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Most patients report physical pain and psychosocial problems (suffering, depression, anxiety) during and after cancer treatment. This mixed methods study, based on the Theory of Social Representations, examines if pain and suffering are taboo subjects for oncologists and patients, and if they share the same representations. The data collected included 33 in-depth interviews with patients in chemotherapy/radiotherapy treatment (n = 20) and their oncologists (n = 13). We measured the number of spontaneous mentions of the words "pain" and "suffering" and their synonyms. We then examined semantic networks related to these two terms. The results show that for patients, suffering refers to bodily degradation and vulnerability while pain confirms the presence of the disease. In the interviews conducted with oncologists, suffering is absent. Pain is perceived as a sign of disease progression and an indicator of tolerance to treatment. These results may help in increasing the mutual understanding between oncologists and patients and facilitating the detection of depression and anxiety. [ABSTRACT FROM AUTHOR]

Despite the senses being a valuable source of knowledge, little research has explored the sensory process of medical experiences. This narrative ethnographic study investigated how the senses shaped parents' experiences of waiting for their child to receive a solid organ, stem cell, or bone marrow transplant. Six parents from four different families primarily participated in sensory interviews as well as observations that explored the question: How do parents experience waiting using the five senses? Our narrative analysis suggested that parents' bodies stored sense memories, and they re-experienced stories of waiting through the senses and 'felt realities'. In addition, the senses transported families back to the emotional experience of waiting, which highlighted the longevity of waiting after receiving a transplant. We discuss how the senses provide important information about the body, waiting experiences, and the environmental contexts that mediate waiting. Findings contribute to theoretical and methodological work exploring how bodies are implicated in producing narratives. [ABSTRACT FROM AUTHOR]

Alongside increasing rates of dementia diagnoses worldwide, efforts to seek alternative end-of-life options also increase. While the concept of assisted dying remains controversial, the discussion around its provision for people with dementia raises even more sensitivity. In this study, we explored how the practice of assisted dying for people with dementia is conceptualized and understood using the shared narratives of online contributors. An observational netnography over 20 months was carried out within five open Facebook communities. Thematic analysis was conducted on 1,007 online comments about assisted dying and dementia. Results reflected four central themes and five subthemes: understanding dementia; understanding assisted dying laws; caregivers' feelings; and moral/personal dilemmas. Findings reveal that the majority of communities' contributors fear developing dementia. They support the provision of advance euthanasia directives—written by competent patients—to prevent unnecessary suffering, and protect patients' wishes and freedom of choice when decision-making competency is lost. [ABSTRACT FROM AUTHOR]

Depression manifests in distinct ways across the life course. Recent research emphasizes how depression impedes development during emerging adulthood. However, our study—based on 40 interviews with emerging adults from multiple regions in the United States, analyzed following grounded theory—suggests a more complex narrative. Increasing experience with cycles of depression can also catalyze (a) mature perspectives and coping mechanisms that protect against depression's lowest lows; (b) deeper self-knowledge and direction, which in turn promoted a coherent personal identity; and (c) emergence of a life purpose, which fostered attainment of adult roles, skill development, greater life satisfaction, and enriched identity. Our synthesis reveals how depression during emerging adulthood can function at once as toxin, potential antidote, and nutritional supplement fostering healthy development. Our central finding that young adults adapt to rather than recover from depression can also enrich resilience theory, and inform both social discourse and clinical practice. [ABSTRACT FROM AUTHOR]

Women are overrepresented in pain rehabilitation. They seem to be more exposed to comorbidity between mental illness and diseases of the musculoskeletal system than men, implying that besides biopsychosocial factors, gender relations and cultural context should be considered. The aim of the study is to understand the lived experience of women with chronic pain from a caring science and gender perspective. Gadamerian philosophical hermeneutics has been used to analyze interviews from 21 women living with chronic pain in Sweden. The hermeneutical process revealed intertwined experiences of overperformance, loneliness, pain, and exhaustion. Women's experience of an overwhelming life situation and the significance of mutual dependency seem to be central to health and suffering in women with chronic pain. We suggest, contemporary health care to acknowledge women's health and suffering in relation to their life situation and prevailing gender roles. [ABSTRACT FROM AUTHOR]

