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Cachexia and it’s impact on people with renal disease:

15 Dec, 14 | by hnoble

Dr Joanne Reid and Dr Helen Noble, Lecturers, from Queens University Belfast, will be hosting this week’s ENB twitter chat on Wednesday the 17th of December between 8-9pm focusing on ‘cachexia in renal disease’ Participating in the twitter chat requires a Twitter account; if you do not already have one you can create an account at Once you have an account contributing is straightforward – follow the discussion by searching links to #ebnjc @EBNursingBMJ, or better still, create a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

Cachexia is diagnosed when a person loses weight, suffers muscle atrophy, fatigue, weakness, and significant loss of appetite. It is defined as loss of body mass that cannot be reversed nutritionally. This loss in lean body mass indicates a primary pathology is in place. Cachexia occurs in many chronic conditions such as cancer, acquired immune deficiency syndrome, chronic obstructive pulmonary disease, chronic heart failure, rheumatoid arthritis and chronic kidney disease (CKD). Chronic kidney disease denotes abnormal kidney function and/or structure. The definition of CKD is based on the presence of kidney damage or decreased kidney function indicated by a glomerular filtration rate <60 ml/minute per 1·73 m² for three months or more, irrespective of clinical diagnosis.

In patients with chronic kidney disease (CKD) managed with or without dialysis, the prevalence of cachexia has been reported to range from 30-60%. The pathophysiology of cachexia in CKD is known to be multifactorial. Previous research has established that while reduced food intake may contribute to cachexia, additional factors such as dysregulated appetite controlling hormones, inflammation, abnormal neuropeptide signaling, insulin resistance, and metabolic acidosis may also be associated with its pathogenesis in CKD. Most notably, cachexia is manifested by weight loss and specifically loss of lean muscle mass. It is this amplified loss of lean muscle mass that distinguishes cachexia from weight loss due solely to reduced food intake. Starvation and cachexia represent two distinct types of malnutrition that may be present in people who have advanced CKD. These discrete nutritional deficits have very different pathophysiologies. Central to this distinction, is that starvation is typically not associated with inflammation or reduced serum albumin levels, whereas cachexia is characterized by systemic inflammation and low serum albumin concentrations. Adequate dialysis and intensive dietary support often reverse deteriorating nutritional parameters in persons with CKD who have starvation. It is much more challenging to improve the nutritional status and body composition in people who have renal cachexia. This is because cachexia results not only from a combination of reduced nutritional intake (similar to starvation) but also profound metabolic alterations.

A number of potential treatment modalities for cachexia in advanced CKD have been examined including exercise, nutritional supplements, appetite stimulants, growth hormones, and ghrelin agonists. However, research has not determined the most effective means of anti-cachectic therapy. No research to date has examined the subjective experiences of individuals who have advanced CKD and cachexia and there are no data to delineate the patients’ experience of this phenomenon and that of those caring for them (See Reid et al ).The current emphasis is largely placed on the anatomical, physiological and pathological issues central to cachexia in advanced CKD. Qualitative research methods can provide a more holistic exploration of the complexities of renal cachexia associated with CKD and interpretation of the data can help to shape future care delivery to address unmet psychosocial needs in this client group. The twitter blog on Wednesday evening aims to discuss cachexia in a renal population and how we can commence research looking at the impact of this syndrome on patients their lay and professional carers with a view to understanding this state of ill health.

Advance Care Planning: Where Does it Begin? Roberta Heale @robertaheale

8 Dec, 14 | by rheale

Last week’s EBN Twitter chat “End of Life Care; One Chance to Get it Right” highlighted the important issue of the care of those who are dying.  As nurses, we are all encouraged to individualize care and to ‘start the conversation’ with patients about their wishes, but where does this start?  What does it entail?   I think we would all agree that the best time to initiate discussions early…hopefully before palliation, hospitalization, or a catastrophic event that prevents a person from extending how they would like to die.  In fact, I suggest that the conversation should start with people that the patient knows, and who know the patient well; in primary health care.

