Measuring patients' health and suffering - the first stages of instrument development.

BACKGROUND: Patients have reported unanticipated and transformative health changes in existential character after integrative healthcare rehabilitation. Although there are several instruments measuring patients' experiences of health, identified instruments do not sufficiently capture patients' experiences of health and suffering after integrative health care. From a caring science perspective, health and suffering are understood as an integral part of human life. The objective of this study was to develop a first version of an instrument to measure patients' experiences of health and suffering, focusing on existential signs. METHODS: This Swedish study used a methodological design with three iterative phases for instrument development. Firstly, an item pool was developed based on qualitative patient interviews (n = 64). Subsequently, the relevance of the items was explored in two rounds of cognitive patient interviews (n = 5 and n = 3). Finally, expert consultations (n = 5) were used to further refine the instrument. The construct of the instrument, its dimensions and domains emerged through the iterative development process. RESULTS: The first phase development of the instrument resulted in two inter-related overarching dimensions: existential signs of 'Health' and 'Suffering', characterised by five domains: 'Life passion and energy', 'Personal freedom', 'Relationships', 'Presence in life' and 'Meaning'. Instrument items were formulated using contemporary language and word pairs to reflect a movement and relation between health and suffering. The cognitive interviews and expert opinions helped refine items and domains. CONCLUSIONS: The dimensions, domains and items of the instrument 'Existential signs of health and suffering' are well represented in caring science theories. Further clinical implementation and evaluation of the instrument, including psychometric properties, will allow for greater diversity in terms of context generalisability and patient characteristics. The instrument is anticipated to be of value for evaluations in research, development of healthcare practice and theory development in caring science.

Practitioners' use of shared concepts in anthroposophic pain rehabilitation.

PURPOSE: To elucidate the meaning of anthroposophic practitioners' conceptualizations of caring for persons living with chronic pain. METHODS: Interviews were conducted with 15 practitioners working with rehabilitation of persons with chronic pain at an anthroposophic hospital in Sweden. The interviews were analyzed using a phenomenological hermeneutical method. FINDINGS: When practitioners discussed patient care, they used a shared language with particular concepts. Concepts, such as "trauma," "self," and "life intention," were interpreted as a means of understanding persons with pain and their current life situation. The meaning of the concepts also had explicit or implicit implications for the caring process, e.g., the concept "caring shelter" referred to an inherent and continuous part of the caring culture enabling patients' own exploration of their life and suffering and the meaning of their pain in the context of their lives. CONCLUSIONS: The practitioners' use of a conceptual language is here interpreted as a sign of a shared "caring culture" that enabled them to understand patients and their suffering from an existential perspective. A reciprocal understanding within a caring culture may extend the abilities of practitioners to engage in a dialog with patients about life and health as intertwined with the phenomenon of pain. Implications for rehabilitation In the rehabilitation process, health practitioners' language may contribute to shaping a caring culture that emphasis an understanding of patients' needs of health. Shared concepts in rehabilitation might increase health practitioners' possibilities to support patients from broader and more personalized perspectives, involving not only biopsychosocial aspects but also existential dimensions. The shared conceptual understanding of anthroposophic practitioners in this study may serve as an example to practitioners in other pain rehabilitation settings, developing a contextual understanding of their central concepts, and caring values.

Caring touch as a bodily anchor for patients after sustaining a motor vehicle accident with minor or no physical injuries - a mixed methods study.

