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1.
Br J Gen Pract ; 2024 Jun 10.
Article in English | MEDLINE | ID: mdl-38858098

ABSTRACT

BACKGROUND: There is an intricate relationship between the mind and the body in experiences of health and wellbeing. This can result in complexity of both symptom presentation and experience. Although the contribution of life trauma to illness experience is well described, this is not always fully recognised or addressed in health care encounters. Negotiating effective and acceptable trauma informed conversations can be difficult for clinicians and patients. AIM: To explore the experience of primary care practitioners caring for women through a trauma informed care lens. DESIGN AND SETTING: Qualitative study in the general practice setting of England, with reflections from representatives of a group with lived experience of trauma. METHODS: A secondary thematic analysis of 46 qualitative interviews conducted online/by telephone to explore primary care practitioner's experiences of supporting women's health needs in general practice, alongside consultation with representatives of a lived experience group to contextualise the findings. RESULTS: Four themes were constructed: you prioritise physical symptoms because you don't want to miss something; you don't want to alienate people by saying the wrong thing; the system needs to support trauma informed care; delivering trauma informed care takes work which can impact on practitioners. CONCLUSION: Health Care Practitioners are aware of the difficulties in discussing the interface between trauma and illness with patients, and request support and guidance in how to negotiate this supportively. Lack of support for practitioners moves the focus of trauma informed care from a whole systems approach towards individual clinician - patient interactions.

2.
Br J Pain ; 17(6): 592-605, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37969135

ABSTRACT

Background: Although multiple measures of the causes and consequences of chronic non-cancer pain (CNCP) are available and can inform pain management, no quantitative summary of these measures can describe the meaning of pain for a patient. The lived experience of pain tends to be a blind spot in pain management. This study aimed to: (1) integrate qualitative research investigating the lived experience of a range of CNCP conditions; (2) establish common qualitative themes in CNCP experience; and (3) evaluate the relevance of our results through a survey questionnaire based on these themes, administered across the United Kingdom. Methods: Four bibliographic databases were searched from inception to February 2021 to identify Qualitative Evidence Syntheses (QES) that investigated the lived experience of CNCP and its impact on everyday life and activities. Themes and trends were derived by thematic qualitative analysis in collaboration with two patient and public involvement representatives who co-created twenty survey statements. The survey was developed for testing the QES themes for validity in people living with pain. Results: The research team identified and screened 1323 titles, and considered 86 abstracts, including 20 in the final review. Eight themes were developed from the study findings: (1) my pain gives rise to negative emotions; (2) changes to my life and to myself; (3) adapting to my new normal; (4) effects of my pain management strategies; (5) hiding and showing my pain; (6) medically explaining my pain; (7) relationships to those around me; and (8) working while in pain. Each theme gave rise to one or two survey questions. The survey was shared with members of the UK pain community over a 2-week period in November 2021, and was completed by 1219 people, largely confirming the above themes. Conclusion/Implications: This study provides a validated summary of the lived experience of CNCP. It highlights the adverse nature, complications, and consequences of living with CNCP in the UK and the multiple shortcomings in the ways in which pain is addressed by others in the UK. Our findings are consistent with published meta-ethnographies on chronic non-malignant musculoskeletal pain and chronic low-back pain. Despite the underrepresentation of qualitative research in the pain literature compared to quantitative approaches, for understanding the complexity of the lived experience of pain, qualitative research is an essential tool.

3.
Hand Ther ; 28(4): 121-132, 2023 Dec.
Article in English | MEDLINE | ID: mdl-38033524

ABSTRACT

Introduction: We aimed to synthesise the experiences of people living with hand osteoarthritis (HOA) and the perceptions of clinicians and carers relating to the quality of life and treatment services. Methods: We undertook a systematic search on MEDLINE, Embase, and CINAHL electronic databases for qualitative studies in HOA. We used the Critical Appraisal Skills Programme (CASP) checklist to assess methodological quality and thematically-synthesise the findings. We used GRADE-CERQual (Grading of Recommendations Assessment, Development, and Evaluation- Confidence in the Evidence from Reviews of Qualitative Research) to assess the quality of the evidence. Results: We identified 13 studies involving people with HOA (288 women and 39 men, average age 61.4 years) and clinicians. Five themes were identified from studies involving people with HOA: i) My hands are painful whenever I use them; ii) It stops me doing everyday activities; iii) It stops me doing things I value; iv) It's psychologically challenging and v) I find ways of doing things. The quality of evidence was moderate except for pain with low quality of evidence. Most studies were conducted in Europe and the United Kingdom with participants recruited predominantly from hospital settings. We were not able to synthesise the three studies that involved clinicians as each explored different topics of HOA. There were no studies that involved carers. Conclusions: Our findings highlighted the impact of HOA in various areas of life and the need for personalised psychological support in practice.