The discussion about advance care planning is a process of reflection and communication.  Patients and families may reflect on their values and wishes, and let others know their future health and personal care preferences in the event that they become unable to consent or refuse treatment (CHPCA, 2014).  Advance care planning is ongoing and may include the patient, his/her family and substitute decision-maker as well as healthcare providers.  Advance care planning may be informal, or formal.  It may include development of an end-of-life plan of care with appropriate legal documentation.  Although there are parts of Advance Care Planning that nurses may not be comfortable or competent to enact, entering into a discussion with a patient about their wishes is a vital first step (Sudore & Fried, 2010).

Most people in the developed world die as a result of chronic diseases.  These conditions are often diagnosed and monitored in primary healthcare settings well before end of life. Health care staff, including nurses and NPs working in primary health care, get to know their patients well. Because of this, they are in a unique position to initiate advance care planning discussions with them before they enter into the palliative stages.   In fact, patients and their families are often waiting for health care providers to initiate Advance Care Planning discussions (Davison & Simpson, 2006; Jackson et al., 2012).

In clinic several months ago, I sent a patient for testing and he was diagnosed with a cancerous tumor.  He has received treatment from the Cancer Treatment Centre in our city, but continues to come to the primary health care clinic for renewal of routine medications. He’s brought his wife to his recent appointments.  I took the time at the last appointment to ask him if he had thought about end of life care…being sure to add that I wasn’t expecting this imminently! He and his wife relieved to discuss their plans and he told me that he was grateful that I brought it up since he now felt more comfortable approaching the clinic for assistance in making his death a good one, when the time came.  With my assistance, the patient and his wife were connected to a social worker who helped them to complete legal documents, such as  ‘power of attorney’ and a ‘living will’.

By initiating advance care planning discussion with patients, the nurse may help to increase the patient’s satisfaction and reduce stress, anxiety, and depression. Substitute decision makers also have reduced stress, particularly in knowing their loved one’s wishes (Detering, Hancock, Reade, & Silvester, 2010).

Nurses play an important role in the care of patients who are dying, at every stage.  We shouldn’t be hesitant to ensure our patients have had the opportunity to express their wishes and to help them formalize them in preparation for the life journey ahead.

Canadian Hospice Palliative Care Association (2014).  Speak Up. Advance Care Planning Retrieved from:

Davison, S. N., & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. British Medical Journal, 333, 886-889.

Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. British Medical Journal, 340(1345), 1-9.

Jackson, J., White, P., Fiorini, J., Shay, J. T., Derderian, L., Ayotte, J., & Osgood Hall, R. (2012). Family perspectives on end-of-life care. Journal of Hospice & Palliative Nursing, 14(4), 303-311.

Sudore, R. L., & Fried, T. R. (2010). Redefining the “planning” in advance care planning: Preparing for end-of-life decision making. Annals of Internal Medicine, 153(4), 256-262.







End of life care – one chance to get it right?

1 Dec, 14 | by josmith

David Garbutt, Lecturer in End of Life Care, from the University of Salford, will be hosting this week’s ENB twitter chat on Wednesday the 3rd of December between 8-9pm focusing on ‘end of life care’ Participating in the twitter chat requires a Twitter account; if you do not already have one you can create an account at Once you have an account contributing is straightforward – follow the discussion by searching links to #ebnjc @EBNursingBMJ, or better still, create a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

‘We’re at a turning point. End of life care is on the agenda. We have a chance, as never before, to get it right’. Tony Bonser, Chair of People in Partnership Group, NCPC and Dying Matters

The past 12 months have been a watershed for end of life care in the UK. Last year was the half-way point in the 10 year end of life care strategy. The Neuberger review into the Liverpool Care Pathway highlighted the variable practice in care for dying patients and families across the country. The subsequent One Chance to Get it Right document outlined the need to individualise care, to focus on the person and not the paperwork and put people and their families at the centre of decisions about their treatment and care. The Government in the Mandate to NHS England for 2014-15 has identified end of life care as a priority area ‘where the Govenment is expecting particular progress to be made’. However with the demise of the Liverpool Care Pathway, the challenges of addressing a sense of mistrust from certain areas of the popular press, and the developing discussions around physician assisted suicide for the terminally ill patient, new ways of delivering effective evidence based care to dying patients and their families must be developed. End of life care should be individualised yet consistent and underpinned by evidence is a fundamental right, so how can such care be commissioned, delivered, measured and improved for all dying patients? What challenges does the future hold? Is this an exciting and opportunistic time to refresh the end of life care agenda or will hard won momentum be lost in wake of restructuring and reordering?

