This article presents an overview and appraisal of work published during the 25‐year history of Sociology of Health and Illness that has contributed to our understandings of lay experiences of health ...and illness. It highlights an important and welcome shift from an ‘outsider’ perspective as epitomised in the Parsonian concept of the ‘sick role’ to one that focuses directly upon people's subjective experiences within the contexts of their daily lives. Particular attention is paid to the ways in which early work by Bury (1982), Charmaz (1983), and Williams (1984) has helped pave the way to an understanding of lay experiences that is sensitive to a broad range of micro‐ and macro‐contextual influences. The article looks to the future as well as the past by pointing to ‘uncharted terrain’ and ‘missing voices’ within the medical sociology literature. It discusses some recently published work in the Journal that has opened the door to what may prove to be a 21st century sociology of health and illness. It concludes with a call for medical sociologists to be more open‐minded to the use of novel and seemingly unconventional theoretical and methodological approaches.
Some treatments after a disabling stroke increase the likelihood patients will survive longer but with significant disability. Patients and doctors should make collaborative decisions regarding these ...treatments. However, this can be challenging. To better understand treatment decision-making in acute disabling stroke, we explored the experiences, views and needs of stroke survivors in hospital and six months later.
Fifteen patients who had a disabling stroke were interviewed within a week of their diagnosis; eleven were re-interviewed six months later. Data were analysed thematically and longitudinally.
Patients' functional abilities prior to their stroke and need for hope of functional recovery appeared to impact on their involvement in decision-making. In the early period post stroke, patients who were functionally independent pre- stroke described being emotionally devastated and ill-prepared for the consequences of stroke. They appeared unaware that treatments offered might extend their life but with significant disability and took all treatments in the hope of functional recovery. Those who were dependent pre-stroke appeared to be more stoic, had considered treatment implications and decided against such treatments. At follow-up, all patients had varying unmet psychological needs which appeared to contribute to poor quality of life. In the early period post stroke, patients looked for various ways to cultivate and maintain hope of functional recovery. While patients continued to look for hope at six months, they also reported wishing they had been given realistic information in the early period after stroke in order to prepare for the consequences.
Stroke survivors may benefit from psychological support. A collaborative approach towards treatment decision-making may not be realistic in all patients especially when they may be emotionally distressed and looking to maintain a positive outlook. Communication strategies to balance maintaining hope without providing false hope may be appropriate. Patients' information needs may need reassessed at different time points.
Objective To explore views of patients with type 2 diabetes about self monitoring of blood glucose over time.Design Longitudinal, qualitative study.Setting Primary and secondary care settings across ...Lothian, Scotland.Participants 18 patients with type 2 diabetes.Main outcome measures Results from repeat in-depth interviews with patients over four years after clinical diagnosis.Results Analysis revealed three main themes—the role of health professionals, interpreting readings and managing high values, and the ongoing role of blood glucose self monitoring. Self monitoring decreased over time, and health professionals' behaviour seemed crucial in this: participants interpreted doctors' focus on levels of haemoglobin A1c, and lack of perceived interest in meter readings, as indicating that self monitoring was not worth continuing. Some participants saw readings as a proxy measure of good and bad behaviour—with women especially, chastising themselves when readings were high. Some participants continued to find readings difficult to interpret, with uncertainty about how to respond to high readings. Reassurance and habit were key reasons for continuing. There was little indication that participants were using self monitoring to effect and maintain behaviour change.Conclusions Clinical uncertainty about the efficacy and role of blood glucose self monitoring in patients with type 2 diabetes is mirrored in patients' own accounts. Patients tended not to act on their self monitoring results, in part because of a lack of education about the appropriate response to readings. Health professionals should be explicit about whether and when such patients should self monitor and how they should interpret and act upon the results, especially high readings.
Introduction
In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to ...complications and this management approach is now being questioned, with growing interest in maximising patients' short‐term quality‐of‐life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision‐making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality‐of‐life.
Methods
We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12–16 weeks later. Data were analysed using a framework approach.
Results
Both participant groups (SM/ERC) reported substantial, negative quality‐of‐life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals.
Conclusion
Study findings can be used to support informed decision‐making about SM/ERC management of dens fractures in older/frail patients.
Patient or Public Contribution
Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings.
When children with type 1 diabetes approach adolescence, they are encouraged to become more involved in diabetes self-management. This study explored the challenges pre-adolescent children encounter ...when self-managing diabetes and the factors which motivate and enable them to take on new diabetes-related tasks. A key objective was to inform the support offered to pre-adolescent children.
In-depth interviews using age-appropriate questioning with 24 children (aged 9-12 years) with type 1 diabetes. Data were analysed using an inductive, thematic approach.
