Maggie Donovan-Hall

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.

Expectations of rehabilitation following lower limb amputation: a qualitative study

Abstract Purpose: To explore the expectations of patients about to undergo prosthetic rehabilitation following a lower limb amputation. Method: Design: Qualitative study using semi structured interviews. Setting: Interviews were conducted at two district general hospitals. Participants: Eight patients who had undergone a major lower limb amputation due to vascular insufficiency were interviewed within two weeks of their amputation. All patients had been referred for prosthetic rehabilitation. Results: Five key themes emerged from the interviews: uncertainty, expectations in relation to the rehabilitation service, personal challenges, the prosthesis and returning to normality. These findings illustrate how participants faced uncertainty both pre- and postoperatively and often looked towards established amputees for the provision of accurate information. Conclusions: As no previous research has specifically explored patients’ expectations following an amputation, this study adds valuable insight into the patient experience. Patient expectations following lower limb amputation appeared to be vague and uninformed which may lead to uncertainty and passivity. It was found that patients did not know what to expect in relation to the rehabilitation process. They expected to return to a normal life following an amputation and this expectation appeared to be an important coping mechanism. Patient information and discussions should form an important part of the rehabilitation process before as well as during prosthetic rehabilitation, to help shape realistic expectations. This will allow patients to take a more active, informed role in the process. Psychoeducation interventions (talking) appears to be as important as “walking” within prosthetic rehabilitation services. Implications for Rehabilitation Patients’ expectations following lower limb amputation need to be informed by the rehabilitation team and established amputees from an early stage as part of the short- and long-term process of adjustment following amputation. Patient expectations of a return to normality appear to be an important part of coping following lower limb amputation, exploration of a new normal, both physically and psychosocially should be addressed as part of the rehabilitation process.

Uncertainty prior to pulmonary rehabilitation in primary care A phenomenological qualitative study in patients with chronic obstructive pulmonary disease

Pulmonary rehabilitation (PR) is recommended for patients functionally restricted by chronic obstructive pulmonary disease (COPD). However, attendance and adherence to PR remains suboptimal. No previous research has explored COPD patient experiences during the key period from referral to initiation of PR in the United Kingdom. This research aimed to explore the lived experience of COPD patients referred to PR programmes prior to participation. COPD participants were recruited from referrals to two community PR programmes. Semi-structured interviews with COPD participants occurred following PR referral, but prior to programme initiation. Data were analyzed using applied interpretive phenomenology. Twenty-five COPD participants aged 42–90 were interviewed. ‘Uncertainty’ affected participants throughout their lived experience of COPD that negatively impacted illness perceptions, PR perceptions and increased participant’s panic and anger. Participants who perceived COPD less as a chronic condition and more as a cyclical process experienced fewer feelings of panic or anger. The experience of uncertainty was disabling for these COPD participants. Recognition of the role that uncertainty plays in patients with COPD is the first step towards developing interventions focused on reducing this uncertainty, thereby reducing the burden of the disease for the individual patient and facilitating PR attendance.

People's Perceptions and Beliefs about their Ability to Exercise with Rheumatoid Arthritis: A Qualitative Study

Background: Randomised controlled trials have shown exercise benefits people’s general health. For individuals living with Rheumatoid Arthritis (RA), various factors may influence their ability or willingness to exercise (MaraditKremers et al., 2005; Wolfe et al., 2008). Objectives: The aim of this study was to gain an understanding of the perceptions and beliefs about the ability to exercise in people with RA. Methods: Six participants aged between 39-76 years with various stages of RA were recruited from the National Rheumatoid Arthritis Society (NRAS). A focus group lasting 60 minutes was run to explore people’s perceptions and beliefs about exercising with RA. Questions had been derived from relevant literature and had been piloted. The focus group was recorded and transcribed verbatim and thematic analysis was used to code the data and identify pertinent themes. Results: Seven distinct themes were identified. These were; the belief that specific symptoms prevented exercise, medication modifies the ability to exercise; frustration from not being able to take exercise; benefits of taking exercise; limitations to participation during exercise class; fear of pain or catching colds/infection and conflict in advice from health professionals. All six participants reported they understood the benefits of exercise and each enjoyed taking an appropriate form of exercise. All participants agreed that certain types of exercise could improve their muscle strength but believed that dynamic and weight-bearing exercise would damage their joints. Conclusions: The findings suggest that people with RA want to exercise and believe that their medication helps them achieve this. However it was evident that people with RA receive conflicting advice from health care professionals about what is appropriate exercise and alongside fear of pain, joint damage and infection could limit people’s willingness to engage with exercise. References: Maradit-Kremers H, Crowson C, Nicola P Ballman KV, roger VL, Jacobson SJ, Gabriel SE (2005). Increased unrecognized coronary heart disease and sudden deaths in rheumatoid arthritis: a population-based cohort study. Arthritis and Rheumatism 52: 402–411. Wolfe F, Michaud K (2008) The risk of myocardial infarction and pharmacologic and nonpharmacologic myocardial infarction predictors in rheumatoid arthritis: a cohort and nested case control analysis. Arthritis Rheumatology 58: 26122621 DOI: 10.1002/art.23811. Acknowledgedments: I am grateful to Dr J Adams and Dr M Donovan-Hall for supervising this project and allowing me to perform my studies within the Faculty of Health Sciences, University of Southampton, and providing continual support, advice and encouragement throughout the project. I would like to thank Hannah Haywood for all the assistance given to me. Ailsa Bosworth Chief Director, National Rheumatoid Arthritis Society, for all their support and thank you to the participants whom without their co-operation I would not have succeeded with this project. Disclosure of Interest: None Declared