BACKGROUND: Patients who sustain a motor vehicle accident may experience long-term distress, even if they are uninjured or only slightly injured. There is a risk of neglecting patients with minor or no physical injuries, which might impact future health problems. The aim of this study was to explore patients' subjective experiences and perspectives on pain and other factors of importance after an early nursing intervention consisting of "caring touch" (tactile massage and healing touch) for patients subjected to a motor vehicle accident with minor or no physical injuries. METHODS: A mixed method approach was used. The qualitative outcomes were themes derived from individual interviews. The quantitative outcomes were measured by visual analogue scale for pain (VAS, 0-100), sense of coherence (SOC), post-traumatic stress (IES-R) and health status (EQ-5D index and EQ-5D self-rated health). Forty-one patients of in total 124 eligible patients accepted the invitation to participate in the study. Twenty-seven patients completed follow-up after 6 months whereby they had received up to eight treatments with either tactile massage or healing touch. RESULTS: Patients reported that caring touch may assist in trauma recovery by functioning as a physical "anchor" on the patient's way of suffering, facilitating the transition of patients from feeling as though their body is "turned off" to becoming "awake". By caring touch the patients enjoyed a compassionate care and experience moments of pain alleviation. The VAS pain ratings significantly decreased both immediately after the caring touch treatment sessions and over the follow-up period. The median scores for VAS (p < 0.001) and IES-R (p 0.002) had decreased 6 months after the accident whereas the EQ-5D index had increased (p < 0.001). There were no statistically significant differences of the SOC or EQ-5D self-rated health scores over time. CONCLUSIONS: In the care of patients suffering from a MVA with minor or no physical injuries, a caring touch intervention is associated with patients' report of decreased pain and improved wellbeing up to 6 months after the accident. TRIAL REGISTRATION: ClinicalTrials.gov Id: NCT02610205 . Date 25 November 2015.

Self-care follows from compassionate care - chronic pain patients' experience of integrative rehabilitation.

The long-term outcome of any intervention for people suffering from chronic pain relies on the patient's ability for self-care. This study explores patient experiences of self-care in relation to a rehabilitation programme at an anthroposophic clinic. In a qualitative interview study with a hermeneutic approach, individual interviews were conducted, recorded, transcribed verbatim and analysed. Interviews were conducted with ten women who were taking part in a year-long rehabilitation programme for chronic pain and overlapping illness. The women told stories of suffering with a focus on lives that were not functioning well. In this context, pain is like secondary. For many, the experience of loving care at the clinic became a turning point, a chance to be vulnerable, to be recognised, to reflect and to begin life anew. Signs of self-care could then be witnessed. The women described a process whereby they regained contact with their bodies and their fellow human beings; they were able to identify their needs and when to stand up for them. Everyday life at the clinic is guided by universal aspects of love, life and meanings. The care gives patients glimpses of a move towards community in contrast to past isolation, towards love in contrast to past alienation, and towards joy and inspiration in contrast to past suffering. Through receiving caritative and compassionate care, these women were able to identify their needs as a first step towards self-care. In the context of chronic pain, self-care needs to be more than advice, education and training. Health can be attained when the sufferer experiences what it is to be cared for. This study supports the potential of a caritative caring culture to help patients participate in a compassionate community both with others and with the self. This forms the basis for the reawakening of their natural self-care ability.

Tactile Massage as Part of the Caring Act: A Qualitative Study in Short-Term Emergency Wards.

AIMS AND OBJECTIVES: The aim of this study was to illuminate the nursing staff's lived experiences and meaning in giving tactile massage (TM) while caring for patients in short-term emergency ward. METHOD: Data were collected through individual qualitative interviews with six nurses and eight assistant nurses working with TM in short-term emergency wards in two hospitals in Sweden. The narratives were analyzed using a phenomenological hermeneutical method. FINDINGS: Nurses experienced providing TM to patients as a present awareness in connection with compassion for the patient. TM provided the nurses with a tool to ease patient suffering and pain. Three dimensions were found where touch became a tool of doing, was an aware presence as a mindful being, and was embodied in a human-to-human connection with a changed caregiver. CONCLUSION: Given the current high-tech health care system with overcrowded units and a shortage of nursing staff, TM could be included as a caring tool to improve the caring in caregiving, allowing nurses to act in aware presence by touch to encourage health and well-being for both the patient and themselves.

Caring for children in pediatric intensive care units: an observation study focusing on nurses' concerns.

