Rooms with a View (and without) ...

There are times ... when to understand body, mind - and the things that people do to themselves and others - we need to consider the four care domains.

Then we can appeal to the fifth. ...

Carer's support evidence / measures and end of life care

The following e-mail was received this week from (Prof.) George Kernohan and includes correspondence with Mary A. Waldron, Research Assistant, University of Ulster (thanks to Mary for confirming the reference).

My responses to George's points are right justified, italicised.

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Peter,

I am beginning to find examples of Hodges’ model every day now.

Once you adopt the model as a framework George it does tend to frame everything,
so I am not surprised at your finding. Maybe there is a paper there too...

Today we had a second research meeting to consider a (more) rigorous attempt to evaluate the provision of ‘support’ to carers of people undergoing palliative or End-of-Life Care (EOLC). An area of care with a dearth of evidence. So we looked at one review from Grande et al. (2009). They say that:

There has already been considerable research identifying carers’ needs in EOLC. These include psychological support, information, help with personal, nursing and medical care of the patient, out of hours and night support, respite, domestic and financial help.^9,10,16–21 There is also a large body of research into adverse effects of care-giving, such as anxiety, depression, stress, strain, fatigue and mortality.^22–24
Given this strong evidence base, any further investigation into the prevalence of needs and adverse effects should mainly focus on under-researched groups to ensure that future interventions are sensitive to their specific concerns. This includes carers of patients with conditions other than cancer, including neurodegenerative disorders,²⁵ respiratory²⁶ and cardiovascular diseases,²⁷ to help us understand how differences in disease trajectories, awareness of the terminal nature of the disease and available support²⁸ translate into different carer experiences. Although carers of patients with dementia have been extensively researched, little is known about their needs during patients’ final phase of life.⁹ p.340.

(The numbers refer to references by Grande et al., I have extended the quote used here).

Thanks for this paper George (and Mary) which I will read in full.
I extended your quote to encompass some additional interesting ideas.

To move toward a plan for a more rigorous evaluation, I would like to use a simple framework: here we go!

I think I will be suggesting Hodges’ Health Career as a possible model.

:-) ! If I can support you in this George I am pleased to help.

This could provide a framework for all carer-focused interventions in a broad way. As always, it would imply that carers need to have their needs addressed in terms of science, sociology, politics and interpersonal needs. As I see it, the first step would be to ‘map’ the carers’ needs onto that framework (from publications, if necessary from carers themselves). The basic idea (I think) is that care should address the four quadrants:

• Science: (carer’s physical needs, information, instruction)
• Political: (policy that enables care for carer, finance, allowance)
• Sociology: (recognising that people need people, networks and “sharing” groups, story telling/hearing)
• Interpersonal: (psychological support, prevention of anxiety & depression)

Have you any thoughts or guidance on this “mapping exercise”?

Goodness, that's quite a question!

Plenty of thoughts George but not sure how meaningful ....
Basically, since a community mental health project in 1990s
I have always considered (as per standard approach of course) that a toolkit of measures are needed. Even when we start from that most basic of distinctions between demand and supply.

As per your approach if h2cm is considered as a circle, a spectrum -
(sometimes we must circle the square)
then (if holstic) the adopted measures should cover all the domains:

Political: (outcomes, carer, patient satisfaction, financial assessment (means testing), respite care frequencies, reviews)
Interpersonal: (mood, coping ability, anxiety, depression, sleep, HoNOS)
Sciences: (pain, general health scales, care complexity (measures?))
Sociology: (dedicated carer assessment tools, sociability - social network size, psychosocial measures... there are many out there)

George, I realise the above is a ragbag collection but - like yours - these are dimensions which can (must) be reduced. Now there is also emphasis on this area post Darzi and the 'new' quality agenda.

This will serve (and is serving) to emphasize the distinctions between measures:

Objective - Subjective
Quantity - Quality
Staff administered - Self (Patient, Carer) administered
Global/general - condition specific
Service centered: Primary care - Secondary care

While it is easy to spin dichotomies,
the NHS must (constantly) focus on this area whatever the policy emphasis:

NHS Information Centre: Measuring for Quality Improvement

NHS Information Center: What is happening on indicators for...?

NHS Inst. for Innovation and Improvement: Quality and Service Improvement Tools

Earlier this year I contacted the NHS-IC [enquiries at ic.nhs.uk] regards additional measures of quality suggesting that the health career model bears due consideration (research).

Mental health services (and others?) have recognised how the measures they use can be a chaotic, personally selected, preferred, legacy-mix of assessment tools. Dictated by Senior Nurses, Consultants, Senior Management and not the evidence base. Now these are assured (are they?) with purposed selection (a task worthy of an 'away day') and then supported with regular in-house training.