Questions for consideration:

Despite 70% of the public stating they are comfortable talking about death, most have not discussed their end of life wishes or put plans in place. How can we make conversation about planning for our death normal?

What personal and professional development do nurses and other health and social care professionals require in order to deliver effective end of life care?

How can we meet the needs of all dying patients and their families, irrespective of their age, gender, geographical location and setting, disability, diagnosis, or long-term condition/s, sexual orientation, socio-economic status, or ethnicity?

Do we Promote Children’s Rights in relation to Consenting to and Refusing Treatment?

23 Nov, 14 | by atwycross

I am undertaking a module on the sociology of childhood at the Institute of Education. One of the things we have discussed is the United Nations Convention on the Rights of the Child (UNCRC) (United Nations 1989) which is 25 years old this month. As last week’s Twitter Chat and Blog focused on children’s rights I thought I would continue this theme and reflect on children’s rights in relation to consenting or refusing medical treatment. In England, Wales and Northern Ireland children under the age of 16 years can legally give their consent to their own medical treatment if they satisfy the criteria of Gillick competence that is “if they have sufficient understanding and intelligence to enable him or her to understand fully what is proposed” (Gillick 1986).

The reality of clinical practice

However, the reality in clinical practice is very different. Adolescents appear able to consent to treatment but not refuse it. For example, in the case of Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 CA the Court of Appeal made it clear that a Gillick competent adolescent had the ability to consent to treatment but that if they should refuse the treatment, consent can be given by someone else with parental responsibility over the child or the court. No child has been deemed Gillick competent when it comes to refusing life-saving treatment in the UK (Gorgy 2012). This is in part because the level of competency children are expected to demonstrate is unattainable (even for adults) (Jackson 2009, James & James 2004). On a day-to-day basis, in clinical practice, anecdotal evidence suggests children are considered competent if they agree with the health care professionals’ views and incompetent if their view differs. Indeed the law allows for a child’s refusal to have medical treatment to be challenged if it is deemed life threatening even if the child is considered competent (Cave 2011). Clearly children are not always considered competent to make decisions on their own behalf. This perhaps links back to a perception of children as becomings rather than beings and as such lacking rationality and needing protection (Lee 2001, Tisdall & Punch 2012). This is despite a plethora of evidence suggesting children are competent to make their own health care decisions (Alderson 1993, James & James 2004).

Can agency explain why children are not seen as competent to make health related decisions?

Agency may help explain, at least in part, some of the issues relating to children consenting to and/or refusing to treatment. Agency relates to the individual competence of children (James 2011). It has been argued that children by the very nature of their immaturity do not (yet) have the ability to make appropriate choices and that these skills are only acquired by learning, effort and practice (Purdy 1992). A recent study added to this conjecture concluding that the neuro-anatomical development of the brain and emotional and experiential capacity is not fully developed until the early-20s for girls and the mid-20s for boys (Mendelson & Haywood 2014). While others argue that even young children and neonates have agency (Alderson et al. 2005). From the examples provided above it would appear that within health care children’s do not always have agency. A perception that children lack agency may be why their views are often over-ruled or not taken into account when decisions about their health care are being made.

What does this mean for health care professionals?

I think in the month the UNCRC turns 25 years old health care professionals should reflect on whether we need to change our practices and perhaps start to challenge the interpretation of the law. It appears ridiculous that children are seen competent to consent to treatment but not to refuse it. Surely if they are able to do one they should be able to do the other? Does something magical happen when a child becomes 16 years old and suddenly they are deemed competent to refuse treatment? Are we more worried about the implications for us if a child dies who we have allowed to refuse treatment? Does it come back to the over medicalisation of death and the apparent need to carry on treating children who are clearly terminally ill? Let me know what you think.

Alison Twycross

Head of Department for Children’s Nursing and
Reader in Children’s Pain Management
London South Bank University


Alderson P (1993) Children’s consent to surgery. Open University Press, Buckingham.

Alderson P, Hawthorne J & Killen M (2005): Are premature babies citiziens with rights? Provision rights and the edges of citizebship. Journal of Social Sciences 9, 71-81.

