Serial Interviews Research Articles

Beyond professional boundaries: relationships and resources in health services' modernisation in England and Wales

This article draws on theories of social capital to understand ways in which the negotiation of professional boundaries among healthcare professionals relates to health services change. We compared reconfiguration of respiratory services in four primary care organisations (PCOs) in England and Wales. Service development was observed over 18 months during a period of market-based reforms. Serial interviews with key clinicians and managers from hospital trusts and PCOs followed progress as they collaborated around, negotiated and contested developments. We found that professionals work to protect and expand their claims to work territory. Remuneration and influence was a catalyst for development and was also necessary to establish professional boundaries that underpinned novel service arrangements. Conflict and contest was less of a threat to change than a lack of engagement in boundary work because this engagement produced relationships based on forming shifting professional allegiances across and along boundaries, and these relationships mediated the social capital needed to accomplish change. However, this process also (re)produced inequalities among professions and prevented some groups from participation in service change.

Parent and Child Perceptions of a Self-Regulated, Home-Based Exercise Program for Children With Cystic Fibrosis

Despite recognized benefits, many children with cystic fibrosis (CF) do not consistently participate in physical activities. There is little empirical literature regarding the feelings and attitudes of children with CF toward exercise programs, parental roles in exercise, or factors influencing exercise experiences during research participation. The aim of this study is to describe the exercise experiences of children with CF and their parents during participation in a 6-month program of self-regulated, home-based exercise. This qualitative descriptive study was nested within a randomized controlled trial of a self-regulated, home-based exercise program and used serial semistructured interviews conducted individually at 2 and 6 months with 11 purposively selected children with CF and their parent(s). Six boys and five girls, ages 10-16 years, and parents(nine mothers, four fathers) participated in a total of 44 interviews. Five major thematic categories describing child and parent perceptions and experience of the bicycle exercise program were identified in the transcripts: (a) motivators, (b) barriers, (c) effort/work, (d) exercise routine, and (e) sustaining exercise. Research participation, parent-family participation, health benefits, and the child's personality traits were the primary motivators. Competing activities, priorities, and responsibilities were the major barriers in implementing the exercise program as prescribed. Motivation waned, and the novelty wore off for several (approximately half) parent-child dyads, who planned to decrease or stop the exercise program after the study ended. We identified motivators and barriers to a self-regulated, home-based exercise program for children with CF that can be addressed in planning future exercise interventions to maximize the health benefits for children with CF and the feasibility and acceptability to the children and their families.

Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study

Coordination of care for individuals with advanced progressive conditions is frequently poor. To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life. A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service. Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed. Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators. Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.

Significant others, situations and infant feeding behaviour change processes: a serial qualitative interview study

BackgroundExclusive breastfeeding until six months followed by the introduction of solids and continued breastfeeding is recommended by the World Health Organisation. The dominant approach to achieving this has been to educate and support women to start and continue breastfeeding rather than understanding behaviour change processes from a broader perspective.MethodSerial qualitative interviews examined the influences of significant others on women’s feeding behaviour. Thirty-six women and 37 nominated significant others participated in 220 interviews, conducted approximately four weekly from late pregnancy to six months after birth. Responses to summative structured questions at the end of each interview asking about significant influences on feeding decisions were compared and contrasted with formative semi-structured data within and between cases. Analysis focused on pivotal points where behaviour changed from exclusive breastfeeding to introducing formula, stopping breastfeeding or introducing solids. This enabled us to identify processes that decelerate or accelerate behaviour change and understand resolution processes afterwards.ResultsThe dominant goal motivating behaviour change was family wellbeing, rather than exclusive breastfeeding. Rather than one type of significant other emerging as the key influence, there was a complex interplay between the self-baby dyad, significant others, situations and personal or vicarious feeding history. Following behaviour change women turned to those most likely to confirm or resolve their decisions and maintain their confidence as mothers.ConclusionsApplying ecological models of behaviour would enable health service organisation, practice, policy and research to focus on enhancing family efficacy and wellbeing, improving family-centred communication and increasing opportunities for health professionals to be a constructive influence around pivotal points when feeding behaviour changes. A paradigm shift is recommended away from the dominant approach of support and education of individual women towards a more holistic, family-centred narrative approach, whilst acknowledging that breastfeeding is a practical skill that women and babies have to learn.

