Healthcare professionals' perceptions and experiences of using a cold cot following the loss of a baby: a qualitative study in maternity and neonatal units in the UK.

BACKGROUND: Best practice in perinatal bereavement care suggests offering parents the opportunity to spend time with their baby. Cold cots facilitate this purpose by reducing the deterioration of the body and evidence indicates their wide availability in maternity and neonatal units in the UK. This study aimed to examine healthcare professionals' perceptions and experiences of using a cold cot following the loss of a baby. METHODS: A qualitative cross-sectional study was designed. In-depth, semi-structured interviews were conducted with 33 maternity and neonatal unit healthcare professionals who worked across three UK hospital settings. Data were analysed using inductive reflexive thematic analysis. RESULTS: Findings revealed that staff had predominantly positive views about, and experiences of, using a cold cot. The technology was highly valued because it facilitated parents to spend time with their baby and participants reported that it was generally easy to use and smoothly embedded into the clinical environment. Cold cots were deemed useful when mothers were medically unwell and needed time to recover, when parents struggled to say goodbye to their baby, wished to take the baby home, or wanted their baby to stay in the unit instead of going straight to the mortuary. The use of technology was further perceived to be relevant in scenarios of unexpected loss, post-mortem examination and with babies of late gestations or neonates. Despite staff expressing comfort with the delay of visual and olfactory body changes, the coldness of the baby's body that was accelerated with the use of a cold cot was a major concern as it connoted and possibly exacerbated the reality of death. CONCLUSIONS: Cold cots allow the materialisation of modern bereavement care practices that recognise the importance of continuing bonds with the deceased that is made possible through the creation of memories within an extremely restricted timeframe. Simultaneously, the body coldness concentrates the ambivalence toward an inherently paradoxical death, that of a baby. Training in perinatal bereavement care, including the use of cold cots, would help staff support bereaved parents whilst acknowledging dilemmas and managing contradictions encompassed in death at the time or near the time of birth.

"The way I am treated is as if I am under my mother's care": qualitative study of patients' experiences of receiving hospice care services in South Africa.

BACKGROUND: Research on the patient experience of receiving palliative care across a number of settings is increasing, but the majority of these investigations are situated within the context of developed countries. There is limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice care. The present study explored the lived experience of attending hospice care facilities in South Africa to develop a bottom-up understanding from the perspectives of patients themselves. METHODS: A qualitative cross-sectional study was designed to examine how patients experienced receiving hospice care We conducted in-depth, semi-structured interviews with thirteen, purposively selected patients living with terminal cancer and receiving in-patient or day care palliative services from a hospice organisation in South Africa. We used inductive thematic analysis to analyse the data. RESULTS: We identified three themes that reflected a process of transformation that was experienced by participants during their engagement with the hospice services. The first theme describes participants' initial reluctance to be linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and dying. The second theme presents the perceived positive impact on patients' physical and psychosocial wellbeing which resulted from the highly valued interactions with staff and other patients as well as patients' engagement with creative activities. The final theme delineates the transformation of hospice into a second 'family' and 'home' and the restoration of an identity that expands beyond the 'sick' role. CONCLUSIONS: Receiving hospice care that sensitively attends to patients' psychosocial and physical needs helps people to re-create a sense of homeliness within the world, re-orient themselves toward a meaningful life and re-configure their relationship with self. Patient experience of receiving hospice care in South Africa does not appear dissimilar to that reported by patients in resource-rich countries, suggesting underlying commonalities. There is a need for raising awareness and educating the public about what palliative care can offer to those in need. Public health campaigns could help reduce the stigma attached to palliative care, deflect negative perceptions, and communicate the benefits for patients, families and communities in culturally sensitive ways.

Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period.