Children in the pediatric intensive care unit are indisputably in a vulnerable position, dependent on nurses to acknowledge their needs. It is assumed that children should be approached from a holistic perspective in the caring situation to meet their caring needs. The aim of the study was to unfold the meaning of nursing care through nurses' concerns when caring for children in the pediatric intensive care unit. To investigate the qualitative aspects of practice embedded in the caring situation, the interpretive phenomenological approach was adopted for the study. The findings revealed three patterns: medically oriented nursing--here, the nurses attend to just the medical needs, and nursing care is at its minimum, leaving the children's needs unmet; parent-oriented nursing care--here, the nursing care emphasizes the parents' needs in the situation, and the children are viewed as a part of the parent and not as an individual child with specific caring needs; and smooth operating nursing care orientation--here, the nursing care is focused on the child as a whole human being, adding value to the nursing care. The conclusion drawn suggests that nursing care does not always respond to the needs of the child, jeopardizing the well-being of the child and leaving them at risk for experiencing pain and suffering. The concerns present in nursing care has been shown to be the divider of the meaning of nursing care and need to become elucidated in order to improve the cultural influence of what can be seen as good nursing care within the pediatric intensive care unit.

Anthroposophic health care in Sweden - a patient evaluation.

This study surveyed patients and their satisfaction with an integrative anthroposophic hospital. The patients were followed up by questionnaires up to six months after a stay in a Swedish clinic. Satisfaction with the care, life satisfaction, and health-related quality of life were measured for 53 patients, 48 women, 5 men, with cancer, pain diseases, and psychosomatic problems. Sampling was consecutive and due to regional reasons. The evaluation of patients' satisfaction from the anthroposophic clinic (AC) was compared to similar questions of patients using conventional hospital care. The stay lasted 7-21 days and was paid by the patients' county councils. Causes for choosing AC were predominantly a positive attitude towards a holistic health view and expectations on being cared for. Less frequently noted was dissatisfaction with conventional care. Satisfaction with health care given after one month by the AC was sample scored more positively than the highest unit in the conventional clinic. This is important because women in conventional clinic report lower satisfaction. The AC sample consisted of 91% women with an average age of 54 years and a higher level of education compared to the sample from the conventional hospital. Health-related quality of life and life satisfaction was, if not significant, moderately increased during the following six months. The AC initiated a new attitude and change in life habits that stimulated the patients into improving their life style habits and hence their overall health. Still challenging is the gender question. Why do middle-aged, well-educated women experience a need for and a satisfaction in complementary and integrative health care?

Anthroposophic health care--different and home-like.

Anthroposophic health care is rooted in the work of Steiner and Wegman in Switzerland during the 1920s. The Swedish hospital in this study offers integrated conventional and anthroposophic health care therapies which are conceptualized as an extended and integrative variant of health care and not as CAM. In anthroposophic care, health is viewed as a matter of body, soul and spirit in balance. Therapeutic resources include nursing care, therapeutic conduct (art and body therapies) and medicines based on natural remedies. This study aims to deepen the understanding of what constitutes good care from a patient's perspective to alleviate patients' suffering and to identify clinical markers for good care. As anthroposophic care is associated with theory and holistic ideas, this study aims at exploring whether or not anthroposophic care has a beneficial effect. A qualitative method was used, and the analysis was conducted with a phenomenological hermeneutic approach. Sixteen former patients, of whom nine were diagnosed with various kinds of cancer and seven with burnout syndrome, were interviewed regarding their experience of anthroposophic care. Patients especially noted the benefits of the holistic caring environment; the empathetic approach and true caring offered, as well as the peaceful atmosphere and rest. A turning point or shift in perspectives, implying a home coming in relation to inner aspects was discussed as an outcome. Although patients in general were overwhelmingly impressed and positive they were also ambivalent. One interpretation is that there is a gap between the anthroposophic and conventional paradigm that affects patients negatively. As mutual scepticism still prevents any real integration between integrative and conventional care, the onus appears to be on the patient to take the risk and act as bridge-builder. From a caring science perspective, the study shows that appropriation of specific values and theory makes it possible to create a true caring culture.