4.
Br J Gen Pract ; 73(735): e760-e768, 2023 10.
Article in English | MEDLINE | ID: mdl-37722855

ABSTRACT

BACKGROUND: A consultation for the Women's Health Strategy for England in 2022 highlighted a need to understand and develop how general practice can support women's health needs. AIM: To understand the perspectives and experiences of primary care practitioners (PCPs) about supporting women's healthcare needs. DESIGN AND SETTING: Interpretive qualitative research set in general practice in England. METHOD: PCPs working in general practice settings were recruited through research and professional networks. Semi-structured interviews were conducted via telephone or Microsoft Teams, audiorecorded, transcribed verbatim, and analysed through reflexive thematic analysis. RESULTS: In total, 46 PCPs were interviewed. Participants had a range of roles and worked in a variety of primary care settings. Results are presented within six themes: 1) being alongside a person from cradle to grave; 2) maintaining the balance between general and specialist skills; 3) generalists and specialists combined make more than the sum of their parts; 4) striving for equity in a collapsing system; 5) firefighting with limited resources; and 6) the GP is being cast as the villain. CONCLUSION: The findings show that relationships and advocacy are valued as fundamental for women's health in general practice, and highlight the adverse impact of threats to these on staff and services. Developing specialist roles and bespoke services can foster staff wellbeing and could support retention. However, care is needed to ensure that service configuration changes do not result in clinician deskilling or rendering services inaccessible. Care is needed when services evolve to ensure that core aspects of general practice are not diminished or devalued. GP teams are well placed to advocate for their patients, including commitment to seeking equitable care, and these skills and specialist knowledge should be actively recognised, valued, and nurtured.


Subject(s)
Delivery of Health Care , Women's Health , Female , Humans , Qualitative Research , England , Primary Health Care
5.
BMC Pediatr ; 23(1): 373, 2023 07 22.
Article in English | MEDLINE | ID: mdl-37481537

ABSTRACT

BACKGROUND: Adolescent idiopathic scoliosis (AIS) is a common spinal deformity with physical and psychosocial implications for adolescents. The aim of this qualitative evidence synthesis (QES) was to systematically search for, identify, and synthesise qualitative research in order to improve our understanding of what it is like to live with AIS and to facilitate empathetic and effective healthcare. METHODS: We systematically searched 4 databases (Medline, EMBASE, PsycINFO and CINAHL) and used the 7 phases of meta-ethnography to synthesise qualitative evidence including studies with children and adolescents, and additional viewpoints from parents about the experience of AIS. RESULTS: We distilled 7 themes. (1) Diagnosis turned time on its head revolves around the AIS diagnosis and the uncertainty of the future that accompanied it. (2) Usual activities no longer the same explores how activities and participation in everyday life are impacted by AIS. (3) Hiding my body describes the pervasive struggle with self-image and appearance. (4) I want to feel normal again explores adolescents' desire to return to 'normality' and challenges of feeling different. (5) Balancing isolation and support considers the relationships in the adolescents' lives alongside their feelings of isolation. (6) Trying to keep control of treatment decisions explores how adolescents and their parents strive to feel in control. (7) Fearing surgery yet feeling hopeful focused on the apprehension and fear around spinal surgery and the beacon of hope it represented. CONCLUSIONS: Our QES contributes to the understanding of the adolescent experience of living with AIS. From our findings, clinicians can better understand the physical and psychosocial obstacles and the challenges faced throughout the journey of AIS to inform their clinical interactions with these patients.


