Activity, socket fit, comfort and community participation in lower limb prosthesis users: a Cambodian cohort study.

BACKGROUND: After amputation, many people become less active, feel lonely and lose independence. Understanding the factors associated with low physical activity levels and participation could contribute to defining key interventions which can support prosthesis users so they can live a more active and socially included lifestyle. This longitudinal observational study aims to assess relationships between physical activity, community participation, prosthetic fit, comfort and user satisfaction using actimetry, 3D scans and questionnaires in a Cambodian cohort of established lower limb prosthesis users. METHODS: Twenty participants (5F:15M, nine transfemoral, eleven transtibial, 24-60 years old and 3-43 years since amputation) were recruited. They completed a questionnaire which included their demographics, community participation, prosthesis satisfaction and comfort at the start of the study, and between three and six months later. Their prosthetic sockets and residual limbs were 3D scanned at the start and end of the study. Accelerometers were embedded under the cosmesis on the shank of the prosthesis, to collect ten weeks of activity data. RESULTS: Participants averaged 4470 steps/day (743-7315 steps/day), and wore their prosthesis for most waking hours, averaging 13.4 h/day (4.5-17.6 h/day). Self-reported measures of activity and hours of wear correlated with these accelerometer data (Spearman's rho rs = 0.59, and rs = 0.71, respectively). Participants who were more active wore their prosthesis for more hours/day (Pearson r = 0.73) and were more satisfied with socket fit (rs = 0.49). A longer residual limb correlated with better community participation (rs = 0.56) and comfort (rs = 0.56). Self-reported community participation did not correlate with a person's activity level (rs = 0.13), or their prosthesis comfort (rs = 0.19), and there was only weak correlation between how important the activity was to an individual, and how often they participated in it (rs = 0.37). A simple 0-10 scale of overall comfort did not provide enough detail to understand the types and severity of discomfort experienced. CONCLUSION: Associations between perceived and measured activity levels correlated with socket satisfaction in this cohort of people with established lower limb amputations. The small sample size means these correlations should be interpreted with caution, but they indicate variables worthy of further study to understand barriers to community engagement and physical activity for prosthesis users in Cambodia, and potentially in other settings.

Using lived experience to develop a personal narrative workshop programme in order to aid mental health recovery.

Background: According to Slade's Personal Recovery Framework, mental health recovery involves developing a positive identity, reframing experiences, developing self-management and valued social roles.Aim: This study explored how developing a personal narrative can support mental health recovery through reframing and developing a more positive identity. This paper provides an overview of the study's three phases and the resultant Personal Narrative Workshop Programme.Method: Phase 1 involved developing and analysing my own recovery narrative using autoethnography. Phase 2 used Participatory Action Research (PAR) to explore the experience of other service users, with co-researchers recruited to two focus groups. Six co-researchers continued into Phase 3 (three cycles of PAR) to develop the workshop programme.Results: An eight-session workshop programme was co-produced and fully documented.Conclusions: Developing a narrative is not benign: it can involve reliving trauma; and dealing with the 'voice of others' in our narratives can be difficult. As a result, the workshop programme aimed to provide a supportive environment, promoting collaboration and validation. Methodological issues resulted from the complexities of using a PAR approach, and on the multiplicity of roles for the researcher.

PARTICIPATORY DESIGN OF PEDIATRIC UPPER LIMB PROSTHESES: QUALITATIVE METHODS AND PROTOTYPING.

OBJECTIVES: The study aims to develop an understanding of the views of children and adolescents, parents, and professionals on upper limb prosthetic devices to develop and improve device design. Previous research has found that children are dissatisfied with prostheses but has relied heavily on parent proxy reports and quantitative measures (such as questionnaires) to explore their views. METHODS: Thirty-four participants (eight children aged 8-15 years with upper limb difference, nine parents, eight prosthetists, and nine occupational therapists) contributed to the development of new devices through the BRIDGE methodology of participatory design, using focus groups and interviews. RESULTS: The study identified areas for improving prostheses from the perspective of children and adolescents, developed prototypes based on these and gained feedback on the prototypes from the children and other stakeholders (parents and professionals) of paediatric upper limb prostheses. Future device development needs to focus on ease of use, versatility, appearance, and safety. CONCLUSIONS: This study has demonstrated that children and adolescents can and should be involved as equal partners in the development of daily living equipment and that rapid prototyping (three-dimensional printing or additive manufacturing), used within a participatory design framework, can be a useful tool for facilitating this.

