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 OutcomeABSTRACT
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 ResearchABSTRACT
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, FactualABSTRACT
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 ResearchABSTRACT
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 AdultABSTRACT
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 DesignABSTRACT
BACKGROUND: Manipulation under anaesthesia and arthroscopic capsular release are costly and invasive treatments for frozen shoulder, but their effectiveness remains uncertain. We compared these two surgical interventions with early structured physiotherapy plus steroid injection. METHODS: In this multicentre, pragmatic, three-arm, superiority randomised trial, patients referred to secondary care for treatment of primary frozen shoulder were recruited from 35 hospital sites in the UK. Participants were adults (≥18 years) with unilateral frozen shoulder, characterised by restriction of passive external rotation (≥50%) in the affected shoulder. Participants were randomly assigned (2:2:1) to receive manipulation under anaesthesia, arthroscopic capsular release, or early structured physiotherapy. In manipulation under anaesthesia, the surgeon manipulated the affected shoulder to stretch and tear the tight capsule while the participant was under general anaesthesia, supplemented by a steroid injection. Arthroscopic capsular release, also done under general anaesthesia, involved surgically dividing the contracted anterior capsule in the rotator interval, followed by manipulation, with optional steroid injection. Both forms of surgery were followed by postprocedural physiotherapy. Early structured physiotherapy involved mobilisation techniques and a graduated home exercise programme supplemented by a steroid injection. Both early structured physiotherapy and postprocedural physiotherapy involved 12 sessions during up to 12 weeks. The primary outcome was the Oxford Shoulder Score (OSS; 0-48) at 12 months after randomisation, analysed by initial randomisation group. We sought a target difference of 5 OSS points between physiotherapy and either form of surgery, or 4 points between manipulation and capsular release. The trial registration is ISRCTN48804508. FINDINGS: Between April 1, 2015, and Dec 31, 2017, we screened 914 patients, of whom 503 (55%) were randomly assigned. At 12 months, OSS data were available for 189 (94%) of 201 participants assigned to manipulation (mean estimate 38·3 points, 95% CI 36·9 to 39·7), 191 (94%) of 203 participants assigned to capsular release (40·3 points, 38·9 to 41·7), and 93 (94%) of 99 participants assigned to physiotherapy (37·2 points, 35·3 to 39·2). The mean group differences were 2·01 points (0·10 to 3·91) between the capsular release and manipulation groups, 3·06 points (0·71 to 5·41) between capsular release and physiotherapy, and 1·05 points (-1·28 to 3·39) between manipulation and physiotherapy. Eight serious adverse events were reported with capsular release and two with manipulation. At a willingness-to-pay threshold of £20â000 per quality-adjusted life-year, manipulation under anaesthesia had the highest probability of being cost-effective (0·8632, compared with 0·1366 for physiotherapy and 0·0002 for capsular release). INTERPRETATION: All mean differences on the assessment of shoulder pain and function (OSS) at the primary endpoint of 12 months were less than the target differences. Therefore, none of the three interventions were clinically superior. Arthoscopic capsular release carried higher risks, and manipulation under anaesthesia was the most cost-effective. FUNDING: The National Institute for Health Research Health Technology Assessment programme.
Subject(s)
Bursitis/therapy , Glucocorticoids/administration & dosage , Joint Capsule Release , Manipulation, Orthopedic , Physical Therapy Modalities , Secondary Care , Adult , Female , Humans , Injections, Intra-Articular , Male , Middle Aged , Range of Motion, Articular , Treatment Outcome , United KingdomABSTRACT
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 ResearchABSTRACT
OBJECTIVE: There is a large body of research exploring what it means for a person to live with chronic pain. However, existing research does not help us understand what it means to recover. We aimed to identify qualitative research that explored the experience of living with chronic pain published since 2012 and to understand the process of recovery. DESIGN: A synthesis of qualitative research using meta-ethnography. METHODS: We used the seven stages of meta-ethnography. We systematically searched for qualitative research, published since 2012, that explored adults' experiences of living with, and being treated for, chronic pain. We used constant comparison to distill the essence of ideas into themes and developed a conceptual model. RESULTS: We screened 1,328 titles and included 195 studies. Our conceptual model indicates that validation and reconnection can empower a person with chronic pain to embark on a journey of healing. To embark on this journey requires commitment, energy, and support. CONCLUSIONS: The innovation of our study is to conceptualize healing as an ongoing and iterating journey rather than a destination. Health interventions for chronic pain would usefully focus on validating pain through meaningful and acceptable explanations; validating patients by listening to and valuing their stories; encouraging patients to connect with a meaningful sense of self, to be kind to themselves, and to explore new possibilities for the future; and facilitating safe reconnection with the social world. This could make a real difference to people living with chronic pain who are on their own healing journeys.
