Childhood long-term conditions in primary care: a qualitative study of practitioners’ views

Background

Improving child health and wellbeing in England was the key focus of the Chief Medical Officer’s Annual Report 2012, which recommended that all children with long-term conditions (LTCs) have a named GP responsible for their care. Little is known, however, about practitioners’ views and experiences of supporting children with LTCs in primary care.

Aim

To explore practitioners’ views of supporting children with LTCs and their families in primary care.

Design and setting

Qualitative interview study in primary care settings in South Yorkshire, England.

Method

Interviews explored practitioners’ views and experiences of supporting children with asthma, cystic fibrosis, type 1 diabetes, and epilepsy. Interviews were audiotaped, transcribed verbatim, and analysed using the framework approach.

Results

Nineteen practitioners were interviewed: 10 GPs, five practice nurses, and four nurse practitioners. The GPs’ clinical roles included prescribing and concurrent illness management; nurse practitioners held minor illness clinics; and practice nurses conduct asthma clinics and administer immunisations. GPs were coordinators of care and provided a holistic service to the family. GPs were often unsure of their role with children with LTCs, and did not feel they had overall responsibility for these patients. Confidence was dependent on experience; however, knowledge of GPs’ own limits and accessing help were felt to be more important than knowledge of the condition.

Conclusion

Primary care has a valuable role in the care of children with LTCs and their families. This study suggests that improving communication between services would clarify roles and help improve the confidence of primary care practitioners.     

Exploring the rewards and challenges of paediatric palliative care work – a qualitative study of a multi-disciplinary children’s hospice care team

Background

Children’s hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is known about the role of children’s hospice staff and the factors that may impact on their wellbeing at work. This study explored the rewards and challenges of working in a children’s hospice with an aim to identify staff support and development needs.

Methods

We conducted an exploratory, qualitative study involving thematic analysis of semi-structured interviews with 34 staff and three focus groups with 17 staff working in a multi-disciplinary care team in a UK children’s hospice.

Results

Participants identified rewards and challenges related to the direct work of caring for children and their families; team dynamics and organisational structures; and individual resilience and job motivation. Participants described the work as emotionally intensive and multi-faceted; ‘getting it right’ for children was identified as a strong motivator and reward, but also a potential stressor as staff strived to maintain high standards of personalised and emotional care. Other factors were identified as both a reward and stressor, including team functioning, the allocation of work, meeting parent expectations, and the hospice environment. Many participants identified training needs for different aspects of the role to help them feel more confident and competent. Participants also expressed concerns about work-related stress, both for themselves and for colleagues, but felt unable to discuss this at work. Informal support from colleagues and group clinical reflection were identified as primary resources to reflect on and learn from work and for emotional support. However, opportunities for this were limited.

Conclusions

Providing regular, structured, and dedicated clinical reflection provides a mechanism through which children’s hospice staff can come together for support and learning, and demonstrates an organisational commitment to staff wellbeing and development. Being aware of children’s hospice specific rewards and challenges can help to ensure that staff feel supported and competent in their role. Breaking down barriers to discussing work-related stress and enhancing awareness about early signs of burnout is also important.

     

The relationships between the combination of person- and organization-related conditions and patients’ perceptions of palliative care quality

Background

Little is known about the combination of person- and organization- related conditions and the relationships with patients’ perspectives of care quality. Such a combination could contribute knowledge reflecting the complexity of clinical practice, and enhance individualized care. The aim was to investigate the relationships between the combination of person- and organization-related conditions and patients’ perceptions of palliative care quality.

Methods

A cross-sectional study, including 191 patients in the late palliative phase (73% response rate) admitted to hospice inpatient care (n =?72), hospice day care (n =?51), palliative units in nursing homes (n =?30) and home care (n =?38), was conducted between November 2013 and December 2014, using the instrument Quality from the Patients’ Perspective specific to palliative care (QPP-PC). Data were analysed, using analysis of covariance, to explore the amount of the variance in the dependent variables (QPP-PC) that could be explained by combination of the independent variables – Person- and organization-related conditions, ? while controlling for differences in covariates.