Research considering the basis for mental health nurses wanting to enable recovery among people who suffer from suicidal behavior is sparse. The aim of this study is to explore and evaluate how a new recovery-oriented caring approach (ROCA) was experienced by a suicidal patient in a context of close relatives and nurses. A single-case study with a qual-quan mixed-method design was chosen. Participants were recruited from a psychiatric clinic in Sweden and consisted of one patient, one close relative to the patient, and three nurses. The results reveal that the ROCA enabled the patient to narrate, bear experiences of hopelessness, and ask for support, rather than view suicide as the only possible solution. ROCA has the potential to support patients, relatives, and nurses to develop a common language, considering the patient's life situation and struggles and to use this as a source for the patient's individual care planning. [ABSTRACT FROM AUTHOR]

Suffering from a contested illness poses a serious threat to one’s identity. We analyzed the rhetorical identity management strategies respondents used when depicting their health problems and lives in the context of observed or suspected indoor air (IA) problems in the workplace. The data consisted of essays collected by the Finnish Literature Society. We used discourse-oriented methods to interpret a variety of language uses in the construction of identity strategies. Six strategies were identified: respondents described themselves as normal and good citizens with strong characters, and as IA sufferers who received acknowledge from others, offered positive meanings to their in-group, and demanded recognition. These identity strategies located on two continua: (a) individual- and collective-level strategies and (b) dissolved and emphasized (sub)category boundaries. The practical conclusion is that professionals should be aware of these complex coping strategies when aiming to interact effectively with people suffering from contested illnesses. [ABSTRACT FROM AUTHOR]

The objective of this study is to identify patterns (components and processes) of reconstruction of suicide survivors. In-depth interviews were conducted with 50 survivors of suicide in Switzerland. Data were analyzed using ATLAS. ti and according to the Grounded Theory principles. Survivors of suicide face four major challenges: dealing with the impact of suicide, searching for meaning, clarifying responsibility, and finding a personal style of reaction and coping. The various ways in which survivors fare through the specific processes of the challenges result in various patterns of reconstruction: the vulnerability, transformation, commitment, and hard blow. The unique characteristics and dynamics of each of them are highlighted. Health care providers would benefit from an approach based on the dynamics of the various patterns of reconstruction in providing appropriate support to survivors of suicide. [ABSTRACT FROM AUTHOR]

Social anxiety disorder typically manifests in young adulthood, but there is an absence of qualitative research on the actual experiences of young adults suffering with this disorder. The aim of the present study was to investigate the lived experiences of 29 Norwegian university students who were seeking professional help for symptoms of social anxiety. We conducted in-depth interviews prior to a clinical trial. The interviews were transcribed and analyzed using a team-based thematic analysis method based on a hermeneutic-phenomenological epistemology. We identified five themes: (a) from being shy to interpreting anxiety as a mental health problem, (b) experiencing emotions as threatening and uncontrollable, (c) encountering loneliness as relationships fall away, (d) hiding the vulnerable self from others, and (e) deciding to face social fears in the future. We relate our findings to existing theory and research, discuss our process of reflexivity, highlight study limitations, and suggest implications for future research. [ABSTRACT FROM AUTHOR]

The prevalence of multiple chronic illnesses is increasing dramatically, especially among those in middle adulthood, yet much prior research has focused on the experience of multiple morbidity among older adults. We examined the online illness narratives (blogs) of 10 men and women aged 36 to 59 to better understand the experience of living with multiple chronic illnesses at midlife. Multiple morbidity presents distinct challenges to those at midlife: (a) diagnosis and management of multiple illnesses, (b) need for information, (c) identity dilemmas and threats to self-image, and (d) stigma and social rejection. Relinquishing the work identity was especially difficult for participants because it threatened to foreshorten middle adulthood and push them prematurely into late adulthood. Participants used their blogs to revise their identities, alleviate isolation, and inform and guide others. [ABSTRACT FROM AUTHOR]

