Feel My Pain: Design and Evaluation of Painpad, a Tangible Device for Supporting Inpatient Self-Logging of Pain

Monitoring patients' pain is a critical issue for clinical caregivers, particularly among staff responsible for providing analgesic relief. However, collecting regularly scheduled pain readings from patients can be difficult and time-consuming for clinicians. In this paper we present Painpad, a tangible device that was developed to allow patients to engage in self-logging of their pain. We report findings from two hospital-based field studies in which Painpad was deployed to a total of 78 inpatients recovering from ambulatory surgery. We find that Painpad results in improved frequency and compliance with pain logging, and that self-logged scores may be more faithful to patients' experienced pain than corresponding scores reported to nurses. We also show that older adults may prefer tangible interfaces over tablet-based alternatives for reporting their pain, and we contribute design lessons for pain logging devices intended for use in hospital settings

Grasp Your Pain: A Tangible Tool to Explore the Logging and Assessment of Pain

Pain is a subjective and innate experience that can be difficult to describe. Chronic pain is associated with decreased quality of life, and it is prevalent in cancer populations. With a growing elderly population, the global cancer burden is expected to rapidly advance in the coming years. Expressing pain and symptom experiences is essential for patients to receive proper treatment and care. Self-reporting tools are useful and reliable measures of patients' symptoms. A commonly used assessment form in palliative care is ESAS-r, the revised Edmonton Symptom Assessment System. It lets the patient rate a list of symptoms, on a scale from 0 to 10, depending on their intensity. Research suggests that ESAS-r only captures a snapshot of the patients' symptom profile, and that is burdensome to patients and clinical staff. There is a need for self-assessment tools that are easy to use, non-intrusive, and can be used in situ. The research in this thesis explores the use of a tangible tool (Grasp), and squeezing as an input method to log pain/symptoms experiences. Grasp consists of a small stone-like object. When squeezed, it logs the time and duration of the interaction. Squeezes are then visualized on an accompanying interface. Through a Mixed Methods Research approach, a pilot study and clinical trial were conducted. The former gathered participant (N=8) opinions on Grasp, and the use of squeeze duration to log experiences. The latter explored the implementation of Grasp alongside ESAS-r in a cancer ward (nurses = 6, patients = 8). Two broad research questions were examined: RQ1: How can tangible interaction through Grasp support the logging of experiences? and RQ2: How do palliative cancer patients and nurses experience Grasp as a tool for the logging, assessment, and communication of pain and symptoms compared to ESAS-r? Findings from the pilot suggest that there is potential in using Grasp and squeeze duration to log events, and that interacting with the tool potentially can help distract or externalize from negative experiences. Participants from both studies found Grasp easy to use, and visualizations intuitive and meaningful. Nurses and patients were generally satisfied with Grasp as a tool, and it helped paint a wider image of the patients' symptoms compared to ESAS-r alone. However, patients were sometimes too ill to use Grasp, and the research was limited by barriers related to clinical environments. Further research is needed to explore the potential of tangible interaction and squeezing as an input method with other patient groups. There is also the aspect of the affective interaction that should be investigated further.Masteroppgave i informasjonsvitenskapINFO390MASV-INF

Learning To Be Affected: Social suffering and total pain at life’s borders.

The practice of Live Sociology in situations of pain and suffering is the author’s focus. An outline of the challenges of understanding pain is followed by a discussion of Bourdieu’s ‘social suffering’ (1999) and the palliative care philosophy of ‘total pain’. Using examples from qualitative research on disadvantaged dying migrants in the UK, attention is given to the methods that are improvised by dying people and care practitioners in attempts to bridge intersubjective divides, where the causes and routes of pain can be ontologically and temporally indeterminate and/or withdrawn. The paper contends that these latter phenomena are the incitement for the inventive bridging and performative work of care and Live Sociological methods, both of which are concerned with opposing suffering. Drawing from the ontology of total pain, I highlight the importance of (i) an engagement with a range of materials out of which attempts at intersubjective bridging can be produced, and which exceed the social, the material, and the temporally linear; and (ii) an empirical sensibility that is hospitable to the inaccessible and non-relational