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.

Development of the ECLIPSE model of meaningful outcome domains following lower limb amputation and prosthetic rehabilitation, through systematic review and best fit framework synthesis.

BACKGROUND: Little is known about which outcome domains characterise meaningful recovery following prosthetic rehabilitation and should be measured. Our previous qualitative work developed a conceptual model of outcome domains which are meaningful to patients. This qualitative synthesis aims to develop that model by exploring views and experiences of recovery captured in the limb loss literature, and use these to produce a second iteration of the model describing outcome domains of importance following prosthetic rehabilitation from the patient's perspective. METHODS: Systematic searches were conducted using CINAHL, Psychinfo and Web of Science from 2011 to early 2023. Studies with a qualitative design focusing on views and experiences of lower limb prosthetic users were eligible for inclusion. Quality was assessed using the CASP tool. 'Best Fit' framework synthesis was used to synthesise the evidence and develop the conceptual model. RESULTS: 40 studies were included, describing the experiences of 539 participants. Data supported the pre-existing conceptual model and led to development of four of the five domains. The newly named ECLIPSE model describes meaningful outcome domains as 1) Being able to participate in important activities and roles, 2) Participating in the way I want to, 3) My prosthesis works for me, 4) If I am in pain, I can manage it, and 5) I am able to accept my new normal. Studies came from 15 countries showing good coverage of high-income settings. Few participants from low-and-middle-income countries were included, it is unclear if the ECLIPSE model describes outcome domains of importance in these settings. CONCLUSIONS: This synthesis provides a rigorous foundation for understanding outcome domains of importance following lower limb prosthetic rehabilitation from the patient's perspective. The ECLIPSE model is an accessible representation of recovery which could direct rehabilitation programmes, as well as inform the evaluation of prosthetic care through the selection of outcome measures.

A qualitative study exploring the ritual-like activity and therapeutic relationship between Pilates teachers and clients with persistent low back pain.

BACKGROUND AND PURPOSE: Pilates is a commonly recommended exercise modality for the management of persistent low back pain. Whilst guidelines recommend the use of exercise for low back pain, research suggests that no one exercise is superior, creating a question over the mechanism of effect. The patient-practitioner relationship may be important in managing low back pain; however, the relationship between Pilates teachers and clients is not well understood. The purpose of this study was to identify the components of the relationship between Pilates teachers and clients with persistent low back pain, explore key influences on the relationship, and ascertain the nature of the relationship. METHOD: We conducted a qualitative, ethnographically-informed study at eight sites in the South of England, observing 24 Pilates sessions and interviewing 9 Pilates teachers and 10 clients with persistent low back pain. Fieldnotes and interview transcripts were analysed thematically. RESULTS: The findings demonstrate a complex, multi-faceted interaction that occurs during Pilates sessions, grounded within certain health perceptions, and predicated on expectations of individuality, choice and expertise. A key finding reveals the perceived importance of mastery of prescribed movements with control and precision, in which clients particularly value the authority of the teacher in a directive learning environment. CONCLUSION: We contend that the role of the Pilates teacher in this study facilitated the alleviation of clients' distress through the application of ritual-like Pilates activity. We conclude that the relationship between Pilates teachers and clients with persistent low back pain may be considered a therapeutic relationship.

Working with partial hand prostheses: An investigation into experiences of clinicians.

BACKGROUND: Individuals living with partial hand absence often face challenges in performing everyday tasks and fully participating in society. Prosthetic devices offer a range of benefits, including improved functionality or cosmesis. However, partial hand devices can be rejected by users. In addition, there is a lack of evidence that establishes methods or factors influencing the clinical prescription of prosthetics specifically designed for this population. OBJECTIVES: The objectives of the investigation were to gain understanding of who is prescribing partial hand prosthetics and the factors which influence device selection. STUDY DESIGN: A 36-item anonymous online survey was designed on Qualtrics and distributed to clinicians. The survey contained multiple-choice, Likert-type, closed, and open-ended questions. METHODS: Quantitative and qualitative analyses were performed on Qualtrics and Microsoft Excel. RESULTS: Thirty-seven clinicians from various occupations participated. The majority agreed that outcome measures are useful for assessing partial hand prosthetics but suggested room for improvement. Although clinicians use various outcome measurement tools, there is a lack of tools specifically tailored to this population. Factors such as existing function, occupation, and hobbies were identified as important when selecting prosthetic devices for users. Funding influenced the range of partial hand devices available for prescription. CONCLUSIONS: The prescription process involves multiple stakeholders. Various factors, including funding and user satisfaction, must be considered in the decision-making process. There is a lack of specific outcome measures recommended for evaluating prosthetics in this population. However, providing loaner units before final prescription yields positive outcomes.

