Kari Kvigne

FIGHTING BACK—STRUGGLING TO CONTINUE LIFE AND PRESERVE THE SELF FOLLOWING A STROKE

The aim of this longitudinal phenomenological study was to explore how female stroke survivors experienced their life following a stroke and how they managed their altered situation. Twenty-five women suffering first-time stroke were interviewed in depth three times during the first one and a half years after the stroke. Applying the method of Giorgi, we found that there was a lengthy struggle to continue life and preserve the self following the stroke. The struggle was closely related to their deeply rooted identity as mothers, wives, grandmothers, and housewives. The situation of women following a stroke needs particular attention because their needs may conflict with their female caring roles. On the other hand, supporting them in transforming these roles may secure their sense of self and a continued meaningful life.

Promoting psychosocial well-being following a stroke: Developing a theoretically and empirically sound complex intervention

BACKGROUND The psychosocial consequences of stroke are complex and comprehensive and include substantial and longlasting impacts on mood, identity, social relationships, return to work and quality of life. Many studies have explored possible interventions to prevent or treat psychosocial problems, but the results have generally been disappointing. Very few studies have provided adequate theoretical accounts of the mechanisms assumed to contribute to positive outcomes. OBJECTIVES To describe the development of a psychosocial nursing intervention aimed at promoting psychosocial health and well-being and to stimulate dialogue about how to develop and report theoretically and empirically sound complex interventions in nursing. DESIGN A systematic, stepwise approach was used, consistent with the framework recommended for developing and evaluating complex interventions by the UK Medical Research Council. DATA SOURCES Systematic reviews of empirical studies regarding the psychosocial consequences and needs of patients following stroke; qualitative, experiential studies of stroke and stroke recovery; theories of psychosocial well-being, coping, life skills, narrative approaches to rehabilitation and guided self-determination. REVIEW METHODS Each systematic review was examined to determine the major psychosocial challenges and needs experienced by stroke survivors, focusing on how these challenges and needs developed over the illness trajectory, how previous interventions had sought to address them and the effective mechanisms assumed to affect the level of success of interventions. Qualitative studies were examined to reveal the subjective experiences of stroke and stroke recovery, paying particular attention to the development of needs across time and context. A qualitative synthesis of the major characteristics of the trajectory of stroke rehabilitation and recovery during the first year was developed. Theories were examined to illuminate possible effective mechanisms and actions aimed at promoting psychosocial well-being during the stroke recovery process. RESULTS A dialogue-based intervention comprising eight encounters between stroke survivors and trained health care workers was designed, based on narrative theories, empowerment philosophy and guided self determination. Worksheets and a guiding topical outline were developed to support the dialogue. CONCLUSIONS The UK Medical Research Council framework facilitated the systematic development of an empirically and theoretically informed complex nursing intervention aimed at promoting post-stroke psychosocial well-being.

The Aphasic Storyteller Coconstructing Stories to Promote Psychosocial Well-Being After Stroke

Telling stories is essential to the continuous process of creating meaning and to self-understanding. Persons with aphasia are vulnerable to psychosocial problems by their limited ability to talk and interact with others. This single-case study illustrates how a young woman with aphasia and a trained nurse interacted to coconstruct stories within the context of a longitudinal clinical intervention aimed at promoting psychosocial well-being in the first year after a stroke. Data were collected through qualitative interviews and participant observation; they were then analyzed from a hermeneutic-phenomenological perspective. The experience of coconstructing stories made an important contribution to improving the participant’s psychological well-being. The shared construction of the participant’s story evolved as a cumulative process, and it was facilitated by the establishment of trust in the participant–nurse relationship, the systematic use of worksheets and supported conversations, and a specific focus on psychosocial topics and structural organization.

The power of consoling presence - hospice nurses’ lived experience with spiritual and existential care for the dying

BackgroundBeing with dying people is an integral part of nursing, yet many nurses feel unprepared to accompany people through the process of dying, reporting a lack of skills in psychosocial and spiritual care, resulting in high levels of moral distress, grief and burnout. The aim of this study is to describe the meaning of hospice nurses’ lived experience with alleviating dying patients’ spiritual and existential suffering.MethodsThis is a qualitative study.Hospice nurses were interviewed individually and asked to narrate about their experiences with giving spiritual and existential care to terminally ill hospice patients. Data analysis was conducted using phenomenological hermeneutical method.ResultsThe key spiritual and existential care themes identified, were sensing existential and spiritual distress, tuning inn and opening up, sensing the atmosphere in the room, being moved and touched, and consoling through silence, conversation and religious consolation.ConclusionsConsoling existential and spiritual distress is a deeply personal and relational practice. Nurses have a potential to alleviate existential and spiritual suffering through consoling presence. By connecting deeply with patients and their families, nurses have the possibility to affirm the patients’ strength and facilitate their courage to live a meaningful life and die a dignified death.