Subject(s)
Kyphosis , Scoliosis , Child , Humans , Adolescent , Anthropology, Cultural , Emotions , Qualitative Research , Databases, Factual
6.
Age Ageing ; 52(6)2023 06 01.
Article in English | MEDLINE | ID: mdl-37366330

ABSTRACT

BACKGROUND: a change in attitude towards ageing is needed. Arts-based research (ABR) refers to the use of any creative art in research. ABR can provide an environment to reflect on challenging social issues and has the potential to make lasting impressions. OBJECTIVE: we aimed to explore the use of ABR to disseminate findings from a qualitative evidence synthesis exploring what it means to live well beyond the age of 80. DESIGN: ABR using art as a stimulus for recorded discussions and written annotations. SETTING: a mixed catchment state secondary school in the UK. SUBJECTS: fifty-four secondary school pupils aged 14-15. The majority identified as female (ratio 5:1). METHODS: school pupils created artwork to represent themes about ageing drawn from a qualitative evidence synthesis. The artwork was a stimulus for recorded discussions. We used thematic analysis to develop themes about children's response to ageing. RESULTS: we developed six themes. Pupils found comfort in recognising that old age can be lived well; they began to see themselves in the older person; they explored the ambiguous nature of memory; they highlighted the dangers of disconnection; they affirmed a need to restore connection with elders and they recognised the need to cherish time and live meaningfully. CONCLUSIONS: this project encouraged pupils to think about what it means to grow old. ABR has the potential to contribute to a more positive relationship with older people and towards ageing. Research stakeholders should not undervalue the potential power of shifts in perspective for powering social change.


Subject(s)
Aging , Schools , Humans , Female , Aged , United Kingdom , Qualitative Research
7.
Br J Gen Pract ; 73(732): e511-e518, 2023 07.
Article in English | MEDLINE | ID: mdl-37130614

ABSTRACT

BACKGROUND: Each woman's experience of the perimenopause and/or menopause is individual and unique. Research shows women from ethnic minorities often have different experiences from their White peers, and these are not being considered in conversations about the menopause. Women from ethnic minorities already face barriers to help-seeking in primary care, and clinicians have expressed challenges in cross cultural communication including the risk that women from ethnic minorities' perimenopause and/or menopause health needs are not being met. AIM: To explore primary care practitioners' experiences of perimenopause and/or menopause help-seeking among women from ethnic minorities. DESIGN AND SETTING: A qualitative study of 46 primary care practitioners from 35 practices across 5 regions of England, with patient and public involvement (PPI) consultations with 14 women from three ethnic minority groups. METHOD: Primary care practitioners were surveyed using an exploratory approach. Online and telephone interviews were conducted and the data were analysed thematically. The findings were presented to three groups of women from ethnic minorities to inform interpretation of the data. RESULTS: Practitioners described a lack of awareness of perimenopause and/or menopause among many women from ethnic minorities, which they felt impacted their help-seeking and communication of symptoms. Cultural expressions of embodied experiences could offer challenges to practitioners to 'join the dots' and interpret experiences through a holistic menopause care lens. Feedback from the women from ethnic minorities provided context to practitioner findings through examples from their individual experiences. CONCLUSION: There is a need for increased awareness and trustworthy information resources to help women from ethnic minorities prepare for the menopause, and clinicians to recognise their experiences and offer support. This could improve women's immediate quality of life and potentially reduce future disease risk.


Subject(s)
Ethnic and Racial Minorities , Perimenopause , Female , Humans , Ethnicity , Quality of Life , Minority Groups , Menopause , Qualitative Research , Primary Health Care
8.
EClinicalMedicine ; 58: 101918, 2023 Apr.
Article in English | MEDLINE | ID: mdl-37007734

ABSTRACT

Background: The UK's 'First do no harm' report highlighted missed opportunities to prevent harm and emphasised the need to incorporate patient voices into healthcare. Due to concerns about, and the subsequent suspension, of vaginal mesh for urinary incontinence thousands of women face the decision about mesh removal surgery. The aim of this study was to explore and understand the experience of living with complications attributed to vaginal mesh surgery so that this knowledge can contribute to improvements in care for those considering mesh, or mesh removal, surgery. Methods: This study was embedded in the 'PURSUE' study which explored the experiences of 74 people with urogynaecological conditions in the UK (30th April 2021-17th December 2021). Of these 74 people, fifteen women reported complications that they attributed to vaginal mesh surgery. We used the six stages of reflexive thematic analysis to conceptualise these fifteen accounts. Findings: Our conceptual model anchors eight themes around two dualities: (1) body parts versus body whole, (2) dominant discourse versus marginal discourse. Our themes indicate that trust can be established through: (1) embodied healthcare that focuses on connecting with patients' lived experience, (2) dialectic communication that recognises patient experiences and remains open to alternative perspectives. Interpretation: This study raises some important issues for education and practice. Our findings can translate to other health settings where treatments aimed to provide care have caused harm. Funding: NIHR Policy Research Programme (NIHR202450).

