A planning model for needs analysis for subacute care

The purpose of this study is to produce a model to be used by state regulating agencies to assess demand for subacute care. In accomplishing this goal, the study refines the definition of subacute care, demonstrates a method for bed need assessment, and measures the effectiveness of this new level of care. This was the largest study of subacute care to date. Research focused on 19 subacute units in 16 states, each of which provides high-intensity rehabilitative and/or restorative care carried out in a high-tech unit. Each of the facilities was based in a nursing home, but utilized separate staff, equipment, and services. Because these facilities are under local control, it was possible to study regional differences in subacute care demand. Using this data, a model for predicting demand for subacute care services was created, building on earlier models submitted by John Whitman for the American Hospital Association and Robin E. MacStravic. The Broderick model uses the "bootstrapping" method and takes advantage of high technology: computers and software, databases in business and government, publicly available databases from providers or commercial vendors, professional organizations, and other information sources. Using newly available sources of information, this new model addresses the problems and needs of health care planners as they approach the challenges of the 21st century.

The development of an online neonatal intensive care unit family education

Background: British Columbia’s Fraser Health Authority (FHA) neonatal intensive care units (NICUs) value family centered care (FCC). Nevertheless, there is limited evidence that FCC is actually incorporated into practice, as well as some concern that FHA NICU education is inaccessible, inconsistent, or disorganized. Purpose: The mission of this project is to support the principles of FCC throughout the development of an FHA online NICU family education guide by reflecting upon the needs of families throughout their NICU journey. Methods: A needs assessment was initially completed and included literature reviews, consultations, and an environmental scan. This data informed development of an online NICU family education guide which plots current education materials along key stages of the NICU journey: prenatal, admission, early days, growing and developing, discharge and at home. For the purposes of this practicum, only the prenatal stage was fully developed and will serve as a template for other stages following a formative evaluation. A pamphlet and revised FHA Neonatal Checkpoint will also be developed to augment teaching by health care professionals. Implementation and evaluation plans were adapted from the Center for Disease Control Framework for Program Evaluation in Public Health. Results: The needs assessment validates and directs the development, implementation, and evaluation of the online guide illustrating an FCC approach. The online guide centralizes and organizes education by selecting education topics that relate to each stage of the NICU journey. This family-directed design enables families’ access to consistent and reliable information and offers them an opportunity to learn at their own pace. Conclusion: The process of creating, implementing, and evaluating an online family education program for FHA NICUs elucidates the intricacies and the advantages of integrating FCC into NICU practice.

End-of-life care in Ireland: ethical challenges and solutions. Opening Statement to the Houses of the Oireachtas Joint Committee on Health and Children, 24 October 2013.

Children Report on End of Life and Palliative Care in Ireland, Volume 1.

Behaviour change techniques in home-based cardiac rehabilitation: a systematic review

BACKGROUND: Cardiac rehabilitation (CR) programmes offering secondary prevention for cardiovascular disease (CVD) advise healthy lifestyle behaviours, with the behaviour change techniques (BCTs) of goals and planning, feedback and monitoring, and social support recommended. More information is needed about BCT use in home-based CR to support these programmes in practice.

AIM: To identify and describe the use of BCTs in home-based CR programmes.

DESIGN AND SETTING: Randomised controlled trials of home-based CR between 2005 and 2015 were identified by searching MEDLINE(®), Embase, PsycINFO, Web of Science, and Cochrane Database.

METHOD: Reviewers independently screened titles and abstracts for eligibility. Relevant data, including BCTs, were extracted from included studies. A meta-analysis studied risk factor change in home-based and comparator programmes.

RESULTS: From 2448 studies identified, 11 of good methodological quality (10 on post-myocardial infarction, one on heart failure, 1907 patients) were included. These reported the use of 20 different BCTs. Social support (unspecified) was used in all studies and goal setting (behaviour) in 10. Of the 11 studies, 10 reported effectiveness in reducing CVD risk factors, but one study showed no improvement compared to usual care. This study differed from effective programmes in that it didn't include BCTs that had instructions on how to perform the behaviour and monitoring, or a credible source.

CONCLUSION: Social support and goal setting were frequently used BCTs in home-based CR programmes, with the BCTs related to monitoring, instruction on how to perform the behaviour, and credible source being included in effective programmes. Further robust trials are needed to determine the relative value of different BCTs within CR programmes.

