀与实践课程”,能使学生在正式接触医学专业之前,更了解如何同理病人、帮助别人,进而提升医学生的人文关怀。     

Patient participation in decision making at the end of life as seen by a close relative

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors' manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients' participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients' opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient's personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process.     

Being recognised as a whole person: A qualitative study of inpatient experience in mental health

Few studies address the many challenges that are faced by staff and patients in the inpatient mental health context. In particular, there is a lack of research that explores first-hand patient experiences in order to establish what treatment practices best assist patient recovery and what are the barriers to these practices. This qualitative study, which utilises a user-involved research framework, collaborates with a co-researcher patient group throughout the study. Fourteen patients, all of whom had been in inpatient treatment for at least three weeks, were recruited to the study. Study participants were interviewed in-depth in the period September 2016 to March 2017. Data underwent a thematic analysis that was inspired by interpretative phenomenological analysis. A core theme of the findings was the importance of being recognised as a whole person, and the patient–professional relationship was regarded as a fundamental factor in fostering recovery, with two underlying themes: (i) a need to have one‘s self-identity recognised and supported, and (ii) an experience of ambivalence between needing closeness and distance. This study suggests ways nurses can give priority to interpersonal interactions and relationships with hospitalised patients over task-oriented duties, highlighting the need for nurses to balance patient competing needs for both closeness and distance.