A pilgrimage on the road to understanding of life in experiences of cancer and burnout syndrome.

The preunderstanding for this study is that progression of a person's suffering can be seen as movement from unbearable to the bearable. This study aims to examine the development of understanding of life in people with cancer and burnout syndrome in relation to nursing care. Our method entailed clinical application research in the design and collection of data, which consisted of qualitative interviews with 16 former patients in conventional and anthroposophic health care; nine with cancer diagnoses and seven with burnout syndrome. The main theme of our findings is 'a pilgrimage on the road to understanding of life'. The pilgrimage is the person's own inner decision to reach new insights and meaning. When suffering from cancer, the struggle is related to threat of death, while persons with burnout syndrome struggle with a threatening nothingness. Walking alone on the pilgrimage without being met in an understanding of life creates increased suffering, while having a companion on the pilgrimage was seen as adding dignity to the suffering human being. The implications for nursing care are that even patients with burnout syndrome need a caring hermeneutic dialogue, where time and space is shared with a caregiver during the pilgrimage.

A Five-year Follow-up of Quality of Life in Women with Breast Cancer in Anthroposophic and Conventional Care.

Complementary and alternative medicine is used by many cancer patients in most parts of the world, and its use is increasing. The aim of the present study was to examine, over 5 years, the perceived quality of life/life satisfaction in two samples of women with breast cancer who were treated with anthroposophic care or conventional medical treatment only. Data from admission, after 1 year and after 5 years are used for the comparisons. On admission to the study the women in anthroposophic care perceived their quality of life to be lower than that of the women in the conventional treatment group, especially for emotional, cognitive and social functioning and overall quality of life. Sixty women who actively chose treatment with anthroposophic medicine and 60 individually matched women treated with conventional medicine participated. Quality of life was measured by the EORTC QLQ-C30 and the Life Satisfaction Questionnaire. Twenty-six women within anthroposophic care and 31 women within conventional medicine survived the 5 years. Effect size (ES) estimation favored the anthroposophic group in seven of the subscales mostly measuring emotional functioning. The ES for four of the subscales favored the conventional treatment group, mostly concerning physical functioning. After 5 years there were improvements in overall quality of life and in emotional and social functioning compared to admission for the women in anthroposophic care. The improvements took place between admission and 1 year, but not further on. Only minor improvements were found in the matching group.

Family suffering related to war experiences: an interpretative synopsis review of the literature from a caring science perspective.

The aim of this study was to conduct a synopsis review of findings from families' experiences related to combat and war events and to interpret these findings from the perspective of theories of suffering. The method used in the study was a synopsis review of 12 articles dealing with family suffering related to war or combat experiences and an interpretation of the articles from a caring science perspective. Findings from the synopsis review were that the dominant part of the articles viewed suffering in general and post-traumatic stress disorders (PTSD) in particular from a medical, psychiatric or psychologically behaviouristic perspective. PTSD and other distress-related conditions were mainly described in terms of their symptoms and dealt with in terms of pathology. The interpretation of the articles from a caring science perspective generated three significant themes: first, interdependence as a spiritual dimension of dependence, secondly, familial communion as sharing moral and spiritual values and thirdly, familial suffering visualized by compassion. The study's conclusion is that, from a caring science perspective, the appearance of family suffering should be comprehended in terms of expressed compassion and that any disturbance within familial communion is likely to have an emotional impact on all of the family members, as a result of their interdependence.

Women's perceptions and beliefs about the genesis of their breast cancer.

A person's belief is seen as a set of assumptions, depending on perceptions, and formed with the influence of experiences and social culture. With the aim of understanding the beliefs about the genesis of their illness, 118 (59 + 59) women with different stages of breast cancer were interviewed. Half of the sample had chosen complementary care in an anthroposophical hospital, and the other half was a matched group. Qualitative content analysis was used. Three themes emerged: (1) belief in a link to life lived (71%), (2) heredity as the sole genesis (4%), and (3) rejection of the question (25%). Under beliefs in a link to life lived, external aspects to the patient's own life (eg, diet and lifestyle) were cited, as well as inner aspects such as psychosocial problems and stress. The findings show that women are well informed about medical facts, although their beliefs reveal a holistic approach. The women's beliefs, where inner psychosocial factors are uppermost, point to a reverse of the causal ranking of medical advisors. The difference between the groups was that the matching sample was more likely to reject the influence of possible causes from life lived. In a caring perspective, women's perceptions of the genesis of their illness are in some cases turned to creative health activities that may increase well-being.

