Sticky Categories and Their Negative Consequences c/o Mikulak et al.

Category - Theory and Practice

Hodges' model -
A model for care in whatever situation, care environment*.

 

Individual

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      INTERPERSONAL    :     SCIENCES               

HUMANISTIC  --------------------------------------  MECHANISTIC      

 SOCIOLOGY  :    POLITICAL 

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Group

'I' Me My name is . . . I am a person. I am an individual. Even if I don't thank you, there may be someone out there who thanks you for acknowledging, confirming, sustaining, preserving and respecting my identity. Even if I don't ask you for your name please share it with me, when you feel  the time is right. Together ...

[Abstract] "‘Behaviours that challenge others’ are attributed to 20% of people with learning disabilities. These behaviours are not a diagnosis, it is something people are labelled with. We conducted qualitative interviews with social care staff in the UK within four models of care: independent supported living, residential nursing home, Shared Lives, and living with family and attending a day opportunities centre*. We examine how the category of ‘behaviours that challenge others’ is produced, applied, and contested in adult social care settings. We demonstrate its stickiness and discuss its stigmatising consequences. How behaviours are understood, felt, and talked about matters for the support people with learning disabilities receive and maps onto their consequent inclusion or exclusion from society. We point out the harms the category carries for people who receive it and argue that it should be abandoned." p.110.

"Labeling theory suggests that labels lead to stigma, through changing how a group is perceived by others and supporting stratification (Haft et al. 2023). According to Link and Phelan (2001: 383), stigma ‘exists when elements of labeling, stereotyping, separating, status loss, and discrimination co-occur in a power situation that allows these processes to unfold’ (emphasis added). The acceptance of categories as valid and important differences is described by the labeling element of stigma (Link and Phelan 2001). Here, we attend to how this ‘labeling’ aspect of stigma interacts with its other mechanisms in the category of ‘behaviours that challenge others’." p.112.

"Emotions are not private, rather, they ‘circulate between bodies and signs’ producing meanings and creating ‘the surfaces or boundaries of bodies and worlds’ (Ahmed 2004b: 117); thus, affect is always distributed (Wetherell 2015). We propose the category—and the labeling process behind it—should be understood within an ableist (Campbell 2009) distribution of affect and politics of emotion; one that subordinates the experiences of people with learning disabilities through establishing the ‘truth’ of the reading as external and mediated through the emotions of people without learning disabilities. ‘Behaviours that challenge others’ (and synonyms of the category) are inherently relational but also reflect and reproduce existing power imbalances. We suggest their stickiness rehearses and reinforces the ableist politics of emotion that positions people with learning disabilities as ‘less human’ (Goodley 2021) and at times as monstrous. The category is a product of this politics, one that repeats its rehearsed, sticky associations, making the reading of the proximity of people with learning disabilities in the present a result of histories marked by dehumanization. The method of categorizing people through labels also makes them more susceptible to what McClimens has described as ‘reauthoring’, with collective histories ‘presented in a way that condones or even justifies their current situation’ (2007: 259)." p.113.

Mikulak, Magdalena, Sara Ryan, Elizabeth Tilley, Susan Ledger, Lisa Davidson, Pam Bebbigton, and Dawn Wiltshire. 2024. “Sticky Categories and Their Negative Consequences: People with Learning Disabilities and ‘Behaviours that Challenge Others’.” Scandinavian Journal of Disability Research 26(1): 110–123.
DOI: https://doi. org/10.16993/sjdr.1069 (with my emphasis)

I have cited Mikulak et al. in 1/2 papers submitted yesterday after revision on: threshold concepts, deprivation of liberty, residential care and Hodges' model.

New challenging behaviour charter launched

I noticed the item below (with links and images added here) on the Foundation for People with Learning Disabilities Forum. It makes a very important point:

"The label 'challenging behaviour', has become misused over time."

My worry is that this finding is not just relevant to individuals with learning disability and their families, but other groups.

People with dementia, especially in the latter stages can present with behaviour that is increasingly described as 'challenging'. Care facilities are being commissioned and designed with the requisite care, staffing and environment to provide care for people in an effort to provide the highest quality and standard of nursing care.

To some extent these are distinct groups with specific needs. So the use of 'challenging' in one context obviously has a different currency and meaning in another. Whilst the practise and care environments may be separate, is there no place where cross-over may occur? I remember a local RCN meeting presentation that highlighted the demographic trend of dementia within the learning disability population.

To start a painting we often start with a wash:
efficiency - puts a broad brush in the hand.

As we aspire to provide person-centred care
what type of brush do you hold?

We paint with the words we use - take care.

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The Challenging Behaviour - National Strategy Group has launched a charter to promote the human rights of individuals with learning disabilities who are perceived as challenging.

Up to 27,000 people with learning disabilities in the UK may have been given a label of challenging behavior, resulting in this group of people being - stigmatised and socially excluded denied the right to ordinary lives in the community, to education, recreation and employment placed in institutional settings a long way from home and families.

The label challenging behaviour, has become misused over time. Rather than being used as a term to encourage carers and professionals to understand the underlying reasons for a person's behaviour, 'challenging behaviour' has been used as a diagnostic label, viewed as being intrinsic to the person.