Psychosocial Well-Being in Persons with Aphasia Participating in a Nursing Intervention after Stroke

The psychosocial adjustment process after stroke is complicated and protracted. The language is the most important tool for making sense of experiences and for human interplay, making persons with aphasia especially prone to psychosocial problems. Persons with aphasia are systematically excluded from research projects due to methodological challenges. This study explored how seven persons with aphasia experienced participating in a complex nursing intervention aimed at supporting the psychosocial adjustment process and promoting psychosocial well-being. The intervention was organized as an individual, dialogue-based collaboration process based upon ideas from “Guided self-determination.” The content addressed psychosocial issues as mood, social relationships, meaningful activities, identity, and body changes. Principles from “Supported conversation for adults with aphasia” were used to facilitate the conversations. The data were obtained by participant observation during the intervention, qualitative interviews 2 weeks, 6 months, and 12 months after the intervention and by standardized clinical instruments prior to the intervention and at 2 weeks and 12 months after the intervention. Assistance in narrating about themselves and their experiences with illness, psychological support and motivation to move on during the difficult adjustment process, and exchange of knowledge and information were experienced as beneficial and important by the participants in this study.

The challenge of consolation: nurses’ experiences with spiritual and existential care for the dying-a phenomenological hermeneutical study

BackgroundA majority of people in Western Europe and the USA die in hospitals. Spiritual and existential care is seen to be an integral component of holistic, compassionate and comprehensive palliative care. Yet, several studies show that many nurses are anxious and uncertain about engaging in spiritual and existential care for the dying. The aim of this study is to describe nurses’ experiences with spiritual and existential care for dying patients in a general hospital.MethodsIndividual narrative interviews were conducted with nurses in a medical and oncological ward. Data were analyzed using a phenomenological hermeneutical method.ResultsThe nurses felt that it was challenging to uncover dying patients’ spiritual and existential suffering, because it usually emerged as elusive entanglements of physical, emotional, relational, spiritual and existential pain. The nurses’ spiritual and existential care interventions were aimed at facilitating a peaceful and harmonious death. The nurses strove to help patients accept dying, settle practical affairs and achieve reconciliation with their past, their loved ones and with God. The nurses experienced that they had been able to convey consolation when they had managed to help patients to find peace and reconciliation in the final stages of dying. This was experienced as rewarding and fulfilling. The nurses experienced that it was emotionally challenging to be unable to relieve dying patients’ spiritual and existential anguish, because it activated feelings of professional helplessness and shortcomings.ConclusionsAlthough spiritual and existential suffering at the end of life cannot be totally alleviated, nurses may ease some of the existential and spiritual loneliness of dying by standing with their patients in their suffering. Further research (qualitative as well as quantitative) is needed to uncover how nurses provide spiritual and existential care for dying patients in everyday practice. Such research is an important and valuable knowledge supplement to theoretical studies in this field.

Promoting psychosocial wellbeing following stroke using narratives and guided self-determination: a feasibility study

BackgroundExtensive studies have documented the complex and comprehensive psychosocial consequences of stroke. Psychosocial difficulties significantly affect long-term functioning and quality of life. Many studies have explored psychosocial interventions to prevent or treat psychosocial problems, but most have found modest effects. This study evaluated, from the perspective of adult stroke survivors, (1) the content, structure and process and (2) experienced usefulness of a dialogue-based psychosocial nursing intervention in primary care aimed at promoting psychosocial health and wellbeing.MethodsThis was part of a feasibility study guided by the UK MRC complex interventions framework. It consisted of dialogue-based encounters with trained health professionals during approximately the first year poststroke. It was tested in two formats; individual or group encounters. Inclusion criteria were: Acute stroke, above 18 y.o., sufficient physical and cognitive functioning to participate. Data were collected immediately before, during and 14 days after the completion of the intervention. Pre- and post-data included medical and demographic data, quality of life, emotional wellbeing, life satisfaction, anxiety and depression. Qualitative interviews focusing on participant experiences were conducted two weeks following the intervention. Log notes taken by the health professionals conducting the intervention and work sheets filled in by participants also comprised data. Data analysis was case-oriented. The structured instruments were analysed regarding completeness of data and indication of changes in outcome variables. The qualitative interviews, log notes and work sheets were analysed using thematic content analysis.ResultsTwenty-five stroke survivors (17 men, 8 women), median age 64 (range 33–89), participated. Physical limitations varied from mild to severe. Seven participants had moderate to severe expressive aphasia. The participants found the content and process of the intervention relevant. Both the individual and group formats were found useful. Patients with aphasia reported that there were too few encounters (eight encounters were originally planned). The participants underscored the benefits of being supported through a difficult time, having a chance to tell and (re)create their story and being supported in their attempts to cope with the situation.ConclusionsThis study provides initial support for the usefulness of the psychosocial intervention and highlights areas requiring further consideration and development.Trial registration numberClinicalTrials.gov Identifier: NCT01912014