BACKGROUND: Choosing a suitable sample size in qualitative research is an area of conceptual debate and practical uncertainty. That sample size principles, guidelines and tools have been developed to enable researchers to set, and justify the acceptability of, their sample size is an indication that the issue constitutes an important marker of the quality of qualitative research. Nevertheless, research shows that sample size sufficiency reporting is often poor, if not absent, across a range of disciplinary fields. METHODS: A systematic analysis of single-interview-per-participant designs within three health-related journals from the disciplines of psychology, sociology and medicine, over a 15-year period, was conducted to examine whether and how sample sizes were justified and how sample size was characterised and discussed by authors. Data pertinent to sample size were extracted and analysed using qualitative and quantitative analytic techniques. RESULTS: Our findings demonstrate that provision of sample size justifications in qualitative health research is limited; is not contingent on the number of interviews; and relates to the journal of publication. Defence of sample size was most frequently supported across all three journals with reference to the principle of saturation and to pragmatic considerations. Qualitative sample sizes were predominantly - and often without justification - characterised as insufficient (i.e., 'small') and discussed in the context of study limitations. Sample size insufficiency was seen to threaten the validity and generalizability of studies' results, with the latter being frequently conceived in nomothetic terms. CONCLUSIONS: We recommend, firstly, that qualitative health researchers be more transparent about evaluations of their sample size sufficiency, situating these within broader and more encompassing assessments of data adequacy. Secondly, we invite researchers critically to consider how saturation parameters found in prior methodological studies and sample size community norms might best inform, and apply to, their own project and encourage that data adequacy is best appraised with reference to features that are intrinsic to the study at hand. Finally, those reviewing papers have a vital role in supporting and encouraging transparent study-specific reporting.

Experience of Lyme disease and preferences for precautions: a cross-sectional survey of UK patients.

BACKGROUND: Lyme disease (LD) is a tick-borne zoonosis currently affecting approximately 1000 people annually in the UK (confirmed through serological diagnosis) although it is estimated that the real figures may be as high as 3000 cases. It is important to know what factors may predict correct appraisal of LD symptoms and how the experience of LD might predict preferences for future precautionary actions. METHODS: A cross-sectional survey was conducted with early LD patients via the Lyme Borreliosis Unit at the Health Protection Agency. One hundred and thirty participants completed measures of awareness of having been bitten by ticks, knowledge of ticks and LD, interpretation of LD symptoms, suspicions of having LD prior to seeing the General Practitioner (GP), and preferences for precautionary actions during future countryside visits. Chi-square tests and logistic regression were used to identify key predictors of awareness of having been bitten by ticks and of having LD. t-tests assessed differences between groups of participants on suspicions of having LD and preferences for future precautions. Pearson correlations examined relationships between measures of preferences for precautions and frequency of countryside use, knowledge of ticks and LD, and intentions to avoid the countryside in the future. RESULTS: 73.8% of participants (n = 96) reported a skin rash as the reason for seeking medical help, and 44.1% (n = 64) suspected they had LD before seeing the GP. Participants reporting a direct event in realizing they had been bitten by ticks (seeing a tick on skin or seeing a skin rash and linking it to tick bites) were more likely to suspect they had LD before seeing the doctor. Participants distinguished between taking precautions against tick bites during vs. after countryside visits, largely preferring the latter. Also, the more frequently participants visited the countryside, the less likely they were to endorse during-visit precautions. CONCLUSIONS: The results suggest that the risk of LD is set in the context of the restorative benefits of countryside practices, and that it may be counterproductive to overemphasize pre- or during-visit precautions. Simultaneously, having experienced LD is not associated with any withdrawal from countryside.

Interpreting and acting upon home blood pressure readings: a qualitative study.