Coping in women with breast cancer in complementary and conventional care over 5 years measured by the mental adjustment to cancer scale.

OBJECTIVE: Many patients with cancer, women more often than men, use complementary and alternative medicine (CAM) and care. Our aim was to examine coping over 5 years (November 1995 to January 1999) in two samples of women with breast cancer who were treated with anthroposophic care or conventional medical treatment. The present study is part of a larger study of the outcome of anthroposophic care for women with breast cancer. DESIGN: A nonrandomized controlled trial design was used with individual matching and repeated measurements on six occasions (at admission, 1 month, 3 months, 6 months, 1 year, and 5 years). The matching was based on the following variables: stage of disease at entry, age, treatment during the 3 months before entering the study, and prognosis. SETTING: An anthroposophic hospital and conventional hospitals in Sweden. SUBJECTS: Sixty (60) women treated with anthroposophic medicine and 60 women from an oncology outpatient department participated. Forty-nine (49) women in anthroposophic care and 51 in the outpatient group survived 1 year; 26 women in anthroposophic care and 31 in the outpatient group survived 5 years. INTERVENTION: An anthroposophic care program. OUTCOME MEASURE: Coping was measured using the Mental Adjustment to Cancer scale. Repeat measures of analysis of variance (ANOVA) were used for within-group comparisons, and effect size (ES) was used for between-group comparisons. RESULTS: The women in anthroposophic care showed more passive and anxious coping on admission, but this decreased over time. In the women in anthroposophic care, there were small ES improvements in fighting spirit and passive, anxious coping at 4 of the measured timepoints compared to admission. CONCLUSION: The choice of anthroposophic care could be seen as a possible way to cope with emotional distress in this group of women with breast cancer.

Suffering related to health care: a study of breast cancer patients' experiences.

A previous study indicated that patient narratives include experiences of suffering caused or increased by health-care encounters. The aim of this study was to interpret and understand the meaning of patients' experiences of suffering related to health care from an ethical, existential and ontological standpoint. Sixteen women with breast cancer in Sweden and Finland took part in qualitative interviews analysed with a hermeneutic, interpretive approach. The outcome showed that suffering related to health care is a complex phenomenon and constitutes an ethical challenge to health-care personnel. The women's experiences of suffering related to health care tended to be of similar seriousness as their experiences of suffering in relation to having cancer. In an ethical, existential and ontological sense, suffering related to health care is basically a matter of neglect and uncaring where the patient's existential suffering is not seen and she is not viewed as a whole human being.

Evaluation of quality of life/life satisfaction in women with breast cancer in complementary and conventional care.

The aim was to study the perceived quality of life/life satisfaction in a sample of women with breast cancer who were treated in a hospital with alternative/complementary care and the same variables in individually matched patients who received only conventional medical treatment. A non-randomized controlled trial design with repeated measurements was used. Sixty women with breast cancer treated with anthroposophic medicine (ABCW) and 60 with conventional medicine (CBCW) were included and 36 matched pairs took part on all occasions. The quality of life was measured by the EORTC QLQ-C30 and the Life Satisfaction Questionnaire (LSQ). The comparisons were calculated as effect sizes (ES). The women in the ABCW group reported small or moderate effects, expressed as ES, on their quality of life/life satisfaction compared to their matched "twins" in the CBCW group at the 1-year follow-up in 15 out of 21 scales/factors. It was concluded that the women who had chosen anthroposophic care increased their perceived quality of life/life satisfaction according to the methodology of the study.