Last month Anne-Marie Osbourne-Fitzgerald, Clinical Development Nurse, with (her) Clinical Manager, Denise Banks (Cygnet Hospitals), met Michael Doyle (Univ. of Manchester & Edenfield Unit, Prestwich Hospital) and I one evening at the Trafford Center in Manchester. Our two hour+ discussion covered the health career model, documentation, approaches to formal assessment and future plans (aspirations!). In the time available we obviously only scratched the surface, but Mike and Anne-Marie brought along examples of their paperwork.

Mike demonstrated how the health career model can be used implicitly or explicitly. At the Edenfield Unit the domains are being used individually to make up what is a standard A4 portrait form. The model informs their existing documentation; rather than the explicit form of the h2cm with the 2 x 2 matrix.
(I have a MS Word version of the latter and must update this to other formats).

Legally, as we know if it is not written down, recorded then it did not happen.
Educationally however, the objective is also to get students - practitioners - to think - before they do.

Anne Marie's documentation example at Cygnet Hospital included The Recovery Star:

http://www.mhpf.org.uk/recoveryStarApproach.asp

As you consider the star's points against the domains of the health career model - where in the model are you?

Can this provide another means to define 'care pathway'? A way that is not masked, hiding behind political, policy rhetoric (and really service-centered)? There are without question some excellent tools available, so care needs to be taken not to re-invent the wheel - hence your literature search. In some tools the effort and engagement of patients, carers and the public is exemplary. It seems what is needed is a hybrid solution. There is no single measure.

It may not sound scientific, but the complexities of care mean that academics, clinicians and managers must resort to a pick'n'mix approach. There is a battery of evidenced tools each with their history, application context and issues log (Why not? Lack of the latter might denote that such tools are no longer in development / review). As a clinician also involved in training, managers need to listen and make some tough operational decisions. The comms 'traffic' between clinicians, their managers, and senior managers needs to improve even more. Since, just using the above as an example, the STAR approach may find us on a ramble in the humanistic domains, the constraints of the mechanistic domain prompts the clinician's to ask:

"If you want me to use this assessment tool, what other thing do you want me to put down?"

As we are all aware: There is only so much time in a day, week, month, quarter. ...

In follow up emails I directed Anne-Marie to -

http://www.p-jones.demon.co.uk/contexts.htm

If you scroll down there is some discussion and graphics I did quite a while ago. This deserves revision as per the rest of the website, but the ideas are there I believe which can inform your project George?

Back then - and here on W2tQ I have been trying to demonstrate the wide range of contexts to which the health career model can be applied. In our meeting that evening the well established Tidal Model was also noted. This has of course benefitted from specific development, as per research that has produced audit and evaluation tools (Stevenson, et al. 2002).

It might make a useful reflective article – or at least a conference presentation. Ideally it would lead us to a measurement or observation approach ...

I would relish the prospect of a paper George, or a conference presentation. Not just contributing as a co-author/presenter, but supporting and enthusing new authors. The 21st century belongs to our students. Hodges' model can act as 'stellar' nursery not just here in the UK and EU, but globally. And not just in our respective disciplines (mental health, palliative - end of life care, forensic nursing care), but in informatics - conjoining and championing the need for socio-technical perspectives.

In addition to the above and thinking before they do, all health and social care practitioners must be able to reflect after.

As one of the original purposes for the model in my initial interview with Brian Hodges, research work addressing these are much needed.

This conceptual framework can offer much in case formulation, evaluation, clinical supervision, patient, carer and public (health) engagement.

[In short -] Can we measure Hodges' model?

George K. (Prof.)

You started with a big question George and similarly here at the end.
We have to be able to do this. In the first instance taking apart your question - there are clearly several questions here:

PRACTICE:

Above you noted that:

This could provide a framework for all carer-focused interventions in a broad way. As always, it would imply that carers need to have their needs addressed in terms of science, sociology, politics and interpersonal needs. As I see it, the first step would be to ‘map’ the carers’ needs onto that framework (from publications, if necessary from carers themselves).

It would be interesting to consider the formal process and practice of dementia care mapping against Hodges' model. Perhaps the approach you seek is something similar? If carer's make use of self-assessments these e-documents might act as an input for text analysis tools? If appropriate you could also weight certain items according to the priorities of carers? This would build on other carer research adding validity to your 'final' objectives.

Carers and clients (patients, service users) can with due explanation, appreciate the health career model. The model has a role to play in health education. I can well imagine a proforma similar to the Recovery Star example above, but purposed for carers and underpinned with the health career model. We also need to remember the spiritual domain, which is collective.