9.
Osteoarthr Cartil Open ; 5(2): 100355, 2023 Jun.
Article in English | MEDLINE | ID: mdl-37020788

ABSTRACT

Objective: Osteoarthritis is the most common joint disease with treatment involving a multidisciplinary approach with pharmacological, physical therapies and surgery as options. Qualitative research can help us to understand the complexity of managing health conditions and this understanding plays a role in good clinical practice. We aimed to systematically search for, identify, and synthesise qualitative research exploring the experience of living with osteoarthritis, including decision making about joint replacement. Methods: We comprehensively searched 4 bibliographic databases and used the methods of meta-ethnography to synthesise qualitative research findings. We screened 10 â€‹123 titles, 548 abstracts, and 139 full texts. We included findings from 118 reports (105 unique samples) of at least 2534 adults living with osteoarthritis around the world. Results: We developed 7 themes: Becoming your own expert can be hard work; Living has become a careful balancing act; Medication is a double-edged sword; I have other things in my life to consider; You have to weigh up the odds of surgery; Surgery is the only effective option; and Surgery will give me a chance to live now. These findings have been drawn into a conceptual model reflecting a complex balancing act with tensions underpinning treatment decision making. Conclusions: Osteoarthritis is framed as a world where patients become their own expert about their management and healthcare choices. Our conceptual model highlights key tensions underpinning treatment decision-making. These findings provide clinicians with insight of the complex nature of these decisions and how they can help patients through shared decision making.

10.
Disabil Rehabil ; 45(1): 57-64, 2023 01.
Article in English | MEDLINE | ID: mdl-35019783

ABSTRACT

PURPOSE: To explore the perspectives of children with CP, their parents or carers, and health professionals on factors affecting expectations and perceptions of surgical outcomes for lower limb orthopaedic surgery. MATERIALS AND METHODS: Semi-structured interviews were conducted with 10 healthcare professionals, 10 children and young people with CP, and 8 parents. Interview data were analysed by content analysis supported by the Framework Approach using the International Classification of Functioning, Disability, and Health (ICF-CY). RESULTS: A comprehensive list of 10 factors including facilitators, barriers, motivational and demotivational factors were identified and categorized into two overreaching themes (Environmental and Personal factors): interdisciplinary collaboration, communication and information resources, holistic care, and shared goal setting are reported as environment facilitators of outcomes expectations. In contrast, reported barriers include lack of time and resources and divergent expectations. Personal motivators include family encouragement, patient's self-determination, and previous experiences, whereas personal demotivators include fear of a new environment. CONCLUSION: The recognition of potential factors influencing expectations and perceptions of surgical outcomes could assist clinical reasoning when planning surgical interventions for ambulant children with CP. If these factors are integrated into the healthcare practice, it will most likely enhance the positive stakeholders' experiences postoperatively.IMPLICATION FOR REHABILITATIONUnderstanding relevant stakeholders' experiences offer a positive contribution to holistic and person-centred approaches in healthcare.People with cerebral palsy and their caregivers require adequate information on surgery and post-surgical rehabilitation regime in order to reach informed decisions.Previous experiences can influence surgical expectations and subsequent perceptions of the outcome.


Subject(s)
Cerebral Palsy , Orthopedic Procedures , Orthopedics , Child , Humans , Adolescent , Cerebral Palsy/surgery , Cerebral Palsy/rehabilitation , Motivation , Qualitative Research , Treatment Outcome , Perception
11.
Dev Med Child Neurol ; 65(2): 254-263, 2023 02.
Article in English | MEDLINE | ID: mdl-35869637

ABSTRACT

AIM: To develop a core set of outcome domains to be measured in clinical studies on lower limb orthopaedic surgery for ambulant children with cerebral palsy (CP) that represents the priorities of an international multi-stakeholder group (children, parent/carers, and health professionals). METHOD: Potential outcome domains were identified through literature review and qualitative interviews with key stakeholders. These were scored in an international two-round Delphi survey, using a 9-point Likert scale. A final consensus meeting with key stakeholders agreed on the most important outcome domains and refined the core outcome set (COS). RESULTS: One hundred and sixty-one health professionals and 36 individuals with CP and their parents/carers rated 21 of 41 outcomes as important in the Delphi survey. The final consensus group agreed 19 outcomes within eight domains to be included in the final COS: pain and fatigue, lower limb structure, motor function, mobility (daily life activities), gait-related outcomes, physical activity, independence, and quality of life. INTERPRETATION: A COS for lower limb orthopaedic surgery for children with CP was developed. Incorporating this in the design of future clinical studies will provide a more holistic assessment of the impact of treatment while allowing meaningful comparisons and future synthesis of results from primary studies. WHAT THIS PAPER ADDS: Eight core outcome domains were identified as important to measure in future clinical research. Key stakeholders perceived pain, balance and fall, and independence as very important outcomes. Six contextual factors were identified as essential in surgical decision-making.