BACKGROUND: Recent guidelines recognize the importance of home blood pressure monitoring (HBPM) as an adjunct to clinical measurements. We explored how people who have purchased and use a home blood pressure (BP) monitor make sense of, and act upon, readings and how they communicate with their doctor about the practice of home monitoring. METHODS: A qualitative study was designed and participants were purposively recruited from several areas in England, UK. Semi-structured in-depth interviews were conducted with 18 users of home BP monitors. The transcribed data were thematically analysed. RESULTS: Interpretation of home BP readings is complex, and is often characterised by uncertainty. People seek to assess value normality using 'rules of thumb', and often aim to identify the potential causes of the readings. This is done by drawing on lay models of BP function and by contextualising the readings to personal circumstances. Based on the perceived causes of the problematic readings, actions are initiated, mostly relating to changes in daily routines. Contacting the doctor was more likely when the problematic readings persisted and could not be easily explained, or when participants did not succeed in regulating their BP through their other interventions. Most users had notified their doctor of the practice of home monitoring, but medical involvement varied, with some participants reporting disinterest or reservations by doctors. CONCLUSIONS: Involvement from doctors can help people overcome difficulties and resolve uncertainties around the interpretation of home readings, and ensure that the rules of thumb are appropriate. Home monitoring can be used to strengthen the patient-clinician relationship.

When open data closes the door: A critical examination of the past, present and the potential future for open data guidelines in journals.

Opening data promises to improve research rigour and democratize knowledge production. But it also presents practical, theoretical, and ethical considerations for qualitative researchers in particular. Discussion about open data in qualitative social psychology predates the replication crisis. However, the nuances of this ongoing discussion have not been translated into current journal guidelines on open data. In this article, we summarize ongoing debates about open data from qualitative perspectives, and through a content analysis of 261 journals we establish the state of current journal policies for open data in the domain of social psychology. We critically discuss how current common expectations for open data may not be adequate for establishing qualitative rigour, can introduce ethical challenges, and may place those who wish to use qualitative approaches at a disadvantage in peer review and publication processes. We advise that future open data guidelines should aim to reflect the nuance of arguments surrounding data sharing in qualitative research, and move away from a universal "one-size-fits-all" approach to data sharing. This article outlines the past, present, and the potential future of open data guidelines in social-psychological journals. We conclude by offering recommendations for how journals might more inclusively consider the use of open data in qualitative methods, whilst recognizing and allowing space for the diverse perspectives, needs, and contexts of all forms of social-psychological research.

Understanding innovators' experiences of barriers and facilitators in implementation and diffusion of healthcare service innovations: a qualitative study.

BACKGROUND: Healthcare service innovations are considered to play a pivotal role in improving organisational efficiency and responding effectively to healthcare needs. Nevertheless, healthcare organisations encounter major difficulties in sustaining and diffusing innovations, especially those which concern the organisation and delivery of healthcare services. The purpose of the present study was to explore how healthcare innovators of process-based initiatives perceived and made sense of factors that either facilitated or obstructed the innovation implementation and diffusion. METHODS: A qualitative study was designed. Fifteen primary and secondary healthcare organisations in the UK, which had received health service awards for successfully generating and implementing service innovations, were studied. In-depth, semi structured interviews were conducted with the organisational representatives who conceived and led the development process. The data were recorded, transcribed and thematically analysed. RESULTS: Four main themes were identified in the analysis of the data: the role of evidence, the function of inter-organisational partnerships, the influence of human-based resources, and the impact of contextual factors. "Hard" evidence operated as a proof of effectiveness, a means of dissemination and a pre-requisite for the initiation of innovation. Inter-organisational partnerships and people-based resources, such as champions, were considered an integral part of the process of developing, establishing and diffusing the innovations. Finally, contextual influences, both intra-organisational and extra-organisational were seen as critical in either impeding or facilitating innovators' efforts. CONCLUSIONS: A range of factors of different combinations and co-occurrence were pointed out by the innovators as they were reflecting on their experiences of implementing, stabilising and diffusing novel service initiatives. Even though the innovations studied were of various contents and originated from diverse organisational contexts, innovators' accounts converged to the significant role of the evidential base of success, the inter-personal and inter-organisational networks, and the inner and outer context. The innovators, operating themselves as important champions and being often willing to lead constructive efforts of implementation to different contexts, can contribute to the promulgation and spread of the novelties significantly.

"Pain talk": A triadic collaboration in which nurses promote opportunities for engaging children and their parents about managing children's pain.