Ultimately George, your question concerns our ability to measure holistic, integrated, person-centred, multidisciplinary care and to state the obvious: there is no single measure to do this. Several tools and approaches gathered within a conceptual framework might however provide an environment favourable for a hybrid measure to emerge - literally a cycle?

THEORY:

In the paper you referred to George - Grande. et al. (2009) state:

In parallel with the lack of empirical evidence, there has been a lack of theoretical and conceptual models for when and how support provision in EOLC should improve carer outcomes. To guide further research, palliative care may here benefit from drawing on models within other fields, such as gerontology, sociology or psychology. p.341.

I am biased, but reading the paper the potential of the health career model as a high level tool is convincing just from a 'disciplinary cross-match'. Intra-, interdisciplinary, metadisciplinary and transdisciplinary perspectives could be a focus. This in addition to the specific knowledge and practical domains of sociology and psychology and as the authors note models therein. I forget the reference at the moment (and will check), but I recall carers / family units being framed in terms of strengths and weaknesses. That is, events, characteristics and relationships impact on a family with either additive, subtractive or neutral effects. This would seem applicable here?

While Grande et al. (2009) note that the (informal) carer's role is hidden (and is routinely described in this way) I wonder if in palliative care there are other dimensions that accentuate this 'hidden, covert' role?

The politics of potential death and actual dying may be another factor the health career model can help illuminate in a constructive, enabling way? Health care, patiency, sick roles, caring are always mediated by 'politics'. Hence the need for a political domain in any conceptual framework that Grande, et al. may consider. On a negative front, the model might also illustrate alienation and related concepts?

In conclusion!

Thank you so much George and Mary for my being able to share your initial thoughts here and respond with some of my own. I hope this helps you take your work further? There may be a few points to follow, which I will add and as you have noted above there is much that could be done to take this further.

Peter J.

From: Waldron Mary [mailto:MA.Waldron at ulster.ac.uk]
Sent: 06 June 2010 17:49
To: wg.kernohan at ulster.ac.uk
Subject: Carers Support Evidence

George,

Jury's still out on the effectiveness of support interventions and programmes which support carers in palliative care. Not enough research. Lack of evaluation, lack of rigour, no conclusive research, but lots of policy advocacy of carers support and addressing of needs. Sample of lit attached.

Mary A Waldron,
Research Assistant,
School of Nursing,
University of Ulster.

Many thanks George and Mary for your ongoing interest, and to Anne-Marie, Denise and Mike.

Reference:

Grande, G. et al. (2009) Supporting lay carers in end of life care: current gaps and future priorities, Palliative Medicine, 23: pp. 339-344. DOI: 10.1177/0269216309104875

Stevenson C, Barker P and Fletcher E (2002) Judgement days: developing an evaluation for an innovative nursing model. J Psychiatric and Mental Health Nursing, 9(3), 271-276.

Stellar nursery image
My source: http://media-2.web.britannica.com/eb-media/60/21260-004-3C62CA58.jpg

Paper: The health career model in forensic nursing

The other week a paper was submitted to a journal on the application of Hodges' model in forensic nursing.

I am really pleased to have worked on this as a co-author and to find the health career model proving its relevance and value in such a challenging care environment.

Basically we divided the work and the paper as follows:

• Introduction to Hodges' model (new material);
• Explanation of why the model is relevant in forensic mental health services;
• Applying key principles of theory and practice of forensic care to each care domain;
• Discussion, recommendations and future directions.

Of course, this is just the 'submission' stage, so I will share news and details here in the near future - for now it's fingers x'd! If you believe the above 'content formula' might be useful to you as a publication template please do get in touch: h2cmng AT yahoo.co.uk

CARE: Whether NHS or Social Care ...

C	A
R	E

Whether -
NHS or Social Care^*
what
C.A.R.E.
is crying out for is a
universal, shared, holistic and wholly integral conceptual framework.
Then and only then will the currencies^# of care be
transferable, translatable and transforming!

* Private, 3rd sector, religious order, or social enterprise ...
# Currencies does not just refer to finance.

Forensic Nursing: bio-psycho-social (political) steps

I've been searching for a definition of forensic nursing and came across this by The International Association of Forensic Nurses (IAFN)…

“the application of nursing science to public or legal proceedings; the application of the forensic aspects of health care combined with the bio-psycho-social education of the registered nurse in the scientific investigation and treatment of trauma and/or death of victims and perpetrators of abuse, violence, criminal activity and traumatic accidents.”
IAFN 2002

While seeing bio-psycho-social in the definition comes as no surprise - the list of areas, situations and contexts that forensic nurses may work in is enlightening:

• Interpersonal Violence
• Forensic Mental Health
• Correctional Nursing
• Legal Nurse Consulting
• Emergency/Trauma Services
• Patient Care Facility Issues
• Public Health and Safety
• Death Investigation

In writing about the relevance of Hodges' model in this field there is the assumption that forensic nursing is specialized, but built - of course - upon fundamental nursing principles and values. These are carried forward in forensic nursing theory and practice - Beyond Tradition, Advancing Humanity -  as the IAFN slogan ably puts it. Being reminded yesterday of mental health law (always a good thing!) in training on Mental Health Act 2007, I can see just how well Hodges' model can support the early bio-psycho-social steps of the nurse learner.  Then if students go on to specialize in forensic care, the model's political care (knowledge) domain will continue to serve them well.