Subject(s)
Chronic Pain , Adult , Anthropology, Cultural , Chronic Pain/therapy , Delivery of Health Care , Humans , Qualitative ResearchABSTRACT
AIM: To determine the reported outcome domains and measures used to assess lower limb orthopaedic surgery of ambulant children and young people with cerebral palsy (CP) and map these outcomes to the International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY) framework. METHOD: This updated scoping review included studies published between January 2016 and July 2019 in five databases: MEDLINE, PubMed, EMBASE, CINAHL, and the Cochrane Central Register of Controlled Trials. Studies were included if participants were ambulant individuals with CP aged between 0 and 20 years who had undergone lower limb orthopaedic surgery. Health outcome domains and measures were identified and classified using the ICF-CY framework. RESULTS: Forty-four eligible studies were identified with a total of 40 different outcome domains recorded. Among eligible studies, 44 (100%) measured body function and structural impairment and seven (16%) measured activity limitation and participation restriction. The most frequently reported outcome was gait pattern (n=37, 84%). Few studies reported adverse effects of surgery (n=13, 30%). Twenty-nine different outcome measures were identified. Patient-reported outcomes measures were used in 10 studies (23%). INTERPRETATION: The review highlights a heterogeneity in the reported outcome domains and measures used in CP studies. The majority of the reported outcomes focus on the ICF-CY domain of body function and structure. The review also highlights a notable shift towards patient-reported outcomes in recent years. Development of a core outcome set for lower limb orthopaedic surgery would guide researchers to use more consistent and complete measurement sets.
Subject(s)
Activities of Daily Living , Cerebral Palsy/surgery , Orthopedic Procedures , Child , Disability Evaluation , Humans , Outcome Assessment, Health CareABSTRACT
INTRODUCTION AND HYPOTHESIS: Pelvic organ prolapse (POP) affects the lives of many people. We aimed to systematically search for, identify and synthesize qualitative research that explores what it is like to live with POP and make this knowledge available for healthcare improvement. METHODS: We systematically searched Medline, PsychInfo, Embase and CINAHL, from inception to March 2020, for qualitative research exploring the experience of living with POP. We used meta-ethnography to synthesize findings. This is a conceptual approach to qualitative evidence synthesis. We used the recent guidelines for reporting meta-ethnography. RESULTS: We screened 3103 titles and 255 abstracts and included 37 primary studies. These incorporated the experience of 777 women, (aged 18 to 95 years) from a range of countries. We organized 162 ideas into 27 conceptual categories and 10 themes. We developed a conceptual model that helps us to understand the experience of pelvic organ prolapse. This model indicates that (1) the physical losses of POP are intricately linked to loss of identity; (2) women conceptualized POP as part of womanhood, yet also its thief; (3) there is a vicious cycle of taboo, silence and misunderstanding about POP and its treatment; (4) this silence is exacerbated by a feeling that POP is not taken seriously in healthcare. CONCLUSIONS: This meta-ethnography helps us to understand the experience of living with a POP. Our model illustrates the complex process of healthcare decision making. Further studies to explore the complexity of decision making from the perspective of patient and health professional are timely.
