The Meaning of the Lived Experience of Lifestyle Changes for People with Severe Mental Illness

The aim of this study was to elucidate the meaning of the lived experience of lifestyle changes as perceived by people with severe mental illness (SMI). People with SMI who have experience in managing lifestyle changes were interviewed (n = 10). The interviews were analyzed with a phenomenological hermeneutic approach. The findings reveal three themes: (1) struggling with inner and outer limitations, (2) on one's own but together with others and (3) longing for living a life in harmony. The meaning of lifestyle changes can be understood as a person's internal and external endeavors to make well-considered decisions about lifestyle changes. Support should focus on strengthening the person's self-efficacy and should be based on the person's experiences.     

Being in transit and in transition The experience of time at the place,when living with severe incurable disease ‐ a phenomenological study

The aim of this study is to describe the experience of time as it presents itself at the place being situated when living with severe incurable disease and receiving palliative care. The empirical data consist of 26 open‐ended interviews with 23 patients receiving palliative care at home, at a palliative day care, in a palliative bed unit in hospital or in a nursing home in Norway. A common meaning of a shifting space for living emerged from the analysis and was revealed through three different aspects: (i) Transition from a predictable to an unpredictable time: To live with severe incurable disease marks a transition to a changed life involving an ongoing weakened and altered body with bothersome symptoms making experience of time different and unpredictable. (ii) Transition between a safe and unsafe time: When time is unpredictable, feeling safe is revealed as essential to how time is experienced at the place being situated. (iii) To be in transition from a homely to a homeless existence: In a time of increased bodily weakness, unpredictable ailments and displacements, the sense of belonging to the place is revealed as significant to the experience of time. Not knowing where to be in a time of change is like an existential cry of distress where the foothold in existence is lost. The findings are discussed and interpreted as an embodied experience originating from the passage of time continually affecting life sometimes so fundamentally that it marks a transition to a changed space of life that is reflected in the experience of time.     

Meanings of being old,living on one's own and suffering from incurable cancer in rural Norway

PurposeThe aim of this study was to explore and understand the lived experience of older people living alone and suffering from incurable cancer in rural Norway.Methods and sampleNarrative interviews were conducted with five older people with incurable cancer (three women and two men, aged 71–79), receiving outpatient and life-prolonging chemotherapy and living alone in their homes in rural areas. A phenomenological hermeneutical approach was used to interpret the meaning of the lived experience.Key resultsFour main themes were found: enduring by keeping hope alive, becoming aware that you are on your own, living up to expectations of being a good patient and being at risk of losing one's identity and value. Enduring this situation means struggling with terminal illness and facing death in a brave manner, and replacing former ways of living. The process of providing treatment may threaten dignity and cause additional distress.ConclusionsThese results show a complex and comprehensive situation where physical symptoms and emotions are interwoven. Further the results describe how the ways of suffering caused by the manner in which care is delivered, suffering related to the cancer disease and existential suffering, may increase each other's impact. The social and rural context calls for special attention as the patients may lack recourses to gain sufficient care. Their comfort depends to a large extent on the health professionals' sensitivity.     

Hospitalized patients experienced suffering in life with incurable cancer

The concept 'suffering' has been central within nursing since Florence Nightingale. But few researchers have made empirical studies about the lived phenomenon. Several researchers within nursing agree that more research concerning individual groups of patients has to be initiated. Within research about patients with incurable cancer focus has been on death, the terminal period and patients experience of being dying. This qualitative study was initiated to describe the characteristics of a group of Danish hospitalized patients' experienced suffering in life with incurable cancer. Twenty-five semi-structured interviews were arranged with 12 patients ones a week within a period of 4 weeks. In week 2 and 4, the interviews were supplemented by questions developed on the basis of the potential signs of suffering which appeared during the participant observations that took place the day before each interview. C. S. Peirce's semiotic and phenomenological grounded theory of signs was used in order to identify the potential signs. A phenomenological methodology developed by A. Giorgi was used to develop and describe the general structure of the phenomenon. The phenomenon is described as: 'The experience of living in an increasingly unpredictable existents at the mercy of the body, the consciousness, the illness, the death, the treatment, the professionals, one's articulateness, the past, the present and the future, influenced by increasing powerlessness, loneliness and isolation, and the experience of existing in an persistent, and with time, unconquerable struggle to maintain and regain control'.     

