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Why do we need to talk about Perinatal Mental Health?

14 Apr, 14 | by Calvin Moorley, Associate Editor

By @PNDandMe (Twitter)

Antenatal Depression, Postnatal Depression and Postnatal Psychosis affect a large number of women in the UK. So many women do not receive the care they need because they are either afraid to ask for help, or when they do seek help are not given the access to appropriate care and support. This needs to change, women need to feel able to ask for the help in their time of need and know they will be given the best possible care.

During my weekly #PNDHour chats on Twitter we discuss a wide range of subjects surround Perinatal Mental Health, from improving knowledge in the Antenatal period for both expectant mothers/partners and Health Professionals, support for sufferers and their families, the need for a greater number of mother and baby units in the UK and much more, We are often joined by health professionals, and this input we are given is a great comfort for those who are currently suffering with Antenatal or Postnatal Depression/Postnatal Psychosis.

There are so many misconceptions surrounding Postnatal Depression, such as that it only affect women of a certain social backgrounds, those with previous mental health issues. That it comes immediately after the baby blues, when it fact it can present itself any time in the babies first year. Bonding is something that many women often struggle with when suffering with Postnatal Depression, however just as many women bond perfectly well and often become quite protective of their baby. Depression isn’t fussy, it affects women from all walks of life whether she be younger, older, professional, unemployed, Postnatal Depression can affect any mother.

Health Professionals who come into contact with expectant mothers or new mothers need to be better trained in mental health, I feel very strongly that this training for Midwives and Health Visitors specifically needs to be compulsory not optional as is so often the case. This will give these health professionals the knowledge to help mothers who present themselves with symptoms of Antenatal or Postnatal Depression and enable them to provide the best possible care and support for mothers.

Approximately 1 in 7 women suffer with a Antenatal or Postnatal Depression, these are the ones who find the strength to ask for help. This is huge number therefore the help these women receive needs to be far better, there is always room for improvement when it comes to care and support for these women, too many are failed by the system that is supposed to be there to help them, so often we hear or read about tragic cases of women who so alone, so helpless that they felt their only option was to take their life. This happens too much and things need to change.

Even more shockingly around 1 in 3 women are said to suffer with Antenatal or Postnatal Depression but go undiagnosed, we as a society need to make it easier on these women to seek the help in their time of need, We can make changes all we need to do is keep talking, keep doing what we can to improve the services of those with a Perinatal Illness, and always make sure we do what we can to help these women.

I hope that during the chat on Wednesday 16th April 8-9pm GMT we can continue to connect and bring together those who want to make a difference to the lives of those suffering with Antenatal or Postnatal Depression.We are the ones who can a voice to this hidden illness and fight for changes to the care and support received. The chat uses two hash tags this week #PNDHour #EBNJC look forward to sharing personal and professional prespectives.

No child should ever lose their mother to Postnatal Depression, So we must all work together to continually improve the services for those with Perinatal Illnesses.

Mental health – predicted to be the leading disease burden by 2030 – The role of the Commonwealth Nurses Federation

7 Apr, 14 | by hnoble

The 2nd Commonwealth Nurses Conference titled Nurses and midwives: agents of change, was held in March 2014 in London. Two hundred nurses from 26 countries attended the conference. The Commonwealth Nurses Federation (CNF) has several aims including contributing to the improved health by fostering access to nursing education, influencing health policy, developing nursing networks and strengthening nursing leadership and is an organisation that works tirelessly to improve the health of nations. One strong focus of the organisation has been mental health, predicted to be the leading disease burden by 2030. Some of the statistics the CNF provide are startling – Mental ill health will affect one in four people worldwide during their lifetime;  in 2010, the global economic impact of mental ill health  was approximately US$ 2.5 trillion and the cost is estimated to increase to US$ 6 trillion by 2030. The World Health Organisation have also highlighted this problem  identifying  that about half of mental health disorders begin before the age of 14 in children. Around 20% of children and adolescents in the word, regardless of culture, are estimated to have mental disorders or problems. This is a huge number and burden. Alongside this the regions of the world with the highest populations under the age of 19 have the poorest level of mental health resources.  Other worrying statistics include approximately 800,000 people committing suicide every year and mental health problems are frequently hidden, ignored or stigmatised.  Stigma about mental disorders and discrimination against patients and families prevent people from seeking mental health care. Alongside this many countries do not have a legal framework that to adequately protect the rights of people with mental health disorders (See http://www.chpa.co/).  Human rights are regularly violated in patients in many countries with frequent use of physical restraint, seclusion and denial of basic needs and privacy (See Health Action Plan 2013-2020 (See http://www.who.int/mental_health/action_plan_2013/en/)

The CNF has adopted the World Health Organisation’s Comprehensive Mental Health Action Plan 2013-2020. The action plan has four major objectives which include strengthening effective leadership and governance, providing  integrated and  responsive mental health and social care services in community-based settings, implementing strategies for promotion and prevention in mental health, and developing  information systems, evidence and research for mental health. Importantly these plans move away from a medical model to try and address social determinates of health such as education. The action plan also aims to empower people with mental health problems. Internationally nurses must be actively engaged in advocating for reform of mental health services.