Subject(s)
Anthropology, Cultural , Pelvic Organ Prolapse , Delivery of Health Care , Female , Humans , Qualitative ResearchABSTRACT
BACKGROUND: Urinary incontinence (UI) is highly prevalent and affects the lives of many men and women. We aimed to conduct a qualitative evidence synthesis (QES) to explore the experience of living with UI and to develop a conceptual model that can help us to understand this experience, and the potential barriers to appropriate healthcare. METHODS: We used the methods of meta-ethnography developed by Noblit and Hare and recently refined for larger studies. Meta-ethnography involves identifying concepts from the studies and abstracting these concepts into a line of argument. We searched for studies that explored the experience of adults with UI. We used the GRADE-CERQual framework to assess confidence in review findings. RESULTS: We screened 2307 titles, 429 abstracts, 107 full texts and included 41 studies (36 unique samples) in the synthesis. We organised the concepts into 26 conceptual categories, which we further abstracted into 6 themes: (1) Am I ill or is this normal? (2) It effects who I am and how I feel; (3) I feel stigmatised, ashamed and guilty; (4) talking can be difficult but it can help; (5) keeping incontinence under control; (6) have I got to the point that I need help? Our model conceptualises living with UI as navigating antagonists: Is UI normal or am I ill? Do I need help or am I managing? Do I keep UI to myself (and manage alone) or do I tell other people (and get the support that I need)? Do I use control strategies that focus on concealing (avoid risky situations, wear pads) versus, I use strategies that focus on improving the bodily function to improve continence. Our model highlights the experience of stigma, shame and guilt which exert a pull towards concealment. CONCLUSIONS: The culture of secrecy and profound sense of shame is barrier to seeking help. An environment which reduces the shame and stigma of UI may help people to switch the focus to strategies that will improve continence, rather than conceal incontinence.
Subject(s)
Anthropology, Cultural/methods , Internationality , Qualitative Research , Shame , Urinary Incontinence/ethnology , Urinary Incontinence/therapy , Anthropology, Cultural/standards , Female , Humans , Male , Surveys and Questionnaires , Urinary Incontinence/diagnosisABSTRACT
Advances in health care mean that we can now treat diseases that once cut lives short. However, the increase in life expectancy has not been matched by improvements in quality of life. The World Health Organization warns us that all countries should prepare to meet the challenges of an aging population and this is integral to the United Nations 2030 Agenda for Sustainable Development. This may require a shift in attitude toward aging. We aimed to use meta-ethnography to explore the experience of adults living beyond the age of 80. Our conceptual model illuminates the phenomenon of connection in older age and reflects on the paradox of time: ephemeral, yet interminable. Our findings encourage us to reflect on the influence of enlightenment philosophies that underpin the desire for autonomy at all costs. Our study challenges the stereotypes of old age and has the potential to influence people's perspectives toward aging.
Subject(s)
Attitude , Healthy Aging , Quality of Life/psychology , Aged, 80 and over , Aging , Anthropology, Cultural , Healthy Aging/psychology , Humans , Life ExpectancyABSTRACT
Using an example of qualitative research embedded in a non-surgical feasibility trial, we explore the benefits of including qualitative research in trial design and reflect on epistemological challenges. We interviewed 18 trial participants and used methods of Interpretive Phenomenological Analysis. Our findings demonstrate that qualitative research can make a valuable contribution by allowing trial stakeholders to see things from alternative perspectives. Specifically, it can help to make specific recommendations for improved trial design, generate questions which contextualize findings, and also explore disease experience beyond the trial. To make the most out of qualitative research embedded in quantitative design it would be useful to (a) agree specific qualitative study aims that underpin research design, (b) understand the impact of differences in epistemological truth claims, (c) provide clear thematic interpretations for trial researchers to utilize, and (d) include qualitative findings that explore experience beyond the trial setting within the impact plan.
ABSTRACT
Studies that systematically search for and synthesise qualitative research are becoming more evident in health care, and they can make an important contribution to patient care. Our team was funded to complete a meta-ethnography of patients' experience of chronic musculoskeletal pain. It has been 25 years since Noblit and Hare published their core text on meta-ethnography, and the current health research environment brings additional challenges to researchers aiming to synthesise qualitative research. Noblit and Hare propose seven stages of meta-ethnography which take the researcher from formulating a research idea to expressing the findings. These stages are not discrete but form part of an iterative research process. We aimed to build on the methods of Noblit and Hare and explore the challenges of including a large number of qualitative studies into a qualitative systematic review. These challenges hinge upon epistemological and practical issues to be considered alongside expectations about what determines high quality research. This paper describes our method and explores these challenges. Central to our method was the process of collaborative interpretation of concepts and the decision to exclude original material where we could not decipher a concept. We use excerpts from our research team's reflexive statements to illustrate the development of our methods.
