Development of a research-based classification of approaches to paediatric palliative medicine service provision within children's and young adults' hospices: A mixed methods study.

BACKGROUND: Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world. However, service provision varies widely leading to inequities both within countries and internationally. AIM: To describe and classify existing approaches to paediatric palliative medicine in children's and young adults' hospices across the UK. DESIGN: A mixed methods study conducted by telephone interview. SETTING/PARTICIPANTS: Thirty-one leaders of children's hospice care, representing 28 services, 66% of UK children's and young adults' hospice organisations. RESULTS: A geographic-specialist classification was developed through integration of findings, enabling hospices to be classified as Regional specialist, Regional non-specialist, Local specialist and Local non-specialist. Both qualitative and quantitative data demonstrated diversity and inequity in paediatric palliative medicine provision. Of 159 doctors (63.5% of whom were general practitioners) working in participating hospices only 27.5% had specialist training in paediatric palliative medicine. The majority of participating hospices (67.9%) did not have involvement from a paediatric palliative medicine consultant. CONCLUSIONS: Internationally, the integration of specialist children's palliative care teams with existing services is a current challenge. Despite differing approaches to children's palliative care world-wide, models of care which facilitate integration of specialist children's palliative care could benefit a range of countries and contexts. The geographic-specialist classification could be used to inform recommendations for a networked approach to paediatric palliative medicine within children's and young adults' hospices to promote equity for children with life-limiting and life-threatening conditions.

"His tummy's only tiny" - Scientific feeding advice versus women's knowledge. Women's experiences of feeding their late preterm babies.

OBJECTIVE: This paper reports on one element of a study exploring the experiences of women who are caring for late preterm baby/babies (LPBs) and focuses on their experiences of breastfeeding. DESIGN: As this study aimed to privilege women's experiences, a feminist approach was utilised, with individual qualitative interviews in two phases conducted with a purposefully selected sample of women who were caring for a late preterm baby or babies. Template Analysis linked to Birth Territory Theory (BTT) was used to identify key issues and experiences of women. SETTING AND PARTICIPANTS: Women (N = 24 to N = 14) were recruited from an NHS Trust Hospital in the South West region of England. FINDINGS: Infant feeding was planned with alarm clock precision. Babies, whether breast or formula fed, were subject to strict feeding guidelines/supplementation/volumes dictated by doctors and enforced by nurses and midwives and greatly impacted on women's experiences of caring. Women were powerless at times to influence feeding and regimes did not facilitate instinctive mother-care or enable babies to demonstrate innate feeding behaviours (such as rooting and early feeding cues). KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The current approach to caring for women and their late PTBs tends to result in feeding becoming a source of stress and anxiety for women, rather than a positive experience. To resolve this, staff caring for women who have LPBs should focus on supporting women to trust their instincts, and to guide them in developing confidence in their ability to read their babies' cues, rather than in focusing on strict regimes of feeding. This should include individualised consideration of whether supplementation is required in the early days.

Vulnerability and risk in children living with a physical disability.

Children are identified as a vulnerable group in need of a degree of safeguarding. About 6% of children in the UK have a disability, which can increase their level of vulnerability. How disability is perceived by others may affect the way they work with these young people in coping with life's risks, which may be increased due to the disability. Each individual's perception of the risks and benefits of a given venture varies. Children's nurses work with these young people and their families, aiming to give them maximum autonomy, self-reliance, empowerment and independence in adulthood. This involves risk-taking, as every young person needs to learn from graduated exposure to new experiences, environments, associations and hazards; the chance of harm must be balanced with the disadvantages of over-protection.

Family-focused children's end of life care in hospital and at home.

An increasing number of children and young people require end of life care, and providing them and their families with optimum support at this time is crucial. This article describes how nurses working with children and families in home, hospital and community settings used the principles of practice development methodology to develop end of life care provision and follow-up bereavement support. It outlines the 'ways of knowing' that informed developments and how parents' priorities were kept central to the process. Finally, it discusses how the approach taken to practice development reflected the value of compassion in nursing practice.

How people with diabetes integrate self-monitoring of blood glucose into their self-management strategies.