Subject(s)
Cerebral Palsy , Orthopedic Procedures , Child , Humans , Cerebral Palsy/surgery , Delphi Technique , Lower Extremity/surgery , Outcome Assessment, Health Care/methods , Quality of Life , Treatment Outcome
12.
BMC Musculoskelet Disord ; 23(1): 839, 2022 Sep 03.
Article in English | MEDLINE | ID: mdl-36057590

ABSTRACT

OBJECTIVES: The paper presents insights from the Community based Rehabilitation after Knee Arthroplasty (CORKA) trial. We aimed to explore physiotherapists and physiotherapy assistants' experiences of delivering a home-base exercise intervention following knee replacement surgery. We were particularly interested in the feasibility, potential benefits and barriers of a community-based exercise programme from the perspective of physiotherapists and physiotherapy assistants and to understand any constraints or training needs that arose.  DESIGN: Qualitative thematic analysis of semi-structured interviews.  SETTING: The Community based Rehabilitation after Knee Arthroplasty (CORKA) trial. PARTICIPANTS: Five physiotherapists and six physiotherapy assistants with a range of clinical experience. METHODS: Interviews were digitally recorded and transcribed verbatim. We used the stages of reflexive thematic analysis suggested by Braun and Clarke. One researcher conducted the interviewers whilst three researchers with experience in qualitative research methods contributed to the coding and analysis of data. RESULTS: We developed seven themes that help to understand the benefits and challenges of delivering treatment interventions in a person's home: seeing the person in their own world; thinking outside the cubicle;developing people skills; enjoying the above and beyond; treading a fine line between patient and friend; feeling outside my comfort zone; needing a support network. CONCLUSIONS: Treating people in their own homes facilitates a holistic approach. Our findings highlight areas for clinical education: (1) how do we help clinicians to tread the fine line between friend and professional (2) how do we balance the need to provide support and structure with the freedom to work creatively and independently?


Subject(s)
Physical Therapists , Exercise Therapy/methods , Humans , Physical Therapy Modalities , Qualitative Research , Research Design
13.
Pain ; 163(12): e1169-e1183, 2022 12 01.
Article in English | MEDLINE | ID: mdl-35504032

ABSTRACT

ABSTRACT: Osteoarthritis pain affects the lives of a large number of people around the world. Understanding other people's experience is integral to effective care, and qualitative research can have an important part to play in education and good clinical practice. We aimed to systematically search for, identify, and synthesise qualitative research exploring the experience of living with osteoarthritis to incorporate this knowledge into an educational resource. We comprehensively searched 4 bibliographic databases and used the methods of meta-ethnography to synthesise qualitative research findings. We screened 10,123 titles, 548 abstracts, and 139 full texts. We included findings from 118 reports (105 unique samples) of at least 2534 adults living with osteoarthritis around the world. We developed 7 themes from more than 600 findings: it is part of my life's tapestry; (yet) it is consuming me; it constrains my body and my occupations; I am becoming separated, yet dependent; I accept, but I will not let it define me; and (yet) this makes me feel less than the person I was. Our findings highlight the profound impact that osteoarthritis can have on people's lives and the struggle to hold onto a sense of self. They indicate that recognising these losses, and taking osteoarthritis seriously, is an integral part of effective health care. This finding may be transferable beyond this condition.


Subject(s)
Chronic Pain , Osteoarthritis , Adult , Humans , Anthropology, Cultural , Qualitative Research , Osteoarthritis/complications , Databases, Bibliographic
14.
Bone Jt Open ; 3(4): 321-331, 2022 Apr.
Article in English | MEDLINE | ID: mdl-35394369