Effective communication with children about pain is important and has the potential to mediate the short- and longer-term effects of pain on children. Most communication studies relating to children's pain have focused on language children use to describe everyday pain experiences. However, little is known regarding how health professionals, particularly nurses, communicate with children in healthcare settings about pain. This study aimed to explore how nurses talk to children and their parents about pain and what factors influence nurses' use of language and non-verbal communication. A cross-sectional mixed-methods (predominantly qualitative) survey ("pain talk") was conducted, comprising qualitative items about pain communication and four vignettes portraying hypothetical cases of children representing typical child pain scenarios. Participants were recruited via email, social media, newsletters, established networks, and personal contacts. A total of 141 registered (68.1%) or in-training nurses across 11 countries with experience of managing children's pain completed the survey. Textual survey responses were analyzed using conventional qualitative content analysis. Qualitative content analysis generated a meta-theme "Being confident and knowing how to do 'pain talk'" and four main themes that described the functions, purpose, and delivery of "pain talk": (a) "contextualizing and assessing," (b) "empowering, explaining, and educating," (c) "supporting, affirming, and confirming," and (d) "protecting, distracting, and restoring." "Pain talk" was a triadic collaborative communication process that required nurses to feel confident about their role and skills. This process involved nurses talking to children and parents about pain and creating engagement opportunities for children and parents. "Pain talk" aimed to promote the agency of the child and parent and their engagement in discussions and decision-making, using information, support, and comfort. Nurses shaped their "pain talk" to the specific context of the child's pain, previous experiences, and current concerns to minimize potential distress and adverse effects and to promote optimal pain management.

Supporting Primary School Children with Juvenile Idiopathic Arthritis: A Qualitative Investigation of Teaching Staff Experiences.

BACKGROUND: Juvenile idiopathic arthritis (JIA) has a deleterious impact on numerous areas of children's lives, including school functioning. This study moves beyond eliciting child reports of school functioning to examine teaching staff's experiences of supporting a child with JIA in school. METHODS: A total of 51 UK-based teaching staff members with experience of supporting a child aged 7-11 years with JIA in school were recruited. Participants completed an online qualitative survey regarding their perceptions and experiences of supporting a child with JIA in school, with a subsample of 9 participants completing a subsequent telephone interview to explore responses in greater detail. Survey and interview data were analyzed using the conventional approach to qualitative content analysis. RESULTS: Analyses generated 4 themes: (1) communicating, (2) flexing and adapting, (3) including, and (4) learning and knowing. Findings highlighted the importance of clear communication between teaching staff and parents in addition to the need for teaching staff to provide individualized support for children with JIA which maximized their inclusion within the class. CONCLUSIONS: This paper provides new knowledge regarding how teaching staff adopt proactive and creative strategies to support children with JIA, often in the absence of appropriate training, identifying support needs and resources for teaching staff.

'Lonely within the mother': An exploratory study of first-time mothers' experiences of loneliness.

Loneliness is associated with life transitions such as new motherhood, yet there are few studies investigating the issue in this population. Using data from semi-structured interviews and an interpretative phenomenological analysis, this exploratory study sought to understand seven new mothers' experiences of loneliness. Experiences were organised around three themes, reflecting loneliness arising from making unfavourable self-comparisons with perceived mothering 'norms', from reduced social contact and relationships lacking in empathy. Accounts were homogeneous and point to potential solutions to ameliorate loneliness in new mothers; encouraging empathy in new mothers' partners and countering prevalent unrealistic representations of motherhood with more pragmatic accounts.

Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative Investigation.

