Understanding the information experiences of parents involved in negotiating post-separation parenting arrangements

The paper presents findings from a study into the information experiences of people needing to make post-separation parenting arrangements. Data was collected from 20 participants, through in-depth, semi-structured, telephone interviews. Thematic analysis identified five major themes: Following, Immersion, Interpersonal, History and Context which depict the information experiences of the participants. The findings can be used as an evidence base to inform the design and delivery of support and services provided by government agencies and other community groups supporting the legal information needs of individuals and families. The work extends current understandings of information experience as an object of study in the information science discipline

Pharmacological role of efflux transporters: Clinical implications for medication use during breastfeeding

The World Health Organisation recommends exclusive breastfeeding for the first six months of an infant’s life and in combination with solid food thereafter. This recommendation was introduced based on research showing numerous health benefits of breastfeeding for both the mother and the infant. However, there is always concern regarding the transfer of medications from mother to their breastfed baby via milk. Pharmacokinetic properties of a drug are usually used to predict its transferability into breast milk. Although most drugs are compatible with breastfeeding, cases of toxic drug exposure have been reported. This is thought to be due to active transport mechanisms whereby efflux transporter proteins expressed in the epithelial cells of the mammary gland actively secrete drugs into milk. An example of such efflux transporters including the breast cancer resistance protein which is strongly induced during lactation and this could result in contamination of milk with the substrates of this transporter which may place the suckling infant at risk of toxicity. Furthermore, there is little known about the substrate specificity of most efflux transporters as we have highlighted in this review. There also exists some degree of contradiction between in vivo and in vitro studies which makes it difficult to conclusively predict outcomes and drug-drug interactions

Exploratory psychomteric properties of the Farsi and English version of Spiritual Needs Questionnaire (SpNQ)

The aim of this study was to translate and test the psychometric properties of a Farsi and an English version of the spiritual needs questionnaire (SpNQ) a measure originally developed in German. The World Health Organization guideline for translating and validating questionnaires was used. Participants were recruited from hospitals in Iran and New Zealand during an outpatient follow-up appointment after cancer treatment. People diagnosed with cancer in Iran (68) and New Zealand (54) completed and returned the SpNQ (at time 1) and within the two week time period (time 2). Cronbach’s alpha ranged from 0.79 to 0.92, except for the existentialistic domain of the SpNQ (0.53 – 0.54). The coefficient of variation (CV) indicated minimal random variation between the assessments; the measures were generally stable, except for the item “existentialistic”. The translated versions of the SpNQ have the potential to support a comprehensive assessment of cancer patients’ spiritual needs

Developing and Evaluating Complex Interventions: Enhancing the Role of Qualitative Research

The use of qualitative research methods alongside randomized controlled trials of health-care interventions have the potential to contribute to the development and evaluation of both complex and other health interventions. Qualitative evaluations of interventions are rarely reported but can provide insight into the intervention process, and the feasibility and acceptability of the intervention, to improve and adapt interventions

Termination of pregnancy for non-lethal fetal anomaly : professional perspectives

PhD ThesisThe topic of termination of pregnancy continues to attract extensive debate in both the public arena and in the academy. Debates about termination of pregnancy for fetal anomaly (TOPFA) in particular take place against this backdrop. Social science analyses of the views of medical professional providers of TOPFA are underdeveloped, and social care professionals (who care for those living with disability) are an under represented group in research more generally. In this contentious area of public policy, the insights could make an important contribution to the on-going policy debates. Using a mixed methods approach, this thesis explores the views about the acceptability of TOPFA from the perspective of two professional groups: medical professionals and social care professionals. Four case studies were used to form a basis for the exploration, and these were selected for intrinsic exploratory value. An epidemiological overview of TOPFA acceptance rates from six areas of the UK was used to help inform the case study selection process. Data collection from professionals by questionnaires and semi-structured interviews followed. The questionnaire data suggest that the views between the professional groups were not radically different. The thematic analysis of the interview data generated two themes: theme one conceptualises the imagined child; theme two conceptualises the predicted experiences of the imagined child. When comparing the accounts given by the two professional groups, the data suggest that social care professionals also look at the wider social context of a person with an impairment when discussing their views regarding TOPFA. Medical professionals focus more on the individual impairment when discussing their views on TOPFA. Whether an anomaly can be ‘fixed’, what pain is associated with the particular anomaly, whether a normal life experience will be had were all considered against what professionals deemed a ‘morally acceptable’ outcome. Acceptable TOPFA was based on what was morally acceptable to professionals both in their professional roles, and within a personal capacity. These findings show professionals are able to negotiate acceptable TOPFA in at least some instances while maintaining a sense of moral self. This research adds support to existing arguments on the extent to which the personal views of medical professionals influence their practices. It also offers insight into a previously under researched group, social care professionals. The mixed methods and interdisciplinary approach has been crucial in providing a productive framework within which to explore the concept of acceptable TOPFA from the perspectives of professionals.MRC and ESR

Living with sub-optimal glycaemic control: the experiences of Type 2 diabetes diagnosis and education

