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PubMedDate not supplied

Measurement of quality of life in HIV disease.

Quality of life is an existential concept with multiple definitions. Clinicians and researchers are concerned with the more specific concept of health-related quality of life (HRQL), which considers the impact of impairments, functional states, perceptions, and social opportunities on overall quality of life. The unique nature of the issues related to living with HIV requires that the HRQL instruments used to evaluate HIV-infected patients include dimensions such as sexual function, stigma, and body image. HIV-specific instruments with established validity and reliability that have provided useful information in clinical trials include the Medical Outcomes Study-HIV Health Survey, HIV/AIDS--Targeted Quality of Life instrument, Functional Assessment of HIV Infection, AIDS Health Assessment Questionnaire, HIV Overview of Problems--Evaluation Systems, and Multidimensional Quality of Life Questionnaire for HIV/AIDS. As treatment advances, maximizing HRQL will become an increasingly important goal for clinicians involved in the care of HIV-infected individuals.

HIV Infections↗
PubMed2006

The phenomenology of meditation for female survivors of intimate partner violence.

An existential-phenomenological methodology was utilized to investigate the experience of meditation for female survivors of intimate partner violence. Six coresearchers were taught a form of concentrative meditation and were asked to meditate daily and to attend a weekly group meditation for 6 weeks. Semistructured interviews were utilized to gather the data. The essence of the experience that was revealed was the emergence of a centered awareness that is distinctly different from the usual mode of being in the world. Findings suggest the value of meditation as an intervention strategy with survivors and demonstrate the need for further research in this area.

Adaptation, Psychological↗
PubMed1999

End-of-life decisions: the policy issue that will not die.

In most jurisdictions, public policy regarding assisted death has not advanced beyond simple prohibition. However, this issue is increasingly likely to reach the policy agenda. Policy-makers may be tempted to turn for guidance to the three places in the world with developed policy or legislation: the Netherlands; the American state of Oregon; and the Northern Territory in Australia. A review of their legislation and relevant guidelines reveals that they rest on four shared assumptions: the neutral assessor status of physicians; the primacy of pain as a validator of requests for assisted death; the need to exclude depression from influencing the decision-making process; and the exclusion of non-clinical existential factors in granting access to assisted death. Recent research in health services raises questions as to the validity of each of these assumptions. This, in turn, has implications for future public policy on assisted death.

Australia↗
PubMed2004

A psychiatrist in cultural transition: personal and professional dilemmas.

This article describes the author's personal and professional dilemmas, encountered as a psychiatrist in the process of migration from Central Europe to New Zealand. The dilemmas include: (i) personal experiences in the stages of migration, (ii) struggles within the author's own multi-ethnic community, (iii) biculturalism, (iv) the unexpected seriousness of psychopathology, and (v) the tendency for overidentification. Professionals in a cultural transition should be aware that personal and professional challenges are interconnected. The concepts of loyalty, relational ethics and existential humanism were valuable in the resolution of these dilemmas.

Cross-Cultural Comparison↗
PubMed2003

The integration of hypnosis into a model of palliative care.

There exists a need for a broad and inclusive model of integration of mind-body interventions for palliative care. Symptoms relating to psychological distress and existential concerns are even more prevalent than pain and other physical symptoms among those with life-limiting conditions. The hypnotic model's purpose is to improve the patient's total psychological, social, and spiritual well-being. A 4-stage model of interventions is offered to assist the clinician in developing and implementing appropriate hypnotherapeutic treatment for noncurative patients. The focus of the hypnotherapy is to ameliorate the effects of pain and dyspnea to restore a level of psychological and physical wellbeing. Within this model of therapy for patients with active, progressive, far-advanced disease and a short life expectancy, the goals of the hypnotic intervention are to provide relief from pain and shortness of breath. Other focuses include assisting the patient with the psychological adjustment to their noncurative and ultimately final state.

Holistic Health↗
PubMed2026

The Meaning and Significance of Breastfeeding for Biological Mothers of Children with Cleft Lip and/or Palate.

INTRODUCTION: Given the functional, emotional, and symbolic challenges imposed by cleft lip and/or palate (CL/P) on exclusive breastfeeding (EBF), mothers often experience early breastfeeding cessation with impacts on maternal identity and the mother-infant bond. This study aimed to explore the meanings, feelings, and experiences of mothers of children with CL/P regarding breastfeeding in the face of these adversities. METHODS: This qualitative study applied the Clinical-Qualitative Method as proposed by Turato. Six in-depth semistructured interviews were conducted with biological mothers of children with CL/P, recruited from a specialized craniofacial reference center in Brazil. Data were analyzed using a qualitative content analysis approach, grounded in psychodynamic concepts from the Medical Psychology theoretical framework. RESULTS: Based on the analysis of the collected material, three analytical categories were identified and constructed: (1) "Existential conflict regarding the inability to fulfill the ideal maternal role"; (2) "Duality between the need and the fear of caregiving"; and (3) "The anguish experienced between tangible and intangible support during breastfeeding."Conclusions:Although the inability to EBF in children with CL/P generates emotional distress, motherhood is reimagined through adaptive forms of care and bonding, highlighting gaps in institutional support and the need for more humanized, emotionally sensitive health practices.