Cave E (2011) Young people who refuse life sustaining treatment: A briefing paper on current law and the need for refrom. School of Law, University of Leeds., Leeds.

Gillick (1986): Respondent v. West Norfolk and Wisbech Area Health Authority.

Gorgy M (2012): Article 8 and minors’ right to refuse medical treatment. The Student Journal of Law.

Jackson E (2009) Medical Law Text, Cases and Materials, 2nd edn. Oxford University Press, Oxford.

James A (2011) Agency. In The Palgrave Handbook of Childhood Studies (Qvortrup J, Corsaro, W.A., Honig, M-S., ed.). Palgrave Macmillan, Basingstoke, pp. 34-45.

James A & James AL (2004) Constructing Childhood: Theory, Policy and Social Practice, 3rd edn. Palgrave Macmillan, Basingstoke.

Lee N (2001) Childhood and Society. Open University Press, Buckingham.

Mendelson D & Haywood J (2014): Minor’s decision-making capacity to refuse life-saving and life-sustaining treatment: Legal and psyhciatric perspectives. Joirnal of Law and Medicine 21, 762-773.

Purdy L (1992) In their best interest? The case against equal rights for children. Cornell University Press, New York.

Tisdall EKM & Punch S (2012): Not so “new”? Looking critically at childhood studies. Children’s Geographies 10, 249-264.

United Nations (1989): Convention on the Rights of the Child. United Nations, New York.


Promoting the rights of the child in nursing and healthcare

17 Nov, 14 | by josmith

Nova Corcoran, will be hosting this week’s ENB twitter chat on Wednesday the 19th of November between 8-9pm focusing on ‘the rights of the child in nursing and healthcare’   Participating in the twitter chat requires a Twitter account; if you do not already have one you can create an account at Once you have an account contributing is straightforward – follow the discussion by searching links to #ebnjc @EBNursingBMJ, or better still, create a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

The 20th November is ‘Universal Children’s Day’, marking the day that the United Nations adopted the Declaration on the Rights of the Child (1959) and the Convention on the rights of the Child (1989). It is fitting to theme this blog and the Twitter discussion around the rights of the child and what this means for nursing and healthcare practice.

The convention on the rights of the child contains 54 articles that are wide ranging in coverage. Many are of interest to nurses and healthcare practitioners; for example children have the right to: survive and develop healthy (article 6), have a say in what happens to them and have their opinions taken into account (article 12) get and share information (article 13) be protected from all forms of violence (article 19), access to education (article 28 & 29) access to social security (article 31), an adequate standard of living (article 32) and to relax and play (article 31) (UNICEF 1989).

One of the strongest features of the child rights declaration is recognition that the rights of the child hinges on multiple organizations, multiple policies and multiple determinants. In order to properly promote child rights we have to involve all the settings where children live, learn and play and the people within those settings; teachers, healthcare and medical professionals, sport and leisure group leaders. Everyone has a responsibility to know what the rights of the child are, and to include or consider these rights within their practice. In the UK the education sector has taken the lead in this and many schools have become rights respecting schools (UNICEF 2014).

Of course, the strongest feature of the declaration could also be the weakest. Aside from people involved with children not knowing about child rights, practitioners may also decide that child rights are not part of their job, that someone else will be considering child rights, or simply that they (as the professional or adult) know best. Child rights can also be complex; those working in areas such as child protection or safeguarding will be well aware of the complexities of child rights and how to make decisions for the best.

So how do we support the rights of the child in nursing and healthcare practice? This is not just about those people working in child related roles such as school nurses. If we are truly supporting child rights we should all start with our own practice. As the child rights declaration takes a holistic view of child rights, this also means we need to take a holistic definition of health and include the physical, mental, social and spiritual health and well-being of the child. If we want to promote the rights of the child we need to be able to assist children to make choices in their life that are healthy and to speak out about things that are impacting on their health. We should be advocates for policies and practices that can protect children and their health.

So how do we do this in our own practice? Well, there is no overall plan for how we might interpret and respond to the declaration. However there are numerous ways we can promote, advocate, protect and improve the health of the child that will have an impact on child rights. From a wider environment approach we might advocate for smoke free playgrounds, free school meals or child road safety initiatives. From an individual perspective we might consider communication around medical procedures, health education campaigns, or provision of health information in child friendly formats. What do you think you could do? Join the twitter chat on Wednesday and share how you could (or have) advocate for the rights of the child in your practice.


