Bridget Dibb

Ambulatory oxygen: why do COPD patients not use their portable systems as prescribed? A qualitative study

BackgroundPatients with COPD on long term oxygen therapy frequently do not adhere to their prescription, and they frequently do not use their ambulatory oxygen systems as intended. Reasons for this lack of adherence are not known. The aim of this study was to obtain in-depth information about perceptions and use of prescribed ambulatory oxygen systems from patients with COPD to inform ambulatory oxygen design, prescription and management.MethodsA qualitative design was used, involving semi-structured face-to-face interviews informed by a grounded theory approach. Twenty-seven UK community-dwelling COPD patients using NHS prescribed ambulatory systems were recruited. Ambulatory oxygen systems comprised cylinders weighing 3.4 kg, a shoulder bag and nasal cannulae.ResultsParticipants reported that they: received no instruction on how to use ambulatory oxygen; were uncertain of the benefits; were afraid the system would run out while they were using it (due to lack of confidence in the cylinder gauge); were embarrassed at being seen with the system in public; and were unable to carry the system because of the cylinder weight. The essential role of carers was also highlighted, as participants with no immediate carers did not use ambulatory oxygen outside the house.ConclusionsThese participants highlighted previously unreported problems that prevented them from using ambulatory oxygen as prescribed. Our novel findings point to: concerns with the lack of specific information provision; the perceived unreliability of the oxygen system; important carer issues surrounding managing and using ambulatory oxygen equipment. All of these issues, as well as previously reported problems with system weight and patient embarrassment, should be addressed to improve adherence to ambulatory oxygen prescription and enhance the physical and social benefits of maintaining mobility in this patient group. Increased user involvement in both system development and service provision planning, could have avoided many of the difficulties highlighted by this study.

Social Comparison within Self-help Groups Views of Parents of Children with Duchenne Muscular Dystrophy

This study used a qualitative approach to examine the experiences of parents participating as members of the Duchenne Family Support Group (DFSG), with a focus on whether social comparison occurred within this group. Eight parents were interviewed about their experiences of being a member. Thematic analysis was used to identify themes inductively. The study uncovered a wide range of social comparisons, including upward and downward comparisons on illness and coping dimensions, with both positive and negative affects. The results highlighted the complexity of socially comparing within the context of chronic illness, particularly in an illness in which deterioration is inevitable.

Assessing subjective change in chronic illness: an examination of response shift in health-related and goal-oriented subjective status

This study examined changes over time on scales from the Short Form 36 (SF-36) and a new measure of goal-oriented subjective status (the GOSS) which assessed perceived rate of goal approach. Our aim was to determine whether adaptation to a moderately disabling chronic illness was associated with response shift. We also investigated predictors of response shift. At baseline, 301 members of a self-help group for people with Ménières disease completed the GOSS and SF-36 scales, and potential predictors of response shift. At 10-month follow-up, respondents completed the GOSS and SF-36 again in the conventional manner, and as a Then-test. The GOSS was the only scale that indicated subjective improvement between baseline and follow-up. Then-test results suggested substantial response shift on the SF-36. Severe symptoms and social comparison predicted greater response shift. Less response shift was seen in those with a longer time since diagnosis, longer membership of the self-help group and higher baseline levels of self-esteem and optimism.

Stroke participants' perceptions of robotic and electrical stimulation therapy: a new approach.

Purpose. User perceptions are critical, yet often ignored factors in the design and development of rehabilitation technologies. In this article, measures for collection of patient perceptions are developed and applied to a novel upper limb workstation that combines robotic therapy and electrical stimulation (ES). Method. Five participants with chronic upper limb hemiplegia post-stroke used a robotic workstation to undertake supported tracking tasks augmented by precisely controlled ES to their triceps muscle. Following a 6 week trial, a purpose designed set of questions was developed and individual interviews were conducted by an independent health psychologist. Results. The simple, quick to administer question set showed that participants had a positive response to the system, and contributed valuable feedback with regard to its usability and effectiveness. Participants want a home-based system targeting their whole arm. Conclusion. This article demonstrates the value in assessing user perceptions of a rehabilitation system via a simple question set. While the results of this study have implications for a wider audience, our recommendations are for a qualitative study to develop a generic evaluation tool which could be used across the growing number of devices to provide feedback to enhance future development of any new technology for rehabilitation.

