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.

Outcomes of a general hospital-based Home Parenteral Nutrition (HPN) program: report of our experience from a 26-year period

Background: Home parenteral nutrition (HPN) was introduced in Spain in the late 1980s. Our hospital was a pioneering medical centre in this field. Aim: Analyze outcomes of our HPN program. Methods: Retrospective study of patients receiving HPN between 1986-2012. Study variables are expressed as frequency, mean ± SD (range), median [interquartile range]. Parametrics, non-parametrics test and survival analysis (p < 0.05) were applied. Results: 91 patients (55 females and 36 males, mean age: 50.6 ± 5 yrs.) who received HPN for an accrual period of 55,470 days (median: 211 days [range: 63-573]) were included. The most prevalent underlying condition was cancer (49.5%), with the commonest HPN indication being short bowel syndrome (41.1%). The most frequently used catheter type was the tunneled catheter (70.7%). The complication rate was 3.58/1,000 HPN days (2.68, infection; 0.07, occlusion; 0.07 thrombosis; and 0.59, metabolic complications). Complications were consistently associated with both the underlying condition and HPN length. Infections were most frequent within the first 1,000 days of HPN. Liver disease incidence was related to HPN duration. HPN could be discontinued in 42.3% of patients. Ten-year survival rate was 42%, and varied across the underlying conditions. Conclusions: In the present series, the commonest reason for HPN was cancer. Our complication rate is in keeping with that reported in the literature. The overall survival rate was 42%, and varied across the underlying conditions.

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.

Ethical aspects of children’s perceptions of information-giving in care

The aim of this study was to identify key aspects in the exchange of information and to determine how nurses communicate news to hospitalised children. For this study, we applied the critical incident technique with 30 children aged between 8 and 14 years. Data were collected in paediatric units in a hospital in Alicante (Spain) using participant observation and semi-structured interviews. The analysis yielded three main categories: the children’s reaction to the information, nursing staff behaviour as a key aspect in the exchange of information and communication of news as well as children’s experience. This article emphasises the need to promote children’s consent and participation in nursing interventions. An analysis of these aspects will verify whether children’s rights are being respected and taken into account in order to promote children’s well-being and adaptation to hospitalisation.

Quality of implementation in evidence-based positive parenting programs in Spain: Introduction to the special issue

The main contribution of this special issue is to present evaluation studies involving large-scale experiences of implementation of positive parenting programs delivered through home, group-based, and on-line formats in Spain. Two research questions were addressed: (1) what factors affect implementation; and (2) for whom and under which implementation conditions the programs lead to positive outcomes. Target populations were mainly families from low and middle socioeconomic backgrounds, and parents at psychosocial risk attending family support services in need of improving their parenting skills. All the programs fall under the umbrella of the positive parenting initiative launched by the Council of Europe, are evidence-based, follow a collaborative schema with national, regional, or local authorities, have multi-site implementation, and are supported by highly experienced researchers from Spanish universities. Special attention is given to the program adaptations to different contexts, the profile of parents who benefited most from the programs, analyses of the implementation process, and the assessment of parenting programs in the community. The information provided will help to increase our knowledge of evidence-based parenting programs in Spain, their implementation processes and results, and the future challenges that need to be addressed to continue the current expansion of evidence-based parenting programs.

Provision of care services for rheumatic and musculoskeletal diseases-related foot and ankle problems: a survey from sixteen european countries

Background: The increased prevalence of foot and ankle pathologies in Rheumatic and Musculoskeletal diseases (RMDs) is well documented1, however the provision of foot & ankle (F&A) healthcare services for people with RMDs in Europe has not been evaluated. Objectives: To assess the current healthcare systems for providing foot & ankle healthcare services for people with RMDs in Europe. Methods: A survey was undertaken to evaluate current provision of F&A health care services for people with RMDs across Europe. A questionnaire was distributed to all 22 country presidents representing HP associations within EULAR. The questionnaire used was developed and piloted (in 7 countries) by the EULAR F&A Study Group, and structured to capture the provision and type of F&A services for people with RMDs. When the HP presidents felt unable to answer specific questions they were encouraged to consult a colleague who may be better placed to provide the answers. Results: Sixteen questionnaires were completed (Norway, Ireland, Sweden, Hungary, Netherlands, UK, Denmark, Portugal, Italy, Switzerland, Austria, France, Czech Republic, Spain, Belgium, Malta). Of the 16, 13 respondents indicated provision of F&A health care services in their country, but only three countries had services specialising in RMD-related F&A problems (Netherlands, UK, Malta). The professions providing the care for patients with RMD-related F&A problems were different depending on the pathology and the country (Table1). Podiatrists provided care for F&A pain and deformity problems in 11 countries, but provided F&A ulcer care in only 8 countriesConclusions: Only 3 countries have F&A health care services specialised to the needs of people with RMDs. The professions providing the care varied between countries, and also depended on the F&A pathology. Interestingly, F&A healthcare services were provided by professions that do not solely specialised in F&A care. Further research is needed to assess the variation of F&A healthcare services between and within European countries and the impact on healthcare of various F&A healthcare service designs. References: Woodburn, J. & Helliwell, P. Foot problems in rheumatology. Rheumatology 36, 932-934 (1997).