Creative adventures and flow in art-making: A qualitative study of women living with cancer

(Introduction) A diagnosis of cancer is recognised as highly fear-arousing. People not only face the discomforts of potentially disfiguring medical treatment but also confront issues of mortality. Even those who have completed treatment tend to ‘live with’ cancer for many years, because they remain subject to intrusive thoughts about cancer and concerned about possible recurrence and metastasis (Saegrov and Halding 2003, Laubmeier and Zakowski 2004). As well as creating worry and vigilance, cancer imposes what has been described as a biographical disruption (Bury 1982). After such a diagnosis, the person may feel that valued life goals are unattainable. The assumptions that guided life before cancer may be shattered and the person may feel disconnected from the familiar self, observing – from the avoidance or the pity of others – that only a stigmatised cancer identity remains (Frank 1991, Mathieson and Stam 1995). Facing such a combination of physical, emotional, cognitive and social stressors, it would seem difficult for people with cancer to construct a life of positive quality. Yet research studies suggest that many people devise resourceful coping strategies. Some people cope by reprioritising their goals to enjoy more authentic relationships and activities. Some even come to re-evaluate their illness as having catalysed certain positive changes (for example, Mathieson and Stam 1995, Carpenter et al 1999, Urcuyo et al 2005). However, previous research has tended to neglect the potential contribution of meaningful occupations to maintaining or regaining subjective wellbeing in cancer. Flow has been conceptualised as a particular type of optimal experience associated with ‘vital engagement’, a deep involvement in activities that are significant to the self and that promote feelings of aliveness or vitality (Nakamura and Csikszentmihalyi 2002, p83). To what extent vital engagement offers people living with cancer a source of subjective wellbeing has received little previous examination in the occupational therapy literature. This issue is addressed here

Factors affecting sustained employment of people with chronic illness

Dissertation submitted to the Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, in fulfilment of the requirements for the degree of Master of Science in Occupational Therapy Johannesburg, 2015Numerous factors influence the employment of people with chronic illness. At some point, these people withdraw from the labour market. This has both a direct and indirect cost to the person, their family and society as a whole. Aim: To explore the factors affecting sustained employment of people with chronic illness. A second component explored participants’ opinions regarding return to work in the future. Research Methods: The study was done in two phases: 1) The identification and validation of the research instrument; and 2) The administration of the research instrument. Descriptive statistics were utilised to analyse data obtained from the research instrument. Two sets of correlations were run to identify significant differences between the participants expecting to return to work and those who did not expect to return to work. Results: Descriptive statistics revealed no meaningful trend on self-reported factors. The Mann-Whitney U identified a number of significant differences between participants expecting to return to work and those who did not expect to return to work, in both personal and contextual factors. Conclusion: A broad range of factors were elicited regarding the barriers and accommodations required for sustained employment within both the personal and environmental constructs. Self-report questionnaires provided some useful information, but a broader understanding of the factors influencing work was obtained from a comprehensive interview. Significant differences were present between people expecting to return to work and those who did not expect to return to work regarding environmental and personal factors as well as factors supporting work

Breast Cancer Survivors And Medication Adherence: The Role Of Health Beliefs, Perceptions Of Aging, And Partner Support

Aromatase inhibitors (AIs) are a daily endocrine therapy for post-menopausal breast cancer survivors and often cause difficult side effects. Women who do not adhere to AI treatment are at higher risk of cancer recurrence and mortality, yet poor adherence is a prevalent problem. This dissertation explores potentially modifiable, psychosocial predictors of AI adherence. In Chapter 1, to determine how to measure adherence in subsequent studies, we examined the psychometric properties of two self-report adherence measures. Using estrogen assays to assess convergent validity, we found that neither measure performed well; however, in exploratory analyses, a “yes/no” item about use of an AI in the past month was found to be associated with estrogen metabolite levels. In Chapter 2, we examined whether survivors’ health beliefs about AI treatment predicted their adherence behaviors. Higher perceived barriers to AI treatment, but not perceived susceptibility to cancer recurrence or perceived benefits of AI treatment, predicted non-adherence. In Chapter 3, we examined the role of arthralgia-associated aging perceptions. After controlling for the severity of arthralgia (a common side effect of AIs), we found that the risk of non-adherence was higher among women who perceived that they had aged rapidly while on the treatment. We used a mixed-methods approach in Chapter 4 to examine the role of partner support. Our qualitative findings suggest that integration of partners into follow-up care and partner support around body changes and sexual dysfunction associated with AIs may contribute to women’s ability to persist with their treatment. Our quantitative results demonstrated that satisfaction with partner support around AI treatment was determined by affection and emotional support, whereas informational and tangible support had no bearings on their satisfaction levels. Support preferences did not differ between women with lower and higher levels of pain from AI side effects; however, women with higher levels of pain tended to receive more informational support. Together, these findings can inform intervention content for women who are at risk of not adhering to AI treatment