The impact of a simulated intervention on attitudes of undergraduate nursing and medical students towards end of life care provision

Background: The concerns of undergraduate nursing and medical students’ regarding end of life care are well documented. Many report feelings of emotional distress, anxiety and a lack of preparation to provide care to patients at end of life and their families. Evidence suggests that increased exposure to patients who are dying and their families can improve attitudes toward end of life care. In the absence of such clinical exposure, simulation provides experiential learning with outcomes comparable to that of clinical practice. The aim of this study was therefore to assess the impact of a simulated intervention on the attitudes of undergraduate nursing and medical students towards end of life care.
Methods: A pilot quasi-experimental, pretest-posttest design. Attitudes towards end of life care were measured using the Frommelt Attitudes Towards Care of the Dying Part B Scale which was administered pre and post a simulated clinical scenario. 19 undergraduate nursing and medical students were recruited from one large Higher Education Institution in the United Kingdom.
Results: The results of this pilot study confirm that a simulated end of life care intervention has a positive impact on the attitudes of undergraduate nursing and medical students towards end of life care (p < 0.001).
Conclusions: Active, experiential learning in the form of simulation teaching helps improve attitudes of undergraduate nursing and medical students towards end of life. In the absence of clinical exposure, simulation is a viable alternative to help prepare students for their professional role regarding end of life care.

UK consensus project on quality in palliative day services: developing a quality indicator set using the RAND/UCLA appropriateness method

Introduction
Evaluating quality of palliative day services is essential for assessing care across diverse settings, and for monitoring quality improvement approaches.

Aim
To develop a set of quality indicators for assessment of all aspects (structure, process and outcome) of care in palliative day services.

Methods
Using a modified version of the RAND/UCLA appropriateness method (Fitch et al., 2001), a multidisciplinary panel of 16 experts independently completed a survey rating the appropriateness of 182 potential quality indicators previously identified during a systematic evidence review. Panel members then attended a one day, face-to-face meeting where indicators were discussed and subsequently re-rated. Panel members were also asked to rate the feasibility and necessity of measuring each indicator.

Results
71 indicators classified as inappropriate during the survey were removed based on median appropriateness ratings and level of agreement. Following the panel discussions, a further 60 were removed based on appropriateness and feasibility ratings, level of agreement and assessment of necessity. Themes identified during the panel discussion and findings of the evidence review were used to translate the remaining 51 indicators into a final set of 27.

Conclusion
The final indicator set included information on rationale and supporting evidence, methods of assessment, risk adjustment, and recommended performance levels. Further implementation work will test the suitability of this ‘toolkit’ for measurement and benchmarking. The final indicator set provides the basis for standardised assessment of quality across services, including care delivered in community and primary care settings.

Reference

• Fitch K, Bernstein SJ, Aguilar MD, et al. The RAND/UCLA Appropriateness Method User’s Manual. Santa Monica, CA: RAND Corporation; 2001. http://www.rand.org/pubs/monograph_reports/MR1269

Étude exploratoire du recours à des interventions médicales de type "lourd' pour soulager la souffrance existentielle en fin de vie

Au cours du siècle dernier, des améliorations au niveau des conditions de vie ainsi que des avancées importantes dans les sciences biomédicales ont permis de repousser les frontières de la vie. Jusqu’au début du XXe Siècle, la mort était un processus relativement bref, survenant à la suite de maladies infectieuses et avait lieu à la maison. À présent, elle survient plutôt après une longue bataille contre des maladies incurables et des afflictions diverses liées à la vieillesse et a le plus souvent lieu à l’hôpital. Pour comprendre la souffrance du malade d’aujourd’hui et l’aborder, il faut comprendre ce qu’engendre comme ressenti ce nouveau contexte de fin de vie autant pour le patient que pour le clinicien qui en prend soin. Cette thèse se veut ainsi une étude exploratoire et critique des enjeux psychologiques relatifs à cette mort contemporaine avec un intérêt premier pour l’optimisation du soulagement de la souffrance existentielle du patient dans ce contexte. D’abord, je m’intéresserai à la souffrance du patient. À travers un examen critique des écrits, une définition précise et opérationnelle, comportant des critères distinctifs, de ce qu’est la souffrance existentielle en fin de vie sera proposée. Je poserai ainsi l’hypothèse que la souffrance peut être définie comme une forme de construction de l’esprit s’articulant autour de trois concepts : intégrité, altérité et temporalité. D’abord, intégrité au sens où initialement l’individu malade se sent menacé dans sa personne (relation à soi). Ensuite, altérité au sens où la perception de ses conditions extérieures a un impact sur la détresse ressentie (relation à l’Autre). Et finalement, temporalité au sens où l’individu souffrant de façon existentielle semble bien souvent piégé dans un espace-temps particulier (relation au temps). Ensuite, je m’intéresserai à la souffrance du soignant. Dans le contexte d’une condition terminale, il arrive que des interventions lourdes (p. ex. : sédation palliative profonde, interventions invasives) soient discutées et même proposées par un soignant. Je ferai ressortir diverses sources de souffrance propres au soignant et générées par son contact avec le patient (exemples de sources de souffrance : idéal malmené, valeurs personnelles, sentiment d’impuissance, réactions de transfert et de contre-transfert, identification au patient, angoisse de mort). Ensuite, je mettrai en lumière comment ces dites sources de souffrance peuvent constituer des barrières à l’approche de la souffrance du patient, notamment par l’influence possible sur l’approche thérapeutique choisie. On constatera ainsi que la souffrance d’un soignant contribue par moment à mettre en place des mesures visant davantage à l’apaiser lui-même au détriment de son patient. En dernier lieu, j'élaborerai sur la façon dont la rencontre entre un soignant et un patient peut devenir un espace privilégié afin d'aborder la souffrance. J'émettrai certaines suggestions afin d'améliorer les soins de fin de vie par un accompagnement parvenant à mettre la technologie médicale au service de la compassion tout en maintenant la singularité de l'expérience du patient. Pour le soignant, ceci nécessitera une amélioration de sa formation, une prise de conscience de ses propres souffrances et une compréhension de ses limites à soulager l'Autre.

