Privacy and Dignity in Continence Care for Older People

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Privacy and Dignity in Continence Care for Older
People

• Jenny Billings, Helen Alaszewski, Charlotte
  Hastie, Linda Jenkins, Laura Holdsworth

2
Overall Aims of the Project

• Identify and validate person-centred attributes
  of dignity in relation to continence
• Develop reflective guidelines
• for dignified care
• Produce recommendations
• for best practice

3
Background

• Dignity in care a priority (DoH 2003, 2007)
• The complexity of dignity
• Multidimensional (Calnan et al 2003)
• Impact on practice? (Levenson 2007)
• Focus on continence
• RCP (2005, 2006)
• Billings, Brown and Wagg (2005, 2006)

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Phases of the project

• Phase 1 Develop attributes of dignity in
  continence care through literature and
  interviews with older people in nursing home
  and hospital settings.
• Phase 2 Use observation (stage 1) and patient
  validation (stage 2) in same settings to
  develop and refine person-centred attributes of
  dignity in continence care.
• Phase 3 Develop reflective guidelines for
  practice using a validation process with
  continence and dignity experts.

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Literature

• Dignity in Care
• Related to autonomy, self-determination, self
  respect (Hofmann 2003 Woolhead 2004)
• Attitudes, boundaries and privacy (Birrell et al
  2006)
• Control, choices, independence, hygiene (Franklin
  et al 2006)
• Use of attributes (Chin and Jacobs 1983)

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Phase 1Identifying patient-centred dignity
attributes around continence

• Purposeful selection of 33 participants over 65
  years with a continence problem in East Kent and
  London
• Broad application of continence problem
• Age range 68-89 male (13) female (20) NH (15)
  H (18)
• 4 nursing homes, 4 hospital wards
• Able to give consent
• Recorded semi-structured interviews

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Data Analysis

• Defining Dignity
• Personal dignity dignity and others dignity and
  continence
• Professional care
• Communication personal care time choice
  privacy
• Coping strategies
• Strategies internal and external to setting

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Dignity and Continence

• Self Awareness
• Oh well, youve lost nearly everything, . you
  dont like going out far and if somebody comes by
  and they give a sniffle you think its you, you
  know, that sort of thing. .. Im very, very
  conscious of it all the time. Yes, its worse
  than having a big lump on your nose or something.
  (NH1 41)
• Keeping a low profile
• Ive been incontinent for so long, Im use to
  living in the corner, if you know what I mean and
  its not very nice but I do it, I keep a very
  low profile and do the best I can. (H1 73)

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Dignity and Continence

• Embarrassment and Shame
• Its these rotten pads that I dont like. Its
  like youve got a bundle underneath your bottom.
  Thats what loses your dignity when you have to
  wear those things. (NH1 36)
• while theyre wiping me down I do feel
  embarrassed because some of these nurses are only
  20 or 30, you know and sometimes I break down
  and they say, what are you crying for? and I
  say, well, you dont realise.. You see, I
  feel remorse about this. (NH1 13)

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Professional Care Communication

• You can feel the respect when they speak to
  you. You know you can also see it, you can feel
  it. (H 24)
• They smile. You smile, they smile back at you.
  (NH2 411)
• have you seen what kind of day it is, gosh
  its cold outside. All that kind of thing you
  know.. (H1 144)
• . I said I was afraid Id had an accident in
  bed you know, she said dont worry about it,
  dont worry about it at all. and no problem
  getting up in the night you know, you only have
  to buzz the buzzer. (H1 62)

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Professional Care Personal Care

• Individualised Care
• .I mean theyre all very, theyre all very
• thoughtful about how you are and what your
  problem is and they just seem to know how to
  treat you and how to touch you and everything. I
  dont know how to explain it other than that (H1
  143)
• They know that I wear them but they dont make
  a big deal out of it. If I ask them for a pad
  out of the drawer, oh yes certainly, they get it
  they give to me, finished. They dont question,
  dont talk about it or anything after that unless
  I want to and thats how it is (H1 19)