UNICEF (1989) Executive summary on the rights of the child available at

UNICEF (2014) rights respecting schools available at

How valid and reliable are qualitative studies?

10 Nov, 14 | by hnoble

Qualitative work has been identified in some quarters as weak, without rigour, subjective and of little use. For an interesting discussion on this see In contrast, quantitative research, which aims to delineate phenomena into measurable categories, generalizable to other populations is often viewed as superior. In quantitative research standardised measures are often used in an attempt to collect varying perspectives and experiences of people. For example a list of behaviours may be rated by an observer using a predetermined scale as an instrument in the research to collect data. This is all well and good but once the tool has been used to collect the numbered answers how do we know the measuring instrument was able to measure what it was supposed to measure. Also if we are carrying out a randomised controlled trial of a drug therapy and the drug is not taken regularly by participants in the trial how do we determine why that was if managing an experiment using only quantitative methods? Sometimes we need to ask questions and analyse answers in words in order to understand human experience. As Eisner says a well-executed qualitative study can help us “understand a situation that would otherwise be enigmatic or confusing” (Eisner, 1991, p. 58). The enlightened eye: Qualitative inquiry and the enhancement of educational practice. New York, NY: Macmillan Publishing Company.

But back to the issue of validity and reliability – how do we ensure qualitative studies are of high calibre and we can trust the findings presented. How do we know they are trustworthy? Lincoln and Guba are two well-known and very experienced qualitative researchers who have guided the qualitative debate over many years. See Lincoln & Guba (1985) Naturalistic Inquiry, for further discussion

They discuss a variety of ways to enhance qualitative work and each should be easily identified in any good study:

Credibility – this is viewed as one of the most important constructs that assists in establishing trustworthiness of research. Credibility means we have confidence in the findings of the study and it can be established in a number of ways

  1. prolonged engagement in the setting with a range of people.
  2. Triangulation where multiple data sources are used to produce understanding. Previously triangulation has been viewed as a method for testing for validity.  This has become controversial as it assumes that it is always possible to make sense of different accounts but this is very difficult to do.
  3. Peer debriefing defined as:

“a process of exposing oneself to a disinterested peer in a manner paralleling an analytical session and for the purpose of exploring aspects of the inquiry that might otherwise remain only implicit within the inquirer’s mind” (Lincoln & Guba, 1985, p. 308)

Someone who helps debrief can assist the researcher to uncover taken for granted biases, or assumptions and deal with these.

  1. Member checking – when data and conclusions are tested with members of those groups from whom the data were originally obtained. Again this is controversial as it relies on the assumption of a fixed truth or reality that is presented by the researcher and confirmed by a respondent

Transferability – this means the findings have applicability in other contexts. Giving a ‘thick description’ of a phenomenon in sufficient detail allows readers to evaluate the extent to which the conclusions drawn are transferable to their settings and people.

Dependability – this is concerned with demonstrating that the findings are consistent and could be repeated. External audits can help with this where a researcher not involved in the research examines the processes and findings of the research study in order to evaluate accuracy and if the findings and conclusions are supported by the data.

Confirmability – this is the extent to which the findings of a study are shaped on what has been reported by participants and not researcher bias. Reflexivity is an important concept here and involves the researcher attending to how knowledge has been constructed and the effect of the research on the researcher and the researcher on the research.

In trying to identify valid and reliable qualitative research studies there are a number of tools which can be used and are recommended, particularly for the novice researcher – the websites below should help:!casp-tools-checklists/c18f8

There is a also a great utube video here:

The CASP tool is a good place to start. It includes 10 questions starting with ‘Was there a clear aim to the research’. Best of luck in finding the best qualitative research to inform your practice. Also look out for a short piece I will be writing in the New Year on validity and reliability for Evidence Based Nursing


Disabled children and child protection issues: A cause for concern?

2 Nov, 14 | by atwycross

This week’s Blog is written by Professor Julie Taylor and Dr Chris Jones from the University of Edinburgh/NSPCC Child Protection Research Centre.