Complicaciones neurológicas asociadas a bloqueos interescalénico y supraclavicular guiados con ecografía en cirugía electiva de hombro y extremidad superior. Estudio observacional prospectivo en un hospital universitario

ObjectivesThe incidence of postoperative neurological symptoms after performing interscalene block varies between 4 and 16%. The majority of cases are resolved spontaneously within a year, but some patients have their symptoms permanently. Our objective was to assess the incidence of postoperative neurological symptoms after performing the ultrasound-assisted interscalene and supraclavicular anaesthetic blocks. Material and methodsA prospective and observational study was conducted on consecutive patients who had undergone upper extremity surgery with an interscalene or supraclavicular block as an isolated technique, or as a complement to general anaesthesia. Seven days after the intervention, a telephone interview was conducted that focused on the detection of neurological symptoms in the operated limb. Further serial interviews were conducted on patients with symptoms (after the first, the third and the sixth month, and one year after surgery) until resolution of symptoms. Neurological evaluation was offered to those patients with persistent symptoms after one year. ResultsA total of 121 patients were included, on whom 96 interscalene blocks and 22 supraclavicular blocks were performed. Postoperative neurological symptoms were detected in 9.9% (95% CI, 5-15%) of patients during the first week. No significant differences were observed between interscalene (9%) and supraclavicular block (14%). After 3 months the symptoms persisted in 9 patients (7.4%), with symptoms remaining in 4 patients (3.3%) after 1.5 years. Electromyogram was performed on 3 patients who tested positive for nerve damage. ConclusionsA high incidence of postoperative neurological symptoms was observed, and a worrying percentage of permanence of them. There were no significant differences in incidence according to the type of block, or any features of the patient or the anaesthesia technique that were associated with the incidence of these symptoms, except a marginal relationship with age. These complications must be clearly explained to the patients before performing these blocks.

End of life care for frail older patients in family practice (ELFOP) – protocol of a longitudinal qualitative study on needs, appropriateness and utilisation of services

BackgroundFrail elderly people represent a major patient group in family practice. Little is known about the patients’ needs, and how their needs evolve over time with increasing frailty towards the end of life. This study will address end-of-life care needs, service utilisation, and experiences of frail elderly patients and their informal caregivers, with regard to family practice. This paper aims to introduce the research protocol.Methods/DesignThe study uses a multiple perspective approach qualitative design. The first study part consists of serial six-monthly in-depth interviews with 30 community-dwelling elderly patients (≥70 years) with moderate to severe frailty and their key informal caregivers, over a period of 18 months. Additionally, semi-structured interviews with the patients’ family physician will be conducted. The serial interviews will be analysed with grounded theory and narrative approaches. Special attention will be paid to the comparison of distinct views of the patients’, informal caregivers’, and family physicians’ as well as on chronological aspects. In the second study part, five focus groups with experts in family medicine, geriatrics, palliative medicine, and nursing will be conducted. Finally, the implications for family practice and health care policy will be discussed in an expert workshop.DiscussionTo our knowledge, this is the first prospective, longitudinal qualitative study on the needs of elderly patients with advanced frailty towards the end of life in German family practice, which integrates the perspectives of patients, informal caregivers, family physicians and other health professionals. The study will contribute to the understanding of the clinical, psychosocial and information needs of patients and their caregivers, and of respective changes of experiences and needs along the illness/frailty trajectory including the last phase of life. It will provide an empirical basis for improving patient-centred care for this increasingly relevant target group.

The Work of Spousal Caregiving of Older Adults with End-Stage Heart Failure

Heart failure requires complex home management, which is typically performed by a spouse. Yet little is known about the actual "work" of caregiving in individuals with heart failure. The purpose of this study was to describe the types of work manifested in long-term spousal caregiving for older adults across the progression of heart failure. Secondary qualitative analysis was performed of the in-depth serial interview data of 20 spousal caregivers of individuals with heart failure age 62 and older, collected monthly over 12 to 14 months. The work of spousal caregiving impacted all aspects of the lives of spouses and was constant over time and across the course of heart failure. The work of caregiving was always present, even during times of medical stability, but the type of work and intensity varied throughout the course of the illness. Caregivers should be assessed for unmet needs throughout the course of heart failure, not just during the individuals' exacerbations or hospitalizations.