The WHO has an extensive range of online resources available to practitioners to assist with these problems. The WHO Mental Health Gap Action Programme (mhGAP) aims to increase services for mental, neurological and substance use disorders recognising that with appropriate support, psychosocial assistance and medication, many millions could be treated for illnesses such as depression, schizophrenia, and epilepsy and ultimately  prevented from suicide. People could start to lead normal lives even in areas where resources are scarce. The mhGAP Intervention Guide is a technical tool providing management guidelines for priority conditions and includes protocols for clinical decision-making. A copy can be downloaded from: http://whqlibdoc.who.int/publications/2010/9789241548069_eng.pdf

Alongside this the WHO MiNDbank is a new online platform for sharing resources

in mental health, health, human rights, disability and development. (See http://www.who.int/mental_health/mindbank/en/ ). It provides easy access to a range of international resources including policies, plans, strategies, and legislation. The database allows people to share key policy,  strategy and technical documents from their countries  and supports people to implement strategies for improvement. It has a whole section on Mental Health Evidence and Research (See http://www.who.int/mental_health/evidence/en/).

The CNF makes a significant and influential contribution to the work of the Commonwealth Steering Committee for Nursing and Midwifery and is committed to collaborating with organisations such as the International Council of Nurses, the International Confederation of Midwives and the World Health Organisation. A key role is in driving forward changes in mental health using the best current evidence suited to individual cultures.

Building Resilience in Midwifery and Nursing Staff

31 Mar, 14 | by Calvin Moorley, Associate Editor

By Karen Murray Lead Midwife Education, Queens University Belfast

The work of nurses and midwives has been acknowledged as emotionally demanding. On a daily basis we deal with patients and their families during emotionally challenging times; we support them while they deal with anxiety, pain, fear and loss as well as joy and excitement. This ‘emotional work’ is often undervalued and goes unrecognised in the health care systems within which we work. In addition to this core element of nursing and midwifery practise we find ourselves working in increasingly busy and stressful environments; our patients are sicker, have more co-morbidities go home sooner, have greater social and physical needs and there never appears to be enough people to care for them.

These pressures create a potential legacy of problems for us personally, for our colleagues as well as for the patients and families we care for. The experience of increased stress and workplace adversity contributes to increased sickness rates and poor staff retention. Resultant staff shortages further exacerbates the pressures on frontline staff. Individuals who continue to work under this pressure will often develop self-protecting strategies to cope with the demands they face. For some, these may involve detachment and a reluctance to engage with the emotional aspects of caring, acceptance of the status quo and an inability to provide support for colleagues. Others develop more resilient strategies with allow them to adapt more positively to the increased stressors of their work. So what makes the difference?

Resilience can be defined as ‘the ability of an individual to cope with and adapt positively to adverse circumstances’ (Hunter and Warren, 2013). Resilience has been identified as comprising a serious of personality traits such as optimism, self-efficacy and hardiness which enable an individual to cope with increased adversity. Increasingly, resilience is viewed as the combination of internal and external factors, a dynamic process which develops over time and one which can be learned (Ungar, 2012; Neenan, 2009). If we begin to accept the view that resilience can be learned we then need to consider who has the responsibility to facilitate this learning?

It may be that each one of us has an individual responsibility to look after ourselves and develop resilient strategies. A literature review by Jackson et al. (2007) identifies that nurses can be active agents to positively adjust to workplace adversity and they propose ‘self-development strategies to facilitate resilience’. These self-development strategies include the building of positive nurturing professional relationships, maintaining positivity, developing emotional insight, achieving life balance, encouraging spirituality whilst also becoming more reflective. However, Jackson et al. (2007) proposes that the ‘self-development’ of nurses and midwives should not just be the responsibility of the individual but also of educators and the health care institutions. This is supported by Grafton et al. (2010) who, whilst acknowledging that individual nurses have a responsibility to ensure they develop ‘self-care’ practices, also recognise that healthcare institutions have an important role to play through the provision of supportive strategies which assist in the development of self-care through services such as education and counselling as well as work based facilities such as quiet rooms that enable staff to relax and reflect on practice. It is also suggested that policies and practices need to be implemented to promote reflective learning within teams. The government’s strategy for mental health (Department of Health, 2011) recognises the importance of building resilience for the health and wellbeing of individuals, it further encourages employers to recognise and promote these qualities. However to do this there is a need to have a clear understanding of what resilience is and how it can be fostered.