The social experience of aging with a chronic illness: Perspectives of older adults with multiple sclerosis

Purpose.?The purpose of this study was to explore the social experiences of older adults with multiple sclerosis (MS) in order to recognize the changes in social experience and social needs that may occur with aging with a chronic illness.

Method.?Analysis of qualitative data from an exploratory study utilizing a phenomenological approach with 27 older adults with MS, aged 55 – 81.

Results.?In-depth interviews revealed that the social experience was influenced by groups of factors including the person's social needs, experience of MS, values and expectations, characteristics of the social support system, the response of the support providers, and the accessibility of the social environment. The participants discussed concerns about the future adequacy of support. A process of negotiation was also described and was seen as an opportunity to change the social experience and social support received.

Conclusion.?This study provides an insider's view of the social changes that older adults living with MS experience. This study also identifies barriers to the acquisition of support and addresses the importance of appropriately responding to the changing needs of this population.     

Putting life on hold: lived experiences of people with obesity

Obesity presents challenges in everyday life, one of which involves the existential aspects of living life as a person with obesity. There is a need for understanding the existential experiences, but there is limited in-depth research about these experiences of people with obesity. The aim of this study was to gain deeper insight into the existential experiences of people dealing with obesity. We performed a qualitative study that included in-depth interviews with seven men and 14 women with obesity (body mass index ≥ 35 kg/m²) aged 18–59 years. The study took a phenomenological–hermeneutic approach in which the participants’ own experiences formed the basis for understanding their lifeworld. The lived experiences of people dealing with obesity were characterised by several existential challenges. One overarching theme—Putting life on hold when struggling with obesity—was developed based on three themes: The body as an impediment to living the desired life, to being oneself and to moving on in life. These findings illustrate the complex existential experience of life, body and existence faced by people dealing with obesity. Based on these findings, we discuss whether people with obesity who experience ‘putting life on hold’ are attuned to live their life to the fullest in some areas. Their embodied experiences seem to challenge them to experience the joy of life, to appear as a whole self and to live life in the moment. Reflecting on obesity in the context of life and life phenomena seems to provide deeper insights into the existence of people living with obesity and may help to advance a more comprehensive approach in obesity health care.     

Living with incurable cancer: what are the rehabilitation needs in a palliative setting?

Background: Increasing numbers of people are living with incurable cancers. Symptoms, side effects, and treatment burdens impact on physical functioning, yet little is known about the impact on people’s lives and how best to provide rehabilitation.

Materials and methods: A qualitative study employing a phenomenological approach explored the lived experience of incurable cancer. A purposive sample of six people participated in semi-structured interviews. The data were analysed thematically at a semantic level to identify the functional difficulties experienced by people living with incurable cancer, the meanings of those difficulties, and participants perceived rehabilitation needs.

Results: People living with incurable cancer described cancer-related issues spanning all five domains of the International Classification of Functioning, Disability and Health (ICF). Although highly valued amongst study participants, rehabilitation services were difficult to access, poorly utilised, and referrals were sporadic and consequential; indicative of poor awareness of rehabilitation for people with incurable cancer amongst potential referrers.

Discussion: Participants valued a change in terminology away from “palliative” towards more positive language in line with enhanced supportive care movements. Validated tools such as the Palliative Care Therapy Outcome Measure, which align with the ICF, would allow rehabilitation professionals to demonstrate maintenance or improvement in participation and wellbeing.

• Implications for Rehabilitation

• Incurable cancer leads to a fluctuating multifactorial disability.

• People living with incurable cancer can benefit from rehabilitation input throughout their illness.

• Offering flexible and varied rehabilitation options for people living with incurable cancer will increase physical and emotional well-being, function, and coping.

• Allied health professionals should take and create opportunities to promote rehabilitation for people living with incurable cancer and their services to other potentially referring healthcare professionals to increase understanding of benefits and utilisation of available services for people living with incurable cancer.