LIVING AND DYING WITH LIVER FAILURE: A SERIAL INTERVIEW STUDY

IntroductionIn the UK, the incidence of liver disease is increasing dramatically and by 2030 is predicted to kill more people than heart disease. In order to effectively treat this growing...

Developing social capital in implementing a complex intervention: a process evaluation of the early implementation of a suicide prevention intervention in four European countries.

BackgroundVariation in the implementation of complex multilevel interventions can impact on their delivery and outcomes. Few suicide prevention interventions, especially multilevel interventions, have included evaluation of both the process of implementation as well as outcomes. Such evaluation is essential for the replication of interventions, for interpreting and understanding outcomes, and for improving implementation science. This paper reports on a process evaluation of the early implementation stage of an optimised suicide prevention programme (OSPI-Europe) implemented in four European countries.MethodsThe process analysis was conducted within the framework of a realist evaluation methodology, and involved case studies of the process of implementation in four European countries. Datasets include: repeated questionnaires to track progress of implementation including delivery of individual activities and their intensity; serial interviews and focus groups with stakeholder groups; and detailed observations at OSPI implementation team meetings.ResultsAnalysis of local contexts in each of the four countries revealed that the advisory group was a key mechanism that had a substantial impact on the ease of implementation of OSPI interventions, particularly on their ability to recruit to training interventions. However, simply recruiting representatives of key organisations into an advisory group is not sufficient to achieve impact on the delivery of interventions. In order to maximise the potential of high level ‘gatekeepers’, it is necessary to first transform them into OSPI stakeholders. Motivations for OSPI participation as a stakeholder included: personal affinity with the shared goals and target groups within OSPI; the complementary and participatory nature of OSPI that adds value to pre-existing suicide prevention initiatives; and reciprocal reward for participants through access to the extended network capacity that organisations could accrue for themselves and their organisations from participation in OSPI.ConclusionsExploring the role of advisory groups and the meaning of participation for these participants revealed some key areas for best practice in implementation: careful planning of the composition of the advisory group to access target groups; the importance of establishing common goals; the importance of acknowledging and complementing existing experience and activity; and facilitating an equivalence of benefit from network participation.

Abducted by the illness: A qualitative study of traumatic stress in individuals with acute leukemia

Symptoms of traumatic stress are common in acute leukemia. The goal of the present qualitative study was to understand this traumatic stress, as perceived by patients. Participants were 43 patients with acute leukemia in Toronto, Canada. Participants were asked in serial interviews about their experience of diagnosis and treatment. A total of 65 interviews were analyzed utilizing the grounded theory method. Our findings provide insight into the traumatic experience of the diagnosis and treatment, as well as the initial psychological response to this trauma. Patients coped by surrendering control to the medical team, in whom they felt great trust. Patients also expressed a strong preference for limited information, with a preference to avoid discussions about overall prognosis. These results may inform interventions to relieve traumatic stress in this high risk population.

Studying the preoccupations that prevent people from going into green space

That urban green space can provide opportunities for psychological restoration which could prove valuable in promoting public health now seems relatively well established. What is less clear is whether many of us will continue to avail ourselves of these opportunities. Perhaps the question to pose is less one of whether green space experience can be good for people and more one of how best to tempt them there. This essay draws on a serial interview study with a sample of city professionals who ventured relatively infrequently into the various parks and gardens scattered around their offices. The aim is to stage a broader discussion about ways of researching those who seem happy to go without green space experience and the role of qualitative methods in questioning the most effective means of engaging with them.

Weighing worth against uncertain work: the interplay of exhaustion, ambiguity, hope and disappointment in mothers breastfeeding late preterm infants.