It is also suggested that predictors of resilience such as adaptability and positive identity can be strengthened through education and training (McAllister and McKinnon, 2009). These authors suggest that the educational implications of resilience research apply equally to undergraduate nursing and midwifery education as to education for registrants. McAllister and McKinnon (2009) specifically propose that that educational programmes should focus on enabling individuals to explore and develop their professional identity, as well as building their capacity for coping. They also suggest teaching leadership for change as a way to prepare individuals to better adapt to change. Finally McAllister and McKinnon (2009) suggest that ‘cultural generativity’ should be encouraged within teams. This is achieved by utilising the experiences of resilient practitioners, individuals who can act as role models by providing lessons and insights, as a mechanism to build resilience capacity within the professions.

It has been suggested that the development of resilience can occur at an individual level and can be mediated by education and work based practices. However, the research is limited and gives little direction as to the best way to help practitioners develop resilience. Yet, it seems to me, that resilience needs to be a fundamental element of modern practice. Given the challenges faced by both nurses and midwives with changes in the complexity of care being delivered, the pressures being placed on professionals to be more effective and efficient and an increase in autonomous ways of practicing our professions we need to develop healthy resilient strategies which will provide self-protection and ensure that we are able to meet the needs of our patients and their families.

Join the Evidence Based Nursing chat on Twitter this Wednesday 2nd April from 8-9pm GMT to discuss building resilience in Midwifery and Nursing staff #EBNJC

References

Department of Health (2011) No health without mental health. DH: London

Graften, E., Gillespie, B. M. and Henderson, S. (2010) Resilience: The power within. Oncology Nursing Forum 37; 698-705

Hunter, B and Warren, L (2013) Investigating Resilience in Midwifery. Final Report. Cardiff University: Cardiff

Jackson, D., Firtko, A. and Edenborough, M. (2007) Personal resilience as a strategy for surviving and thriving in the face of workplace adversity: A literature review. Journal of Advanced Nursing, 60; 1-9

McAlister, M. and McKinnon, J. (2009) The importance of teaching and learning resilience in the health disciplines: A critical review of the literature. Nurse Education Today, 29; 371-379

Neenan, M. (2009) Developing resilience: a cognitive approach. Routledge: London

Ungar, M. (2012) Social ecologies and their contribution to resilience. IN Ungar, M. (ed) The social ecology of resilience

Turning theory into practice using Community Links

26 Mar, 14 | by Calvin Moorley, Associate Editor

by Dr Fiona McGowan University of East London

As a Senior Lecturer on a Public Health postgraduate programme at the University of East London, I am increasingly aware of the importance for students to be equipped with BOTH practical and academic skills. This is ever more relevant in the competitive employment climate where possessing a masters degree comes with no guarantee of securing work, whether that be in a job that relates to the subject studied or not.

Teaching a Health Promotion module to a large cohort – and one which is very diverse in terms of age, ethnicity, professional experience and educational background, is challenging – but I have found that collaborative work ‘outside’ the classroom environment brings significant and tangible benefit to the students learning.

Together with the charity Community Links, I planned an outreach event which the students helped to organise, delivering the ‘small ‘c’ campaign’ which raises awareness of the signs and symptoms of bowel and lung cancer. The small ‘c’ campaign links to the national campaign that is being broadcast to ‘catch’ cancer in the early stages and to encourage people to seek help if signs and symptoms are noticed.  The event is organised so that small groups of students work with the Community Links team to engage with members of the public and are strategically positioned – for example, in both the shopping centre Westfield Stratford City and Stratford High Street. Both sites have high footfall, so the campaign can reach many people – including local residents and those who have travelled to the area for a shopping visit.

A stand was set up with posters and flyers to attract attention but it is vital that the message of the campaign ‘Spotting cancer early saves lives’ is understood and effectively shared with passers by. This is where students are encouraged to draw on what they have learnt in the classroom environment – the theories which underpin health behaviour, determinants of health, social inequalities, health literacy, communication skills and to be able to use this knowledge in a practical way.