Humans↗
PubMed2005

Ethical challenges in surgery as narrated by practicing surgeons.

BACKGROUND: The aim of this study was to explore the ethical challenges in surgery from the surgeons' point of view and their experience of being in ethically difficult situations. METHODS: Five male and five female surgeons at a university hospital in Norway were interviewed as part of a comprehensive investigation into the narratives of nurses and physicians about being in such situations. The transcribed interview texts were subjected to a phenomenological-hermeneutic interpretation. RESULTS: No differences in ethical reasoning between male and female surgeons were found. They reasoned in both action and relational ethical perspectives. Surgeons focused on their relationships with patients and colleagues and their moral self in descriptions of the ethical challenges in their work. Dialogue and personal involvement were important in their relationships with patients. The surgeons emphasized the importance of open dialogue, professional recognition, and an inclusive and accepting environment between colleagues. CONCLUSION: The surgeons are personally challenged by the existential realities of human life in their relationships with patients. They realized that ethical challenges are an inherent part of performing surgery and of life itself, and say that they have to learn to "live with" these challenges in a way that is confirmed both socially and by their inner moral self. This means accepting their personal and professional limitations, being uncertain, being fallible, and being humble. Living with the ethical challenges of surgery seems to contribute to the surgeons' confidence and vulnerability in their professional identity.

Attitude of Health Personnel↗
PubMed2006

Validation of the Burden Index of Caregivers (BIC), a multidimensional short care burden scale from Japan.

BACKGROUND: We constructed a concise multidimensional care burden scale that reflects circumstances unique to Japan, with a focus on intractable neurological diseases. We surveyed 646 family caregivers of patients with intractable neurological diseases or stroke using 28 preliminary care burden scale items obtained from qualitative research. The results were used to finalize the feeling of care burden scale (BIC: burden index of caregivers), and verify its reliability and validity. METHODS: The survey was conducted among caregivers providing home health care to patients with intractable neurological diseases (PD [Parkinson's disease], SCD [spinocerebellar degeneration], MSA [multiple system atrophy], and ALS [amyotrophic lateral sclerosis]) or CVA (cerebrovascular accident) using a mailed, self-administered questionnaire between November, 2003 and May, 2004. RESULTS: Response rates for neurological and CVA caregivers were 50% and 67%, respectively, or 646 in total (PD, 279; SCD, 78; MSA, 39; ALS, 30; and CVA, 220). Item and exploratory factor analyses led to a reduction to 11 items, comprising 10 items from the 5 domains of time-dependent burden, emotional burden, existential burden, physical burden, and service-related burden; and 1 item on total burden. Examination of validity showed a moderate correlation between each domain of the BIC and the SF-8 (Health related quality of life scale, Short Form-8), while the correlation coefficient of the overall BIC and CES-D was 0.62. Correlation between the BIC and ZBI, a preexisting care burden scale, was high (r = 0.84), while that with the time spent on providing care was 0.47. The ICC (Intraclass correlation coefficient) by test-retest reliability was 0.83, and 0.68 to 0.80 by individual domain. CONCLUSION: These results show that the BIC, a new care burden scale comprising 11 items, is highly reliable and valid.

Aged↗
PubMedDate not supplied

Symptoms experience: a concept analysis.

PURPOSE/OBJECTIVES: To provide a clearly constructed definition of the concept of symptoms experience. DATA SOURCES: Articles and book chapters. DATA SYNTHESIS: Symptoms experience has not been explored previously. Several approaches to the concept of symptoms have been addressed, including symptom occurrence, symptom distress, and unpleasant symptoms. Limitations of these approaches may include the lack of focus on symptoms as occurring concurrently or in clusters or the multiplicative nature of symptoms. In addition, situational and existential meaning often is not explored. CONCLUSIONS: Symptoms experience is the perception of the frequency, intensity, distress, and meaning of symptoms as they are produced and expressed. Symptoms are multiplicative in nature and may act as catalysts for the occurrence of other symptoms. Antecedents to the symptoms experience include demographic, disease, and individual factors. Consequences include the impact on mood state, psychological status, functional status, quality of life, disease progression, and survival. IMPLICATIONS FOR NURSING: Evaluation of symptoms in patients with cancer should include a meaning-centered approach, in which symptoms are evaluated not only for occurrence characteristics and perceived distress but also for the meaning of the symptoms experience to individuals.

