BACKGROUND: Understanding the physical activity experiences of patients with multiple myeloma (MM) is essential to inform the development of evidence-based interventions and to quantify the benefits of physical activity. The aim of this study was to gain an in-depth understanding of the physical activity experiences and perceived benefits and barriers to physical activity for patients with MM. METHODS: This was a qualitative study that used a grounded theory approach. Semi-structured interviews were conducted in Victoria, Australia by telephone from December 2011-February 2012 with patients who had been treated for MM within the preceding 2-12 months. Interviews were transcribed and analysed using the constant comparison coding method to reduce the data to themes. Gender differences and differences between treatment groups were explored. RESULTS: Twenty-four interviews were completed. The sample comprised 13 females (54%), with a mean age of 62 years (SD = 8.8). Sixteen (67%) participants had received an autologous stem cell transplant (ASCT). All participants currently engaged in a range of light to moderate intensity physical activity; walking and gardening were the most common activities. Recovery from the symptoms of MM and side effects of therapy, psychological benefits, social factors and enjoyment were important benefits of physical activity. Barriers to physical activity predominately related to the symptoms of MM and side effects of therapy, including pain, fatigue, and fear of infection. Low self- motivation was also a barrier. Women participated in a more diverse range of physical activities than men and there were gender differences in preferred type of physical activity. Women were more likely to report psychological and social benefits; whereas men reported physical activity as a way to keep busy and self-motivation was a barrier. Patients treated with an ASCT more often reported affective benefits of participation in physical activity and fatigue as a barrier. Patients treated with other therapies (e.g., chemotherapy, radiotherapy) were more likely to report pain as a barrier. CONCLUSIONS: Patients with MM experience debilitating effects of their condition and therapy, which influences their level and intensity of physical activity participation. Physical activity programs should be individualised; take into consideration gender differences and the impact of different types of therapy on physical activity; and focus on meeting the psychological, coping and recovery needs of patients.

PURPOSE: Little qualitative research exploring the impact of multiple myeloma (MM) and its treatment on the health-related quality of life (HRQL) of patients has been published. This study aimed to explore the burden of MM symptoms and treatment and the impact of these on HRQL. A model was developed to illustrate key concepts and their interrelationships. METHODS: Patients with MM were recruited to this cross-sectional, qualitative study through a patient panel and at two clinical sites in the USA. An interview discussion guide was developed using a review of published literature and interviews with experienced MM clinicians. In-depth, semistructured telephone interviews with MM patients were conducted to explore their experiences of the disease and its treatment. Data were analyzed using a thematic analysis approach. RESULTS: Twenty MM patients at various stages of treatment participated in open-ended, semistructured interviews. Patients reported both current and previous MM symptoms; most had experienced fatigue and pain. Other commonly reported symptoms were fractures, anemia, neuropathy, aches, and infections. MM treatment was found to have a negative impact on patients' HRQL; treatment-related adverse events included fatigue, neuropathy, insomnia, and gastrointestinal symptoms. MM treatment placed a substantial psychological and physical burden on patients, disrupting social activities, decreasing independence, and impacting on relationships. A model was developed to illustrate the relationship between these concepts. CONCLUSION: The conceptual model developed in this study illustrates the many aspects of MM and its treatment and how they can have a negative impact on patients' HRQL.

OBJECTIVE: The study was conducted to understand the emotional impact of multiple myeloma, as well as the impact of its principle treatment, peripheral blood stem cell transplant (PBSCT). The absence of psycho-oncology research literature on this population prompted the need for a hypothesis-generating investigation. Thus, a qualitative design was used to construct a theoretical model of the trauma relating to diagnosis and treatment of myeloma. The study also incorporates the important period of reflection and growth following treatment. METHODS: The sample consisted of 3 women and 3 men treated for myeloma at a New York City-based cancer treatment center. Data from individual interviews were audiotaped and transcribed. After extensive review, the data were categorized into groups of repeating ideas, themes and broad theoretical constructs. RESULTS: A five-construct model emerged from the data analysis that integrated a model of trauma and growth presented in earlier work (Auerbach et al., 2006). These constructs roughly correspond with stages of illness, but do not necessarily imply a linear process, as suggested by stage models. The first construct is diagnosis. Patients receive the news that they have multiple myeloma. Initial reactions are discussed and a treatment plan takes form. In the second construct, treatment, patients highlight the physical and emotional hurdles confronted throughout treatment. The third construct, network of safety, presents social factors that play a role in comforting patients throughout illness. Patients recognize the importance of a strong support system during their experiences. In the fourth construct, recuperation, physical energy is regained after an arduous recovery period. This contributes to higher spirits and a motivation to reengage with life. The fifth construct is reflection and new existence. Patients strive to balance a new reality that relapse and death are inevitable, along with their need to live a meaningful life. Many do not yet appreciate how their disease has impacted them, but describe how their interpersonal lives and perceptions have changed, both positively and negatively. SIGNIFICANCE OF RESULTS: Limitations of the study, future directions for research and clinical implications are discussed.

The experience of living with relapsed Multiple Myeloma (myeloma) for eight patients accessing treatment within a haematology unit in a large London hospital is explored in this study. Myeloma is recognised as incurable and is sometimes described as an 'incurable chronic disease' with a main treatment option of chemotherapy. Hermeneutic phenomenology was the methodology used in conducting the study and data were collected through open-ended, unstructured interviews. Findings suggest that living with relapsed myeloma in the context of a chronic illness causes an ever-shifting perspective between illness and wellness consequently maintaining a state of uncertainty. The patients in this study placed importance on the emotional aspect of their experience. Hope, intuitive knowing and a fighting spirit were expressed as required positive elements that enabled living with relapsed myeloma. These assisted in maintaining normality, coping with bad news and adjusting to the illness. Pervading through the themes was the need to control uncertainty. Having strong support from significant others provided something to live for and the necessary social support required to promote a new orientation to life.