We will be hosting this week’s ENB twitter chat on Wednesday the 5th of November between 8-9pm (GMT) focusing on recent research on disabled children and the child protection system. Participating in the twitter chat requires a Twitter account; if you do not already have one you can create an account at Once you have an account contributing is straightforward – follow the discussion by searching links to #ebnjc @EBNursingBMJ, or better still, create a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

There is a significant body of international research to show that disabled children are more likely to be abused than their non-disabled peers. Despite this heightened risk, there is evidence that the abuse of disabled children goes undetected and under-reported. Children with particular forms of impairment are more at risk than others. Although findings vary, a literature review (Stalker & McArthur 2010) found that those with communication impairments, behavioural disorders, learning disabilities and sensory impairments are likely to experience higher levels of violence and neglect. Not enough is known about the direction of causality, however, and the extent to which some of these impairments may have been caused by abuse.

Despite this heightened risk, there is evidence from a number of countries that the abuse of disabled children often goes undetected and, even when suspected, may be under-reported. This is given further credence by the low numbers of children on child protection registers recorded as having an impairment.

A range of factors has been cited to explain disabled children’s increased vulnerability to abuse. Children may be viewed by potential perpetrators as less aware and/or knowledgeable than a non-disabled child; communication impairments may make it hard to report abuse; mobility difficulties can make it difficult to remove themselves from the abuser; and personal care needs open up opportunities for abuse. Family related factors may centre on the stress of caring for a disabled child without adequate support (although it should be noted that the vast majority of parents provide loving and safe homes for their disabled children), as well as ambivalence about having a disabled child and disciplinary approaches. Increased risk may arise in services if staff are not aware of disabled children’s heightened vulnerability or may even think that no-one would abuse a disabled child. Maltreatment may also be administered under the guise of treatment, such as medication or electro-convulsive therapy and in some countries, disabled girls may be forcibly sterilised (UNICEF 2013). Staff within residential settings (where disabled children are disproportionately represented), may not know how to communicate effectively with children who have communication impairments, and signs of distress and abuse may go undetected, or be attributed to the impairment.

Our study for the Scottish Government earlier this year confirmed that disabled children were often marginalised or made invisible. Thresholds were higher than for other children, as professionals often ‘felt sorry’ for parents. Our ongoing study for the NSPCC is talking to disabled children about their experiences of the child protection system.

Questions for consideration:

  • Are health professionals aware of the particular vulnerabilities of deaf and disabled children?
  • Do we sometimes sympathise with parents and carers to the extent that we may have lower expectations about the care parameters?
  • What are the signs and symptoms of abuse that disabled children and young people may display?
  • What particular forms of impairment are likely to put children most at risk of abuse?
  • What are the protective factors against abuse for deaf and disabled children and young people?
  • Have you ever thought ‘no-one would hurt a disabled child’?

Sources of information

Literature review (Stalker)

Research report

The Child Protection and Disability Tool Kit

Protecting Disabled Children from Abuse


Professor Julie Taylor and Dr Christine Jones, Child protection Research Centre, University of Edinburgh. @ChildProtectRes

Join in the twitter chat #ebnjc @EBNursingBMJ

Ebola: Will Nurses Have a Choice?

26 Oct, 14 | by rheale

In August, Jo Smith, another Associate Editor of EBN, wrote a blog about Ebola. The question was whether it was a global health problem. At that time, the disease had been largely a scourge in West Africa. Since then, we’ve seen the first cases of Ebola in the US and, it feels like only a matter of time before the disease is found in a wide range of countries.

Just over 10 years ago, the world was dealing with SARS, and not long before than, HIV/AIDS. Caring for these patients hasn’t been without dangerous consequences. In Toronto, two nurses and three other health care workers lost their lives from SARS.

Despite the risk, nurses have cared for patients with these scary infections, even in the earliest stages when knowledge about how to prevent the spread of infection wasn’t entirely understood. Some people understand the incredibly important role that nurses play in these circumstances, such as television personality Rick Mercer:

In the past, these nurses and health care providers have been seen as heroes. Not so in the recent cases where nurses in Dallas contracted Ebola after caring for a patient with the disease. They were criticized on a number of fronts including failing to take proper infectious control precautions and travelling in the days after working with the Ebola patient. The outcome of this was information arising from the nurses themselves, through a national nurses association, outlining the lack of proper protective equipment, failure to place the Ebola patient in isolation early, and even the fact that the nurses caring for the patient with Ebola had other patients in their workload. Nurses United has since posted a letter to President Barak Obama, outlining the minimal requirements for caring for patients with Ebola.