ABSTRACT

AIMS: Osteoarthritis (OA) affecting the thumb carpometacarpal joint (CMCJ) is a common painful condition. In this study, we aimed to explore clinicians' approach to management with a particular focus on the role of specific interventions that will inform the design of future clinical trials. METHODS: We interviewed a purposive sample of 24 clinicians, consisting of 12 surgeons and 12 therapists (four occupational therapists and eight physiotherapists) who managed patients with CMCJ OA. This is a qualitative study using semi-structured, online interviews. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis. RESULTS: A total of 14 themes were developed, six of which were developed relating to the clinical management of CMCJ OA: 1) A flexible 'ladder' approach starting with conservative treatment first; 2) The malleable role of steroid injection; 3) Surgery as an invasive and risky last resort; 4) A shared and collaborative approach; 5) Treating the whole person; and 6) Severity of life impact influences treatment. The remaining eight themes were developed relating to clinical trial barriers and facilitators: 1) We need to embrace uncertainty; 2) You are not losing out by taking part; 3) It is difficult to be neutral about certain treatments; 4) Difficult to recruit to 'no treatment' ; 5) Difficult to recruit to a trial comparing no surgery to surgery; 6) Patients are keen to participate in research; 7) Burden on staff and participants; and 8) A enthusiasm for a variety of potential trial arms. CONCLUSION: Our findings contribute to a better understanding of how clinicians manage thumb CMCJ OA in their practice settings. Our study also provides useful insights informing the design of randomized clinical trials involving steroid injections and surgery in people with thumb CMCJ OA. Cite this article: Bone Jt Open 2022;3(4):321-331.

15.
Neurourol Urodyn ; 41(3): 724-739, 2022 03.
Article in English | MEDLINE | ID: mdl-35114012

ABSTRACT

AIM: To understand the experience of urinary tract infection (UTI) by synthesizing primary qualitative research findings and developing a conceptual model that illustrates this experience. METHOD: A systematic search of Medline, PsychInfo, Embase, and CINAHL from inception to August 2020 to find qualitative research exploring the experience of UTI. Qualitative evidence synthesis in the form of meta-ethnography was undertaken. Findings are reported in keeping with eMERGe guidance. RESULTS: We included 16 qualitative studies in the synthesis of evidence, providing data from over 1038 participants aged 13-97 years. We developed nine themes: the impact of UTI on my whole body; impact on quality of life, activities, and the associated psychological toll; I know my body and my experience has taught me when I need to seek care; worry and the transition to medicalization; antibiotics are a valuable treatment approach; antibiotics are a last resort; being heard, seen, and cared for with dignity; self-judgment; and the end of the road, a need for information and cure. These themes supported a conceptual model to illustrate the patient experience of UTI. CONCLUSIONS: The conceptual model communicates the wide and varied symptoms of patients' UTI experiences and how they process this and make care decision based on past health experiences. For some, there appears to be a sense of hopelessness and frustration. This model may be used to highlight the need for improvements in diagnostic and treatment pathways. Future research to further understand the nuances of acute, recurrent, and persistent UTI is needed.


Subject(s)
Quality of Life , Urinary Tract Infections , Anthropology, Cultural , Anti-Bacterial Agents , Female , Humans , Male , Qualitative Research
16.
Health Expect ; 25(3): 925-935, 2022 06.
Article in English | MEDLINE | ID: mdl-35083830

ABSTRACT

INTRODUCTION: Although several outcomes are commonly measured to assess the effect of surgery for young people with cerebral palsy (CP), these are selected mainly by health professionals and researchers. Including the perspectives of a broader range of stakeholders is an essential step towards determining important outcomes for assessment. This qualitative study involves the development of a core outcome set (COS) for lower limb orthopaedic surgery for ambulant children with CP. OBJECTIVE: This study aimed to identify outcomes that matter to children and young people with CP, their parents and healthcare professionals following lower limb orthopaedic surgery. METHODS: Semi-structured interviews were conducted with 10 healthcare professionals, 10 children and young people with CP and 8 parents. Interview data were analysed by content analysis supported by the International Classification of Functioning, Disability and Health (ICF-CY) supplemented by thematic analysis. FINDINGS: Thirty-one outcomes were identified in total, which were linked to eleven second-level ICF-CY categories. There were differences between stakeholder groups in preferences and expectations from surgical outcomes. Healthcare professionals and children with their parents identified 31 and 25 outcomes, respectively. Health outcomes valued by participants were lower limb alignment and symmetry, flexibility and muscle strength, mental health, fatigue, pain, function in life, mobility, participation, being independent, quality of life and adverse events. Compared to previous published trials, 10 new outcomes were revealed by this study. CONCLUSION: The researchers identified outcomes that are important to all stakeholders following lower limb orthopaedic surgery for ambulant CP. Including these outcomes in future studies would promote patient-centred care for children and young adults with CP. Findings will be used to inform an international Delphi survey and develop a COS in this field. PATIENT AND PUBLIC CONTRIBUTION: This study was informed by an advisory group including a young adult with CP and a parent of a child with CP. This group engaged in the design of the study and the information material to support the interview (information sheet and interview topic guide).