Meaningful Clinical Outcomes for Young People and Parents When Treated for Chronic Musculoskeletal Pain in the UK: Q Set Development.

Previous studies have established a core outcome set for pediatric chronic pain clinical trials. The aim of this research was to establish which outcomes young people and parents considered important to measure during treatment for chronic musculoskeletal pain. To the best of our knowledge, this is the first study to explore which outcomes could be used to tailor interventions within a clinical setting. Twenty-one young people (aged 11-18 years) and 21 parents were recruited from 2 UK hospital sites and took part in semi-structured interviews that incorporated drawing a timeline of their treatment. They identified positive and negative outcomes showing the perceived effectiveness of treatment. Informed by Q methodology, the words and phases of young people and parents were developed into 101 statements that were mapped onto the core outcome set and represented wide-ranging opinions regarding the outcomes they considered important (Q set). This approach helped identify additional statements related to "parent and family functioning" not routinely considered. Outcomes related to the treatment experience and adverse effects were highlighted as important, yet are not routinely prioritized in clinical research. Parents prioritized outcomes related to the treatment experience, whereas young people prioritized their overall well-being. Over the course of treatment, outcome focus changed, with some outcomes only deemed relevant at a specific time point. Overall, the research highlighted the need for clinical guidance on which outcome domains to measure during the treatment course to gauge treatment effectiveness and optimally tailor interventions. PERSPECTIVE: This study established the range of outcomes that were important to young people and their parents during treatment for chronic musculoskeletal pain. The findings show how young people and parents have different outcome preferences and how their outcome focus changes during the treatment course.

"You just want someone to help": Outcomes that matter to parents when their child is treated for chronic pain.

In children's chronic pain services, healthcare decisions involve a three-way interaction between the child, their parent or guardian, and the health professional. Parents have unique needs, and it is unknown how they visualize their child's recovery and which outcomes they perceive to be an indication of their child's progress. This qualitative study explored the outcomes parents considered important, when their child was undergoing treatment for chronic pain. A purposive sample of twenty-one parents of children receiving treatment for chronic musculoskeletal pain, completed a one-off semi-structured interview that involved drawing a timeline of their child's treatment. The interview and timeline content were analyzed using thematic analysis. Four themes are evident at different points of the child's treatment course. The "perfect storm" that described their child's pain starting, "fighting in the dark" was a stage when parents focused on finding a service or health professional that could solve their child's pain. The third stage, "drawing a line under it," changed the outcomes parents considered important, parents changed how they approached their child's pain and worked alongside professionals, focusing on their child's happiness and engagement with life. They watched their child make positive change and moved toward the final theme "free." The outcomes parents considered important changed over their child's treatment course. The shift described by parents during treatment appeared pivotal to the recovery of young people, demonstrating the importance of the role of parents within chronic pain treatment.

A nation-wide survey exploring the views of current and future use of functional electrical stimulation in spinal cord injury.

PURPOSE: Functional electrical stimulation (FES) can be effective in assisting physical and psychosocial difficulties experienced by people with spinal cord injury. Perceived benefits and barriers of the current and future use of FES within the wider spinal cord injury community is currently unknown. The main objective of this research was to explore the spinal cord injury community's views of the use of FES to decrease disability in rehabilitation programmes. MATERIALS AND METHODS: An online and paper questionnaire was distributed to people with spinal cord injury, health care professionals and researchers working in spinal cord injury settings in the United Kingdom. RESULTS: A total of 299 participants completed the survey (152 people with spinal cord injury, 141 health care professionals and 6 researchers). Common views between groups identified were: (1) FES can be beneficial in improving physical and psychosocial aspects and that (2) adequate support and training for FES application was provided to users. Barriers to FES use included a lack of staff time and training, financial cost and availability of the equipment. Sixty three percent of non-users felt they would use FES in the future if they had the opportunity. CONCLUSIONS: Users' views were important in identifying that FES application can be beneficial for people with spinal cord injury but also has some resourceful barriers. In order to increase use, future research should focus on reducing the cost of FES clinical service and also address implementation of awareness and training programmes within spinal units and community rehabilitation settings.IMPLICATIONS FOR REHABILITATIONUsers of functional electrical stimulation think that it is beneficial for improving physical and psychosocial limitations after spinal cord injuryBarriers to FES use include a lack of staff time and training, financial cost and availability of the equipment have been suggested by people with spinal cord injury and health care professionalsEducation and implementation programs for health care professionals and people with spinal cord injury are now necessary to increase the awareness about functional electrical stimulation applicationReduction of FES cost could also increase its uptake in spinal cord injury clinical services.

