Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents

Objective: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. Methods: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. Results: Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. Conclusions: Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members

What do GPs and Bereaved Parents Think About Paediatric Oncologists and Palliative Care?

Aim The aim of the study was to examine the experiences of bereaved parents and general practitioners (GPs) following the death of a child with cancer within the family home. This presenta-tion focuses on one of the findings; the parent and GP views on the hospital consultants’ involvement in the palliative care. Design A community based qualitative study.Setting West Midlands region, UK. Participants Purposeful sample of 18 GPs and 11 bereaved families. The sample was drawn from the families and GPs of children who had been treated for cancer at a regional childhood cancer centre and who subsequently died within the family home. Methods One-to-one semi-structured tape-recorded interviews were undertaken with GPs and bereaved parents following the death at home of a child with cancer. GPs were contacted three months after the death of the child and the parents at six months. Thematic analysis of the transcriptions was undertaken. Findings Parents described feeling abandoned at the transition to palliation when management of care transferred to the GP. Families did not perceive a seamless service of medical care between hospital and community. Where offered consultant contact was valued by families and GPs. Text and email were used by families as a means of asking the consultant questions. The GPs lacked role clarity where the consultant continued involvement in the care. Conclusions The transition to palliation and the transfer of care to community services needs to be sensitively and actively man-aged for the family and the GP. Medical care between tertiary andprimary care should be seen as a continuum. Improving GP: consultant communication could aid role clarity, identify mecha-nisms for support and advice, and promote the active engagement of the GP in the care. Exploring opportunities for integrated con-sultant: GP working could maximise mutual learning and support and enhance care provision. The level, access and duration of ongoing contact between consultants and families/GPs require clarity.

Providing Palliative Care for the Child with Cancer: The Experience of GPs

Background Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007). A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home. Methods Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs. Findings This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll. Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity. Conclusions/points of interest Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care. This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).

The Political Economy of Reproduction: Motherhood, Work and the Home in Neoliberal Britain

This thesis investigates how the processes and practices of reproduction have been transformed not only by the ascendant political rationality of neoliberalism but also by women’s struggles that have reconfigured motherhood, the domestic home and the gendered organisation of employment. Through exploring both the 1970s feminist demand for “free 24- hour nurseries” and the contemporary provision of extended, overnight and flexible childcare, care that is often referred to as “24-hour childcare”, the research contributes to feminist understandings of the gendered and racialised class dynamics inside and outside the home and the wage. The research repositions the ‘Woman Question’ as, yet again unavoidable and necessary for comprehending and intervening in the brutalising consequences of capitalist accumulation. Situated within the Marxist feminist tradition, the work of reproduction is understood as a cluster of tasks, affective relations and employment that have historically been constructed and experienced as ‘women’s work’. The interrelation between the subjectivity of motherhood and the political economy of reproduction is analysed through a feminist genealogy of 24-hour childcare in Britain. Using ethnographic encounters, archival research and interview data with mothers and childcare workers, the research tells a story about the women who have worked both inside and outside the home, raised children, cooked and cleaned, and who, both historically and in the present, continue to create an immense amount of wealth and value. As women's labour market participation has steadily increased over the last 40 years, the discourse of reproduction has shifted to one in which motherhood is increasingly constructed as a choice. Within neoliberal discourse the decision to have a child is constructed as a private matter for which individuals bear the costs and responsibility. The thesis argues that, as a result of motherhood being constructed more and more as something that is chosen, the spaces of resistance and opposition towards motherhood have been limited and resistance has been individuated and privatised.

Interprofessional collaboration in nursing homes (interprof): A grounded theory study of general practitioner experiences and strategies to perform nursing home visits