Subject(s)
Cerebral Palsy , Orthopedic Procedures , Adolescent , Cerebral Palsy/surgery , Child , Humans , Lower Extremity/surgery , Outcome Assessment, Health Care , Parents , Quality of Life , Young Adult
17.
Disabil Rehabil ; 44(23): 7237-7245, 2022 11.
Article in English | MEDLINE | ID: mdl-34651530

ABSTRACT

PURPOSE: The life expectancy of people with haemophilia is increasing due to improved medical care. This improvement is accompanied by the co-morbidities of ageing, which include musculoskeletal degeneration and the associated effect on proprioception and balance. This study aims to explore the views and everyday experiences of those living with haemophilia regarding this. MATERIALS AND METHODS: Nine people with moderate or severe haemophilia aged 43-58 years participated in semi-structured interviews and thematic analysis was used to examine the data. RESULTS: Participants described pain and reduced movement in joints as a result of repeated bleeds, which caused problems with mobility and balance. Constant vigilance of their surroundings together with the potential consequences of bleeds caused continual worry. Participants were resourceful in their strategies to cope with the effects of haemophilia, to reduce pain and to minimise the risk of falling. However, participants felt stigmatised because of their condition. CONCLUSION: People with haemophilia have difficulties with their mobility and balance that can increase their risk of falling. Healthcare professionals need to understand and address the physical and psycho-social factors that contribute to the risk of falls. A multi-disciplinary approach to devise effective strategies to counteract and monitor the risk of falls would be useful.Implications for RehabilitationHealthcare professionals should identify movements that are fearful and work on ways to increase confidence and ability to perform these.Healthcare professionals need to identify the recovery strategies used to maintain balance and build these movements into home exercise programmes.Effective pain reduction strategies, both pharmacological and non-pharmacological, need to be investigated and optimised.Footwear choice has implications for both pain reduction and balance and should be discussed in routine reviews.Optimising vision would maximise visual input to aid balance.


Subject(s)
Accidental Falls , Hemophilia A , Male , Humans , Accidental Falls/prevention & control , Hemophilia A/complications , Exercise Therapy , Fear , Pain
18.
Age Ageing ; 50(6): 2238-2245, 2021 11 10.
Article in English | MEDLINE | ID: mdl-34673923

ABSTRACT

BACKGROUND: Increase in life-expectancy is not necessarily matched by an increase in quality of life. OBJECTIVE: (1) To explore the quality of life of patients over the age of 85 in the second decade following unicompartmental knee replacement surgery (2) To understand the usefulness of a priori themes from an evidence synthesis as a framework for primary qualitative analysis. DESIGN: Qualitative Research. A hermeneutic phenomenological approach, using a priori themes as sensitising concepts. PARTICIPANTS: Adults over the age of 85 who were part of an outcomes study in the second decade following unicompartmental knee joint replacement. METHODS: Semi-structured interviews in people's homes. Transcripts were coded and data sorted using a priori themes as sensitising concepts. Data that did not fit these themes, or that added nuance, were analysed thematically through constant comparison. RESULTS: We interviewed seven white women and five white men, aged 85-100. Data resonated with a priori themes and supported additional themes that help us to understand older peoples' experience: (1) losing our autonomy can be challenging, so be kind; (2) we must take care of our own bodies and the NHS; (3) I am more afraid of not dying. CONCLUSIONS: Findings indicate that health outcomes for older people should incorporate measures of participation and well-being; they highlight the importance of kindness in healthcare; they indicate that older people do not want to place additional burden on the NHS, and this can act as a barrier to care; they support the need for open conversations about dying well.


Subject(s)
Arthroplasty, Replacement, Knee , Quality of Life , Aged , Aged, 80 and over , Anthropology, Cultural , Communication , Female , Humans , Male , Qualitative Research
19.
Trials ; 22(1): 678, 2021 Oct 07.
Article in English | MEDLINE | ID: mdl-34620194