Social Support as a determinant of Health Related Quality of Life in Breast Cancer survivors in California

Objective: To evaluate the relationship between perceived social support and HRQOL (physical and emotional) in low SES breast cancer survivors. Methods: A cross-sectional study design was used to measure perceived social support at 18 months and HRQOL at 3 years after breast cancer diagnosis using MOS SS and MOS SF-36, respectively. Multiple regression analyses were used to evaluate the relationship. Results: Menopause at the time of diagnosis, adjunct chemotherapy, adjunct radiation therapy, co-morbidities, treatment side effects and depression were negatively associated with PCS scores (p \u3c 0.01). Treatment side effects, anxiety and depression were negatively associated with MCS scores (p \u3c 0.01). Conclusions: Perceived social support was not associated with HRQOL in low SES breast cancer survivors in our study. Menopause, co- morbidities, treatment side effect, adjunct chemotherapy and radiation therapy adversely affect physical HRQOL. Feelings of anxiety, depression and treatment side effects have a negative impact on emotional HRQOL

Art Therapy and Chronic Pain: Exploring Pain Tolerance, Body Sensations and Emotions

Over four weeks, topics of emotion, physical and body sensation, and chronic pain using art therapy were explored. The therapy provided a foundation for practicing mindfulness, increasing awareness, and expressing various symptoms such as somatic discomfort and emotional dysregulation. I co-facilitated a group consisting of individuals between the ages of 23 and 70 identifying as male or female, with a mix of white and black clients from the middle-class bracket. The group participated in art therapy and mindful meditation sessions in an outpatient program. Through this experience, I discovered that many individuals dissociate from their pain and emotional well-being. While chronic pain and mental health are comorbid, dissociation was a common theme that emerged from research and observation. While the group members felt comfortable discussing their chronic pain, they struggled with learning how to live with it and listen to their bodies. However, through mindfulness and art therapy, the group was able to become more aware of where the pain existed in their bodies and how to associate with it. I observed clients discussing their intolerance to pain through art and helped them learn to build tolerance while changing their core beliefs about their physical and emotional health

How Creative Arts Journaling Offers a Holistic and Humanizing Container for Chronic Pain Experiences: A Literature Review and Autoethnography

This expressive arts therapy capstone thesis explores the efficacy of using a creative arts journal in the exploration and management of chronic pain, as well as the correlative mental health issues that arise from chronic pain experiences. Using a biopsychosocial perspective with an awareness of racial health disparities related to chronic pain, I have provided information about chronic pain from medical and humanistic perspectives with a critical review of the literature that showcases the usefulness of the arts for reducing pain, hopelessness, and depression, and increasing mood, self–understanding, and hope. While research on visual journaling for chronic pain is in a nascent stage, much can be drawn from art journaling research with a variety of populations. In addition, an examination of both the efficacy and drawbacks of pain diaries offers some greater insight into the usefulness of chronicling pain experiences. While there is little discussion in the literature related to the specific utility of the art journal format, an examination of a journal’s purpose as a “container” offers some useful insights. Using an autoethnographic approach, I participated in a six–month visual journaling process to explore my own chronic pain experiences. The results of this self–study included a release of physical and emotional tension due to the externalization of pain, an awareness of coping strategies, and a greater sense of personal validity and visibility, among others