I have found that the students though initially quite nervous welcomed the opportunity to actively ‘do’ Health Promotion ‘for real’ and to further develop their practical ‘hands on ‘ skills. This is a valuable experience as part of their programme, helping to improve speaking and listening skills and boost confidence when speaking to the public (especially when English is a second language!).  Student feedback reflects how this consolidates learning and facilitates personal development:

 

  • I have learnt how to effectively communicate public health information in a simple and polite way
  • The most valuable learning experience was having the ability to confidently get the message to people
  • “A great experience – it really helped me improve my confidence in talking to people”
  • “A great opportunity to get out into the real world and talk to the public, giving them important information”
  • “A wonderful experience meeting people from different backgrounds and to get an understanding of their belief s and knowledge”

Teaching Health Promotion to a very diverse group, is challenging but I have found that engaging in real world activities ‘outside’ the classroom is of benefit to the students personally, practically and develops professional behaviour and identity.

There are benefits for all concerned, the students become better equipped with knowledge and practical skills, community organisations who garner support and most importantly working together as health promoters of the present and future, prioritising the health and wellbeing of ordinary people going about their every day lives.

Parenting and mental health concerns

17 Mar, 14 | by Calvin Moorley, Associate Editor

Emma White – parentingandmentalhealth.com

With so many children being raised by a parent with a mental illness more support needs to be made readily available.

Many parents are suffering in silence, afraid to speak out due to fear of the repercussions of speaking with a health professional.

If they are honest and tell a professional how they are really feeling or admit they are not coping, the question often lurks will they have their children taken away?

Social services have become the enemy, and this view needs to change.

Parents need to be made aware that there is support available and that support needs to be offered in a timely manner and not delayed.

In many cases the parent’s mental health will be short lived and with the help and support of the family doctor the parent can adjust and be treated with medication and counselling.

Children are adaptable and are robust to change, but when a parent has a more severe mental illness, their lives can become disrupted. Not all parents wish to take medication, other options of therapy and treatments need to be made clear, the parent needs to feel as if they have options in their treatment plan.

A care plan needs to be made, the parent and health professional both need to be involved in the making of this and it should be referred to and adjusted as needed.

I knew something was very wrong a long time before I sought help. I was 4 months pregnant with my 6th child. I had children aged 1,2,8,9 and 13 at the time.

My moods were erratic, my behaviour out of control and I was suffering from a psychotic episode. I had no idea what was real and what was not.

I was confused, angry and frustrated, but I was terrified of what would happen if I spoke to a health professional.

Would they think I was a danger to my children?

Surely if I told anyone that I could see things and hear voices they would deem me insane and section me.

I did not have time to be ill; I had a business to run. What would my family and friends think of me? Would they think I was crazy? I had so many reasons not to involve outside help.

The truth was I was frightened.

There is no doubt that my children suffered during these times. Thankfully my husband, family members and close friends met their everyday needs.

I was not able to care for them the way I wanted to.

My husband struggled for many months before he contacted a health professional and I found myself in the mental health services.

I was admitted to hospital towards the end of my pregnancy. I was exhausted, my pregnancy had been horrendous. For 3 weeks I stayed in my local maternity ward.

I was terrified that I would hurt a patient or member of staff. I was not given a side room and I was seen twice by a mental health professional during this time.

I had asked a midwife for a knife, so I could cut the baby out. No red flags were raised. A mental health professional chatted with me for 10 minutes and that was it.

I saw someone else before I was discharged, without medication and no knowledge of any aftercare. Thankfully my health visitor became my guardian angel and ensured I was supported.

She went beyond her job title to help me and my family.

My father and his partner moved in with us, I requested that I was supervised when left alone with the children. I was not prepared to take that risk, I knew I was ill, very ill.

I had refused medication during my pregnancy when Lithium had been the recommended drug. I was finally prescribed sodium valproate after trying three other unsuitable medications.

I remain on that medication to date.

I hid my mental illness from my children as much as I could, as I did not want to emotionally damaged them.

I did not make some miraculous recovery, but after 3 years of trying various medications and being under the care of a psychiatric community nurse, psychiatrist and psychologist, I began my recovery.

I had been diagnosed with bipolar and as my mental health improved I was faced with the devastation I had caused.

I no longer had a relationship with my children. I was the outsider. They would go to my husband for advice or when they needed things.

I had never been asked if my children needed support.

I was never asked how I felt towards my children.

The truth was I resented them, they were the reason I had to fight this illness and get better. At those dark times when I wanted the pain to end, they made me stay.

I had to ask for support. I fought to have my 3 eldest children receive counselling and a support worker became involved.

Our lives were transformed.

This simple yet effective family therapy has changed our lives.

Why is this not offered to every parent with a mental illness? Why are children not thought of?

Thankfully my three youngest children do not remember when I was ill, my three eldest children are now very proud of me. I will always remember my eldest daughter saying to me – “Don’t you love us anymore?”

I had to ask a health professional how I could explain my mental illness to my children. Once I did explain they said “Why didn’t you just tell us, we could have helped you”.

I feel my children would have greatly benefited from counselling and support earlier.