Experiences of lower limb prosthesis users in Kenya: a qualitative study to understand motivation to use and satisfaction with prosthetic outcomes.

PURPOSE: To explore the personal and system factors that motivate and enhance outcomes for patients accessing a prosthetic service and using a lower-limb prosthesis within a low resource setting. MATERIALS AND METHODS: This study employed a qualitative approach to explore the motivations and satisfaction of individuals with lower limb loss engaging with a prosthetic service in Mombasa, Kenya. In-depth interviews were conducted over Microsoft Teams with 10 lower limb prosthesis users and thematic analysis was applied. RESULTS: Five key themes emerged: acceptance, self-determination, hope, clinician relationship and perception. These findings demonstrate the importance of hopeful thinking and a supportive community in overcoming physical and stigmatising challenges. The findings further highlight the value of the service provider relationship beyond just prescribing an assistive device. CONCLUSION: These results have relevance in developing patient-centred services, assistive devices and personnel training that are responsive, motivating, and cognisant of the service user. This is of particular interest as assistive technology services are newly developed in low resource settings.IMPLICATIONS FOR REHABILITATIONThis research provides an understanding of lower-limb prosthesis users' satisfaction of a device and motivation for engaging with a prosthetic service within a low resource setting.The relationship the rehabilitation professional has with the service user plays a significant role in facilitating motivation during rehabilitation.Rehabilitation professionals should consider how they can foster a network of support amongst service users when planning services in remote, rural locations.Rehabilitation professionals should be aware of how hopeful thinking can be facilitated during rehabilitation to support motivation.When reviewing the success of services, or designing new service models, the service users should be consulted on what they would deem as a successful outcome.

"Otherwise he will be a beggar": a focus group study to understand the Perspectives of physiotherapists about measuring rehabilitation outcomes and impact in low-resource and conflict-affected settings.

PURPOSE: Rehabilitation outcomes are important for patients, professionals and policy makers. Most outcome measures (OMs) were developed for "Western" contexts and may be inadequate for low-resource and conflict settings, where the ability to demonstrate impact would be critical to strengthening the sector. This study aims to understand perspectives of physiotherapists from challenging environments regarding current practices, value, barriers, and facilitators of measuring rehabilitation outcomes. MATERIALS & METHODS: Focus group discussions were held in English with 35 physiotherapists from 18 countries. Audio recordings were transcribed verbatim, anonymised, and analysed using reflexive thematic analysis. RESULTS: Four themes emerged illustrating the levels at which outcomes and measures were discussed: User (patients, families), provider (physiotherapists, rehabilitation workers), application (OMs), and structure (management, health system). Participants discussed diversity in current practices and patient populations, utility of OMs and a neglected rehabilitation sector lacking investment. Barriers to progressing outcome measurement included lacking patient health literacy, rehabilitation provider training, valid OMs, and leadership. Participants suggested improved patient involvement, routine outcome measurement by using, developing, or adapting simple, context- and stakeholder-relevant OMs, and support from management. CONCLUSIONS: These insights illustrate the need of and provide robust recommendations for context-adapted development of rehabilitation outcome measurement in various challenging contexts.

Rehabilitation outcomes are important to show impact in low-resource and conflict settings, but most outcome measures originate from "Western" contextsExperience of physiotherapists from low-resource and conflict settings reveals the barriers and facilitators to measuring rehabilitation outcomes in their workplacesParticipants' suggest to use or develop simple scales that are contextualised and stakeholder-relevant for standard, routine measurementThis study highlights the need to improve the measurement of rehabilitation outcomes in challenging contexts and provides guidance on how to do so.