BACKGROUND: The benefit of self-monitoring of blood glucose by patients has been questioned, and UK policy is generally not to support this, although it is identified that there may be unidentified subgroups of people who would benefit from being supported to self-monitor. The purpose of this paper is to explore the self-management approaches of people with diabetes, and how self-testing of blood glucose contributes to self-management strategies. METHODS: This qualitative study of patients' experiences drew data from contributors to online discussion boards for people living with diabetes. The principles of qualitative content analysis were used on posts from a sample of four Internet discussion boards. RESULTS: Contributors described how they were using self-testing within their self-management strategies. Most saw it as a way of actively maintaining control of their condition. The amount of testing carried varied over time; more testing was done in the early days, when people were still learning how to stay in control of their diabetes. Some people had experienced a lack of support for self-testing from healthcare professionals, or had been expected to change their self-management to fit national policy changes. This was seen as unhelpful, demotivating, stressful, and harmful to the doctor-patient relationship. CONCLUSIONS: The Internet is a valuable source of information about peoples' self-management behaviours. Patients who are using, or who wish to use, self-testing as part of their self-management strategy are one of the subgroups for whom self-testing is beneficial and who should be supported to do so.

Using the Internet as a source of information and support: a discussion paper on the risks and benefits for children and young people with long-term conditions.

Children and young people who have long-term conditions are likely to seek health-related information via the Internet. Because of their continuing contact with children with such conditions, primary care practitioners may be well placed to discuss with them and their families the risks and benefits of accessing information online. This includes not only the relative merits of particular sites but also more general online safety issues. To achieve this, it may be helpful for primary care practitioners to consider how they view risk in general, the risks associated with the Internet and the vulnerabilities of children and young people, particularly those with long-term conditions.

The experiences of older people who live with a long-term condition.

AIM: The aim of this study was to gain insight into the experiences of people aged 65 and older who have learned to live with a pre-existing long-term condition. METHOD: A qualitative approach and the principles of narrative research were used to learn as much as possible about the individuals' stories. A focus group of five men was interviewed and two women were interviewed as a pair. FINDINGS: Existing skills in condition management and interactions with professionals are transferable to new health needs that older people develop, but additional, age-related problems can affect management of long-term conditions. Progressive long-term conditions may become more difficult to manage with age, and it is difficult to distinguish between ageing processes and deterioration of pre-existing long-term conditions. Age-related social and financial changes and society's perception of older people may also present challenges to condition management. CONCLUSION: Nurses who care for older people should take into account the effects of the person's long-term condition and the ageing process when assessing their needs; understand that people may be reluctant to ask for practical assistance; explore existing support mechanisms that people have in place and their sustainability; and advocate with people to secure appropriate choices related to their health needs.

Planning successful change incorporating processes and people.

Implementing change is a core element of developing healthcare practice. While planning the practical aspects of change is vital, so too is considering how people will perceive and be affected by an innovation, including what individuals and teams will gain or lose, who the opinion leaders will be and the influence of workplace culture. The aim of this article is to highlight some of the considerations that may be useful in planning successful change.

The conceptual and practical ethical dilemmas of using health discussion board posts as research data.

BACKGROUND: Increasing numbers of people living with a long-term health condition are putting personal health information online, including on discussion boards. Many discussion boards contain material of potential use to researchers; however, it is unclear how this information can and should be used by researchers. To date there has been no evaluation of the views of those individuals sharing health information online regarding the use of their shared information for research purposes. OBJECTIVE: To explore the views of contributors to online diabetes discussion boards with regards to if (and how) they feel their contributions to boards should be used by health researchers. METHODS: A qualitative approach was employed using online semistructured asynchronous (email) interviews. Interpretative description methodology was used to assess the interview transcripts, and quotations were extracted and anonymized to support each theme. RESULTS: 26 interviews were carried out. Participants agreed that forum posts are in the public domain and that aggregated information could be freely used by researchers. This was agreed to be a good way of ensuring that the view of people living with diabetes is being heard in research. There was no consensus on the need for permission to use individual information, such as quotations, with some people happy for this to be freely used and others feeling that permission is necessary. CONCLUSIONS: Participants acknowledged the dichotomy of having placed information into the public domain in an unrestricted way, with some interviewees also wanting to retain control of its use. The Internet is a new research location, and rather than trying to apply traditional ethical norms to this new genre, a new modus operandi is required. The authors propose introducing new norms for presenting research carried out with online discussion boards.

