Background: People with multiple sclerosis (MS) have varied experiences and approaches to self‐management. This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research.Methods: A meta‐synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO. We incorporated feedback from team members with MS as expert patient knowledge‐users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease.Results: Of 1680 unique articles, 77 met the inclusion criteria. We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS. These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health‐care sector; and work, social and family life).Conclusion: The majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge. Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning.

Surveys of GPs are essential to facilitate future planning and delivery of health services. However, recruitment of GPs into research has been disappointing with response rates declining over recent years. This study identified factors that facilitated or hampered GP recruitment in a recent survey of Australian GPs where a range of strategies were used to improve recruitment following poor initial responses. GP response rates for different stages of the survey were examined and compared with reasons GPs and leaders of university research networks cited for non-participation. Poor initial response rates were improved by including a questionnaire in the mail-out, changing the mail-out source from an unknown research team to locally known network leaders, approaching a group of GPs known to have research and training interests, and offering financial compensation. Response rates increased from below 1% for the first wave to 14.5% in the final wave. Using a known and trusted network of professionals to endorse the survey combined with an explicit compensation payment significantly enhanced GP response rates. To obtain response rates for surveys of GPs that are high enough to sustain external validity requires an approach that persuades GPs and their gatekeepers that it is worth their time to participate.

Background: People with a rare disease commonly experience long delays from the onset of symptoms to diagnosis. Rare diseases are challenging to diagnose because they are clinically heterogeneous, and many present with non-specific symptoms common to many diseases. We aimed to explore the experiences of people with myositis, primary immunodeficiency (PID), and sarcoidosis from symptom onset to diagnosis to identify factors that might impact receipt of a timely diagnosis. Methods: This was a qualitative study using semi-structured interviews. Our approach was informed by Interpretive Phenomenological Analysis (IPA). We applied the lens of uncertainty management theory to tease out how patients experience, assess, manage and cope with puzzling and complex health-related issues while seeking a diagnosis in the cases of rare diseases. Results: We conducted interviews with 26 people with a rare disease. Ten participants had been diagnosed with a form of myositis, 8 with a primary immunodeficiency, and 8 with sarcoidosis. Time to diagnosis ranged from 6 months to 12 years (myositis), immediate to over 20 years (PID), and 6 months to 15 years (sarcoidosis). We identified four themes that described the experiences of participants with a rare disease as they sought a diagnosis for their condition: (1) normalising and/or misattributing symptoms; (2) particularising by clinicians; (3) asserting patients’ self-knowledge; and (4) working together through the diagnosable moment. Conclusions: Managing medical uncertainty in the time before diagnosis of a rare disease can be complicated by patients discounting their own symptoms and/or clinicians discounting the scale and impact of those symptoms. Persistence on the part of both clinician and patient is necessary to reach a diagnosis of a rare disease. Strategies such as recognising pattern failure and accommodating self-labelling are key to diagnosis.

Background: In the last decade, diabetes management has begun to transition to technology-based care, with young people being the focus of many technological advances. Yet, detailed insights into the experiences of young people and their caregivers of using technology to manage type 1 diabetes mellitus are lacking. Objective: The objective of our study was to describe the breadth of experiences and perspectives on diabetes technology use among children and adolescents with type 1 diabetes mellitus and their caregivers. Methods: This systematic literature review used integrated thematic analysis to guide a narrative synthesis of the included studies. We analyzed the perspectives and experiences of young people with type 1 diabetes mellitus and their caregivers reported in qualitative studies, quantitative descriptive studies, and studies with a mixed methods design. Results: Seventeen articles met the inclusion criteria, and they included studies on insulin pump, glucose sensors, and remote monitoring systems. The following eight themes were derived from the analysis: (1) expectations of the technology prior to use, (2) perceived impact on sleep and overnight experiences, (3) experiences with alarms, (4) impact on independence and relationships, (5) perceived usage impact on blood glucose control, (6) device design and features, (7) financial cost, and (8) user satisfaction. While many advantages of using diabetes technology were reported, several challenges for its use were also reported, such as cost, the size and visibility of devices, and the intrusiveness of alarms, which drew attention to the fact that the user had type 1 diabetes mellitus. Continued use of diabetes technology was underpinned by its benefits outweighing its challenges, especially among younger people. Conclusions: Diabetes technologies have improved the quality of life of many young people with type 1 diabetes mellitus and their caregivers. Future design needs to consider the impact of these technologies on relationships between young people and their caregivers, and the impact of device features and characteristics such as size, ease of use, and cost.

The terms integration and integrated care describe the complex, patient-centred strategies to improve coordination of healthcare services. Frameworks exist to conceptualise these terms, but these have been developed from a professional viewpoint. The objective of this study was to explore consumers’ and providers’ concepts, expectations and experience of integrated care. A key focus was whether frameworks developed from a professional perspective are effective models to explore people’s experiences. A qualitative pilot study was undertaken at one Australian multidisciplinary primary health care centre. Semi-structured interviews were conducted with consumers (N = 19) and staff (N = 10). Data were analysed using a framework analysis approach. Consumers’ experience of integrated care tended to be implicit in their descriptions of primary healthcare experiences more broadly. Experiences related to the typologies involved clinical and functional integration, such as continuity of providers and the usefulness of shared information. Staff focused on clinical level integration, but also talked about a cultural shift that demonstrated normative, professional and functional integration. Existing frameworks for integration have been heavily influenced by the provider and organisational perspectives. They are useful for conceptualising integration from a professional perspective, but are less relevant for consumers’ experiences. Consumers of integrated primary health care may be more focussed on relational aspects of care and outcomes of care.