I went onto opening a Facebook support group for mothers who have a mental illness and to this day the main reason they do not seek help is fear of losing their children. The benefit system also frightens them.

We need to ensure parents and children are correctly supported and reinforce to those who fear social services that wherever possible they are there to help, not remove children.

Join our #EBNJC chat on 19th March 2014 9-8pm GMT as we discuss expereinces of parents with mental health illness. Our co-host Emma White together with EBN Associate Editor @CalvinMoorley will be online to share her experience and discuss how we can support parents with mental health illness.

Emma White – parentingandmentalhealth.com  Twitter @therealsupermum

Understanding study designs for nurses who ‘don’t do’ epidemiology

10 Mar, 14 | by Calvin Moorley, Associate Editor

Nova Corcoran,  University of South Wales.

It’s that word ‘epidemiology’. Possibly it makes people think another other unpleasant word – ‘statistics’. Usually it takes you back to being a nursing student again and those research methods lectures that were full of words like p-values and confidence intervals.  In practice, nurses (and other health care practitioners) often lack confidence in their ability to understand statistical studies either because they never really understood research or simply just because they have not set foot in a classroom for years.  Epidemiological studies inform nursing practice on a day to day basis from what dose of drug to give, to the best ways to care for a patient. So perhaps it may be time to revisit some of the basics of epidemiology, and you don’t need a calculator to do it.

This post will introduce three common study designs; the randomised control trial (RCT), the case control study and the cohort study. From years of experience in teaching evidence based practice, the first common problem is that no-one can remember which study is which – hence the purpose of this post.  So I am going to try and explain these three study designs in their most simplistic forms:

a)     A RCT. This involves two or more groups, one of who is randomised to an intervention (i.e. a drug), and another who receives either nothing or a placebo (i.e. a sugar tablet). They are the control group. Both groups are measured at the start and end of the study to see if the intervention (i.e. drug) or placebo has any effect on the chosen study outcome (i.e. do they develop orange spots). This is considered the gold standard of research, so most drug trials and vaccines have been tested by a RCT.

b)     A case control study. This usually follows two groups of people, one who has something interesting like orange spots on their faces (cases), and one group who does not have the interesting thing (i.e. they have no orange spots). This study is usually retrospective, which means it looks backwards, or into the past, to try and work out why one group has the orange spots, and why the other group doesn’t.

c)     A cohort study. This follows a group of people over time to see what happens to them. This means it is prospective, so it follows people over a set period i.e. 10 years. The group of people usually don’t have what the study wants to investigate yet (i.e. no orange spots), but they have been exposed to something which might mean they develop something interesting later (maybe orange spots or even purple spots).

Now remember, this is the simplistic version. In practice you will find many anomalies such as more than two groups in studies or different sampling techniques (basically how people ended up in the intervention groups).  The best way to get to grips with these three study designs is to look for them in nursing practice journals and have a read of the articles so you can see how they work in practice.  For example in the evidence based nursing journal last month 17 (1) 2014 you will find examples from all three of these studies, and they are all clearly labelled as to what type of study to make your life a little easier. Have a read and if you understand the study design then you can give yourself a pat on the back as you now know how these studies were designed.

 

How online patient communities are changing the face of cancer care

3 Mar, 14 | by Calvin Moorley, Associate Editor

How online patient communities are changing the face of cancer care

By Marie Ennis – O’Connor  Twitter @JBBC

There is a revolution occurring in healthcare, perhaps most noticeably in oncology; the rapid pace of new discoveries, advent of genomics, targeted therapies, telemedicine, and personalized medicine, alongside growing access to internet-based educational and support resources is creating a new era in medicine. The Information Age is collapsing the boundary fences around previously closed information domains such as medicine.  Patients can now gain access to citations of more than 12 million medical articles online, allowing them to build a base of information that wasn’t previously possible.

This has given rise to the growth of the e-Patient movement, a movement in which patients and their caregivers are becoming engaged in learning more about their treatment options, incorporating what they learn into their treatment decisions, and even helping to shape these options through accelerating research and improving care.  They are smart, motivated and experienced patients with an impressive and up-to-date knowledge of the best sources, centres, treatments, research, and specialists for their condition. They go online to explore treatment options their clinicians did not mention, to double-check their diagnoses, to learn about alternative or complementary treatments, to compare the treatments their doctors suggest with those recommended by patients at other treatment centres, and to compare their current clinicians with other providers. E-Patients who have “studied up” on their diseases online say they have less fear of the unknown and more confidence in their ability to deal with whatever the future may bring—because of what they have learned during their online health research.1

This information seeking is motivated by a desire to have as much information as possible, and in some cases dissatisfaction with the insufficient information given by health care providers. In one study, 39% of persons with breast cancer indicated that they “wished that they had help with knowing what questions to ask.” 2 Satisfaction with information has been shown to correlate with quality of life,3 and patients who feel satisfied with the adequacy of information given are more likely to feel happy with their level of participation in the overall process of decision making.