Research on patients’ experiences of wait time for scheduled surgery has centered predominantly on the relative tolerability of perceived wait time and impacts on quality of life. We explored patients’ experiences of time while waiting for three types of surgery with varied wait times—hip or knee replacement, shoulder surgery, and cardiac surgery. Thirty-two patients were recruited by their surgeons. We asked participants about their perceptions of time while waiting in two separate interviews. Using interpretative phenomenological analysis (IPA), we discovered connections between participant suffering, meaningfulness of time, and agency over the waiting period and the lived duration of time experience. Our findings reveal that chronological duration is not necessarily the most relevant consideration in determining the quality of waiting experience. Those findings helped us create a conceptual framework for lived wait time. We suggest that clinicians and policy makers consider the complexity of wait time experience to enhance preoperative patient care. [ABSTRACT FROM PUBLISHER]

As part of a community/university collaborative effort to promote the mental health and well-being of Diné (Navajo) youth, we explored the relevance of addressing historical trauma and current structural stressors, and of building on individual and community strengths through healing and social transformation at multiple levels. Qualitative analyses of 74 ethnographic interviews with 37 Diné youth, parents, and grandparents suggested that a focus on historical trauma as a conceptual frame for behavioral health inequities, understood within the context of resilience and survival, is appropriate. Our findings also highlight the salience of current stressors such as poverty and violence exposure. We explore the fit of an historical trauma healing framework and present implications for intervention and transformation through revitalization of traditional knowledge, culturally based healing practices, intergenerational education, and social change strategies designed to eliminate social inequities. [ABSTRACT FROM PUBLISHER]

Traumatized migrants increasingly burden health care services in industrialized countries. These patients usually suffer from a broad range of physical and psychological symptoms, with assessment and treatment being complicated and often unsatisfactory. A large potential for misunderstandings between clinicians and traumatized individuals is not only because of a language barrier; very little is known about the concepts of illness and treatment expectations in these patients. We performed semistructured interviews with 13 traumatized migrants, focusing on their concepts of illness and expectations concerning medical treatment. An analysis of the recorded and transcribed statements revealed that most participants had no clear or defined expectations concerning appropriate treatment. The patients knew very little about psychotherapy, and usually had negative prejudices. Nevertheless, participants firmly believed that medical treatment would help them and considered their current suffering to be the result of a multitude of stressors impacting their lives over long periods of time. The patients did not identify single traumatic events as the causes of their complaints. The prevailing concepts of illness among traumatized migrants can be characterized as multifactorial and psychosocial. [ABSTRACT FROM PUBLISHER]

In new-paradigm research, empathic witnessing by the researcher might create within the researcher--participant relationship a space for participants to share and transcend their suffering. I explore this theme through the constructionist grounded theory analysis of interviews, fieldnotes, and my self-reflexive commentary from an original study conducted to understand the experiences of suffering and healing among the survivors of an earthquake that occurred in India in 2001. The five categories that emerged--getting overwhelmed while verbalizing suffering, search for the cultural meaning of the research relationship, piecing together of self, reaffirmation of moral status, and continuing bond revalidating the self--provide insights about this theme. Also, my reflections on participants' suffering and healing not only facilitated my healing but also inspired me to expand my boundary of I to feel "oneness" with all forms of nature or existence. The findings and discussion not only enhance understanding of the communications and complexities of the researcher--participant relationship, but indicate the nature of support and education needed if researchers are to be effective witnesses to suffering. [ABSTRACT FROM AUTHOR]

In this grounded, dimensional analysis we describe the experiences of five couples whose infants had equivocal diagnostic test results following positive genetic newborn screens for cystic fibrosis. We analyzed interview data collected at two points during each infant's first year. Uncertainty emerged as the central thematic dimension. Results showed that parents passed through a series of stages similar to the process described in Mishel's Uncertainty in Illness Theory (UIT), thus extending the application of the theory to circumstances in which the very presence of an illness is uncertain. Findings informed a modified version of the UIT comprised of five domains: stimuli frame, degree of uncertainty, opportunity--danger continuum, affective responses, and coping. This model incorporates Morse's conception of suffering. Three contextual domains influenced parents' experiences at various junctures along the uncertainty trajectory: individual characteristics, structure providers, and time. We discuss implications of the model for future research and clinical practice relative to genetic testing. [ABSTRACT FROM AUTHOR]