The Challenging Behaviour - National Strategy Group want people (and organisations) to sign up to the charter to register their support for the principles it contains and to commit to action to improve the lives of children and adults who are labelled as challenging. We need as many people as possible to support us, so please ask your friends and family to sign up too.

To read the charter, including an easy read version visit:

http://www.challengingbehaviour.org.uk/

ENDS

What is the Challenging Behaviour - National Strategy Group?

The Challenging Behaviour - National Strategy Group (CB-NSG) was launched on November 7th 2008. The CB-NSG is a key national group to address the needs of children, young people and adults with learning disabilities whose behaviour is perceived as challenging.

Members of the CB-NSG include family carers, representatives from the Department of Health, Royal College of Psychiatrists, British Psychological Society, Royal College of GP's, NHS Trusts, researchers, service providers and a range of practitioners, regulators, commissioners and third sector representatives. The group is action and outcome focused and comes together twice a year to monitor progress, share best practice and develop coordinated action plans.

What is challenging behaviour?

"Behaviour can be described as challenging when it is of such an intensity, frequency, or duration as to threaten the quality of life and/or the physical safety of the individual or others and it is likely to lead to responses that are restrictive, aversive or result in exclusion." (Challenging behaviour - a unified approach; RCPsych, BPS, RCSLT, 2007)

Challenging behaviour is things like hitting your own head against a wall, pulling curtains down or pulling someone's hair. Often people do this because they cannot communicate with words and they have little or no choice and control over what is happening to them. How do I find out more?

To find out more about the Challenging Behaviour National Strategy Group, please refer to 'All change' the Summer issue of 'Challenge' today. This issue focuses on the work of the National Strategy Group and includes articles from Dr Roger Banks (Consultant in the Psychiatry of Learning Disabilities), Jackie Edwards (Family carer) and Bob Tindall (United Response).


'Challenge' is the newsletter of the Challenging Behaviour Foundation and is available free of charge by emailing: info at thecbf.org.uk or downloading from www.challengingbehaviour.org.uk

Helen Marron
The Challenging Behaviour Foundation
Email: info at thecbf.org.uk

'Problem patients?' 2 - Appease me do (not)

Many of the aspirations of nursing are just that - aspirational.

Appeasement and other similar 'power' associated concepts helps explain some of the appeal of Hodges' model - with its inclusion of a POLITICAL care domain. The needs of the ONE (interpersonal care domain) are diagonally opposed by the needs of the MANY (political care domain).

Just because I may approach someone (*evidently*) abusing medication / alcohol, over-eating, risk taking ... does not mean I am prepared to continue to nurse them and hence support them in that behaviour. Attempts to engage can be made and (must be) documented, as subsequent referrals and care will build on those care encounters. There is a marked difference between those individuals above who are often socially excluded, risk takers and people who are preoccupied with their health and mental health state. (Are such people stuck in the 'sick role?) Such patients may well seek new drugs and then instantly question the medication they are taking, never satisfied, they may query their care record and care while in hospital by virtue of their personality and anxieties.

I can reject negative behaviours and attitudes, but not the person. As a member of the health care team I can explain clear terms for future engagement should the patient wish. At the end of the day we constantly review: do they have mental capacity and to what extent does their behaviour present a risk to themselves, or others...? There is also a role for specific care management to be effected, to screen and prevent people reaching emergency services when this is repeated and unnecessary. The combination of some conditions such as long term respiratory problems and anxiety can create acute management problems, both for the individuals concerned, their family carers and care providers.

People do have choices to make, and so must take responsibility for how they exercise those choices.

Crucially this also needs to be explained to referrers - e.g. general practitioners / family physicians. For effective care management the inclusion of paramedic, crisis, social and intermediate care services in care management communication and coordination is also essential.

So, there is absolutely no need for a "current model of appeasement based care".

(This is a wind-up - surely? If not I am available for career advice.)

Yours truly and the patient's (even if it hurts),

Peter Jones

'Problem patients?' 1

Nurse Philosophy list

"Welcome (nursing) home?"

Sometimes people residing in nursing and residential care facilities become so ill they need to go into hospital. In community mental health terms this can mean that an individual's behaviour can be so disturbed they need specialist assessment and care. It is essential to ensure they can have the best quality of life that their circumstances can provide, without resort to 'care by medication'.

The job means listening to people in care asking to go home. Staff need to be skilled and sensitive in how they respond to such requests, especially when they are repeated time after time. Family members can really struggle with this; should they visit? It is amazing how things can change though...

Quite a while ago I visited a care home and had arrived a bit early. As I turned-up the lady I'd called to see had just returned back from a stay in hospital. It was remarkable to see her recognise the home as home. She responded warmly to the nurse in charge, the many greetings and reassurances offered plus the familiar surroundings. As we accompanied this lady through to her room, it made our day (my week) to hear the deep sigh of relief when the door to her room was opened.

She said, "Oh, it's good to be back."

Walking over to the side of her bed, this highly trained life-trooper stopped.

Sometimes when a tree falls in the forest and someone IS there, there is no sound - just emotion.

Suddenly this lady made like a falling pine in Grizedale forest. In slow motion she fell sideways to greet her bed with another sigh - satisfaction and rest. The home manager and I just looked at each other....

Close call that - just missing the wall - but so good to be 'home' at last.

Image source: http://www.english-lakes.com/grizedale_forest.html