Although providing care to a family member or friend may provide psychological benefits, informal (i.e., unpaid) caregivers also encounter difficulties which may negatively affect their quality of life as well as their mental and physical health. Loneliness is one important challenge that caregivers face, with this psychological state being associated with morbidity and premature mortality. Although previous research has identified loneliness as an issue associated with being an informal caregiver, there is a paucity of evidence that attempts to understand this phenomenon in depth. This study aimed to examine informal caregivers' reflections on, and accounts of, experiences of loneliness linked to their caregiving situation. As part of a cross-sectional, qualitative study, sixteen semi-structured interviews were conducted with 8 spousal caregivers, 4 daughters caring for a parent, 3 mothers caring for a child (or children), and 1 woman looking after her partner. The cared-for persons were suffering from a range of mental and physical health conditions (e.g., dementia, frailty due to old age, multiple sclerosis, depression, autism). Data were analyzed using an inductive thematic analysis. Experiences of loneliness were described by reference to a context of shrunken personal space and diminished social interaction caused by the restrictions imposed by the caregiving role. Loneliness was also articulated against a background of relational deprivations and losses as well as sentiments of powerlessness, helplessness, and a sense of sole responsibility. Social encounters were also seen to generate loneliness when they were characterized by some form of distancing. Though not all sources or circumstances of loneliness in caregivers are amenable to change, more opportunities for respite care services, as well as a heightened sensibility and social appreciation of caregivers' valued contributions could help caregivers manage some forms of loneliness.

The production and use of evidence in health care service innovation: a qualitative study.

The focus of this article is on a range of concepts of evidence employed by health care innovators in pursuing service innovations and in demonstrating their success. In-depth, semi-structured interviews were conducted with 18 key informants in the United Kingdom who had won Health Service Journal awards for successfully implementing 15 service innovations. Four concepts of evidence were identified: (a) evidence of effectiveness-both direct and indirect, (b) evidence of efficiency, (c) evidence of innovation acceptance, and (d) evidence of relevance. The results suggest that the innovators articulated evidential concepts from the main approaches prevailing in the British National Health Service, namely clinical trials and improvement cycles. Most aspired to "better" evidence than they were able to obtain, while the approach to evidence gathering was very pragmatic and was more aligned with the improvement-cycle framework. Developing supporting mechanisms for assisting innovation evaluation is an important challenge if service innovation is to be routinely attempted and achieved in health care.

Beyond labelling: what strategies do nut allergic individuals employ to make food choices? A qualitative study.

OBJECTIVE: Food labelling is an important tool that assists people with peanut and tree nut allergies to avoid allergens. Nonetheless, other strategies are also developed and used in food choice decision making. In this paper, we examined the strategies that nut allergic individuals deploy to make safe food choices in addition to a reliance on food labelling. METHODS: THREE QUALITATIVE METHODS: an accompanied shop, in-depth semi-structured interviews, and the product choice reasoning task - were used with 32 patients that had a clinical history of reactions to peanuts and/or tree nuts consistent with IgE-mediated food allergy. Thematic analysis was applied to the transcribed data. RESULTS: Three main strategies were identified that informed the risk assessments and food choice practices of nut allergic individuals. These pertained to: (1) qualities of product such as the product category or the country of origin, (2) past experience of consuming a food product, and (3) sensory appreciation of risk. Risk reasoning and risk management behaviours were often contingent on the context and other physiological and socio-psychological needs which often competed with risk considerations. CONCLUSIONS: Understanding and taking into account the complexity of strategies and the influences of contextual factors will allow healthcare practitioners, allergy nutritionists, and caregivers to advise and educate patients more effectively in choosing foods safely. Governmental bodies and policy makers could also benefit from an understanding of these food choice strategies when risk management policies are designed and developed.

Whose Lyme is it anyway? Subject positions and the construction of responsibility for managing the health risks from Lyme disease.

There has been a significant increase during the last decade in the UK of the incidence of the Lyme disease. It is transmitted through tick bites, and can have serious health consequences if not treated early. This study examined how the responsibility for managing and communicating the health risks from Lyme disease to forest workers and recreational visitors was constructed and acted upon by 21 interviewees in key managerial positions within one of the largest UK forestry organisations. The in-depth, semi-structured interviews were analysed using discourse analysis within a Foucauldian framework. The results demonstrated that the construction of responsibility towards the workforce and visitors was embedded into broader representations of the forest as a working, recreational and natural environment, as well as into the binary conceptualisation of forest hazards as natural and human-made. These constructions prescribed respective subject positions which differentially informed assumptions of responsibility, and consequent actions, towards the workforce and the public.