While health providers may question the quality of information available online, the research that has been conducted to date finds little evidence to support the notion that information found on the Web is worse than in other media. Furthermore good communication and trust between patients and health care professionals can obviate any potential harm. Healthcare providers should recognize that many patients would like guidance as they turn to the Internet for medical information. Providers are in a position to utilize quality assessment tools and existing resources that facilitate referring patients to authoritative, commercial-free, patient-oriented medical information on the Internet. It is encouraging to see those that have embraced the opportunity to assist patients in finding and interpreting reliable and up to date information, by curating their own caches of health research through their social media accounts and websites.

Dissatisfaction with information is not the only reason why patients turn to the Web; patients may be happy with the amount of information they receive but still wish to reassure themselves that the information they have is sufficient. In addition, access to practical and experiential information from other patients is highly valued. Patients are taking note of peer recommendations about where and from whom to receive treatment, which specific tests and treatment to request, and where to find clinical trial options.  The Pew Research Center, which gathers data on health seeking behaviours online, calls  this “peer-to-peer health care”; its associate director, Susannah Fox has declared it “the most exciting innovation of the connected health era” . 4

It is well documented that patients turn to the Internet for more than information seeking; a key benefit accrues from the social connections formed through online cancer communities which provide emotional support and practical coping tips for managing the side effects of treatment. A randomized controlled trial with recipients of a breast cancer mailing list, suggests that a Web-based support group can be useful in reducing depression and cancer-related trauma as well as perceived stress. 5 Dr Gunther Eysenbach, recognized by many as one of the leading researchers in the fields of eHealth and Internet & Medicine, believes “ virtual communities are probably the one Internet application area with the greatest effect on persons with cancer.” 6  Heidi Adams, a young adult cancer survivor and founder of Planet Cancer, a social and informational site for young adults with cancer, cites social media as the foundation of the young adult movement. “Prior to 2000 there really wasn’t any way for this fragmented patient population to find each other and connect. Planet Cancer was created as an online home to connect patients…The opportunity to share resources, advice, and encouragement is something that can be incredibly empowering for a cancer patient.” 7

From travel to banking the Internet has disrupted many industries, and healthcare is no exception. The increasing democratization of medical information means it is no longer available only to healthcare professionals. Moreover, many patients are creating new content and sharing it in real time through online patient communities. Patient networks are emerging as a new medical domain within which a wide variety of individuals and groups become valuable healthcare resources.  The opportunity exists for healthcare professionals to aggregate the valuable insights and information in patient communities into population-based data that may lead to a better understanding of cancer and potential treatment options.

As evidenced by online patient groups, such as Consano, a unique medical crowd-funding platform, founded by a breast cancer survivor, and Patients Like Me, a patient network that improves lives and a real-time research platform that advances medicine, patients can accelerate the research process and bridge the limitations of geography through the connectivity fostered by internet-based communities. Finally, virtual communities present an excellent opportunity for health researchers to learn about the experiences of patients. They provide rich, anecdotal sources of individual experiences with disease progression, reaction to alternative and standard treatments, and opinions on healthcare and its effect on family members and lifestyle.8 It is a largely untapped opportunity for researchers to analyse where and why gaps exist between evidence-based medicine and consumer behaviour and expectations. Such research may elicit a wealth of valuable data that may inform priorities for research, health communication, and education.

 

The #EBNJC Twitter chat on Wednesday 5th of March 2014 8-9pm GMT aims to discuss breast cancer service users experiences in an electronic and physical environment discussing the benefits, barriers and enablers. This chat is hosted by Marie Ennis –O’Connor @JBBC and @CalvinMoorley.
1. Ferguson, T. e-Patient Scholars Working Group  [Accessed March 1, 2014]. Available at  http://e-patients.net/e-Patients_White_Paper.pdf

2. Silliman RA, Dukes KA, Sullivan LM, Kaplan SH. Breast cancer care in older women: sources of information, social support, and emotional health outcomes. Cancer 1998; 83: 706–711.

3. Annunziata MA, Foladore S, Magri MD, et al. Does the information level of cancer patients correlate with quality of life? A prospective study. Tumori 1998; 84: 619623.