AIM: To explore patients' lived experience of being diagnosed with myeloma. METHOD: A hermeneutic phenomenological approach was adopted to analyse data from interviews with 11 patients diagnosed with myeloma. FINDINGS: Participants described how they lived with what they described as an 'unknown cancer', and talked about their feelings of loss. They reported having an altered body image as a result of alopecia and fatigue. Fear of disease recurrence was expressed and the significance of providing support was emphasised. Participants felt lucky to be alive and lucky that myeloma is treatable. CONCLUSION: The study findings illustrate the importance of addressing patients' emotional and psychological needs, and the significance of providing support for those with myeloma.

GOALS OF WORK: The purpose of this study was to explore the experience of living with myeloma after completion of treatments in patients and their informal caregivers. PATIENTS AND METHODS: Qualitative interviews were carried out with 20 patients living with myeloma and 16 of their informal caregivers (mostly spouses), asking them through semi-structured interviews to talk about the effects of myeloma on their lives, issues and concerns, their supportive care needs and how they were coping in everyday life. MAIN RESULTS: Key findings indicate the significant impact myeloma has on patients' and caregivers' emotional, role, social and work-related areas of life. While patients seemed less engaged with their illness, their informal caregivers were providing practical and emotional support to patients almost exclusively, often by neglecting their own needs. This increased engagement with the informal caring often led to experiences of a heightened illness burden and difficulties with coping. Both patients and caregivers had significant fears and uncertainty about the future, with myeloma being described as a 'time bomb'. Both patients and caregivers were concealing stressful situations related to the illness from each other in an effort to protect them, although this resulted in isolation. CONCLUSIONS: While health professionals' attention has been concentrated in helping patients to get through treatments, it is imperative that psychosocial rehabilitation is offered also to those who survive many years after diagnosis and are off treatments. Caregivers are particularly vulnerable to the high demands of caring for myeloma patients, and a more concerted action by health professionals should be directed to them.

PURPOSE: The aim of this study was to gain greater insight into the symptoms and distressing experiences of patients living with myeloma. METHODS: A qualitative interview evaluation of distressing experiences in patients with myeloma, following a grounded theory approach, was used. Sampling was purposive, with particular attention to diversity in age and ethnic minority patients. RESULTS: Fifteen patients were interviewed. Key findings suggest that (a) many individual symptoms were not considered as particularly distressing beyond the acute phase of the disease and its treatment, except when they occurred in a context that was threatening to the patients; (b) visible symptoms that showed to other people one's disease condition may be particularly distressing, and (c) the conditioning phase of the transplant was particularly stressful and a violation to one's body, described by some patients as 'being somehow dead'. CONCLUSION: The personal meaning ascribed to symptoms and treatments as well as the context in which they occur are important determinants of distress. Such patient meanings and contexts should be explored by health professionals in-depth, in order to prepare patients for the experience and support them more fully.

The aim of this study was to obtain a more in-depth understanding of cognitive impairments and concerns as described by patients with multiple myeloma and the strategies used to cope with them. Semi-structured qualitative interviews were undertaken with 15 multiple myeloma patients of differing age ranges and at various stages of their disease. Various cognitive impairments, such as problems with short-term memory, poor recall and lack of concentration were observed and/or expressed in at least 10 out of 15 patients, all of them long(er)-term survivors. In some patients cognitive impairments significantly interfered with their personal and professional lives, and for some patients these were described as permanent. The patients used various coping strategies, from denial, taking notes, writing diaries, reading simpler texts, using talking books and videos, to using systems for counting medication to cope with the results of their cognitive impairment. Our findings differ from much of the contemporary literature which states that if cognitive impairments in cancer patients occur, they are mostly mild and transient. More proactive supportive care is needed to help patients with multiple myeloma to cope with poorer cognitive functioning.

AIM: To report findings from a qualitative study of the experiences of long-term survivors of multiple myeloma. BACKGROUND: Multiple Myeloma is a malignant disease of the bone marrow. Until recently, it was rapidly fatal. Although it remains incurable, people diagnosed with it are living longer on average, largely due to new treatments, some of which have onerous side effects. DESIGN: Prospective descriptive study. METHOD: A series of 47 in-depth interviews were conducted at 6-12 month intervals over 18 months in 2008-2010 with 10 long-term survivors of myeloma and their primary support person. Interviews were analysed using the constant comparative method (Grounded Theory). FINDINGS: To adapt to the effects of both the disease and ongoing medical treatments, participants undertook extensive 'illness work'. Most of this work fell into two broad categories. Risk work aimed to mitigate risks to the well-being of both the person with myeloma and his/her carer. Emotion work aimed to manage the feelings of self and others in a protracted cycle of remission and relapse. CONCLUSION: The experience of myeloma is increasingly characterized by issues associated with chronic disease and 'survivorship'. It is important for nurses working with people with myeloma to understand the overwhelming nature of illness work in this context. Nurses can put in place supportive measures to address the two main 'drivers' of this work: constant risk to well-being of survivors (including carers) and the recurrent need to manage emotions in social interactions.

Multiple myeloma is an incurable malignancy that accounts for 1% of all new cancers, usually affecting older patients. It follows a variable and unpredictable course. Despite years of research, outcomes remain poor. The purpose of this qualitative study was to gain an understanding of the impact of multiple myeloma on the patient and family. Based on 20 indepth telephone interviews, several themes were identified and analyzed. The results were surprising in that every patient interviewed considered the suddenness of having to face his mortality the most difficult obstacle to overcome. While specialized physical care will always be very important, the time has come for nurses to listen more carefully to the psychosocial concerns of this group.