     

From isolation and dependence to autonomy – expectations before and experiences after cochlear implantation in adult cochlear implant users and their significant others

Abstract

Purpose: The aim of the study was to examine pre-operative expectations and the post-operative experiences related to cochlear implants (CI) in CI-users and their significant others. Methods: A questionnaire was used and the responses were analysed by means of The Qualitative Content Analysis. All adults implanted between 1992 and 2010, who had had their implants for a minimum of 12 months (n?=?120) were contacted. Response rate was high (90.8%), and all-inclusive answers were received from 101 CI-users (84.2%). Results: The overall sense of increased well-being and life satisfaction was described as having lived in two different worlds, one with the auditory stimulation and one without. In the overall sense of increased well-being and satisfaction three interwoven subcategories, alienation – normality, fear – autonomy, and living a social life emerged. When CI-users and their significant others recalled the time prior to receiving the CI, a sense of fear was present with origins in the concern for the respondents' (CI-users) ability to cope and care independently in society. Conversely, after the implantation both parties emphasized the notion of a distinct transformation within the CI-user towards autonomy. Communication was highlighted as a large part of living social life. Conclusion: The CI increases well-being and satisfaction for both CI-users and their significant others, which is especially evident regarding enhanced autonomy, normality and living social life.

• Implications for Rehabilitation

• Before implantation it is important to discuss the fact that phone calls and listening to music are improvement expectations that might not be met by the CI.

• The perceived life changes affect the lives of both the CI-users and the significant others, a finding important to take into consideration before implantation and during rehabilitation after the implantation.

• Before implantation it is important to inform both CI-recipients and significant others about the length of time required to be able to hear selectively after the implantation and about past experiences of CI-users.

     

Life beyond cancer: women’s experiences 5 years after treatment for gynaecological cancer

Scand J Caring Sci; 2010; 24; 799–807
Life beyond cancer: Women’s experiences 5 years after treatment for gynaecological cancer The number of long‐term survivors after cancer is increasing, mainly as a consequence of more efficient treatment. This creates a need for knowledge about experiences of life after cancer. The aim of this study is to gain a deeper understanding of lived experience of long‐term cancer survivors and how they experienced cancer care. A qualitative study was performed, based on 32 in‐depth interviews with 16 women declared as long‐term survivors, aged 39–66. The first interview was made 5 years after treatment and the second a year later. The study has a phenomenological–hermeneutical approach in which the women’s own experiences are the basis for understanding their life‐world. The long‐term surviving women experienced profound changes in their lives and had to adapt to new ways of living. Three core themes were identified: living with tension between personal growth and fear of recurrence: the women spoke of a deep gratitude for being alive and of basic values that had become revitalized. They also lived with a preparedness for recurrence of cancer. Living in a changed female body: the removal of reproductive organs raised questions about sexual life and difficulties related to menopause. Feeling left alone – not receiving enough information and guidance after treatment: the process of sorting things out, handling anxiety, bodily changes and menopause were described as a lonesome journey, existentially and psycho‐socially. The findings are discussed in relation to Heidegger’s perspective of anxiety towards death, existential loneliness and humans as self‐interpreting beings. Surviving cancer entails living with profound life‐changes, demanding as well as enriching. Existing follow‐up regimes need to sharpen focus on psycho‐social aspects, information and guidance. Additional follow‐up programmes, focusing solely on the individual woman and her specific needs, are necessary.     

Healthcare experiences of patients following faecal output stoma-forming surgery: A qualitative exploration

Background

Approximately 102,000 individuals live with an excretory stoma in the UK. Existing research shows huge variation in how individuals experience living with a new stoma but little is known of the individual experience of contemporary health care from the patient perspective.

Objective

To explore the individual experience of living with a new stoma and interactions with healthcare over time with the purpose of informing health care services.

Design

An existential phenomenological methodology underpinned interviews with twelve people with a new stoma at three, nine and fifteen months post-surgery. Ten healthcare professionals were interviewed on one occasion to provide adjunct data.

Methods

Open one-to one exploratory interviews lasting 35–90 min were conducted by one researcher using topic guides. A five-staged analytical framework facilitated iterative scrutiny of data to give a universal understanding of the experience.

Results

Three themes of healthcare experiences of people following stoma-forming surgery were identified: Relationships with health care professionals; being prepared; and regaining autonomy. They revealed how building a new sense of embodied self and increasing social confidence was facilitated by regaining physical capacity, mastering stoma function, purposeful care, and acceptance and support of others. Some conflict between the role of specialist and ward-based nurses is highlighted. Provision of responsive healthcare from all disciplines helped to establish patient self-determination in adaptation to and acceptance of self-with-a-stoma.

Conclusions

The study contributes to defining a plan of care that assists individuals with a new stoma to adapt to and accept a changed sense of embodied self. It highlights the powerful influence of health care professionals in facilitating this process through their knowledge, experience and individual approaches to care. There is an identified need for on-going review of the work of nurses and others providing care for patients following stoma-forming surgery. The findings of this UK study can have resonance with patient healthcare experiences in other countries, if, despite cultural differences in delegation of professional duties and responsibilities, the global aim is to facilitate meeting individual patient needs.     