One wonders, though, is it enough? Refusal to work is a topic on the minds of nurses and nursing organizations across the globe. In his blog, Dr. Brian Goldman, discusses the response of Canadian nursing associations. He rightly identifies the risk that nurses, in particular face because they spend the most time and the closest contact with high-risk patients. There is a lack of specialized knowledge about the specific infectious control procedures required to safely care for people with Ebola.  I also wonder if there is a will on the part of hospitals to appropriately train and staff the units where Ebola is present. There is a law in my province of Ontario that gives a limited right of refusal of a healthcare worker if there are circumstances where the worker feels there is danger.

As countries prepare for the potential of Ebola within their borders, one wonders what the nursing response will be if/when it arrives. If nurses are not given the tools and knowledge for safe care and are criticized as they were in Dallas, maybe, just maybe, will they say no?

Roberta Heale, Associate Editor EBN, @robertaheale

Option Grids: Expanding our toolkit for supporting shared decision making

19 Oct, 14 | by ashorten

I am always looking for new ways to improve the way we support patients to make informed choices about their healthcare, using the best available evidence from research. Shared decision making necessitates information sharing and giving patients a voice in decision making. It is often easier said than done and both patients and care providers need new ways to build better connections. This is, in reality, a huge challenge. Healthcare services are incredibly busy and resources are stretched. Time is limited and conversations are plagued by huge variations in health literacy and language. Fragmented models of care, where patients see different providers at each visit, leads to inconsistencies in information sharing. Patients can become frustrated and confused when information is not standardized and they receive different answers to the same questions, depending on the biases of the different providers they speak with. Then we have the added but influential input from family, friends and the media bring to the mix. We need new tools in our toolkit for providing consistent, evidence-based information, delivered from the perspective of patients.  Providers need tools to lay the foundation for effective shared decision making, in a way that meets an individual’s personal decision making style.

I have recently been exploring Option Grids – decision support tools originated by Glyn Elwyn and others in 2009 at Cardiff University. Option Grids help patients compare treatment options using patient generated frequently asked questions and concise evidence based answers.1 Evidence is gathered from sources such as the National Institute for Clinical Excellence (NICE) in the UK, with the aim for best available evidence to inform the answers to patient questions.1 The grid format provides a short (one-page) easy to read (reading age 10-12 years), easy to use (takes just a few minutes) comparison of options.1 Patients simply work through key questions and answers, comparing their options across the grid. Patients are asked to identify and highlight what questions or issues matter most to them and discuss these key questions in more detail with their provider.1 For more information about the Option Grid Collaborative, at The Dartmouth Center for Health Care Delivery Science in the USA, visit the Option Grid site .

The sophisticated simplicity of these decision support tools makes them valuable for a wide range of patient care settings and decision scenarios. In the context of pregnancy care, for example, there are currently Option Grids for decisions about Screening for Down’s Syndrome in Pregnancy, Amniocentesis testing and Newborn Circumcision. Option Grids for contraceptive decision making are currently listed as being under development. I am sure there are many more to come in the future.

Option Grids have great potential for broad application and I can see how they might be useful not only in medical screening and treatment consultations but in many everyday nurse and patient decision discussions. I encourage care providers to check out the web site for a list of currently available Option Grids as well as those currently being developed. Patients need a voice and it is important for nurses and midwives to expand our toolkits to better support patients who might have difficulties knowing what questions to ask or how to ask them. Taking the time, even if it is limited, to identify issues that are important to patients and their families can make a difference to the outcome and experience of healthcare decisions.

Allison Shorten RN RM PhD

Yale University School of Nursing



  1. Elwyn G, Lloyd A, Joseph-Williams N, Cording E, Thomson R, Durand MA, Edwards A. Option Grids: Shared decision making made easier. Patient Educ Couns. 2013; 90 (2): pp. 207–212
  2. Option Grid® <accessed October 19th 2014>


Why is pain still not managed effectively?