An exploration of athletes' views on their adherence to physiotherapy rehabilitation after sport injury.

OBJECTIVE: To explore athletes' perceptions of the factors that they feel may affect their adherence to a physiotherapy intervention. DESIGN: A qualitative design using semistructured interviews. SETTING: Participants were interviewed at home or their athletic club. PARTICIPANTS: 8 participants, 5 men and 3 women with a mean age of 30.4 y. RESULTS: Thematic analysis revealed 2 main categories of themes. The first relates to the athlete's perceptions of factors affecting his or her own adherence, with themes including the impact of injury, justification of adherence, and strategies used by the patient. The second relates to perceptions of the physiotherapist's impact on adherence, with themes relating to characteristics of and strategies used by the physiotherapist. CONCLUSIONS: Findings demonstrate the importance of exploring patients' perceptions of adherence. A number of factors that affect adherence are identified, and strategies that may enhance adherence suggested.

Non-oncological outcomes following limb salvage surgery in patients with knee sarcoma: a scoping review.

PURPOSE: Limb salvage surgery is a surgical procedure for tumour resection in bone and soft-tissue cancers. Guidelines aim to preserve as much function and tissue of the limb as possible. Surgical outcome data is routinely available as part of surgical reporting processes. What is less known are important non-oncological outcomes throughout recovery from both clinical and patient perspectives. The objective of this review was to explore non-oncological outcomes in patients diagnosed with sarcoma around the knee following limb salvage surgery. MATERIALS AND METHODS: A scoping review methodology was used, and results analysed using CASP checklists. RESULTS: Thirteen studies were included and following appraisal and synthesis, three themes emerged as providing important measures intrinsic to successful patient recovery: (1) physical function, (2) quality of life and, (3) gait and knee goniometry. Specifically, patients develop range of motion complications that alter gait patterns and patients often limit their post-operative participation in sport and leisure activities. CONCLUSIONS: This study has shown the importance of exploring confounding factors, adopting a holistic view of patient recovery beyond surgical outcomes, proposing evidence-based guidance to support and inform healthcare providers with clinical decision-making. This review highlights the paucity and lack of quality of research available, emphasising how under-represented this population is in the research literature.IMPLICATIONS FOR REHABILITATIONPatients having undergone LSS often have limited participation in sport and leisure activities.Patients can develop range of motion complications, such as flexion contracture or extension lag, which may affect the pattern of gait.Clinical consideration should be given to walking ability and gait patterns during the rehabilitation phase to prevent poor functional outcomes during recovery.Variation of treatment protocols, outcome measurement and rehabilitative care has been identified as important in predicting the outcomes in recovery from LSS procedures.

The lived experience of people with upper limb absence living in Uganda: A qualitative study.

Background: The impact of upper limb absence on people's lived experiences is understudied, particularly in African countries, with implications for policy and service design. Objectives: The objective of this study was to explore the lived experiences of people with upper limb absence (PWULA) living in Uganda. Method: Informed by preliminary work, we designed a qualitative study employing semi-structured interviews to understand the experience of living with upper limb absence in Uganda. Seventeen adults with upper limb absence were individually interviewed and their interviews were analysed utilising thematic analysis. Results: Seven themes illustrating the impact on the individual's life after amputation were identified and categorised into (1) living and adapting to life, (2) productivity and participation and (3) living within the wider environment. This study presents three main findings: (1) PWULA need psychological and occupational support services which are not available in Uganda, (2) PWULA want to work, but face multiple barriers to employment and has limited support, combined with the complex parenting and caring responsibilities, (3) the local Ugandan culture and social structures affect the everyday life of PWULA, both in positive and negative ways. Conclusion: This study provides information on the lived experiences of PWULA in Uganda which are lacking in the literature. People with upper limb absence face ableism and hardship underpinned by a lack of formal support structures and policies, which may in turn exacerbate the impact of upper limb absence on multiple facets of life.

Learning about the changing needs for prosthetics service provision from routinely collected digital centre management data: An exemplar study across three clinics in Cambodia.