ABSTRACT

BACKGROUND: Randomised controlled trials in surgery can be a challenge to design and conduct, especially when including a non-surgical comparison. As few as half of initiated surgical trials reach their recruitment target, and failure to recruit is cited as the most frequent reason for premature closure of surgical RCTs. The aim of this qualitative evidence synthesis was to identify and synthesise findings from qualitative studies exploring the challenges in the design and conduct of trials directly comparing surgical and non-surgical interventions. METHODS: A qualitative evidence synthesis using meta-ethnography was conducted. Six electronic bibliographic databases (Medline, Central, Cinahl, Embase and PsycInfo) were searched up to the end of February 2018. Studies that explored patients' and health care professionals' experiences regarding participating in RCTs with a surgical and non-surgical comparison were included. The GRADE-CERQual framework was used to assess confidence in review findings. RESULTS: In total, 3697 abstracts and 49 full texts were screened and 26 published studies reporting experiences of patients and healthcare professionals were included. The focus of the studies (24/26) was primarily related to the challenge of recruitment. Two studies explored reasons for non-compliance to treatment allocation following randomisation. Five themes related to the challenges to these types of trials were identified: (1) radical choice between treatments; (2) patients' discomfort with randomisation: I want the best treatment for me as an individual; (3) challenge of equipoise: patients' a priori preferences for treatment; (4) challenge of equipoise: clinicians' a priori preferences for treatment and (5) imbalanced presentation of interventions. CONCLUSION: The marked dichotomy between the surgical and non-surgical interventions was highlighted in this review as making recruitment to these types of trials particularly challenging. This review identified factors that increase our understanding of why patients and clinicians may find equipoise more challenging in these types of trials compared to other trial comparisons. Trialists may wish to consider exploring the balance of potential factors influencing patient and clinician preferences towards treatments before they start recruitment, to enable issues specific to a particular trial to be identified and addressed. This may enable trial teams to make more efficient considered design choices and benefit the delivery of such trials.


Subject(s)
Anthropology, Cultural , Attitude of Health Personnel , Health Personnel , Humans , Patient Selection , Qualitative Research
20.
BMJ Open ; 11(8): e052598, 2021 08 27.
Article in English | MEDLINE | ID: mdl-34452970

ABSTRACT

OBJECTIVES: To evaluate whether a home-based rehabilitation programme for people assessed as being at risk of a poor outcome after knee arthroplasty offers superior outcomes to traditional outpatient physiotherapy. DESIGN: A prospective, single-blind, two-arm randomised controlled superiority trial. SETTING: 14 National Health Service physiotherapy departments in the UK. PARTICIPANTS: 621 participants identified at high risk of a poor outcome after knee arthroplasty using a bespoke screening tool. INTERVENTIONS: A multicomponent home-based rehabilitation programme delivered by rehabilitation assistants with supervision from qualified therapists versus usual care outpatient physiotherapy. MAIN OUTCOME MEASURES: The primary outcome was the Late-Life Function and Disability Instrument (LLFDI) at 12 months. Secondary outcomes were the Oxford Knee Score (a disease-specific measure of function), Knee injury and Osteoarthritis Outcome Score Quality of Life subscale, Physical Activity Scale for the Elderly, 5 dimension, 5 level version of Euroqol (EQ-5D-5L) and physical function assessed using the Figure of 8 Walk test, 30 s Chair Stand Test and Single Leg Stance. RESULTS: 621 participants were randomised between March 2015 and January 2018. 309 were assigned to CORKA (Community Rehabilitation after Knee Arthroplasty) home-based rehabilitation, receiving a median five treatment sessions (IQR 4-7). 312 were assigned to usual care, receiving a median 4 sessions (IQR 2-6). The primary outcome, LLFDI function total score at 12 months, was collected for 279 participants (89%) in the home-based CORKA group and 287 participants (92%) in the usual care group. No clinically or statistically significant difference was found between the groups (intention-to-treat adjusted difference=0.49 points; 95% CI -0.89 to 1.88; p=0.48). There were no statistically significant differences between the groups on any of the patient-reported or physical secondary outcome measures at 6 or 12 months.There were 18 participants in the intervention group reporting a serious adverse event (5.8%), only one directly related to the intervention, all other adverse events recorded throughout the trial related to underlying chronic medical conditions. CONCLUSIONS: The CORKA intervention was not superior to usual care. The trial detected no significant differences, clinical or statistical, between the two groups on either primary or secondary outcomes. CORKA offers an evaluation of an intervention utilising a different service delivery model for this patient group. TRIAL REGISTRATION NUMBER: ISRCTN13517704.


Subject(s)
Arthroplasty, Replacement, Knee , Aged , Cost-Benefit Analysis , Humans , Physical Therapy Modalities , Prospective Studies , Quality of Life , Single-Blind Method , State Medicine
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