Poor breastfeeding outcomes among late preterm infants (LPIs) have been attributed to inadequate breast milk transfer stemming from physiological immaturities. However, breastfeeding is more than a biological phenomenon, and it is unclear how mothers of LPIs manage other factors that may also impact the breastfeeding course. Using grounded theory methods and incorporating serial post-partum interviews with several novel data collection techniques, we examined breastfeeding establishment over a 6-8-week-period among 10 late preterm mother-infant dyads recruited from a maternity hospital in Pittsburgh, Pennsylvania, USA. We found that breastfeeding in the LPI population was a fluctuating, cascade-like progression of trial and error, influenced by a host of contextual factors and events and culminating with breastfeeding continuation (with or without future caveats for duration or exclusivity of breastfeeding) or cessation. The trajectory was explained by the basic psychosocial process Weighing Worth against Uncertain Work, which encompassed the tension among breastfeeding motivation, the intensity of breastfeeding work and the ambiguity surrounding infant behaviour and feeding cues. Several sub-processes were also identified: Playing the Game, Letting Him Be the Judge vs. Accommodating Both of Us and Questioning Worth vs. Holding out Hope. If valid, our theoretical model indicates a need for earlier, more extensive and more qualified breastfeeding support for mothers of LPIs that emphasizes the connection between prematurity and observed feeding behaviours.

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Adjustment and support needs of glioma patients and their relatives: serial interviews

To understand factors influencing the process of adjustment to a diagnosis of glioma. Twenty-six patients and 23 relatives took part in 80 in-depth qualitative interviews conducted at five key stages: before formal diagnosis, at start of treatment, on completion of treatment, 6 months post treatment, and post bereavement. High levels of distress were reported, particularly preceding and following diagnosis. Many participants described lack of specific information in the early part of their illness and a lack of clarity about what was wrong and what was going to happen next. They often desired more procedural information, as well as information about their condition and treatments available, although there was variation in the timing of when people were ready to hear this. Receiving reassurance and support was essential to patients and their relatives to help them come to terms with their illness. This need was particularly acute during the early phase of the illness when distress and uncertainty were at a peak and lessened over time as people adjusted to their illness. Offering suitable information about what to expect early and frequently in a supportive way is much appreciated by patients. There is an important balance between ensuring that patients and their families are fully informed and fostering adaptive coping that allows for hope.

Non-initiation of adjuvant hormonal therapy in women with hormone receptor-positive breast cancer: The Breast Cancer Quality of Care Study (BQUAL)

Adjuvant hormonal therapy for non-metastatic hormone receptor (HR)-positive breast cancer decreases risk of breast cancer recurrence and increases survival. However, some women do not initiate this life-saving treatment. We used a prospective cohort design to investigate factors related to non-initiation of hormonal therapy among women with newly diagnosed, non-metastatic HR-positive breast cancer recruited from three U.S. sites. Serial interviews were conducted at baseline and during treatment to examine sociodemographic factors, tumor characteristics, and treatment decision-making factors. Multivariate modeling assessed associations between variables of interest and hormonal therapy initiation. Of 1,050 breast cancer patients recruited, 725 (69%) had HR-positive breast cancer, of whom 87 (12.0%) based on self-report and 122 (16.8%) based on medical record/pharmacy fill rates did not initiate hormonal therapy. In a multivariable analysis, non-initiation of hormonal therapy, defined by medical record/pharmacy, was associated with having greater negative beliefs about efficacy of treatment (OR 1.42, 95% CI 1.18-1.70). Non-initiation was less likely in those who found the quality of patient/physician communication to be higher (OR 0.96, 95% CI 0.93-0.99), the hormonal therapy treatment decision an easy one to make (OR 0.45, 95% CI 0.23-0.90) or neither easy nor difficult (OR 0.34, 95% CI 0.20-0.58); and had more positive beliefs about hormonal therapy efficacy (OR 0.40, 95% CI 0.34-0.62). Factors influencing non-initiation of adjuvant hormonal therapy are complex and influenced by patient beliefs regarding treatment efficacy and side effects. Educational interventions to women about the benefits of hormonal therapy may decrease negative beliefs and increase hormone therapy initiation.