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Personal Care

• Putting up with it
• It is the pulling about you know if
• youve got aches and pains, you know. Its
  rolling you over and you know, and straining on
  the leg. Its something you have got to put up
  with I suppose, I dont know. (NH427)
• Its not very quick action. Not the girls
  fault, they are busy doing something else and
  they cant get there quick enough and often you
  have accidents. It is not very nice and you have
  to tell them you are doing it in your drawers
  and youre running out of time and as I say it
  isnt always their fault. (NH331)

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Professional Care Exercising Choice?

• No, no, they dont give me a choice
• because the fact is, its got to be done,
• whether I want a choice or not. (NH116)
• They cant come at certain times cos they have
  got changeover and youve got to wait, you
  cant go and thats it and then its too late and
  accidents happen. You try not to but you cant
  always hang on. (NH337).
• They bring me a commode and I stand up and they
  put me back onto it.. . I wasnt given a choice,
  they did it and I ask for it now. (H232)

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Coping Strategies

Humour Some keep you waiting a long while, they
tease me now and again, you know. Others say
theyll be back in a moment and I say, Where are
you going, Heathrow? Theyre alright (NH2 16)
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Coping

• Acceptance
  and resignation
• Well I dont need any choice, what they do is
  necessary, thats it. I cant say, well I
  wouldnt say sorry, go away I dont want to know
  you so thats it. I just accept it (NH4 16)
• Concealment
• Even my best friend, he doesnt know and I have
  no intention of telling him. So you can imagine
  how choked up you can be with it, do you know
  what I mean? (NH1 43)

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Coping

• Apologising
• I am apologising to them all the time. If you
  know what I mean? Well I wouldnt ask anyone to
  wipe my bum. But they do. For a 71 year old man
  Ive got a little bit of dignity. But I cant
  help it, its got to be done so hence I apologise
  to them. (H1 42)
• Praise
• Every morning I have a wash, all my armsall
  round thereIm encouraged to do that because it
  saves the nurses a lot of time. The nurses say
  oh, good ol Harry, he can wash himself (H2
  155)

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Methods Commentary

• Recruitment
• Frailty of population group
• Mismatch between professional and
  patient/resident ideas of continence

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Analytical Commentary
Coping Adaptation/ Suspension Humour Concealmen
t Apology and praise Making allowances
Issues in Care Person-centred Communication Re
lationships Manner of care
Dignity in Continence Personal Reserve
Choice? Expectations
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Attributes of Dignity and Continence

• Care, Communication and relationships
• Being discreet, gentle, not rushed, reassurance
• Making eye contact, respectful, friendly
• Choice
• Toileting method
• Timing and initiation
• Privacy and Hygiene
• Clothing and concealment of pad or catheter
• Knocking before entering room/curtains
  closed/sign
• Washing and fragrance, skin care, appearance

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Phase 2 stage 1 Testing the attributes through
observation

• Instruments for recording the continence event
• Schedule and field notes
• Tested in hospital and nursing home settings

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Commentary
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Phase 2 stage 2 Validation of dignity attributes
by participants

• Dignity and continence
• Communication and relationships
• Choice
• Privacy and hygiene

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Commentary

• Recruitment issues
• Data
• An extension of phase 1, but with added richness
• Strengthening of domains

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Phase 3 Development of guidelines
RCP Continence Steering Group
Two working groups
Wider expert validation of guidelines
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Developing reflective guidelines
Dignity and Continence What does dignity mean to
you? Can you think of a time when your dignity
was affected? How did it make you feel?
Communication and Relationships Have you ever
felt you were a burden to someone? How did this
make you feel? What does reassurance mean to
you?
Choice Think about a time when you were not able
to have a choice. How did it make you feel? Do
you think there are times when its OK to
restrict choices?
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Centre for Health Services Studies

• www.kent.ac.uk/chss