Adult↗
PubMed2004

Intrinsic and extrinsic religiosity, spiritual well-being, and attitudes toward spiritual care: a comparison of israeli jewish oncology nurses' scores.

PURPOSE/OBJECTIVES: To examine the differences among secular, traditional, and religious Israeli oncology nurses' intrinsic religiosity, extrinsic religiosity, spiritual well-being, and attitudes toward spiritual care. DESIGN: A comparative, descriptive study. SAMPLE: 148 Israeli Jewish nurses drawn from the membership of the Israeli Oncology Nursing Association. METHODS: Nurses completed mailed questionnaires. The four scales used were intrinsic and extrinsic religiosity portions of the Revised Age Universal Intrinsic-Extrinsic Scale, the Spiritual Well-Being Scale, and the Spiritual Care Perspective Scale. FINDINGS: Secular, traditional, and religious Jewish respondents differed significantly in intrinsic religiosity, extrinsic religiosity, spiritual well-being, and religious well-being. No significant differences were found in existential well-being and attitudes toward spiritual care. Although not significant, an interesting trend was that secular nurses demonstrated more positive attitudes toward spiritual care than religious nurses. CONCLUSIONS: Jewish nurses' religiosity, spiritual well-being, and perhaps their attitudes toward spiritual care may be influenced by whether they are secular, traditional, or religious nurses. IMPLICATIONS FOR NURSING: Israeli Jewish oncology nurses need self-awareness of their intrinsic religiosity, extrinsic religiosity, spiritual well-being, and attitudes toward spiritual care when they are administering holistic care to their patients.

Adult↗
PubMed2000

A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients.

The issue of symptom management at the end of life and the need to use sedation has become a controversial topic. This debate has been intensified by the suggestion that sedation may correlate with 'slow euthanasia'. The need to have more facts and less anecdote was a motivating factor in this multicentre study. Four palliative care programmes in Israel, South Africa, and Spain agreed to participate. The target population was palliative care patients in an inpatient setting. Information was collected on demographics, major symptom distress, and intent and need to use sedatives in the last week of life. Further data on level of consciousness, adequacy of symptom control, and opioids and psychotropic agents used during the final week of life was recorded. As the final week of life can be difficult to predict, treating physicians were asked to complete the data at the time of death. The data available for analysis included 100 patients each from Israel and Madrid, 94 patients from Durban, and 93 patients from Cape Town. More than 90% of patients required medical management for pain, dyspnoea, delirium and/or nausea in the final week of life. The intent to sedate varied from 15% to 36%, with delirium being the most common problem requiring sedation. There were variations in the need to sedate patients for dyspnoea, and existential and family distress. Midazolam was the most common medication prescribed to achieve sedation. The diversity in symptom distress, intent to sedate and use of sedatives, provides further knowledge in characterizing and describing the use of deliberate pharmacological sedation for problematic symptoms at the end of life. The international nature of the patient population studied enhances our understanding of potential differences in definition of symptom issues, variation of clinical practice, and cultural and psychosocial influences.

Aged↗
PubMed2001

Spiritual thoughts, coping and 'sense of coherence' in brain tumour patients and their spouses.

When a person is diagnosed with a life-threatening disease, existential questions are easily triggered. The aims of this study were to explore to what extent brain tumour patients and their next of kin were able to cope, understand and create meaning in their situation, to explore whether spirituality could be supportive and to analyse whether these concepts are related to Antonovsky's concept of sense of coherence. Using a purposive sampling technique, 20 patients and 16 of their next of kin took part in tape-recorded interviews. A content and context analysis was performed using a hermeneutic approach. We found that comprehensibility was to a large extent constructed by the patient's own thoughts and theories, despite an insecure situation. Manageability was achieved by active information-seeking strategies, by social support and by coping, including positive reinterpretation of the situation. Meaningfulness was central for quality of life and was created by close relations and faith, as well as by work. A crucial factor was whether the person had a 'fighting spirit' that motivated him or her to go on. As only three patients were believers, trust in God had generally been replaced by a belief and confidence in oneself, in science, in positive thinking and by closeness to nature. Sense of coherence as a concept can explain how exposed persons handle their situation. In its construction, sence of coherence integrates essential parts of the stress/coping model (comprehensibility, manageability) and of spirituality (meaning).

Adaptation, Psychological↗
PubMed2003

Quality of life in palliative care: principles and practice.