Children reported several barriers to taking on self-management tasks. As well as seeking respite from managing diabetes, children described relying on their parents to: perform the complex maths involved in working out carbohydrate content in food; calculate insulin doses if they did not use a bolus advisor; and administer injections or insert a cannula in hard-to-reach locations. Children described being motivated to take on diabetes tasks in order to: minimise the pain experienced when others administered injections; alleviate the burden on their parents; and participate independently in activities with their peers. Several also discussed being motivated to take on diabetes-management responsibilities when they started secondary school. Children described being enabled to take on new responsibilities by using strategies which limited the need to perform complex maths. These included using labels on food packaging to determine carbohydrate contents, or choosing foods with carbohydrate values they could remember. Many children discussed using bolus advisors with pre-programmed ratios and entering carbohydrate on food labels or values provided by their parents to calculate insulin doses. Several also described using mobile phones to seek advice about carbohydrate contents in food.
Our findings highlight several barriers which deter children from taking on diabetes self-management tasks, motivators which encourage them to take on new responsibilities, and strategies and technologies which enable them to become more autonomous. To limit the need to perform complex maths, children may benefit from using bolus advisors provided they receive regular review from healthcare professionals to determine and adjust pre-programmed insulin-to-carbohydrate ratios. Education and support should be age-specific to reflect children's changing involvement in self-managing diabetes.
Background
Cancer is rare amongst adolescents and young adults (AYA). Previous research has reported (healthy) AYA’s knowledge of risk factors and symptoms as limited, with this potentially leading ...to delays in help‐seeking and diagnosis.
Objectives
We explored AYA’s views on their cancer knowledge prior to diagnosis and if/how they perceived this as having affected their experiences of diagnosis and care.
Methods
We interviewed 18 AYA diagnosed with cancer (aged 16‐24 years). Interviews were recorded and transcribed verbatim. We undertook qualitative descriptive analysis, exploring both a priori topics and emergent themes, including cancer knowledge prior to diagnosis.
Results
Adolescents and young adults characterized their knowledge of cancer and treatment prior to diagnosis and treatment initiation as limited and superficial. AYA perceived gaps in their knowledge as having profound consequences throughout their cancer journey. These included: hindering recognition of symptoms, thereby delaying help‐seeking; impeding understanding of the significance of tests and referrals; amplifying uncertainty on diagnosis; and affording poor preparation for the harsh realities of treatment.
Conclusions
Adolescents and young adults perceived their limited cancer knowledge prior to diagnosis as affecting experiences of diagnosis and initial/front‐line care. These findings prompt consideration of whether, when and how, AYA’s knowledge of cancer might be improved. Two broad approaches are discussed: universal education on AYA cancer and/or health; and targeted education (enhanced information and counselling) at and after diagnosis.
Patient or Public Contribution
Our work was informed throughout by discussions with an advisory group, whose membership included AYA treated for cancer.
Limited attention has been paid to adolescents and young adults' (AYA's) experiences in the aftermath of a cancer diagnosis, despite this being a time when potentially life-changing decisions are ...made. We explored AYA's and caregivers' experiences of, and views about, making treatment and trial participation decisions following a cancer diagnosis, in order to understand, and help facilitate, informed treatment decision-making in this age group.
Interviews were undertaken with 18 AYA diagnosed, or re-diagnosed, with cancer when aged 16-24 years, and 15 parents/caregivers. Analysis focused on the identification and description of explanatory themes.
Most AYA described being extremely unwell by the time of diagnosis and, consequently, experiencing difficulties processing the news. Distress and acceleration in clinical activity following diagnosis could further impede the absorption of treatment-relevant information. After referral to a specialist cancer unit, many AYA described quickly transitioning to a calm and pragmatic mind-set, and wanting to commence treatment at the earliest opportunity. Most reported seeing information about short-term side-effects of treatment as having limited relevance to their recovery-focused outlook at that time. AYA seldom indicated wanting to make choices about front-line treatment, with most preferring to defer decisions to health professionals. Even when charged with decisions about trial participation, AYA reported welcoming a strong health professional steer. Parents/caregivers attempted to compensate for AYA's limited engagement with treatment-relevant information. However, in seeking to ensure AYA received the best treatment, these individuals had conflicting priorities and information needs.
Our study highlights the challenging context in which AYA are confronted with decisions about front-line treatment, and reveals how their responses make it hard to ensure their decisions are fully informed. It raises questions about the direct value, to AYA, of approaches that aim to promote decision-making by improving understanding and recall of information, though such approaches may be of value to caregivers. In seeking to improve information-giving and involvement in treatment-related decision-making at diagnosis, care should be taken not to delegitimize the preference of many AYA for a directive approach from trusted clinicians.
People with type 1 diabetes who attend structured education training in self-management using flexible intensive therapy achieve improved blood glucose control and experience fewer episodes of severe ...hypoglycaemia. However, many struggle to sustain these improvements over time. To inform the design of more effective follow-up support we undertook a review of qualitative studies which have identified factors that influence and inform participants' self-management behaviours after attending structured education and their need for support to sustain improvements in glycaemic control.
We undertook a meta-ethnography of relevant qualitative studies, identified using systematic search methods. Studies were included which focused on participants' experiences of self-managing type 1 diabetes after attending structured education which incorporated training in flexible intensive insulin therapy. A line of argument approach was used to synthesise the findings.