Results

Patients scored the care received and the subjective importance as moderate to high. The combination of person- and organization - related conditions revealed that patients with a high sense of coherence, lower age (person – related conditions) and being in a ward with access to and availability of physicians (organization-related condition) might be associated with significantly higher scores for the quality of care received. Gender (women), daily contact with family and friends, and low health-related quality of life (person-related conditions) might be associated with higher scores for subjective importance of the aspects of care quality.

Conclusion

Healthcare personnel, leaders and policy makers need to pay attention to person- and organization-related conditions in order to provide person-centered palliative care of high quality. Further studies from palliative care contexts are needed to confirm the findings and to investigate additional organizational factors that might influence patients’ perceptions of care quality.

     

‘Worried to death’: the assessment and management of anxiety in patients with advanced life-limiting disease,a national survey of palliative medicine physicians

Background

Anxiety adversely affects quality of life and is common in adults with advanced life-limiting disease. There are no UK-wide guidelines on the assessment and management of anxiety in this specific population and there is little evidence regarding drug treatments. This study aimed to explore how palliative care physicians assess and manage anxiety in their patients, and to identify barriers encountered.

Methods

A cross-sectional survey was undertaken of all physicians working in specialist palliative care in the UK who were members of the Association for Palliative Medicine. This was conducted in February 2014 using an online questionnaire.

Results

The response rate was 23% (230/980) and 61% of respondents were consultants. Most did not use tools to screen for anxiety (87%) and almost all used the clinical interview to diagnose anxiety (99%). Only 8% used psychiatric criteria. Most physicians reported difficulties managing anxiety (93%). Only 33% thought they had adequate training in this area. Most had difficulty accessing psychological and/or psychiatric services (71%, 64% respectively). The majority used a combination of pharmacological and non-pharmacological treatments for anxiety. The most frequently prescribed first-line medications for patients with a prognosis of days to weeks were benzodiazepines (93%), usually lorazepam. The use of benzodiazepines over antidepressants was statistically significant (p?<?0.001). For patients with a prognosis of months, antidepressants were most frequently prescribed first-line (60%), significantly more than benzodiazepines (p?<?0.001). However, benzodiazepine use was still common in this prognostic group with 47% prescribing it first-line, sometimes in combination with an antidepressant.

Conclusion

This is the first national survey on the assessment and management of anxiety in palliative care. Findings demonstrate the infrequent use of screening tools, variation in prescribing practice, potentially inappropriate use of benzodiazepines for patients with a prognosis of months, training gaps and poor access to psychological and psychiatric services in the UK. This highlights the need for formal training, further research into the pharmacological management of anxiety in this population and evidence-based national guidance to support clinical decision-making and service development.

     

Changing mothers’ perception of infant emotion: a pilot study

Cognitive bias modification (CBM) techniques, which experimentally retrain abnormal processing of affective stimuli, are becoming established for various psychiatric disorders. Such techniques have not yet been applied to maternal processing of infant emotion, which is affected by various psychiatric disorders. In a pilot study, mothers of children under 3 years old (n?=?32) were recruited and randomly allocated to one of three training exercises, aiming either to increase or decrease their threshold of perceiving distress in a morphed continuum of 15 infant facial images. Differences between pre- and post-training threshold were analysed between and within subjects. Compared to baseline thresholds, the threshold for perceiving infant distress decreased in the lowered threshold group (mean difference ?1.7 frames, 95 % confidence intervals (CI) ?3.1 to ?0.3, p?=?0.02), increased in the raised threshold group (1.3 frames, 95 % CI 0.6 to 2.1, p?<?0.01) and was unchanged in the control group (0.1 frames, 95 % CI ?0.8 to 1.1, p?=?0.80). Between-group differences were similarly robust in regression models and were not attenuated by potential confounders. The findings suggest that it is possible to change the threshold at which mothers perceive ambiguous infant faces as distressed, either to increase or decrease sensitivity to distress. This small study was intended to provide proof of concept (i.e. that it is possible to alter a mother’s perception of infant distress). Questions remain as to whether the effects persist beyond the immediate experimental session, have an impact on maternal behaviour and could be used in clinical samples to improve maternal sensitivity and child outcomes.     