4. Fox, S.  Peer-to-peer health care is a slow idea that will change the world.  [Accessed March 1, 2014]. Available at http://susannahfox.com/2013/08/03/peer-to-peer-health-care-is-a-slow-idea-that-will-change-the-world/

5. Winzelberg AJ, Classen C, Alpers GW, et al. Evaluation of an Internet support group for women with primary breast cancer. Cancer2003; 97: 1164–1173.

6. Eysenbach, G. The impact of the Internet on cancer outcomes. CA: A Cancer Journal for Clinicians. 2003; 53 (6), 356-371.

7. Patterson, K. Friends In Need. Cure Today. [Accessed March 1, 2014]. Available at  http://www.curetoday.com/index.cfm/fuseaction/article.PrintArticle/article_id/1416

8. Hillan, J. Physician use of patient-centred weblogs and online journals. Clin Med Res. 2003; 333–335.

Are nurses inspirational?

24 Feb, 14 | by josmith

Last month the United Kingdom Royal Mint announced that an image of Lord Kitchener, wartime general, would appear on a series of £2 coins marking the outbreak of World War One in 1914.  Social media commentaries highlighted that Lord Kitcheners’ famous army recruitment slogan ‘your country needs you’ glorified war, leading to alternative suggestions such as nurse Edith Cavell.  Initiated by a local councillor, and subsequently embraced by the nursing media, a petition for the image of Edith Cavell to be honoured ensued.  30,000 people signed the online petition in the first week.  If your history is a bit shaky, Edith Cavell was a British nurse who treated allied soldiers of all nationalities and assisted their escape from German-occupied Belgium during World War One.  In August 1915, she was arrested and charged with assisting allied soldiers escape to neutral Holland, tried by a court-martial, sentenced to death and executed.  Edith Cavell represents all nurses who provided care during World War One, who though dedication and courage were committed to saving human life.  Other inspirational nurses have been similarly honoured; in 2012 the Royal Australian Mint launched a series of coins as a tribute to Australian Services nurses who play important roles during times of war, conflict and peacekeeping.

Nurses provide healthcare worldwide in a range of contexts, cultures, organisations and settings, and often remain largely invisible; yet to those who they support and care for, and colleagues they work with, are inspirational.  Every nurse will have been inspired by another nurse they admire. Many colleagues have inspired me; as a student nurse, I have clear memories of the ward sister on my first placement because of her depth of knowledge, vision in integrating evidence into practice (well before evidence-based nursing was taught) and her enthusiasm for teaching students. As a newly qualified children’s nurse working on a busy surgical ward caring for children undergoing complex surgery, it was a senior staff nurse that inspired me; she was caring and compassionate and had all the qualities I admired. I was in awe of her ability to make time for everyone despite the competing demands of a busy ward, junior staff and students, but it was the way she would engage with the child and family that most impressed. She had an ability to instil confidence and ensure the child and family felt valued and included in care decisions. What these nurses had in common was that they would not have perceived themselves as inspirational, perhaps best reflected by Samuel Butler the 17th-century poet; ‘Inspiration is never genuine if it is known as inspiration at the time. True inspiration always steals on a person; its importance not being fully recognised for some time’, from the Note-Books of Samuel Butler (1912).

Share your thoughts and comments:   What makes nurses inspirational?  Who has influences you throughout your career?

Jo Smith, Senior Lecturer Children’s Nursing, University of Huddersfield, Associate Editor EBN

Join in the blog discussion @EBNursingBMJ  Tweet me @josmith175

Sepsis Challenges – the Sepsis Six

17 Feb, 14 | by Calvin Moorley, Associate Editor

By Chris Hancock Programme Manager,

Rapid Response to Acute Illness Learning Set (RRAILS),

1000 Lives Improvement Service

After delivering a talk to a group of students, during which I had briefly mentioned sepsis, I was approached by one of the tutors. “I want to say thank you because now I think that I finally know what my mother died from” she said.

 She was a nurse tutor and therefore could be presumed to possess a reasonable knowledge of physiology and disease processes, yet had never heard of sepsis, this was no surprise.

Sepsis, is  the body’s reaction to infection which is responsible worldwide  for someone’s death every 3 seconds, sepisis is largely unknown to the UK public but, more worryingly, many healthcare professionals are ignorant of how to identify sepsis, the terrifying speed at which it progresses and the absolute necessity of rapid treatment.  

In the UK, sepsis is estimated to cause the deaths of 37,000 people annually, more than from any single cancer, at a cost to the NHS of £2.5 billion (1). As this figure is based upon Intensive Care data it is almost certainly an underestimate and does not take into account the burden of sepsis in primary and community care.

Although sepsis accounts for almost 50% of Intensive Care bed days it should not be seen as an ICU problem (3). We know that a significant proportion of the death and harm that is caused by sepsis could be avoided by enabling rapid identification, escalation and treatment in the acute ward or even pre hospital setting.