In this article I apply the concept of positioning to the analysis of 15 initial psychiatric interviews. I argue that through their questions the psychiatrists-in-training impose positions requiring the patients to gaze at themselves and their actual problems from particular perspectives. I point to three such positions: (a) the position of the observing assessor , from which it is expected that the patients will make a detached assessment of themselves or their problems, (b) the position of the informing witness, which requires the patients only to verify the information about themselves, and (c) the marginal one, the position of the experiencing narrator , from which talk about experiences and problems is expected. I explore the roots and consequences of the positions, with particular attention toward objectivization of the patients' experiences in the dominant witness and assessor positions. I conclude with a discussion about the medical model in psychiatry. [ABSTRACT FROM AUTHOR]

In this article we describe the phenomenon of kidney graft failure from the unique perspective of patients. Fifteen patients took part in semistructured interviews. We analyzed interviews using interpretative phenomenological analysis. The content analysis yielded five main emergent themes: life disruption, suffering, meaning making, resistance/acceptance, and social comparison. These results are discussed within the theoretical framework of psychosocial transition put forward by Parkes. A comprehensive description of the experience of kidney graft failure emerging from the patients' perspectives can provide a better understanding of the psychosocial aspects—not only the body aspects—of the phenomenon. It can help health care professionals better address patients' suffering, which is experienced by a person as a whole, and to offer support that promotes adaptation to kidney graft failure. [ABSTRACT FROM AUTHOR]

Perspectives on the concept of personhood and its relationship to health care delivery are considered in the context of the life of an adolescent with multiple disabilities. One phenomenological interview lasting 3 hours illuminated life-long experiences of suffering, healing, and the quest to be treated as human, as perceived by a 16-year-old girl disfigured by multiple cancer treatments. Age-appropriate development is the ground of her existence, whereas the quality of relationships with care providers and the extent to which they demonstrate regard for her value as a person are figural. Health care providers have often failed to interact with her in ways supporting dignity and growth, treating her with "care" that is antithetical to the aims of their professions. The case has relevance for health care education and practice, challenging professionals to examine their views on personhood and self-care agency, and the ways in which those views impact the care they provide. [ABSTRACT FROM AUTHOR]

In this article, I explore the communication in an online self-help group for Norwegian women with breast cancer, aiming to add further knowledge to the question of whether the online context functions as a "liberating realm" for alternative discourses about illness. My analysis is conducted within an action-oriented framework and is based on participant observation of the online communication and qualitative interviews of women who participated in the group. Based on the analysis, I argue that proposals of a replication of dominating offline discourses in online communication are affirmed. More precisely, I argue that a "socially desirable" story about the cancer "hero" was further circulated in this online context, and that experiences of resignation and meaninglessness were not woven into the communication. Offering some reflections on this process, I suggest that it has active and voluntary aspects that need attention in further research. [ABSTRACT FROM AUTHOR]

Suffering is a complex, dynamic experience that overarches life experiences and includes physical, social, spiritual, and emotional domains. The purpose of this grounded theory study was to uncover participants' experiences of nonphysical suffering and what was helpful during this time. Eighteen patients who were chronically ill participated in this grounded theory study. Trust was uncovered as a central issue within nonphysical suffering, whereas meaning was the vehicle that enabled the individual to move within the suffering. Participants acknowledged suffering through the identification of various meanings of a situation within their constructed reality and belief system. During individuals' suffering, time was altered and the experience occurred within an expanded present. The individual created an emotional space apart from the meaning of loss within suffering. Trust included the categories of dynamic experience, losing trust, and dealing to regain trust. Participants identified nurse trustworthiness as important for decreasing energy expenditures associated with suffering. [ABSTRACT FROM AUTHOR]