Patients’ perceptions of palliative care: adaptation of the Quality from the Patient’s Perspective instrument for use in palliative care,and description of patients’ perceptions of care received

Background

Globally, the number of people who die with dementia is increasing. The importance of a palliative approach in the care of people with dementia is recognised and there are national polices to enhance current care. In the UK implementation of these polices is promoted by the National Institute for Health and Care Excellence (NICE) Dementia Quality Standards (QS). Since publication of the QS new care interventions have been developed.

Aim

To explore critically the current international research evidence on effect available to inform NICE Dementia QS relevant to end of life (EOL) care.

Design

We used systematic review methods to seek the research evidence for three statements within the Dementia QS. These are those that recommend: (1) a case management approach, (2) discussing and consideration of making a statement about future care (SFC) and (3) a palliative care assessment (PCA). We included evaluative studies of relevant interventions that used a comparative design, such as trials and cohort studies, and measured EOL care outcomes for persons dying with moderate to severe dementia. Our primary outcome of interest was whether the intervention led to a measurable impact on wellbeing for the person with dementia and their family. We assessed included studies for quality using a scale by Higginson and colleagues (2002) for assessment of quality of studies in palliative care, and two authors undertook key review processes. Data sources included Cinahl, Embase, and PsychINFO from 2001 to August 2014. Our search strategy included free text and medical subject headings relevant to population and recommended care.

Results

We found seven studies evaluating a care intervention; four assessed SFC, three PCA. None assessed case management. Studies were of weak design; all used retrospective data and relied on others for precise record keeping and for accurate recall of events. There was limited overlap in outcome measurements. Overall reported benefits were mixed.

Conclusions

Quality statements relevant to EOL care are useful to advance practice however they have a limited evidence base. High quality empirical work is needed to establish that the recommendations in these statements are best practice.

     

Diagnosing headache in primary care: a qualitative study of GPs’ approaches

Background

Headache is one of the most common symptoms in primary care. Most headaches are due to primary headaches and many headache sufferers do not receive a specific diagnosis. There is still a gap in research on how GPs diagnose and treat patients with headache.

Aim

To identify GPs’ diagnostic approaches in patients presenting with headache.

Design and setting

Qualitative study with 15 GPs in urban and rural practices.

Method

Interviews (20–40 minutes) were conducted using a semi-structured interview guideline. GPs described their individual diagnostic strategies by means of patients presenting with headache that they had prospectively identified during the previous 4 weeks. Interviews were taped and transcribed verbatim. Qualitative analysis was conducted by two independent raters.

Results

Regarding GPs’ general diagnostic approach to patients with headache, four broad themes emerged during the interviews: ‘knowing the patient and their background’, ‘first impression during consultation’, ‘intuition and personal experience’ and ‘application of the test of time’. Four further themes were identified regarding the management of diagnostic uncertainty: ‘identification of red flags’, ‘use of the familiarity heuristic’, ‘therapeutic trial’, and ‘triggers for patient referral’.

Conclusion

GPs apply different strategies in the early diagnostic phase when managing patients with headache. Identification of potential adverse outcomes accompanied by other strategies for handling uncertainty seem to be more important than an exact diagnosis. Established guidelines do not play a role in the diagnostic workup.     

Operationalising unscheduled care policy: a qualitative study of healthcare professionals’ perspectives

Background

UK health policy aims to reduce the use of unscheduled care, by increasing proactive and preventative management of patients with long-term conditions in primary care.

Aim

The study explored healthcare professionals’ understanding of why patients with long-term conditions use unscheduled care, and the healthcare professionals’ understanding of their role in relation to reducing the use of unscheduled care.

Design and setting

Qualitative study interviewing different types of healthcare professionals providing primary care or unscheduled care services in northwest England.