What is pain? A phenomenological approach to understanding

nay r. & fetherstonhaugh d. (2012 ) What is pain? A phenomenological approach to understanding. International Journal of Older People Nursing 7 , 233–239
doi: 10.1111/j.1748‐3743.2012.00329.x Pain is an individual experience. This paper presents four phenomenological accounts of pain which describe: the pain at the time of the experience; the meaning the pain had at the time of the experience (reflection in); and the meaning of the experience looking back on it (reflection upon). Specifically, the accounts describe pain that is emotional, cognitive and physical (acute and chronic). By exploring the essence of pain using very personal accounts, we encourage nurses to reflect on how their own understanding of pain and individual responses to pain can impact on how they in turn recognise, assess and manage pain in older people and especially those living with dementia. Paper 1 highlights the under‐assessment of pain in older people with dementia. By confronting readers with this paper’s phenomenological approach, it is hoped that they will be challenged to address this situation.     

Reporting of neuropsychological dysfunction remains discrepant between individuals with traumatic brain injury and their close others up to five years post-injury

Purpose: The degree to which individuals with traumatic brain injury (TBI) and their close others share a common understanding and experience of post-injury neuropsychological changes is currently unclear. The aim of this preliminary study was to longitudinally examine levels of agreement between self and close other reports of neuropsychological dysfunction following TBI and explore factors associated with these agreement levels. Method: Sixty-three people with TBI and their nominated close others independently completed the Structured Outcome Questionnaire at 1- and 5-years post-injury, reporting whether the person with TBI was experiencing any negative cognitive, behavioural or emotional changes compared to pre-injury. Results: Agreement levels between pair members ranged from chance to approximately 75% across neuropsychological domains and did not significantly change over 1- and 5-year time points. In the case of pair disagreement, close others were generally more likely to report difficulties. Pair disagreement was significantly associated with close other anxiety. Conclusions: Agreement between self and close others remains limited up to 5-years post-injury which questions the practice of using these reports interchangeably in research and clinical practice. Preliminary findings suggest some association between pair disagreement and close other psychological function; however, further research is warranted.

• Implications for Rehabilitation

• Reporting of neuropsychological dysfunction between individuals with TBI and their close others is not sufficiently reliable to warrant interchangeable use within research or clinical practice.

• Including both individuals with TBI and their close others in clinical assessments will facilitate a more holistic understanding of the client’s difficulties and their relationships with those close to them.

• Preliminary findings indicate that disagreement between individuals with TBI and their close others may be associated with close other anxiety. Clinicians should be aware of the potential for disagreement to impact on the psychological health of close others.

     

A Lesson in Spirituality

Understanding spirituality during palliative care training is not easy. It slowly unravels itself when one starts caring for patients and meeting their caregivers. One such experience in the hospice has been described in this narrative. A person with advanced incurable cancer is initially in severe distress. Over time, he slowly comes to terms with the situation and eventually, a question from his illiterate wife—an insightful question about any last wish—brings out his desire to have certain religious rituals that were alien to his own religion. After his death, the family members concur with his last wish and also indulge in some religious rituals of their own choice. This story reaffirms that the essence of spirituality is the coexistence of harmony and humanity.     

Living with chronic obstructive pulmonary disease: developing conscious body management in a shrinking life‐world

Title. Living with chronic obstructive pulmonary disease: developing conscious body management in a shrinking life‐world. Aim. This paper is a report of a study to explore the changes experienced by the person living in a body with chronic obstructive pulmonary disease. Background. Chronic obstructive pulmonary disease is the world’s fourth leading cause of death, and the World Health Organisation predicts further increases in prevalence and mortality. Despite a growing body of associated knowledge, there remains much to learn about patient and family‐driven goals for medical and surgical treatment to guide nursing practice, to support self–management strategies, and to provide a context for therapeutic outcomes. Methods. Merleau‐Ponty’s philosophy of the body provided a framework for this Heideggerian phenomenological inquiry with 15 people with emphysema and 14 of their family members. The participants were drawn from three Australian teaching hospitals. Hermeneutic analysis was used to interpret 58 in‐depth interviews conducted between 2003 and 2005. Findings. People with severe emphysema experience a shrinking life‐world shaped by breathlessness. This diminishes the predictability and automatic nature of their bodies and their perceived effectiveness as a person. They develop a number of strategies of conscious body management to facilitate breathing, mobility and task completion. Conclusion. Understanding of the person’s changed body and the resulting expertise that those living with chronic illness bring into care and assessing and facilitating this expertise are central to planning sensitive and appropriate care and evaluating outcomes for medical or surgical therapies that are perceived as meaningful to the person.     