Undertaking Sensitive Interviews: a Researcher’s Experience of Interviewing Bereaved Parents and Family GPs

The presentation describes the researcher’s experience of undertaking sensitive interviews. Background The interviews form part of a current study that is examining bereaved parents’ experience of caring for their child at home as well as the experience of their GP. This study builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer deaths makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived as the gatekeeper for care within the community. Presentation aim To describe the process of both the preparation for, and undertaking of, sensitive interviews. Study methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM). QM will be used to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40-60 GPs will be involved in the QM. Findings The preparation for these interviews will be discussed and compared to the supportive bereavement visits undertaken within the researcher’s role as a paediatric Macmillan nurse. The experience of undertaking the interviews will be exemplified with findings from the initial and the current, study. Papers’ contribution The researcher’s experience of preparing for and undertaking sensitive interviews may prove beneficial to other researchers.

Myths and Realities of Inter-professional Working

Introduction: Childhood cancers are rare and community based health care professionals have limited experience in caring for these children and often even less experience in providing their palliative care. It is well recognised that the provision of palliative care falls beyond the remit of any one profession, thus inter professional working is the standard model. This qualitative study aims to examine the experiences of the range of health care professionals involved in providing palliative care at home for children with cancer, focusing on how knowledge is exchanged; the level of communication and support both interprofessionally and at the community/specialist interface. It also aims to examine interprofessional collaboration in palliative care; identifying healthcare professional's perceptions of problems involved, interprofessional boundaries, specific areas of the organisation or provision of care that could be enhanced through changes in practice, support issues and the educational needs of health professionals. Methods The study involves three types of data collection; in-depth interviews, facilitated case discussion (FCD) and field notes from up to 20 cases (a "case" refers to the provision of palliative care to one child). Cases are selected from children who were treated at one regional childhood caner centre. For each case the community based health care professionals (for example the GP, community nurse or health visitor) involved in the care of the child at home are invited to participate in a one-to-one tape recorded in-depth interview followed by a group discussion in the form of a FCD. Field notes are completed following each interview. Data analysis follows a grounded theory approach. The term "social worlds theory" (SWT) his used to define a type of social organisation with no fixed or formal boundaries (such as membership boundaries), for example the range of health professionals that work together to provide palliative care. The boundaries of SW's are determined by the interaction and communication between recognised organisations, such as community nursing teams and general practitioners. SWT examines encounters between different professional groups and can be used to extend knowledge in both the organisation (for example general practice) and the content of what is being provisioned (for example, palliative care). The use of SWT in the analysis of the data is through examining the ethos of the different professions and the associated individual approaches to palliative care, exploring how this determines their roles in the provision of palliative care. Results 10 cases have so far been completed: 47 1:1 interviews (with a range of between 2-7 health care professionals being involved in each case): ( 9 x GP, 19 x CCN, 4 x DN, 3 x HV, 1 x HV assistant 7 x paediatric palliative care nurses, 1 x home support worker, 1 x OT, 1 x physiotherapist, 1 x community paediatrician) and 5 x FCD. The range of participants in the FCDs reflected that of the individual interview sampler. Data obtained to date gives clear insight into the personal experience of the individual health care professional in providing palliative care. Two themes emerging from the data will be focused upon: the continuity of care provision throughout treatment and palliation and the emotional burden experiences by the health care professional. Conclusions SWT can provide a useful framework in examining the social worlds of a disparate group of health care professionals working together for the first and maybe, the only time. A wide variation in the continuity of care provision has been found not only between professions, but also within professions. The emotional burden is evident across the professions.