Method

Semi-structured interviews were conducted with 29 healthcare professionals (six GPs; five out-of-hours GPs; four emergency department doctors; two practice nurses; three specialist nurses; two district nurses; seven active case managers). Data were analysed using framework analysis.

Results

Healthcare professionals viewed the use of unscheduled care as a necessary component of care for patients with long-term conditions. Those whose roles involved working to targets to reduce the use of unscheduled care described a tension between this and delivering optimum patient care. Three approaches to reducing unscheduled care were described: optimising the system; negotiating the system; and optimising the patient.

Conclusion

Current policy to reduce the use of unscheduled care does not take account of the perceptions of the healthcare professionals who are expected to implement them. Lipsky’s theory of street-level bureaucrats provides a framework to understand how healthcare professionals respond to imposed policies. Healthcare professionals did not see the use of unscheduled care as a problem and there was limited commitment to the policy targets. Therefore, policy should aim for whole-system change rather than reliance on individual healthcare professionals to make changes in their practice.     

Learning to care: medical students’ reported value and evaluation of palliative care teaching involving meeting patients and reflective writing

Background

Over recent years there has been an increase in teaching of both palliative care and reflective practice in UK medical schools. The palliative care teaching at the University of Cambridge School of Clinical Medicine is multi-faceted and involves students writing reflective essays after individually meeting patients approaching the end of life during their final year general practice and hospital medicine placements. This paper draws on two studies examining this teaching element to analyse what the students found valuable about it and to comment on the practice of meeting patients and subsequent reflective writing.

Methods

Two studies have explored students’ perceptions of these course components. The first was a thematic analysis of 234 reflective essays from 123 students written in 2007-2008, including examining what students wrote about the exercise itself. The second project involved a semi-structured questionnaire that students completed anonymously; this paper reports on the free text elements of that study [sample size =107]. Since similar themes were found in both studies, the coding structures from each project were compared and combined, enabling triangulation of the findings around what the students found valuable from the palliative care teaching involving meeting patients and reflective writing.

Results

Overall, students reported that these components of the palliative care teaching are valuable. Four main themes were identified as aspects that students valued: (1) dedicated time with patients, (2) learning about wider elements of treatment and holistic care, (3) practicing communication skills, and (4) learning about themselves through reflective writing. Some students expressed a dislike for having to formally write a reflective essay.

Conclusion

It is possible to arrange for all of the medical students to individually meet at least two patients receiving palliative or end of life care. Students found these encounters valuable and many wrote about the benefit of formally writing about these experiences. Students reported finding this model useful in widening their skill-set and understanding of palliative care.

     

Spirituality,satisfaction with life and health-related behavior of older residents of long-term care institutions—a pilot study

Spirituality and satisfaction with life are psychological factors related to health behavior. The aim of the study was to determine whether satisfaction with life acts as a mediator in the relationship between the spirituality of residents of long-term care institutions and their health-related behavior. A total of 102 people aged 60–99 were examined. It was found that satisfaction with life played a mediating role in the relationship between spirituality and health behavior. The study addresses the gap in knowledge regarding institutionalized older adults, exploring the role of spirituality and satisfaction with life on lifestyle in nursing home settings.     

Decomposition and entomological colonization of charred bodies – a pilot study

Aim

To use forensic entomological approach to estimate the post mortem interval (PMI) in burnt remains.

Methods

Two experiments were performed in a field in the outskirts of Milan, in winter and summer 2007. Four 60-kg pigs were used: two for each experiment. One pig carcass was burnt until it reached the level 2-3 of the Glassman-Crow scale and the not-burnt carcass was used as a control. In order to describe the decomposition process and to collect the data useful for minimum PMI estimation, macroscopic, histological, and entomological analyses were performed.

