“It gave me something big in my life to wonder and think about which took over the space … and not MS”: Managing well-being in multiple sclerosis through art-making

This is the author's accepted manuscript. The final published article is available from the link below. Copyright @ 2014 Informa UK Ltd.Background and aim: Individuals living with Multiple Sclerosis (MS) often face progressive loss of function, uncertainty and disruption to self-image and valued roles. Previous studies show that creative self-expression is valued by some people living with long-term illness, yet its meaning for people living with MS is unclear. This research study explored the meanings of leisure-based visual art-making for people living with MS. Method: This qualitative study followed guidelines for Interpretative Phenomenological Analysis (IPA). Single semi-structured interviews were conducted with five adults (2 males; 3 females; 40–65 years), recruited from MS Ireland. Findings: Participants valued art-making for contributing to a more satisfying way of life; for filling occupational voids and using time well. Deep immersion offered respite from worry about illness. Creative classes offered social camaraderie and opportunities for learning and development. Art-making processes and products were highly affirmative, increasing emotional well-being and promoting self-worth. Most felt that they expressed valued aspects of self through their art. Art-making appeared to assist with identity maintenance, accommodating functional losses associated with MS whilst opening “new doors”. Conclusion: Art-making offered a multi-faceted means of supporting identity and increasing fulfilment in lives that were restricted in many ways by MS

Using interpretative phenomenological analysis to inform physiotherapy practice: An introduction with reference to the lived experience of cerebellar ataxia

The attached file is a pre-published version of the full and final paper which can be found at the link below.This article has been made available through the Brunel Open Access Publishing Fund.Qualitative research methods that focus on the lived experience of people with health conditions are relatively underutilised in physiotherapy research. This article aims to introduce interpretative phenomenological analysis (IPA), a research methodology oriented toward exploring and understanding the experience of a particular phenomenon (e.g., living with spinal cord injury or chronic pain, or being the carer of someone with a particular health condition). Researchers using IPA try to find out how people make sense of their experiences and the meanings they attach to them. The findings from IPA research are highly nuanced and offer a fine grained understanding that can be used to contextualise existing quantitative research, to inform understanding of novel or underresearched topics or, in their own right, to provoke a reappraisal of what is considered known about a specified phenomenon. We advocate IPA as a useful and accessible approach to qualitative research that can be used in the clinical setting to inform physiotherapy practice and the development of services from the perspective of individuals with particular health conditions.This article is available through the Brunel Open Access Publishing Fund

Older persons’ experiences of Reflective STRENGTH‐Giving Dialogues – ‘It\u27s a push to move forward’

Rationale: Experiences of the innovative method Reflective STRENGTH‐Giving Dialogue (STRENGTH), which is grounded in a lifeworld perspective and developed to improve quality of care, is described in this study. Innovative thinking in developing health and social care, which may include digital solutions, is required to ensure a meaningful and dignified life in old age. Aim: The aim of this study was to describe experiences of the intervention Reflective STRENGTH‐Giving Dialogue from the perspective of older persons living with long‐term health problems. Method: Individual qualitative interviews were conducted with 27 older persons who participated in the intervention. The older persons wrote notes from each dialogue in booklets, and the booklets became part of the study data, analysed with a Reflective Lifeworld Research approach. Results: STRENGTH is experienced as an opportunity to reflect upon life and identify small and large life projects. Dialogues that lead to change in thoughts and actions influence the older persons\u27 well‐being, sense of balance, joy and meaning in life. There is an experience of STRENGTH as a starting point and a push to move forward in an effort to experience joy and meaning in life when living with long‐term health problems. Conclusions: STRENGTH has the potential to contribute to quality improvement in person‐centred care and enhance meaning in life for older persons living with long‐term health problems. However, the use of a digital tool in this particular context poses challenges that must be considered

Haemoglobin causes neuronal damage in vivo which is preventable by haptoglobin

After subarachnoid haemorrhage, prolonged exposure to toxic extracellular haemoglobin occurs in the brain. Here, we investigate the role of haemoglobin neurotoxicity in vivo and its prevention. In humans after subarachnoid haemorrhage, haemoglobin in cerebrospinal fluid was associated with neurofilament light chain, a marker of neuronal damage. Most haemoglobin was not complexed with haptoglobin, an endogenous haemoglobin scavenger present at very low concentration in the brain. Exogenously added haptoglobin bound most uncomplexed haemoglobin, in the first 2 weeks after human subarachnoid haemorrhage, indicating a wide therapeutic window. In mice, the behavioural, vascular, cellular and molecular changes seen after human subarachnoid haemorrhage were recapitulated by modelling a single aspect of subarachnoid haemorrhage: prolonged intrathecal exposure to haemoglobin. Haemoglobin-induced behavioural deficits and astrocytic, microglial and synaptic changes were attenuated by haptoglobin. Haptoglobin treatment did not attenuate large-vessel vasospasm, yet improved clinical outcome by restricting diffusion of haemoglobin into the parenchyma and reducing small-vessel vasospasm. In summary, haemoglobin toxicity is of clinical importance and preventable by haptoglobin, independent of large-vessel vasospasm