Undertaking Sensitive Interviews: Reflections on Interviewing Bereaved Parents

Paediatric palliative care is a rare experience for many GPs. Although they recognise that they have a role to play, and can be is value in providing palliative care, their ability to fulfil this role can be hindered by a lack of role clarity. A qualitative study set in the West Midlands, examined the role of the GP in children's oncology palliative care from the perspective of the GP who had cared for the child receiving palliative scare for cancer at home and the bereaved parent. One-to-one semi-sturcured interviews were undertaken with 18 GPs an 11 bereaved parent following the death. A ground theory data analysis was undertaken: identifying generated themes through chronological comparative data analysis. Reflecting on my experiences working with bereaved families both as a paediatric Macmillan nurse and a researcher, the challenges of undertaking sensitive research, in relation to the vulnerability of the particular group and the nature of questions being asked will be explored.

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.

Les métamorphoses du rapport politique à la mort (recherche de pivots structurant la réflexion en médecine palliative)

Notre recherche explore quelques moments forts des métamorphoses du rapport politique à la mortalité sous examen des thèmes de l’interdit, de la dignité, de l’autonomie et de l’altérité. Nous dégageons des ancrages propices à nourrir la pensée actuelle en médecine palliative. Ainsi, nous livrons une enquête philosophique, appréciant pour nous Occidentaux, les influences marquantes des pensées gréco-romaine, chrétienne et moderne. Ces bases, édifiant notre monde politique, ont suscité l’émergence de la médecine palliative. C’est pourquoi, nous tentons de caractériser et de comprendre les problématiques nouvelles, dans leurs aspects politique et éthique, envisagées à l’aune des formes contemporaines d’accompagnement des mourants. Notre effort tente de discerner les aspirations et les impasses. L’étude de la métamorphose des repères fait ressortir une dissociation accentuée au fil du temps. En effet, au fur et à mesure, notre entreprise d’interprétation du fondement de ces questions politiques dévoilait : une reconnaissance universelle de l’interdit d’homicide, mais accusant une perte du lien moral au profit d’une visée amorale ; un aval unanime du respect de la dignité, mais manifestant une confusion et une division ostensible entre conceptions intrinsèque et extrinsèque ; une affirmation péremptoire de l’autonomie, mais avec une distanciation marquée au regard de la façon d’envisager la part de l’autre ; une déclinaison de liens humains reconnus de tous, mais exacerbés dans une tension artificielle entre individualisme et altruisme. Au surplus, en constatant la distance et la dislocation entre le public et le privé, entre la réclamation de fraternité et la recherche d’amicalité signifiante, nous avons envisagé la communauté palliative comme un lieu de résistance à cette décomposition menaçante au sein de la communauté politique. À terme de l’analyse, nous avons fondé les concepts « d’allonomie » et de « suspension éthique ». Il s’agit de contributions originales destinées à donner à la philosophie toute sa dimension sapientielle au service de l’accompagnement palliatif.

Prosocial Behaviour in Palliative Nurses: Psychometric Evaluation of the Prosociality Scale

Aim: The aim of this study was to examine the psychometric properties of a prosociality scale within the palliative nursing context, and then examine the impact of prosocial behaviour in relation to job and educational satisfaction among palliative nurses. Methods: An online cross-sectional survey was conducted in 25 Italian palliative care centres, with a total of 107 nurses completing the prosociality scale by Caprara et al (2005). Exploratory and confirmatory factor analyses were examined to evaluate a multidimensional model of prosociality. Results: A three-factor solution with a second order factor fitted the data well. The three dimensions extracted were labelled as helping, empathy, and sharing. Participants reported high levels of prosociality. In addition, prosociality was positively associated with job and educational satisfaction. Conclusions: The prosociality scale was valid and reliable when tested with palliative nurses. Although prosociality may be embedded in nurses’ personalities, this quality should be actively promoted to expand and improve the culture and the ethics of nursing.

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.