The retelling of a sexual assault, whether during sexual assault care or law enforcement interviews, or in the process of seeking social support, is an emotionally stressful event, yet there is little research describing the psychological experiences of retelling. In a study of barriers to sexual assault care, 43 survivors recounted 76 assault events during individual interviews. Although assaults occurred from 1 to 15 years prior to the interview, participants demonstrated emotional upset. Using the praxis theory of suffering as a scaffold, the author describes manifestations of enduring and emotional suffering. The separation of enduring from emotional suffering indicates potential usefulness of the praxis theory of suffering in the provision of post-sexual assault care. [ABSTRACT FROM AUTHOR]

Deals with a study which described the facial expressions of enduring and emotional suffering, and their association with verbal narrative. Literature review; Method; Results; Trajectory of suffering; Discussion.

Presents a study that investigated ways to evoke meanings in oral narratives within the context of the phenomenon of suffering. Application of a model for poetic condensation of oral narratives to enhance the evocation of the meaning of suffering; Comparison between examples of narrated texts and condensed narratives; Analysis of the effect of reading poetic condensed narratives of suffering on creating a sense of the suffering phenomenon based on the way suffering is experienced.

Presents a study that examined the lived experience and suffering of breast cancer patients. Review of related nursing and caring literature between 1990 and 2000; Discussion on the experiences from the perspective of suffering; Recommendations for alleviating suffering.

To understand complex human phenomena, it is necessary to triangulate the results of multiple separate projects that use diverse methods. Using the example of suffering, a research program emerging from studies exploring comfort was initiated. A model of enduring and emotional suffering (or releasing) was developed, and, using this model as a scaffold, eight subsequent projects explored the interaction of enduring and emotional suffering in various contexts and with different populations. Although there remains much to learn, the researcher argues that using this programmatic approach to explore new areas is an efficient and effective way to gain understanding of complex human phenomena. [ABSTRACT FROM AUTHOR]

Illness troubles us because it is an occasion of suffering, but research on illness has difficulty conceptualizing suffering--and naturally so because suffering is not a concept but a lived reality that resists articulation. Based on the work o/Dorothy Smith, the author argues that the rhetoric of social science inadvertently increases suffering because it attempts to organize local experience within extralocal categories. He concludes with suggestions for changing research practices. [ABSTRACT FROM AUTHOR]

In this article, the author explores a middle-aged, working-class man's, Jake's, reaction to his life-threatening illnesses and to his impending death. The experiences of illness and dying demand the "thick description" of narrative. Just as the medical model of illness breaks down the person into symptoms and parts, the relational model of illness and death in narrative "puts him back together again" by embedding him in a personal and social history. This article finds that the experience of illness and dying are rooted in the tacit ethos of an individual's family and society. The cultural paradigms of gender and class, religious tradition, and the reaction of others to the dying person shape the individual's response to his approaching death. [ABSTRACT FROM AUTHOR]

The impetus for this article was the author's experience of illness, necessitating 5 months of hospitalization, 7 weeks of which were spent in a coma in an intensive care unit (ICU). The origins and general characteristics of ICUs are noted. A pastiche of illness narrative is constructed to allow for the author's own comment on his experience. The intensive care syndrome (ICS), a permeable category, continuing the aftermath of surgery and the social, psychological, mechanical, and pharmaceutical effects of the unit itself, is discussed. Dreams of affliction, a component of the ICS , are explored; the prior sociological history of the neglect of dreams, an essential universal, is also pointed out. The author's dream forms and their shamanistic parallels are explored. In Foucautdian language, they are considered a product of the fragmentation of the cosmological spirit, whereas the author was a medical object and mechanical appendage. Nursing is in a strategic position to make patients' dream narratives their own as an aid for understanding illness. [ABSTRACT FROM AUTHOR]

Addresses relationships between suffering and the self. Forms of suffering; Theoretical foundation; Suffering as a moral status; Conclusion.

Editorial. Discusses the study of suffering by qualitative researchers. Information on the concept of suffering; Comments on the issue with regard to suffering as a normal human response; Role of nurse comforting in relieving the pain caused by suffering.