Results

In the winter part of the experiment, the first insect activity on the burnt carcass began in the third week (Calliphora vomitoria) and at the beginning of the fourth week an increase in the number of species was observed. In the summer part, adult flies and first instar maggots (Phormia regina) appeared a few minutes/hours after the carcass exposure. Both in winter and summer, flies belonging to the first colonization wave (Calliphoridae) appeared on burnt and control pigs at the same time, whereas other species (Diptera and Coleoptera) appeared earlier on burnt pigs.

Conclusion

In forensic practice, burnt bodies are among the most neglected fields of entomological research, since they are supposed to be an inadequate substratum for insect colonization. Entomological approach for PMI estimation proved to be useful, although further studies on larger samples are needed.Estimation of the post mortem interval (PMI) plays an important role in forensic investigation. In the early post mortem period, PMI can be estimated by temperature-based methods, but when decomposition begins, this estimation can be influenced by several variables (1,2). In addition, in cases of concealment, body dismemberment, explosion, and burning there is no standardized method based on experimental studies for deriving time since death from morphological characteristics of the corpse.Entomological approach is a well known and widely accepted method to estimate the minimum PMI (3). However, in the literature there are only a few cases referring to charred bodies (4-8). Gruenthal et al (9) found dung fly Scathophaga stercoraria, larvae of Calliphora vicina and Calliphora vomitoria, and immature beetle forms, not further identified in 24 pig carcasses charred up to Glassman Crow scale-1 (GCS-1) for the head, neck, limbs, and CGS 2 for the torso. Catts and Goff (6) observed a few days’ delay in the arrival of blowflies on a corpse burnt and charred inside an open-topped metal drum, and a week’s delay in the case of a pig burnt inside a car that was set afire (6). Introna et al (4) also highlighted that burnt flesh delayed the arrival of blowflies. Due to the relevant lack of literature, the aim of our study was to report the results of an experimental approach to burnt bodies using pigs (Sus scrofa) as models.     

The ‘added value’ GPs bring to commissioning: a qualitative study in primary care

Background

The 2012 Health and Social Care Act in England replaced primary care trusts with clinical commissioning groups (CCGs) as the main purchasing organisations. These new organisations are GP-led, and it was claimed that this increased clinical input would significantly improve commissioning practice.

Aim

To explore some of the key assumptions underpinning CCGs, and to examine the claim that GPs bring ‘added value’ to commissioning.

Design and setting

In-depth interviews with clinicians and managers across seven CCGs in England between April and September 2013.

Method

A total of 40 clinicians and managers were interviewed. Interviews focused on the perceived ‘added value’ that GPs bring to commissioning.

Results

Claims to GP ‘added value’ centred on their intimate knowledge of their patients. It was argued that this detailed and concrete knowledge improves service design and that a close working relationship between GPs and managers strengthens the ability of managers to negotiate. However, responders also expressed concerns about the large workload that they face and about the difficulty in engaging with the wider body of GPs.

Conclusion

GPs have been involved in commissioning in many ways since fundholding in the 1990s, and claims such as these are not new. The key question is whether these new organisations better support and enable the effective use of this knowledge. Furthermore, emphasis on experiential knowledge brings with it concerns about representativeness and the extent to which other voices are heard. Finally, the implicit privileging of GPs’ personal knowledge ahead of systematic public health intelligence also requires exploration.     

The study protocol of: ‘Initiating end of life care in stroke: clinical decision-making around prognosis’

Background

The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population.

Methods/design

This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage.

Discussion

This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

     

Clinical aspects of palliative care in advanced Parkinson’s disease

Parkinson's disease (PD) is one of the most common neurodegenerative disorders of the elderly population. Few therapeutic options are available for patients with PD requiring palliative care. Treatment of the early stages of PD is entirely different from later stages. During the later stages, the palliative care model is introduced to provide the patient with comfort and support. Early palliative care in PD requires minimization of dyskinesias and decreasing occurrence of motor and non-motor off times in an effort to maximize independent motor function. In the later stages, the focus of treatment shifts to treating the predominant non-motor symptoms and having a more supportive and palliative nature. The purpose of this review is to provide a summary of the palliative care management issues and palliative care management options of end-stage PD patients.