A Qualitative Study Exploring the Causes of Boredom for Men with a Psychosis in a Forensic Setting

ABSTRACT Boredom is a problem in forensic mental health settings and is believed to increase levels of violence and be detrimental to health and recovery. There were 8 men in a forensic unit, all diagnosed with a psychotic disorder, that were interviewed regarding their experiences of boredom. A thematic analysis was used to identify emergent themes. These included: Mental health and motivation; Restrictive environment; Responsibilities; and Nothing to do. These findings provide a greater understanding of factors which may contribute to boredom within forensic settings and can guide occupational therapy interventions to address them.

The thoughts and feelings held by clinicians about the delivery of a placebo thumb splint in an osteoarthritis rehabilitation trial

Background The use of a placebo thumb base splint in an osteoarthritis trial is novel and may help identify specific and non-specific effects of hand splinting. This study aimed to explore the thoughts and feelings of trial clinicians who would be delivering a placebo splint to understand their perspective and to identify how these feelings may affect them personally, professionally and practically. Methods Three senior Occupational Therapists selected from a purposive sample of trial collaborators participated in a focus group interview. Structured questions were used to elicit debate and discussion and three designs of placebo splint developed for this trial were available for consideration. The 60-min audio recorded focus group was transcribed verbatim, validated and underwent thematic analysis. Results Four main themes were identified; justification of placebo thumb splint use in this research, anxiety about causing of harm, preconceptions about thumb splint activity, and the practicalities of convincing placebo thumb splint delivery. This last theme was broken down into three sub-themes: anxiety about ‘selling’ the splint, the therapeutic relationship in splint delivery, and training requirements for splint delivery. Conclusions Clinicians have anxieties and practical concerns regarding delivering placebo splints in a clinical effectiveness trial for rehabilitation for thumb base osteoarthritis. Tailored support and training throughout all stages of trial delivery is required to ensure their ability to deliver the intervention in a rigorous, unbiased manner.

FRI0589-HPR People’s perceptions and beliefs about their ability to exercise with rheumatoid arthritis

Background Randomised controlled trials have shown exercise benefits people’s general health. For individuals living with Rheumatoid Arthritis (RA), various factors may influence their ability or willingness to exercise (Maradit-Kremers et al., 2005; Wolfe et al., 2008). Objectives The aim of this study was to gain an understanding of the perceptions and beliefs about the ability to exercise in people with RA. Methods Six participants aged between 39-76 years with various stages of RA were recruited from the National Rheumatoid Arthritis Society (NRAS). A focus group lasting 60 minutes was run to explore people’s perceptions and beliefs about exercising with RA. Questions had been derived from relevant literature and had been piloted. The focus group was recorded and transcribed verbatim and thematic analysis was used to code the data and identify pertinent themes. Results Seven distinct themes were identified. These were; the belief that specific symptoms prevented exercise, medication modifies the ability to exercise; frustration from not being able to take exercise; benefits of taking exercise; limitations to participation during exercise class; fear of pain or catching colds/infection and conflict in advice from health professionals. All six participants reported they understood the benefits of exercise and each enjoyed taking an appropriate form of exercise. All participants agreed that certain types of exercise could improve their muscle strength but believed that dynamic and weight-bearing exercise would damage their joints. Conclusions The findings suggest that people with RA want to exercise and believe that their medication helps them achieve this. However it was evident that people with RA receive conflicting advice from health care professionals about what is appropriate exercise and alongside fear of pain, joint damage and infection could limit people’s willingness to engage with exercise. References Maradit-Kremers H, Crowson C, Nicola P Ballman KV, roger VL, Jacobson SJ, Gabriel SE (2005). Increased unrecognized coronary heart disease and sudden deaths in rheumatoid arthritis: a population-based cohort study. Arthritis and Rheumatism 52: 402–411. Wolfe F, Michaud K (2008) The risk of myocardial infarction and pharmacologic and nonpharmacologic myocardial infarction predictors in rheumatoid arthritis: a cohort and nested case control analysis. Arthritis Rheumatology 58: 2612-2621 DOI: 10.1002/art.23811. Acknowledgements I am grateful to Dr J Adams and Dr M Donovan-Hall for supervising this project and allowing me to perform my studies within the Faculty of Health Sciences, University of Southampton, and providing continual support, advice and encouragement throughout the project. I would like to thank Hannah Haywood for all the assistance given to me. Ailsa Bosworth Chief Director, National Rheumatoid Arthritis Society, for all their support and thank you to the participants whom without their co-operation I would not have succeeded with this project. Disclosure of Interest None Declared