Background: Prosthetic service development and delivery rely on data describing population needs. These needs are context-specific, but most existing data come from high-income countries or small geographic areas, which are often not comparable. This study analysed routinely collected digital patient record data at multiple time points to provide insights into characteristics of people accessing Cambodian prosthetic services. Methods: We investigated trends in birth year, sex, year and reason for limb absence, and prosthesis type, over three decades. Then, we observed data from 2005 and 2019 indicating how the population actively accessing prosthetics services has changed. Results: Temporal trends in prosthetics service user demographics corresponded with events in Cambodia's socio-political history. The predominant historical reason for limb absence prior to 2000 was weapon trauma during and following conflict. Since 2000, this was replaced by non-communicable disease and road accidents. Transtibial remained the most prevalent amputation level but transfemoral amputation had higher incidence for people with limb loss from road accidents, and people with limb loss due to disease were older. These observations are important as both transfemoral and older-aged groups experience particular rehabilitation challenges compared to the young, transtibial group. Conclusions: The study shows how standardised, routinely collected data across multiple clinics within a country can be used to characterise prosthetics service user populations and shows significant changes over time. This indicates the need to track client characteristics and provides evidence for adapting services according to population dynamics and changes in patient need.

The views of people with spinal cord injury about the use of functional electrical stimulation.

Functional electrical stimulation (FES) is a specialist technique that can be applied in several areas of spinal rehabilitation. The aim of the study was to explore views of people with spinal cord injuries (SCI), health care professionals specializing in SCI, and researchers in FES about the current and future use of FES. A qualitative design using eight focus groups lasting 90 to 120 min was carried out throughout the UK. Purposive sampling was used to ensure diversity in age, level of SCI, severity of injury, and experience using FES. Thematic analysis identified five key themes. Decisions to use FES related to concerns over the screening and suitability of FES, ensuring parity between patients, and offering FES at the right stage of rehabilitation. Positive aspects of using FES related to themes regarding "physical improvements" and "doing something active." Barriers to using FES concerned a lack of resources, such as equipment and staff training, and the view that some FES devices were unreliable. This research highlights the importance of understanding the user's needs in the design of FES devices; improving provision, prescription and allocation of FES resources, and the need to consider psychosocial issues related to the initiation and use of FES.

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

BACKGROUND: Patients 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. METHODS: A 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. RESULTS: Participants 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. CONCLUSIONS: These 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.

Exploring the Outcomes That Matter Most to Young People Treated for Chronic Pain: A Qualitative Study.

Global and national policies state that all children and young people should be part of decision making and that outcomes that matter to them should take priority, yet patient-centred outcomes have been identified as a gap in the paediatric chronic pain literature. This study gave youths experiencing chronic pain a platform to have their views heard. Using novel methods, twenty-one young people, aged 11 to 18 years old, completed a semi-structured interview in which they constructed a timeline drawing to symbolise their treatment. They identified when aspects of their life changed (outcomes) and described the importance of these changes. Thematic analysis identified four themes that emerged at different stages of the treatment: "perfect storm"; "turning points"; "disconnect"; and; "free". "Turning points" were points in time when the narrative of the young person took a turn in a different direction. At these points, the outcomes important to them also changed. Youths initially prioritised outcomes related to pain, then during treatment the focus became their emotional functioning, with role functioning and "going out" becoming the focus at the end. The stage of treatment as perceived by the young person impacted which outcomes mattered most.

A Focus Group Study to Understand the Perspectives of Physiotherapists on Barriers and Facilitators to Advancing Rehabilitation in Low-Resource and Conflict Settings.

Physiotherapy as a health profession is continuously evolving in high-income countries (HIC). The highest burden of disease globally, however, is in low-resource and conflict contexts (LR-CC), resulting in unmet rehabilitation needs. Rehabilitation service models from HIC often face challenges when applied to the fragile health systems of LR-CC. It is important to engage rehabilitation experts living and working in LR-CC to guide service development. This study aims to understand physiotherapists' views and perspectives of current rehabilitation services, of how these services can be strengthened over the next 10 years and of the role of physiotherapy within this development. Focus group discussions (FGDs) were conducted with 31 physiotherapists from 18 LR-CC using English as a common language. Audio recordings were transcribed verbatim. Data analysis was guided by thematic analysis. Participants provided deep insights into the complexity of developing rehabilitation services within fragile health systems. Participants agreed that physiotherapy lacked recognition and resources to be utilised effectively. Interacting themes as crucial prerequisites for strengthening the sector included (1) significance of context, (2) professional identity, and (3) professionalisation supported by workforce development and advocacy. These results are an important evidence base for informing the development of rehabilitation programmes in LR-CC and for future research.