A nurse's role in promoting social capital in children and young people.

Enabling children's wellbeing by supporting their social networks is an important role of children's nurses. This article presents the concept of social capital as a cognitive tool to help nurses reflect on why and how supporting these networks is important. Through three case studies the authors introduce the attributes of social capital and how these may be applied and inform practice in hospital and community healthcare settings.

Reflecting on nurses' views on using research in practice.

This paper follows a previous paper (Hewitt-Taylor et al, 2012) in which the authors summarised their reflections on the literature relating to the application of research in practice. This paper builds on these reflections and reports on the findings from one aspect of a study that explored nurses' views on using research in practice. Quantitative methods of data collection and analysis were used and data were gathered using questionnaires. The findings suggest that nurses generally value research, but this does not necessarily mean that they base individual decisions on particular research findings, or that research is considered the most important form of evidence in direct practice. In addition, the resources that enable nurses to find, appraise and make decisions about using research, are not always readily available in practice settings. From this part of the study, it can be concluded that for research utilisation to increase, time, resources, role models and environments that support this ethos are needed, and that an emphasis on research should not eclipse other key forms of nursing knowledge such as patient views and experiences, and professional expertise in the promotion of evidence-based practice.

What e-patients want from the doctor-patient relationship: content analysis of posts on discussion boards.

BACKGROUND: People with long-term conditions are encouraged to take control and ownership of managing their condition. Interactions between health care staff and patients become partnerships with sharing of expertise. This has changed the doctor-patient relationship and the division of roles and responsibilities that traditionally existed, but what each party expects from the other may not always be clear. Information that people with long-term conditions share on Internet discussion boards can provide useful insights into their expectations of health care staff. This paper reports on a small study about the expectations that people with a long-term condition (diabetes) have of their doctors using information gleaned from Internet discussion boards. OBJECTIVE: The aim of this study was to ascertain what people with diabetes who use Internet discussion forums want from their doctors. The study objectives were to identify what people with diabetes (1) consider their role in condition management, (2) consider their doctor's role in managing their condition, (3) see as positive elements of their interactions with medical staff, and (4) find problematic in their interactions with medical staff. METHODS: The study used qualitative methodology to explore the experiences, views, and perceptions of individuals participating on 4 Internet message boards. Posts made on the discussion boards were analyzed using the principles of qualitative content analysis. The meanings of sections of data were noted using codes that were developed inductively; those with similar codes were merged into subcategories and related subcategories were combined to form categories. RESULTS: The key themes identified in the study were ownership of condition management, power issues between people with long-term conditions and doctors, and ways in which people seek to manage their doctors. CONCLUSIONS: People with diabetes valued doctors who showed respect for them and their knowledge, and were willing to listen and openly discuss their options. Patients felt that they could and should take responsibility for and control of their day-to-day disease management. They saw doctors as having a role in this process, but when this was lacking, many people felt able to use alternative means to achieve their goal, although the doctor's function in terms of gatekeeping resources could create difficulties for them in this respect.

Identifying, analysing and solving problems in practice.

When a problem is identified in practice, it is important to clarify exactly what it is and establish the cause before seeking a solution. This solution-seeking process should include input from those directly involved in the problematic situation, to enable individuals to contribute their perspective, appreciate why any change in practice is necessary and what will be achieved by the change. This article describes some approaches to identifying and analysing problems in practice so that effective solutions can be devised. It includes a case study and examples of how the Five Whys analysis, fishbone diagram, problem tree analysis, and Seven-S Model can be used to analyse a problem.

Applying research to practice: exploring the barriers.

Nurses are not averse to applying research findings to their clinical practice; however, there appears to be a number of barriers to achieving this. Generally, barriers include lack of time and the need to provide more education surrounding the use of research. While these are both valid points, the authors suggest that perhaps the solution to the problem is looking at how research is 'sold' to practitioners. For example, the use of jargon in research is off-putting to many practitioners, which creates an impression that research is associated with academia, rather than a tool for practitioners. Also, there may be an unrealistic expectation of what 'using research' might mean. Research is seen as the pinnacle of evidence, and not a part of evidence-based practice. In this article, the authors propose that teaching and expectations of research should focus on the application of research to practice. Reviewing and critiquing of research should serve the purpose of helping to make decisions about its practical applications, rather than for academic use.