In healthcare, most researchers and clinicians agree that quality of life (QOL) is related to symptoms, functioning, psychological and social wellbeing, and probably to a lesser extent to meaning and fulfillment. This multidimensional health-oriented concept has been named health-related quality of life (HRQOL). However, during end-of-life care spirituality and existential issues become more prominent, as well as family members' perception of quality of care. Outcome measures in palliative care require constructs that reflect the specific goals of palliative care, such as improving QOL before death, symptom control, family support and satisfaction, as well as patients' perceptions of 'purpose' and 'meaning of life'. It is generally recommended that internationally developed and validated patient-rated multidimensional questionnaires should be used when assessing HRQOL in research. However, 'multidimensionality', with often more than 10 possible outcomes, is a threat both to statistical analysis and clinical interpretation of data. Preferentially, a more limited number of outcomes based upon the research question(s) should be defined prior to data collection in the study protocol. The researcher needs to carefully evaluate the content of the questionnaire, in addition to other properties, such as the validity and reliability, before the final decision is made with regards to which instrument to use in a given study.

Anxiety↗
PubMed2005

Voices of the terminally ill: uncovering the meaning of desire for euthanasia.

This study aimed to better understand the meaning of desire for euthanasia. An hermeneutic approach was undertaken using a purposively selected sample of advanced cancer patients who desired euthanasia while receiving palliative care. Unstructured interviews were conducted with six participants, which were audiotaped, transcribed and analysed. This approach allowed in-depth exploration and interpretation of the patients' lived experience. The findings illustrated a timeline from previous wellness to approaching death with five major themes: (1) reality, (2) perception, (3) anticipation, (4) desire and (5) holding environment. The desire for euthanasia is not confined to physical or psychosocial concerns relating to advanced cancer, but incorporates hidden existential yearnings for connectedness, care and respect, understood within the context of the patients' lived experience. Euthanasia requests cannot be taken at face value but require in-depth exploration of their covert meaning, in order to ensure that the patients' needs are being addressed adequately.

Aged↗
PubMed2005

Being a hospice volunteer.

The aim of this study was to obtain an understanding of what it means to be a hospice volunteer in a country without a tradition of hospice or palliative volunteer care services. Ten volunteers from three different hospices in Sweden were interviewed. Their narratives were interpreted with a phenomenological hermeneutic method. Three themes were disclosed: motives for becoming involved in hospices, encountering the hospice and encountering the patient. The interpretations disclose a need for the volunteer to be affirmed as a caring person and received in fellowship at the hospice. Positive encounters with a hospice are closely related to personal growth. Volunteers feel rejected if their need for meaning and for belonging to the hospice is not satisfied. This shows that hospices need to set goals in terms of volunteer support, particularly regarding existential issues following the encounter with the hospice and the patient.

Adult↗
PubMed1998

Quality of life of cancer patients and their spouses in palliative home care.

Incurable ill cancer patients (n = 37) and their spouses, while receiving support from a hospital-based palliative service, were assessed monthly regarding quality of life, using the assessment of quality of life at the end of life instrument. Lowest ratings for patients during the final six weeks were found in the following items: ability to do what one wants, physical strength, global quality of life, and meaningfulness. The pain situation was stable over time. Generally, patients were less anxious than spouses. The least-optimal items at the end of life for the patients' partners were: ability to leave the patients unattended, need for assistance with hygiene/dressing and anxiety. Meaningfulness was the item with the strongest correlation to global quality of life, for both patients and spouses. A more ambitious approach to the existential domain appears to be essential if we wish to optimize quality of life for patients within palliative care.

Activities of Daily Living↗
PubMed2005

Struggling with the fragility of life: a relational-narrative approach to ethics in palliative nursing.

In nursing ethics the role of narratives and dialogue has become more prominent in recent years. The purpose of this article is to illuminate a relational-narrative approach to ethics in the context of palliative nursing. The case study presented concerns a difficult relationship between oncology nurses and a husband whose wife was hospitalized with cancer. The husband's narrative is an expression of depression, social isolation and the loss of hope. He found no meaning in the process of dying and death. The oncology nurses were not able to recognize his emotional and existential problems. A narrative perspective inspired by relational ethics indicates that participants may develop a relational narrative that seeks good for all involved in a situation. In palliative nursing this entails open communication about the fragility of life and approaching death. In relational narratives, answers to these ethical dilemmas are co-authored, contingent and contextual.

Adaptation, Psychological↗
PubMed2006

Cancer patients' perception of being or not being confirmed.

The aim of this study was to obtain in-depth knowledge about caring confirmation of patients with cancer, from the patients' point of view. The research topic was: what is the significance for patients of their being confirmed by nursing personnel? Fifteen men and women between 43 and 80 years of age participated in this study. The method of data collection used was qualitative research interviewing. A hermeneutic approach was used to interpret the data, in which Kvale's self-perception, the 'common sense' level, and theoretical levels were applied. The results are summarized in three areas: an outer confirmation, an inner confirmation, and a lack of the latter. Outer confirmation meant being understood and taken seriously; the maintenance of human dignity and worth indicated inner confirmation. A lack of inner confirmation is primarily manifest in terms of patients' mental, spiritual and existential concerns. In relation to the theory of Eriksson, these patients were confirmed at the level of having and being, but seldom at the level of becoming.

Adaptation, Psychological↗