A harm reduction paradox: Comparing China's policies on needle and syringe exchange and methadone maintenance

BackgroundChina has launched methadone maintenance treatment (MMT) and needle and syringe exchange programmes (NSEP) as part of the country's HIV prevention strategy amongst injection drug users. MMT is expanding, with backing from multiple government ministries, however, NSEP have received less political support and funding. MethodsSemi-structured, serial interviews were conducted with key informants, knowledgeable about China's harm reduction policies. Concurrent content analysis allowed for revision of the interview guide throughout the data collection process. This was combined with a systematic analysis of official government policy documents on NSEP and MMT, including white papers, legal documents, and policy statements. FindingsEarly consensus between public security and public health sectors regarding methadone's dual use in HIV prevention as well as method of drug control created broad institutional support for MMT programmes amongst policy makers. In contrast, NSEP were seen as satisfying only the HIV prevention goals of the public health sector, and were perceived as condoning illicit drug use. Furthermore, NSEP's roots in China, as an experimental collaboration with international groups, created suspicion regarding its role in China's drug control policy. NSEP and MMT's distinct paths to policy development are reflected in the complex and occasionally contradictory nature of China's harm reduction strategy. ConclusionsThese discrepancies highlight the need for a more politically sustainable and comprehensive integration of harm reduction projects. Recommendations include improved evaluation methods for NESP, NSEP-MMT cross-referral system, and stronger NSEP advocacy within the non-profit and public health sectors.

The development of health literacy in patients with a long-term health condition: the health literacy pathway model

BackgroundInadequate health literacy has been associated with poor management of long-term health conditions and has been identified as a key social determinant of health outcomes. However, little is understood about how health literacy might develop over time or the processes by which people may become more health literate. Our objectives were to describe how patients with a long-term condition practice health literacy in the management of their health and communication with health professionals, how they become more health literate over time and their experience of using health services. We also sought to identify and describe the motivations, facilitators and barriers in the practice of health literacy in healthcare consultations.MethodsWe designed a longitudinal qualitative study using serial interviews with 18 participants to explore their experiences of learning to manage their condition and their experiences of health literacy when participating in healthcare processes. Participants were recruited from patient education programmes and were interviewed three times over a period of 9 months. A framework approach was used to analyse data.ResultsA model is presented that illustrates the development of health literacy along a trajectory that includes the development of knowledge, health literacy skills and practices, health literacy actions, abilities in seeking options and informed and shared decision making opportunities. Motivations and barriers to developing and practising health literacy skills partly reflected participants' characteristics but were also influenced by health professionals. Some participants developed their health literacy to a point where they became more involved in healthcare processes (including informed and shared decision-making).ConclusionsPatients with a long-term condition can develop health literacy skills over time and put their skills into practice in becoming more active in healthcare consultations. Our findings have implications for developing health literacy interventions aimed at patient involvement in healthcare processes and improved self-management of long-term conditions.

A serial qualitative interview study of infant feeding experiences: idealism meets realism

ObjectiveTo investigate the infant feeding experiences of women and their significant others from pregnancy until 6 months after birth to establish what would make a difference.DesignQualitative serial interview study.SettingTwo health...

How Older People Relate to the Private Winter Warmth Practices of Their Peers and Why We Should Be Interested

There is good reason to be interested in how older people in ageing societies organise their winter warmth. Winter mortality rates are highest amongst this group. Several initiatives have accordingly sought to alleviate the fuel poverty some older people experience at this time. Yet many older people are also wealthier than ever. This leads to alternative anxieties about how their potentially extravagant home heating could exacerbate wider climate change. This paper pursues the contention that future policies relating to both issues stand to benefit from a fuller appreciation of how current older person households relate to the private winter warmth practices of their generational peers. Building on studies that explore the dynamics of domestic thermal convention and consider how to engender new sustainable energy norms at home, it presents findings from a serial interview project with a diverse sample of older people in the UK. We consider whether these respondents connected their actions to the idea of a wider generational mode of managing domestic winter warmth and the reasons why they seldom did. We end with the implications of this situation for further research on domestic energy norms and interventions aimed at the winter practices of this growing sector.

Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study

ObjectivesTo understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for...