Background: Interprofessionalism, considered as collaboration between medical professionals, has gained prominence over recent decades and evidence for its impact has grown. The steadily increasing number of residents in nursing homes will challenge medical care and the interaction across professions, especially nurses and general practitioners (GPS). The nursing home visit, a key element of medical care, has been underrepresented in research. This study explores GP perspectives on interprofessional collaboration with a focus on their visits to nursing homes in order to understand their experiences and expectations. This research represents an aspect of the interprof study, which explores medical care needs as well as the perceived collaboration and communication by nursing home residents, their families, GPS and nurses. This paper focusses on GPS' views, investigating in particular their visits to nursing homes in order to understand their experiences. Methods: Open guideline-interviews covering interprofessional collaboration and the visit process were conducted with 30 GPS in three study centers and analyzed with grounded theory methodology. GPS were recruited via postal request and existing networks of the research partners. Results: Four different types of nursing home visits were found: visits on demand, periodical visits, nursing home rounds and ad-hoc-decision based visits. We identified the core category "productive performance" of home visits in nursing homes which stands for the balance of GPŚ individual efforts and rewards. GPS used different strategies to perform a productive home visit: preparing strategies, on-site strategies and investing strategies. Conclusion: We compiled a theory of GPS home visits in nursing homes in Germany. The findings will be useful for research, and scientific and management purposes to generate a deeper understanding of GP perspectives and thereby improve interprofessional collaboration to ensure a high quality of care.

20 Common Nursing Home Problems - and How to Resolve Them, July 2015

Includes a brief introduction to Medicare & Medicaid, 20 problems common to nursing facilities & suggestions as how to resolve them.

Office of the State Long-Term Care Ombudsman: Role in Involuntary Discharges, November 25, 2014

Iowa law requires that a copy of the Notice of an Involuntary Discharge action given to residents of nursing facilities or residential care facilities also be given to the Office of the State Long-Term Care Ombudsman. In addition, the law requires that a copy of the Notice of an Involuntary Transfer/Eviction action given to tenants of an elder group home or assisted living program also be given to the Office of the State Long-Term Care Ombudsman.

Chronic respiratory diseases and quality of life in elderly nursing home residents

Few studies have assessed the quality of life (QOL) related to chronic respiratory diseases in the elderly. In the framework of the geriatric study on the health effects of air quality in elderly care centers (GERIA) study, a questionnaire was completed by elderly subjects from 53 selected nursing homes. It included various sections in order to assess respiratory complaints, QOL (World Health Organization QOL (WHOQOL)-BREF), and the cognitive and depression status. The outcome variables were the presence of a score lower than 50 (<50) in each of the WHOQOL-BREF domains (physical health, psychological health, social relationships, and environmental health). Chronic bronchitis, frequent cough, current wheezing, asthma, and allergic rhinitis were considered as potential risk factors. The surveyed sample was (n = 887) 79% female, with a mean age of 84 years (SD: 7 years). In the multivariable analysis, a score of <50 in the physical domain was associated with wheezing in the previous 12 months (odds ratio (OR): 2.03, confidence interval (CI): 1.25-3.31) and asthma (OR: 1.95, CI: 1.12-3.38). The psychological domain was related with a frequent cough (OR: 1.43, CI: 0.95-2.91). A score of <50 in the environmental domain was associated with chronic bronchitis (OR: 2.89, CI: 1.34-6.23) and emphysema (OR: 3.89, CI: 1.27-11.88). In view of these findings, the presence of respiratory diseases seems to be an important risk factor for a low QOL among elderly nursing home residents.

Foster Fathers: their experiences and contributions to fostering

The paper reports some of the findings of an exploratory study which looks at foster fathers’ experiences of fostering and discusses their routes into foster care and their perspectives on their roles and tasks. The study collected quantitative and qualitative data by approaching all foster fathers registered with a single independent fostering agency based in southeast England. They were asked about their personal and professional attributes, and their experiences of and views concerning the role of foster father. The study discusses the foster fathers’ motivation to foster, and argues that what they see as its positives and drawbacks, and how it fits into their own family lives, are all relevant to improving service recruitment, delivery and retention. The study produced some evidence about the distinctive and positive contribution which foster fathers see themselves making to the lives of the children they foster. Further research is needed to refine our knowledge of what this contribution may be. Such knowledge could potentially develop our understanding of the roles of fathers in child development more generally as well as fine-tuning practice in matching what particular placements have to offer to the needs of individual children.

Can foster carers help children resolve their emotional and behavioural difficulties?

Although foster care is generally seen as providing a positive experience for the children and young people for whom it caters, it is rarely conceived of as a place where the children are helped to address their emotional difficulties and modify their often difficult behaviour. Yet research evidence suggests that some foster carers are consistently less likely to have placements which break down, and that foster carers who show particular skills in parenting can make a difference to successful outcomes. The paper draws on a large longitudinal study of foster care to argue that it is possible to learn from what these foster carers do in order to develop these skills in others. A model of successful foster care. developed from the main statistical part of the study is first described. Two cases from the qualitative, case studies component of the research are then analysed to demonstrate a quality of responsive parenting. The model is further developed within the framework of the dynamic of attachment and interest sharing proposed by Heard and Lake, to show how this can be used as a basis for future approaches to working with foster placements.