The search identified 18 papers from six studies. The studies included were judged to be of high methodological quality. The line of argument synthesis developed the Follow-Up Support for Effective type 1 Diabetes self-management (FUSED) model. This model outlines the challenges participants encounter in maintaining diabetes self-management practices after attending structured education, and describes how participants try to address these barriers by adapting, simplifying or personalising the self-management approaches they have learned. To help participants maintain the skills taught during courses, the FUSED model presents ten recommendations abstracted from the included papers to provide a logic model for a programme of individualised and responsive follow-up support.
This meta-ethnography highlights how providing skills training using structured education to people with type 1 diabetes does not necessarily result in participants adopting and sustaining recommended changes in behaviour. To help people sustain diabetes self-management skills after attending structured education, it is recommended that support be provided over the longer-term by appropriately trained healthcare professionals which is responsive to individuals' needs. Although developed to inform support for people with type 1 diabetes, the FUSED model provides a framework that could also be applied to support individuals with other long term conditions which require complex self-management skills to be learned and sustained over time.
PROSPERO registration: CRD42017067961 .
This paper is based upon interviews with twenty-seven women and men who have an inherited risk of developing gastric cancer and have had their stomach removed as a preventative measure. We describe ...what happens when bodily processes – digestion - are disrupted by the removal of the stomach. Interviewees' who had undergone prophylactic total gastrectomy experienced changes to the lived experience of hunger and appetite. The interviewees' accounts of life post-surgery suggested that private sensations of hunger (i.e. internalised feelings of hunger) disappeared following gastrectomy and in most cases never reappeared. The majority of interviewees described an alternative sense of hunger as developing over time. This externalised or disembodied hunger was described as triggered by a range of extracorporeal or external bodily criteria rather than internal sensations. We argue that this externally motivated desire for food, generated from without rather than within, serves the same purpose as internally generated feelings of hunger - it encourages eating, which sustains the body. Interviewees reported not only having to learn when to consume food following PTG, but also what to eat by adapting to what they perceived as their body's food tolerances and changing tastes. We argue that these changes in the lived experience of hunger and appetite may affect individuals' ability to participate in commensal relationships following gastrectomy, and that this may have negative consequences for identity.
Around 60,000 babies are born preterm (prior to 37 weeks' gestation) each year in the UK. There is little evidence on the optimal birth mode (vaginal or caesarean section).
The overall aim of the ...CASSAVA project was to determine if a trial to define the optimal mode of preterm birth could be carried out and, if so, determine what sort of trial could be conducted and how it could best be performed. We aimed to determine the specific groups of preterm women and babies for whom there are uncertainties about the best planned mode of birth, and if there would be willingness to recruit to, and participate in, a randomised trial to address some, but not all, of these uncertainties. This project was conducted in response to a Heath Technology Assessment programme commissioning call (17/22 'Mode of delivery for preterm infants').
We conducted clinician and patient surveys (
= 224 and
= 379, respectively) to identify current practice and opinion, and a consensus survey and Delphi workshop (
= 76 and
= 22 participants, respectively) to inform the design of a hypothetical clinical trial. The protocol for this clinical trial/vignette was used in telephone interviews with clinicians (
= 24) and in focus groups with potential participants (
= 13).
Planned sample size and data saturation was achieved for all groups except for focus groups with participants, as this had to be curtailed because of the COVID-19 pandemic and data saturation was not achieved. There was broad agreement from parents and health-care professionals that a trial is needed. The clinician survey demonstrated a variety of practice and opinion. The parent survey suggested that women and their families generally preferred vaginal birth at later gestations and caesarean section for preterm infants. The interactive workshop and Delphi consensus process confirmed the need for more evidence (hence the case for a trial) and provided rich information on what a future trial should entail. It was agreed that any trial should address the areas with most uncertainty, including the management of women at 26-32 weeks' gestation, with either spontaneous preterm labour (cephalic presentation) or where preterm birth was medically indicated. Clear themes around the challenges inherent in conducting any trial emerged, including the concept of equipoise itself. Specific issues were as follows: different clinicians and participants would be in equipoise for each clinical scenario, effective conduct of the trial would require appropriate resources and expertise within the hospital conducting the trial, potential participants would welcome information on the trial well before the onset of labour and minority ethnic groups would require tailored approaches.
Given the lack of evidence and the variation of practice and opinion in this area, and having listened to clinicians and potential participants, we conclude that a trial should be conducted and the outlined challenges resolved.
The CASSAVA project could be used to inform the design of a randomised trial and indicates how such a trial could be carried out. Any future trial would benefit from a pilot with qualitative input and a study within a trial to inform optimal recruitment.
Certainty that a trial could be conducted can be determined only when it is attempted.
Current Controlled Trials ISRCTN12295730.
This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in
; Vol. 25, No. 61. See the NIHR Journals Library website for further project information.
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