A mobile hospice nurse teaching team’s experience: training care workers in spiritual and existential care for the dying - a qualitative study

BackgroundNursing home and home care nursing staff must increasingly deal with palliative care challenges, due to cost cutting in specialized health care. Research indicates that a significant number of dying patients long for adequate spiritual and existential care. Several studies show that this is often a source of anxiety for care workers. Teaching care workers to alleviate dying patients’ spiritual and existential suffering is therefore important. The aim of this study is to illuminate a pioneering Norwegian mobile hospice nurse teaching team’s experience with teaching and training care workers in spiritual and existential care for the dying in nursing homes and home care settings.MethodsThe team of expert hospice nurses participated in a focus group interview. Data were analyzed using a phenomenological hermeneutical method.ResultsThe mobile teaching team taught care workers to identify spiritual and existential suffering, initiate existential and spiritual conversations and convey consolation through active presencing and silence. The team members transferred their personal spiritual and existential care knowledge through situated “bedside teaching” and reflective dialogues. “The mobile teaching team perceived that the care workers benefitted from the situated teaching because they observed that care workers became more courageous in addressing dying patients’ spiritual and existential suffering.DiscussionEducational research supports these results. Studies show that efficient workplace teaching schemes allowexpert practitioners to teach staff to integrate several different knowledge forms and skills, applying a holisticknowledge approach. One of the features of workplace learning is that expert nurses are able to guide novices through the complexities of practice. Situated learning is therefore central for becoming proficient.ConclusionsSituated bedside teaching provided by expert mobile hospice nurses may be an efficient way to develop care workers’ courage and competency to provide spiritual and existential end-of-life-care. Further research is recommended on the use of mobile expert nurse teaching teams to improve nursing competency in the primary health care sector.

Ambiguous participation in older hospitalized patients: gaining influence through active and passive approaches-a qualitative study.

BackgroundPatient participation is required by law in Norway and in several western countries. Current participation ideology is based on individualism, which may conflict with the older generation’s commonly held values of solidarity and community. Hence, different values and ideologies may come in conflict when older patients receive treatment and rehabilitation in geriatric wards. Participation is a guiding principle in rehabilitation. Criteria for admission of older patients to geriatric wards are complex health problems, acute illness and/or acute physical and/or cognitive functional failure. The ideal is an active and engaged patient. The aim of the study was to describe the difficulties experienced by older patients on acute geriatric wards when involving themselves with their own treatment and care.MethodsIn this qualitative study older patients were interviewed during hospitalization in geriatric wards and asked to tell about their experiences with participation. Data analysis was conducted using a phenomenological hermeneutic method.ResultsThe patients experienced difficulties in participating in decisions and care. They linked their difficulties to their own diminishing capabilities, and cited the ward’s busy schedule as a reason for abstaining from participation. However, despite their reservations, they did participate in decisions in different ways. Their participatory practices appeared ambiguous and they employed various strategies to put themselves in a position of influence. The most important of these involved their relatives. The patients delegated to family the tasks of seeking, receiving and giving information to the nurses and the staff, and, to some extent, for the dialogues with hospital staff about their needs and plan of care. The family appeared to accept the responsibility willingly.ConclusionsThe patients addressed their difficulties by authorizing family members to act and participate on their behalf. This underlines the family’s important role in patient participation and the role that nurses and other staff must play in collaborating with the patient and their family to facilitate participation independently of the patients’ performances of participation.

Residents’ and caregivers’ views on spiritual care and their understanding of spiritual needs in persons with dementia: A meta-synthesis

Aims To synthesize research that investigated how residents and caregivers view spiritual care, come to understand the spiritual needs of people with dementia, and how caregivers provide care congruent with peoples’ needs. Methods and study design Meta-synthesis using Noblit and Hare’s meta-ethnography. A synthesis of eight qualitative, empirical, primary studies that explored spiritual care in the context of dementia care was performed. Findings Spiritual care for persons with dementia was described in the forms of (i) performing religious rituals that provides a sense of comfort and(ii) coming to know the person, which provides opportunities to understand a persons meaning and purpose, and (iii) attending to basic needs provides an opportunity to appreciate others’ vulnerability and humanness. Conclusions Spiritual care intended to help persons with dementia to express their faith and religious beliefs, and help persons with dementia experience meaning in life, connectedness to self, God/deity and other persons.