The patient-provider relationship and antenatal care uptake at two referral hospitals in Malawi: A qualitative study

Background In post-stroke patients, impairment of quality of life (QOL) has been associated with functional impairment, age, anxiety, depression, and fatigue. Good social support, higher education, and better socioeconomic status are associated with better QOL among stroke survivors. In Africa, studies from Nigeria and Tanzania have reported on post-stroke QOL. Background Approximately 90% of Malawian women attend antenatal care at least once during their pregnancies; however, most mothers first present during months five and six and do not adhere to the World Health Organization’s recommended four visits. The objective of this study was to explore the role the patient-provider relationship has on antenatal care uptake. Methods A qualitative study, consisting of interviews with 20 urban pregnant mothers and eight health workers, was conducted from September to December 2014. Two large tertiary care hospitals in the Central and Southern regions of Malawi were selected as study sites. Results Several factors influenced antenatal care attendance. Significant barriers reported included the patient-provider relationship, clinic wait times, family and friend support, distance from home to the clinic, transportation, cost, and number of visits. The patient-provider relationship appears to have a large impact on antenatal clinic participation. Mothers indicated that health workers often mistreat or demean them during visits. Additionally, health workers revealed that, due to staff shortages, patients often do not receive the care they deserve. Conclusions The results of this study suggest that, in addition to other factors, healthcare provider attitudes influence antenatal clinic attendance. Improving the patient-provider relationship may increase antenatal clinic attendance and decrease pregnancy complications during pregnancy. Professional development opportunities and quality improvement programmes are would help improve patient care and health outcomes while the continued staff shortages in the country are addressed.

Pneumonia and influenza: specific considerations in care homes

This review provides an update on current evidence surrounding epidemiology, treatment and prevention of lower respiratory tract infection, with special reference to pneumonia and influenza, in care home residents. The care home sector is growing and provides a unique ecological niche for infections, housing frail older people with multiple comorbidities and frequent contact with healthcare services. There are therefore considerations in the epidemiology and management of these conditions which are specific to care homes. Opportunities for prevention, in the form of vaccination strategies and improving oral hygiene, may reduce the burden of these diseases in the future. Work is needed to research these infections specifically in the care home setting and this article highlights current gaps in our knowledge.

Palliative care team visits. Qualitative study through participant observation

Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients\' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.

Evaluation of two instruments of perceived symptom intensity in palliative care patients in an outpatient clinic

AIMS AND OBJECTIVES: To evaluate the test-retest stability in assessments of perceived symptom intensity on the Edmonton Symptom Assessment System-revised and the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire Core 15 Palliative. The possible interchangeability between the instruments and the patients' experiences of completing the instruments were also studied. BACKGROUND: The two instruments assess the same symptoms, but the symptom intensity is assessed on 11-point numerical scales on the Edmonton Symptom Assessment System-revised and on four-point verbal descriptive scales on the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire Core 15 Palliative. Both instruments are commonly used; however, uncertainty exists about which instrument should be recommended and about the interchangeability of the instruments. DESIGN: This study used a test-retest design with inter-scale comparisons. METHODS: Data from 54 patients with cancer who were receiving palliative care in an oncology outpatient clinic were self-reported by the patients in the clinic, at home and when patients returned to the clinic. RESULTS: The assessments on the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire Core 15 Palliative verbal rating scales showed a higher level of test-retest stability than the assessments on the Edmonton Symptom Assessment System-revised numerical scoring scales, indicating higher reliability. The correspondence between the verbal categories and the numerical scores of symptom intensity were low because different verbal categories were used by patients who assessed the same numerical score. CONCLUSIONS: The test-retest stability in the assessments was higher on the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire Core 15 Palliative and the results show that assessments on the two instruments could not be used interchangeably. Therefore, the symptom instrument chosen must be specified and unchanged within a patient to improve efficacy in clinical practice. RELEVANCE TO CLINICAL PRACTICE: The Edmonton Symptom Assessment System-revised or the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire Core 15 Palliative can be used for initial assessments of patients, but should not be compared or used interchangeably. It is vitally important to have individual follow-up for all patients who score an instrument.