Exploring positive adjustment in people with spinal cord injury.

This study explored adjustment in people with spinal cord injury; data from four focus groups are presented. Thematic analysis revealed four themes, managing goals and expectations, comparison with others, feeling useful and acceptance, showing participants positively engaged in life, positively interpreted social comparison information and set realistic goals and expectations. These positive strategies show support for adjustment theories, such as the Cognitive Adaptation Theory, the Control Process Theory and Response Shift Theory. These results also provide insight into the adjustment process of a person with spinal cord injury and may be useful in tailoring support during rehabilitation.

Exploring positive adjustment in HIV positive African women living in the UK

Research into living with HIV/AIDS has to date mainly focused on quality of life and there is little on the adjustment process for this group. The numbers of African women living with HIV/AIDS in the UK is growing and yet little is known about the adjustment experience for these women. This study explored aspects of positive adjustment to living with HIV/AIDS among a sample of African women living in London, UK. Transcripts of semi-structured interviews with 12 women were analysed using interpretative phenomenological analysis (IPA). Two superordinate themes emerged inductively from the data: positive changes in coping (subthemes: positive interpretation of their situation and positive behavioural changes) and positive growth since the HIV diagnosis (subthemes: changes in the value of life and, changes in goals and opportunities). While these women acknowledged the negative impact of living with HIV/AIDS, all participants mentioned changes in health behaviours to help regain mastery of their lives and comparing with others better-off and worse-off was used to enhance self-esteem and view their situation positively. The data show evidence for Taylors Cognitive Adaptation Theory.

The experience of infertility treatment: the male perspective

Abstract Current research surrounding infertility is focused primarily on women alone, thus removing men from the fertility equation. However, alternative research has indicated that, although men also experience infertility, there is a paucity of research on men. Therefore, very little is understood about the experiences of infertility from the male perspective. This study adopted a qualitative approach in an attempt to explore the infertility experience from the perspective of men. Fifteen men who had experienced infertility were interviewed to explore their experiences. Interpretative phenomenological analysis was used to analyse the data. Five superordinate themes were developed, and these included: (1) the influence of society on infertility; (2) feeling unacknowledged; (3) natural verses assisted conception; (4) emotional reactions; and (5) improving the infertility experience. The findings of this research indicated that men experience infertility as a mentally, physically and socially demanding condition. Comparisons to previous research have been made, and future research is proposed.

Understanding homeopathic decision-making: a qualitative study.

Background: Understanding how homeopaths make clinical decisions is important in terms of optimising patient care, yet currently little is understood about this process. Most current literature investigating decision-making has focussed on conventional medicine; to date only two studies, both quantitative, have explored this area, with both studies investigating this in homeopathy. The aim of this qualitative study was to explore how homeopaths make prescribing decisions primarily during their first consultation with a patient. Method: In-depth, semistructured, face to face interviews were carried out with 14 private homeopaths working in private practice. Interpretative phenomenological analysis (IPA) was carried out on the data by 3 researchers. Findings: Cognitive processes that homeopaths used in decision-making emerged from the analysis included the use of pattern recognition (P), hypothetico-deductive reasoning (H) and intuition (I), which led to a precise remedy match (R-M). Four themes emerged from the data: three related to the process of making a decision; one theme to those factors that influence this process. These themes fitted into a decision-making model, which we describe: the P.H.I.RM decision-making model. Two further themes emerged, which contributed to the model: the practitioners’ awareness of avoiding major bias and the role of the patient practitioner relationship in influencing decision-making. Conclusion: The P.H.I.R-M decision-making model describes how homeopathic practitioners’ used an evidence-based process to make decisions. This study also contributes more weight to the accumulating evidence that intuition is a valuable component of decisionmaking for homeopathic practitioners.