Migraine – more than a headache: women’s experiences of living with migraine

Purpose: In this qualitative study the aim was to explore the meaning of living with migraine. Methods: In-depth interviews were conducted with ten women about their experience of living with migraine. Halfway through the interview, the women drew a picture of what living with migraine is like, and the interview continued with the conversation being guided by the picture. The interviews were analyzed using a hermeneutic phenomenological method inspired by van Manen. Results: The analysis revealed an essence “Being obliged to endure a life accompanied by an unpredictable and invisible disorder” and three themes “Being besieged by an attack”, “Struggling in a life characterized by uncertainty” and “Living with an invisible disorder.” Conclusions: Migraine is a debilitating disorder which accompanies life in the sense that it or the threat of its return is always present, and yet invisible to others. The struggle of enduring life with migraine is worsened by the feeling of having an invisible disorder and of being doubted. There is a need to increase the knowledge among healthcare professionals about what it means to live with migraine, something this qualitative study offers.

Implications for Rehabilitation

• The meaning of living with migraine is experienced as having a debilitating disorder which accompanies life in the sense that it or the threat of its return is always present, and yet invisible to others.

• There is a need for healthcare professionals to increase their awareness of the meaning of living with migraine, to enable them to meet the needs of each person with migraine.

     

Palliative care for people with non-malignant conditions in a New Zealand community

Abstract

Introduction: Little is known about the experiences of people with non-malignant, life-threatening conditions in the community who are not receiving hospice palliative care. The aim of this study was to understand the experiences and needs of people dying in the community with respiratory, renal, cardiac, neurological diseases, and cancer and those of the people caring for them, both formal health professionals and informal carers.

Subjects and Methods: This is qualitative research where 13 people with life-limiting illness, eight spousal caregivers, three adult children, three specialists, one general practitioner and one psychotherapist were interviewed – a total of 29 participants. Analysis was thematic and interpretive within a phenomenological framework.

Conclusions: Non-malignant disease makes similar demands on patients, families and health professionals, yet malignant disease is more likely to have the terminal phase identified so that people can access palliative care services. There were a number of spousal caregivers, who also had life-limiting conditions thus increasing the level of burden experienced by not only themselves, but their families. This research identified the needs of individuals and their families with non-malignant conditions compared with those with malignant conditions and confirmed the findings of previous literature. Understanding the burden families' experience and how they rely on health professionals will assist in developing collaborative ways of working to break down barriers and provide palliative care for these individuals and their families.     

Brain death: close relatives' use of imagery as a descriptor of experience

AIM: This paper is a report of a study to explore the use of imagery to describe the experience of confronting brain death in a close relative. BACKGROUND: The brain death of a loved one has been described as an extremely difficult experience for close relatives, evoking feelings of anger, emotional pain, disbelief, guilt and suffering. It can also be difficult for relatives to distinguish brain death from the state of coma and thus difficult to apprehend information about the diagnosis. METHODS: Narrative theory and a hermeneutic phenomenological method guided the interpretation of 17 narratives from close relatives of brain dead patients. All narratives were scrutinized for experiences of brain death. Data were primarily collected in 1999. The primary analysis related to close relatives' experience of brain death in a loved one. A secondary analysis of the imagery they used to describe their experience was carried out in 2003. FINDINGS: Six categories of imagery used to describe the experience of confronting a diagnosis of brain death in a loved one emerged: chaotic unreality; inner collapse; sense of forlornness; clinging to the hope of survival; reconciliation with the reality of death; receiving care which gives comfort. Participants also identified two pairs of dimensions to describe their feelings about the relationship between their brain dead relative's body and personhood: presence-absence and divisibility-indivisibility. Being confronted with brain death meant entering into the anteroom of death, facing a loved one who is 'living-dead', and experiencing a chaotic drama of suffering. CONCLUSION: It is very important for members of the intensive care unit team to recognize, face and respond to these relatives' chaotic experiences, which cause them to need affirmation, comfort and caring. Relatives' use of imagery could be the starting point for a caring conversation about their experiences, either in conversations at the time of the death or when relatives are contacted in a later follow-up.