Hodges' model: publications

The book chapter for Radcliffe Publishing is now in the hands of the editor. This is great step forward for Hodges' model (and me) in that the text considers the model within substance misuse care and services. To my knowledge the only other book chapter is that of Brian Hodges' in Hinchcliffe (1989) [please see the bibliography lower right].

The next project entails me completing my half of a paper on the application of Hodges' model in forensic nursing. My contribution introduces the model (with new text) to a forensic nursing audience and highlights why h2cm is of relevance to this very challenging specialised field of nursing. This is also a significant development being yet another clinical example and a co-authored effort. Collaboration with other people interested in and actually applying Hodges' model is definitely the way forward.

There are other topics that in championing h2cm would hit the sweet spot:

• Continuing the current vein - papers on clinical applications for the model in mental health, learning disability and health visiting. These are areas in which the model was first taught and originally applied. 

• The four original purposes for the model also compete for attention:

1. supporting holistic theory and practice;
2. reflective practice;
3. bridging the theory - practice gap;
4. curriculum development.

On that last theme, I need to type up a review of a book on curriculum development in nursing that will be featured here shortly. In the meantime if you have an essay, case study to complete, please bear h2cm in mind (and paper). ...

Medinfo 2010 South Africa 12-15th September

Cape Town, South Africa will host the 13th International Congress on Medical Informatics from the 12 - 15 of September 2010.

This will be the first time MEDINFO is held in Africa. It promises to boost exposure to grassroots healthcare delivery and the underpinning health information systems. This will open the door to new academic partnerships into the future and help to nurture a new breed of health informaticians.*

Conference Theme

Partnerships for effective e-Health solutions

Innovative collaborations promote solutions to health challenges

The theme for the International Medical Informatics Association’s (IMIA) 13th World Congress on Medical Informatics, Medinfo 2010 is Partnerships for effective e-Health solutions with a particular focus on how innovative collaborations can promote sustainable solutions to health challenges. It is well recognised that information and communication technologies have enormous potential for improving the health and lives of individuals. Innovative and effective change using such technologies is reliant upon people working together in partnerships to create innovative and effective solutions to problems with particular regard to contextual and environmental factors.

As Medinfo 2010 brings together the health informatics community from across the globe we are seeking to focus on how we can work together and share our experiences and knowledge to promote sustainable solutions to the challenges presenting to us all. This will be an historical event as Medinfo 2010 is hosted in Africa for the first time.

My sources:

Implementing Best Practices (IBP) Knowledge Gateway GANM
& The Conference Company and the Medinfo2010 website.

Africa! While I have linked to many, I have never attended an International informatics event. This one sounds really special being in Africa.
*I would love to pass over the baton that is Hodges' model and also discover what other conceptual frameworks may be out there....

Can YOU add to the H2CM bibliography (now listed on W2tQ)...?

For readers not already aware, yesterday I started adding a bibliography to the blog. It is listed in the side-bar.

Links are included if applicable and these have been checked. I can supply electronic copies of most of these papers if you wish.

There are two publishing projects in process that are closely related to each other, covering substance misuse and forensic nursing.

On the forensic nursing front just over a week ago I met and greatly enjoyed speaking with -

Dr Michael Doyle
Nurse Consultant, Professional Lead & Honorary Research Fellow
Greater Manchester West Mental Health NHS Foundation Trust
Edenfield Centre
Prestwich
Manchester
M25 3BL

Apparently, Hodges' model is used and has quite a history at the Edenfield Centre. So Mike and I are working on a paper we will submit to a journal before the end of the year. More on this to follow.

In the hope that Erdos-Bacon Numbers might work for me, if anyone reading this has contact with community mental health nurses in the Isle of Man please get in touch. I understand they have used the model in the past.

Finally, should you be interested in applying Hodges' model in your nursing, social care, education or informatics theory / practice, do let me know h2cmuk @ yahoo.co.uk. I would be pleased to provide some paper - electronic resources and advice as needed.

August! Great Drupalcon soon!

Best regards everyone,

Peter J. (and yes that is me up there)