The Meaning of Body Experience Evaluation in Oncology

Evaluation of quality of life, psychic and bodily well-being is becoming increasingly important in oncology aftercare. This type of assessment is mainly carried out by medical psychologists. In this paper I will seek to show that body experience valuation has, besides its psychological usefulness, a normative and practical dimension. Body experience evaluation aims at establishing the way a person experiences and appreciates his or her physical appearance, intactness and competence. This valuation constitutes one’s ‘body image’. While, first, interpreting the meaning of body image and, second, indicating the limitations of current psychological body image assessment, I argue that the normative aspect of body image is related to the experience of bodily wholeness or bodily integrity. Since this experience is contextualized by a person’s life story, evaluation should also focus on narrative aspects. I finally suggest that the interpretation of body experience is not only valuable to assess a person’s quality of life after treatment, but that it can also be useful in counseling prior to interventions, since it can support patients in making decisions about interventions that will change their bodies. To apply this type of evaluation to oncology practice, a rich and tailored vocabulary of body experiences has to be developed

Learning to live with Parkinson’s disease in the family unit:an interpretative phenomenological analysis of well-being

We investigated family members’ lived experience of Parkinson’s disease (PD) aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together with PD exploring the kinship within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey

Dignity and Narrative Medicine

Critiques of the dehumanising aspects of contemporary medical practice have generated increasing interest in the ways in which health care can foster a holistic sense of wellbeing. We examine the relationship between two areas of this humanistic endeavour: narrative and dignity. This paper makes two simple arguments that are intuitive but have not yet been explored in detail: that narrative competence of carers is required for maintaining or recreating dignity, and that dignity promotion in health care practice is primarily narrative in form. The multiple meanings that dignity has in a person’s life are what give the concept power and can only be captured by narrative. This has implications for health care practice where narrative work will be increasingly required to support patient dignity in under-resourced and over-subscribed health care system

Metastasis to the breast from an adenocarcinoma of the lung with extensive micropapillary component: a case report and review of the literature

Breast metastasis from extra-mammary malignancy is rare. Based on the literature an incidence of 0.4-1.3% is reported. The primary malignancies most commonly metastasizing to the breast are leukemia-lymphoma, and malignant melanoma. We present a case of metastasis to the breast from a pulmonary adenocarcinoma, with extensive micropapillary component, diagnosed concomitantly with the primary tumor. A 73-year-old female presented with dyspnea and dry cough of 4 weeks duration and a massive pleural effusion was found on a chest radiograph. Additionally, on physical examination a poorly defined mass was noted in the upper outer quadrant of the left breast. The patient underwent bronchoscopy, excisional breast biopsy and medical thoracoscopy. By cytology, histology and immunohistochemistry primary lung adenocarcinoma with metastasis to the breast and parietal pleura was diagnosed. Both the primary and metastatic anatomic sites demonstrated histologically extensive micropapillary component, which is recently recognized as an important prognostic factor. The patient received chemotherapy but passed away within 7 months. Accurate differentiation of metastatic from primary carcinoma is of crucial importance because the treatment and prognosis differ significantly

Responsibility for managing musculoskeletal disorders – A cross-sectional postal survey of attitudes

Background: Musculoskeletal disorders are a major burden on individuals, health systems and social care systems and rehabilitation efforts in these disorders are considerable. Self-care is often considered a cost effective treatment alternative owing to limited health care resources. But what are the expectations and attitudes in this question in the general population? The purpose of this study was to describe general attitudes to responsibility for the management of musculoskeletal disorders and to explore associations between attitudes and background variables. Methods: A cross-sectional, postal questionnaire survey was carried out with a random sample of a general adult Swedish population of 1770 persons. Sixty-one percent (n = 1082) responded to the questionnaire and was included for the description of general attitudes towards responsibility for the management of musculoskeletal disorders. For the further analyses of associations to background variables 683–693 individuals could be included. Attitudes were measured by the "Attitudes regarding Responsibility for Musculoskeletal disorders" (ARM) instrument, where responsibility is attributed on four dimensions; to myself, as being out of my hands, to employers or to (medical) professionals. Multiple logistic regression was used to explore associations between attitudes to musculoskeletal disorders and the background variables age, sex, education, physical activity, presence of musculoskeletal disorders, sick leave and whether the person had visited a care provider. Results: A majority of participants had internal views, i.e. showed an attitude of taking personal responsibility for musculoskeletal disorders, and did not place responsibility for the management out of their own hands or to employers. However, attributing shared responsibility between self and medical professionals was also found.The main associations found between attitude towards responsibility for musculoskeletal disorders and investigated background variables were that physical inactivity (OR 2.92–9.20), musculoskeletal disorder related sick leave (OR 2.31–3.07) and no education beyond the compulsory level (OR 3.12–4.76) increased the odds of attributing responsibility externally, i.e placing responsibility on someone or something else.Conclusion: Respondents in this study mainly saw themselves as responsible for managing musculoskeletal disorders. The associated background variables refined this finding and one conclusion is that, to optimise outcome when planning the prevention, treatment and management of these disorders, people's attitudes should be taken into account