Subject(s)
Anthropology, Cultural/methods , Chronic Pain , Musculoskeletal Pain , Attitude to Health , Biomedical Research , Humans , Qualitative ResearchABSTRACT
AIM: To review systematically and integrate the findings of qualitative research to increase our understanding of patients' experiences of chronic pelvic pain. BACKGROUND: Chronic pelvic pain is a prevalent pain condition with a high disease burden for men and women. Its multifactorial nature makes it challenging for clinicians and patients. DESIGN: Synthesis of qualitative research using meta-ethnography. DATA SOURCES: Five electronic bibliographic databases from inception until March 2014 supplemented by citation tracking. Of 488 papers retrieved, 32 met the review aim. REVIEW METHODS: Central to meta-ethnography is identifying 'concepts' and developing a conceptual model through constant comparison. Concepts are the primary data of meta-ethnography. Two team members read each paper to identify and collaboratively describe the concepts. We next compared concepts across studies and organized them into categories with shared meaning. Finally, we developed a conceptual model, or line of argument, to explain the conceptual categories. RESULTS: Our findings incorporate the following categories into a conceptual model: relentless and overwhelming pain; threat to self; unpredictability, struggle to construct pain as normal or pathological; a culture of secrecy; validation by diagnosis; ambiguous experience of health care; elevation of experiential knowledge and embodiment of knowledge through a community. CONCLUSION: The innovation of our model is to demonstrate, for the first time, the central struggle to construct 'pathological' vs. 'normal' chronic pelvic pain, a struggle that is exacerbated by a culture of secrecy. More research is needed to explore men's experience and to compare this with women's experience.
Subject(s)
Attitude to Health , Chronic Pain/ethnology , Chronic Pain/psychology , Pelvic Pain/psychology , Adolescent , Adult , Aged , Aged, 80 and over , Anthropology, Cultural , Causality , Chronic Pain/nursing , Comorbidity , Endometriosis/epidemiology , Endometriosis/psychology , Female , Humans , Male , Middle Aged , Models, Nursing , Pelvic Pain/ethnology , Pelvic Pain/nursing , Prostatitis/epidemiology , Prostatitis/psychology , Qualitative Research , Young AdultABSTRACT
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 healthcare 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. METHOD: This was a secondary thematic analysis of 46 qualitative interviews conducted online/by telephone to explore primary care practitioners' 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 do not want to alienate people by saying the wrong thing; the system needs to support trauma-informed care; and delivering trauma-informed care takes work that can have an impact on practitioners. CONCLUSION: Primary 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.
ABSTRACT
BACKGROUND: Studies that systematically search for and synthesise qualitative research are becoming more evident in health care, and they can make an important contribution to patient care. However, there is still no agreement as to whether, or how we should appraise studies for inclusion. We aimed to explore the intuitive processes that determined the 'quality' of qualitative research for inclusion in qualitative research syntheses. We were particularly interested to explore the way that knowledge was constructed. METHODS: We used qualitative methods to explore the process of quality appraisal within a team of seven qualitative researchers funded to undertake a meta-ethnography of chronic non-malignant musculoskeletal pain. Team discussions took place monthly between October 2010 and June 2012 and were recorded and transcribed. Data was coded and organised using constant comparative method. The development of our conceptual analysis was both iterative and collaborative. The strength of this team approach to quality came from open and honest discussion, where team members felt free to agree, disagree, or change their position within the safety of the group. RESULTS: We suggest two core facets of quality for inclusion in meta-ethnography - (1) Conceptual clarity; how clearly has the author articulated a concept that facilitates theoretical insight. (2) Interpretive rigour; fundamentally, can the interpretation 'be trusted?' Our findings showed that three important categories help the reader to judge interpretive rigour: (ii) What is the context of the interpretation? (ii) How inductive is the interpretation? (iii) Has the researcher challenged their interpretation? CONCLUSIONS: We highlight that methods alone do not determine the quality of research for inclusion into a meta-ethnography. The strength of a concept and its capacity to facilitate theoretical insight is integral to meta-ethnography, and arguably to the quality of research. However, we suggest that to be judged 'good enough' there also needs to be some assurance that qualitative findings are more than simply anecdotal. Although our conceptual model was developed specifically for meta-ethnography, it may be transferable to other research methodologies.
Subject(s)
Anthropology, Cultural/methods , Intuition , Meta-Analysis as Topic , Research Personnel/psychology , Biomedical Research , Chronic Pain , Decision Making , Humans , Musculoskeletal Diseases/diagnosis , Musculoskeletal Diseases/ethnology , Musculoskeletal Diseases/therapy , Psychological Theory , Qualitative Research , Quality Assurance, Health CareABSTRACT
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 CareABSTRACT
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 â123 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.