Terence Canning is one of the UK Sepsis Trustees who has moved back to Wales, following the death of his brother Mark from sepsis, to devote his time to raising awareness of sepsis.

One of Terence’s remarks has really stuck with me, he said “it’s not like cancer where you are searching for a cure, you know the cure, but you just need to make sure it’s done every time”.

What he was referring to was the ‘Sepsis Six’, the six simple actions, including administering antibiotics, which should be delivered within 1 hour of sepsis being recognised. A recent study has suggested that delivery of all elements of the sepsis six within the one hour limit was associated with a reduction of 50% in mortality (4).

In Wales sepsis has been declared a Tier 1 priority for the NHS. I am lucky enough to lead the Rapid Response to Acute Illness Learning Set (RRAILS) which has worked collaboratively with all Welsh Healthcare organisations, enable clinicians to improve the identification, escalation and treatment of sepsis and ultimately, of course, to reduce mortality.

This Twitterchat will promote discussion of subjects including:

  • Improving the speed of sepsis identification – EWS, screening tools
  • Communication and escalation – PSAG boards, safety briefings, SBAR tools
  • Effective treatment – Sepsis 6 bundles, sepsis response bags, standardised antibiotic formulary
  • Measurement – capturing process and outcomes data

 References

  1. Daniels R. The incidence, mortality and economic burden of sepsis.  (2009) In: NHS Evidence emergency and urgent care. http://library.nhs.uk/Emergency/
  2. Vincent JL, Sakr Y, Sprung CL, Ranieri VM, Reinhart K, Gerlach H, Moreno R, Carlet J, Le Gall JR, Payen D (2006) Sepsis in European intensive care units: results of the SOAP study. Crit Care Med. Feb; 34(2):344-53.
  3. Daniels, R. Nutbeam, T. McNamara, G. Galvin, C. 2011. The sepsis six and the severe sepsis resuscitation bundle: a prospective observational cohort study. Emerg Med J. 2011 Jun;28(6):507-12

 

Falling Through the Cracks

11 Feb, 14 | by rheale

Despite primary health care reform in almost every country in the developed world, the most vulnerable often continue to face terrible difficulties in getting the care they need in a seamless and coordinated fashion.  This situation is felt most acutely in the last year of life, for those dealing with disability, debilitation and palliation.  We know from reports that approximately one third of all health care spending occurs in the last year of a person’s life.  I wonder what this percentage means for people who have been healthy until this final year and continue to live at home until close to the end of their lives. It seems probable that the majority of those health care funds are related to expensive diagnostic testing, hospital and physician costs and a much smaller percentage of those funds toward primary health care and community services.  Without downplaying the importance of diagnosis and treatment, people often experience enormous difficulty in managing all the different pieces.  Patient navigation through complex health care systems is extremely important.  Even in the advent of Electronic Health Records, communication is commonly lacking between different providers and agencies.  The end result is that patients and their families suffer needlessly.

This situation is not new, however for the first time, I find myself not as a health care provider, but as the family member of a terminal cancer patient.  Although I’ve known the issues related to patient navigation from my 26 years in healthcare, I’ve been astounded at the barriers to care that continue to rise up in front of us, particularly for symptom management. Each physician and diagnostic technician has taken a narrow, specific focus to the care.  Not one would agree to assess and treat the weakness, lack of appetite and marked weight loss, lack of energy, anxiety and poor sleep of my family member.  We’ve asked for help from four physicians including the family doctor, two specialists and one doctor in the ER, without success.

I’ve worked as a nurse practitioner in my community for 15 years so I used some of my connections to have my family member assessed by the palliative care NP.  He hasn’t been given a definitive diagnosis yet and so doesn’t ‘technically’ qualify, but my colleague opened a file and took him on in care.  Suddenly, everything changed.  He has prescriptions which have already helped with appetite, energy and sleep.  He’s less anxious.  The case file has opened the door for other supportive care including an assessment of his needs from occupational and physio therapists. He’ll receive home nursing care if, and when, he requires it.  This team will keep all other providers informed of the care they are providing and will help my family as his condition continues to deteriorate.

I’m so incredibly grateful for this service and particularly impressed that the entire team stems from nursing leadership.  It’s just disappointing that I had to pull strings to make this happen.  What of people who don’t have these options?  The cost of this team is a very small percentage of the total health care costs, but the value to the patient and family is incalculable.  One outcome for me is that I will be even more cognizant of the ‘big picture’ when caring for patients and an even stronger advocate for better patient navigation and management, particularly when they are at their most vulnerable.

Roberta Heale, Associate Editor

Analysis and discussion of developments in Evidence-Based Nursing

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