13 Oct, 14 | by hnoble

Due to unforeseen circumstances this week’s Twitter Chat focusing on the care of people with learning disabilities has had be postponed. Watch this space for details of its rescheduled date. Given this I am taking the opportunity to report on some of my reflections while at the World Congress on Pain.

Along with several thousand other people I am currently at the World Congress on Pain in Buenos Aires, Argentina. One of the things I have been reflecting on whilst here is why, if so many people are interested in pain, patients are still experiencing moderate to severe unrelieved pain. We know what we should be doing but this knowledge doesn’t seem to be used in practice. For example, for paediatric acute and postoperative pain there are clinical guidelines available (Association of Paediatric Anaesthetists 2012) yet we know that children continue to experience moderate to severe pain in hospital postoperatively (Kozlowski et al. 2014, Stevens et al. 2012, Twycross et al. 2013).

The workshop I am involved in tomorrow explores this in relation to acute pain for children in hospital. My paper reports on a systematic review that explored nurses’ postoperative pain management practices over the past 20 years. The results of the systematic review revealed some improvements. For example, there is some use of self-report tools and opioids are administered more often. However, these practices are not consistent. There is still a lot of room for improvement. Many of the papers included in the systematic review were chart audits. This means much of what we know is based on documented practices rather than what actually happens in the clinical setting. Three observational papers did provide a greater understanding of current practices (Byrne et al. 2001, Shrestha-Ranjit & Manias 2010, Twycross 2007).

One of the key things that needs exploring is the reasons suboptimal practice continues and which strategies are most effective at changing practice. I am presenting a second paper on behalf of an ex-PhD student (Dr Anna Williams) that looks at nurses’ conceptualisations of children’s pain. This paper draws on sociological principles to help us understand nurses’ thinking about different types of pain (routine pain; pain versus fear; complex pain). The management of a child’s pain seems to depend on how nurses conceptualise the pain. Professor Bonnie Stevens from Toronto Sick Kids Hospital and the University of Toronto is presenting a paper reporting on the success of knowledge translation strategies in changing practices in hospitals across Canada. Some of the preliminary results have already been published (Stevens et al. 2014).

Over the past decade there has been a growing awareness that a unit (ward) has a set of informal rules that determine how pain is managed. This was demonstrated by the results of an ethnographic study on two (adult) units in one hospital in the USA (Lauzon Clabo 2008). Participants described a clear but different pattern of pain assessment on each ward. The social context of the ward appeared to influence practices. Further, in one Canadian study, paediatric nurses described the unit’s pain management culture as giving pain medications regularly even if they are prescribed prn; this appeared to be the factor that impacted most on practice (Twycross et al. 2013). Another study exploring neonatal pain management also found organisational context affected practices (Stevens et al. 2011).

We perhaps also need to explore the reasons why clinical guidelines aren’t used in practice. One reason may be the quality of some guidelines. A recent review of paediatric clinical guidelines for acute procedural pain concluded that many of them were of average quality (Lee et al. 2014). However, just having a good quality guideline does not mean it will be implemented in practice. In Lee et al.’s review the vaccination guideline (Taddio et al. 2010) scored the best for quality, yet is still not being using in practice.

The current emphasis on evidence-based practice has provoked debate around the role of tacit knowledge in clinical practice (Gabbay & LeMay 2004, Thornton 2006). The distinction between explicit and tacit knowledge refers to the difference between knowing what and knowing how (Polanyi 1966). Explicit knowledge is codified, abstracted and can be transferred through formalised means such as texts, whereas tacit knowledge arises through experience and is personal and contextual as well difficult to make explicit (Greenhalgh et al. 2008). Clinicians in multidisciplinary teams have been shown to draw on tacit knowledge in their use and interpretation of standardised outcome measures, adjusting patient scores in accordance with their tacit knowledge of individual patients (Greenhalgh et al. 2008). In pain assessment, the impact of clinical judgement and tacit knowledge has begun to be addressed in work that suggests a self report score is only one factor health care professionals consider when deciding how much pain children are in (Voepel-Lewis et al. 2012). Additional research is needed to explore if and how tacit knowledge impacts on pain assessment practices and how this impacts on the quality of pain management practices.

Dr Alison Twycross

Head of Department and Reader in Children’s Pain Management

Department of Children’s Nursing

London South Bank University




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