Aim The aim of this study was to explore the experiences of diagnosis and education for people living with Type 2 diabetes who have sub-optimal glycaemic control. Background The increasing prevalence of Type 2 diabetes is a global concern. Many people have difficulty maintaining optimal glycaemic control with up to 50% having HbA1c levels higher than recommended. A range of factors that have been suggested as possibly contributing to this, however, little is known about how their experience of diagnosis, education and support to attempt to understand the context of their self-management practices. Design A qualitative thematic analysis of interviews conducted with people with sub-optimal glycaemic control prior to their participation in an intervention study. Method Thirty participants taking part in a psychosocial/educational intervention for people with sub-optimal glycaemic control were interviewed in 2012 before the intervention commenced. These interviews explored each participant's experience of the diagnosis and associated education. The interviews were transcribed and a thematic analysis was conducted. Findings Almost all the participants had been shocked at receiving the diagnosis and felt it had been a moral indictment on their lifestyle. Many had been given the impression that they had a mild form of diabetes and most had been given very little information on self-management that they had found useful. Conclusion The findings suggest that for the participants there was a considerable gap between the rhetoric of person-centred services and the reality of the experiences of diagnosis and education for the self-management of Type 2 diabetes

Measuring what matters: A proposal for reframing how we evaluate and improve experience in healthcare

The conversation on measuring experience has been a long and thoughtful one. It has reflected a dynamic tension between measures used as a lever for action in some health systems and as a mechanism to determine reimbursable dollars in others. Yet underlying all the conversation, the question of what we measure, to what end we measure and what truly matters to those who experience care remains. Through a series of conversations over the last two years senior experience leaders across healthcare organizations determined it is time to assess the current landscape of patient experience measurement, to acknowledge what the existing system of measurement has inspired in effort and outcomes and to look forward to what could really make a difference in providing actionable insight and sustainable improvement in the future. While there are policy requirements for what organizations measure and report along with financial implications, this need not be the universal means by which patient feedback is captured and issues are addressed. This is paralleled by a global call for a clear, simple, comparable and actionable system of measurement to both understand and improve experience efforts in healthcare. This article reflects those conversations and frames the opportunity we have. It acknowledges all that the current system of measurement has helped us do, offers a new view on what measurement can be and presents a call to action to convene a diverse range of voices to shape experience measurement for the future. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

A nurse-led education and cognitive behaviour therapy-based intervention among adults with uncontrolled type 2 diabetes: A randomised controlled trial

Rationale, aims and objectives: Diabetes mellitus is associated with significant morbidity, mortality and escalating healthcare costs. Research has consistently demonstrated the importance of glycaemic control in delaying the onset, and decreasing the incidence, of both the short- and long-term complications of diabetes. Although glycaemic control is difficult to achieve and challenging to maintain, it is key to reducing negative disease outcomes.  The aim of this study was to determine whether a nurse-led educational intervention alone or a nurse-led intervention using education and acceptance and commitment therapy (ACT) were effective in reducing HbA1c in people living with uncontrolled type 2 diabetes compared to usual care.  Methods: Adults over the age of 18 years, with a confirmed diagnosis of type 2 diabetes and HbA1c outside of the recommended range (4-7%, 20-53 mmol/mol) for 12 months or more were eligible to participate.  Participants were randomised to either a nurse-led education intervention, a nurse-led education plus ACT intervention or usual care. One hundred and eighteen participants completed baseline data collection (N=34 education group, N=39 education plus ACT, N=45 control group). An intention to treat analysis was employed.  Results: A statistically significant reduction in HbA1c in the education intervention group was found (p=.011 [7.48, 8.14]). At 6 months, HbA1c was reduced in both intervention groups (Education group -0.21, education and ACT group -0.04) and increased in the control group (+0.32). A positive change in HbA1c (HbA1c reduced) was noted in 50 participants overall. Twice as many participants in the intervention groups demonstrated an improvement as compared to the control group (56% of the education group, 51% education plus ACT, and 24% control group.  Conclusions: At 6 months post intervention, HbA1c was reduced in both intervention groups with a greater reduction noted in the nurse-led education intervention

A nurse-led interdisciplinary approach to promote self-management of type 2 diabetes: A process evaluation of post intervention experiences

Rationale, aims and objectives  Self-management of type 2 diabetes through diet, exercise and for many medications, are vital in achieving and maintaining glycaemic control in type 2 diabetes. A number of interventions have been designed to improve self-management, but the outcomes of these are rarely explored from a qualitative angle and even fewer through a process evaluation.  Method  A process evaluation was conducted using a qualitative design with participants randomized to an intervention. Seventy-three people living with type 2 diabetes and hyperglycaemia for a minimum of 1 year, randomized to one of two interventions (n = 34 to an education intervention andn = 39 to an education and acceptance and commitment therapy intervention) completed stage one of the process evaluation, immediately following the intervention through written feedback guided by open-ended questions. A purposive sample of 27 participants completed semi-structured interviews at 3 and 6 months post intervention. Interview data were transcribed and data analysed using a thematic analysis.  Results  The majority of participants described an increase in knowledge around diabetes self-management and an increased sense of personal responsibility. Participants also described changes in self-management activities and reflected on the challenges in instigating and maintaining change to improve diabetes management.  Conclusion  The complexities of implementing change in daily life to improve glycaemic control indicate the need for ongoing support post intervention, which may increase and maintain the effectiveness of the intervention