Protecting children or creating vulnerability?

Children are, rightly, viewed as vulnerable and in need of safeguarding. However, protecting children from harm should not eclipse their need to learn about managing risky situations and those in which they are vulnerable. How adults view risk and vulnerability will affect the way in which they enable children to learn through activities which carry a degree of risk. Community practitioners may be well placed to discuss with parents how the risk and benefit of various activities can be considered, and children enabled to learn and develop resilience through acceptable risk taking activities. This paper discusses the challenges which community practitioners may encounter when working with parents on enabling them to achieve a balance between risk and safety for their children. It presents some key concepts and perspectives which may assist them to facilitate discussions with children and families.

The nurse's role in supporting young people with complex health needs.

An increasing number of young people have complex and continuing health needs. Their needs, the attitudes which individuals have towards them, and the way in which their needs are catered for by society can mean that it is more difficult for them to develop peer relationships, engage in leisure activities, take risks and develop sexual relationships than it is for other young people. Accessing further education and gaining employment may also be more problematic for them than it is for their peers. This may make it harder for them to develop independence and a positive self-esteem. Nurses who work with this group should be aware of the barriers which they may face, and plan support with them and their families so as to overcome these as far as possible, and to make them feel valued and respected.

Parents' views of their children who have complex health needs.

AIM: This study explored parents' perceptions of their children who have complex health needs and their experience of communication, play, socialising and learning. METHOD: Fourteen parents participated in this qualitative study. Semi-structured interviews were used to elicit their perceptions of the children's opportunities and experiences. FINDINGS: Parents often felt that their child's efforts to communicate were not valued. Play and socialising could be more challenging for their children than they were for their peers, partly because of their physical needs, but also because of the priority which others placed on these activities and society's provision for children with complex health needs. Parents reported a mixed experience of inclusion in education settings. RECOMMENDATIONS: Those who support children who have complex health needs should consider how their communication, play, socialising and education can best be supported and encouraged. Further research to ascertain children's views would be useful.

How personal health budgets may affect community nursing teams.

In social care, there has for some time been the option for individuals to use direct payments to manage their own support, and more recently individual budgets have been piloted. While this approach has not been available for healthcare payments, there is the potential for this to change. This paper outlines the implementation of direct payments and personal budgets and then discusses some of the issues which should be considered if such arrangements are introduced in healthcare. These include: preparing existing staff for such changes in funding and the implications for them; clarifying the new roles and responsibilities of community nursing teams, training opportunities for staff who are employed directly by individuals; staff recruitment and retention, and designing evaluation mechanisms which assess quality as well as cost.

Pilot student placements with children with complex needs.

Enabling the increasing population of children with complex and continuing health needs to live at home with their families is generally considered the ideal approach. Services for children with complex needs are commissioned from a wide range of providers, including the private and voluntary sectors. Pilot placements for two student nurses with a private company that had a significant caseload of children with complex and continuing needs were evaluated as a way of enabling student nurses to develop knowledge and skills in this field. The objective was to increase understanding of the issues involved in facilitating this type of placement and to develop placements in line with the findings. Semi structured interviews with students and mentors were used to generate evaluative data. The placement was well evaluated by all parties. Students gained important clinical skills but also appreciated in greater depth the humanistic needs of children, young people and their families. Advantages of working with a company whose focus is the provision of complex care at home included variety and continuity in the placement and a greater number of families across whom the students can be spread to avoid excessive or constant intrusion. Such placements can offer valuable learning opportunities, however, ongoing development and evaluation of placements is needed, particularly as these are predominantly based in family homes.

Patient empowerment: does it still occur in the ICU?

The theoretical underpinnings of patient empowerment were developed through the work of educators and community psychologists, working primarily with the socially disadvantaged. Empowerment is seen as a philosophy based upon the belief of the inherent worth and creative potential of each individual. Therefore, the aim of this paper is to explore whether this creative potential associated with patient choice that encapsulates empowerment is applicable to the Intensive Care Unit.