why measure qol in pwd?

A comparison of methods in determining QOL in people with dementia living in Australian residential care

Professor Wendy Moyle RN PhDDeputy Director

Research Centre for Clinical and Community Practice Innovation

2Research Centre for Clinical and Community Practice Innovation, and Griffith Institute of Health

Why Measure QOL in PWD?• Historically, evaluation of dementia has focused on

biomedical outcomes

• Influenced and constrained nursing responses to monitoring responses

• Concept of QOL has been neglected in this population

• Knowledge of QOL enhances our understanding of the needs of PWD and their value as human beings


QOL Measurement Challenges • Challenges in this population include:

• Impairments in memory, language and insight

• Therefore →

• Personal evaluations overlooked

• QOL inferred using observation and proxy measures

• Led to gaps in knowledge about the:- Experience of dementia, and - Perception of QOL in this population


Why An Interest in Moral Worth?• Research suggests nurses can make harsh

judgements as to patients’ moral worth & that such judgement can impair care provision (Cassell 2004)

• Similarly there is tacit agreement that the values & beliefs of aged care staff effect the quality of care for PWD in residential aged care (RACF) (Lintern, 2001)

5 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health

Two Aims of the Research• To provide an understanding of the quality of life

(QOL) & perception of moral worth of people with dementia (PWD) living in residential aged care

• To inform a new model of care for nurses working with older people with dementia

• Moyle, Cheek, McAllister, Venturato & Oxlade (2007) Enhancing QOL and Moral Care in People with Dementia - ARC (L) grant LP0775127

• Research Manager – Susan Griffiths• Industry Partner RSL Care


Research Design• Mixed methods

• Rationale for use in this study

• Based on assumptions & knowledge generation

• Measurement issues of QOL in general & specifically to this population

• Multiple methods & perspectives adds to synergistic & complementary understanding of QOL & moral value in PWD

• Processes embodied valuing PWD


Methods and Processes• Multiple data collection methods: Surveys, Semi-

structured interviews, Observation & Documentation Analysis

• 2 validated dementia-specific QOL tools; ADQ and Staff Experiences; Researcher developed moral value instrument; RSOC and interviews: QOL and Moral Value

• Multiple perspectives: PWD, family/friend, management, nursing & care staff

• Sites: Four QLD Aged Care Facilities


Findings: Participant Characteristics• Residents (n=61)

• 70.5% female; Mean age 86.7yrs (74-97); 75.4% low care• All meet DSM-IV criteria• Mean MMSE 21.03 (8-30)

• Family Members (n=59)• 72.9% female; Mean age 60.2yrs (35-89)• 77.9% daughter/son, 10.2% spouse• 49.2% retired; 30.5% full-time employment; 20.4% part-time/casual• 36.1% visit weekly; 21.3% visit 2-5/wk; 11.5% visit daily

• Staff Members (N=49)• 91.8% female; Mean age 45.8yrs (19-60)• 55.1% PCW; 18.3% RN/EEN/EN; 16.3% DT/AO; 10.2% Managers


Findings

• QOL-AD (Adapted by Edelman et al, 2005)

(1 Poor; 2 Fair; 3 Good; 4 Excellent) – resident, staff and family completed

• Resident (PWD) Mean (SD): 2.62 (0.45)

- scored ↓ on “Energy” (2.16) & ↑ on “Relationships with staff” (3.26)

• Nurses’ Mean (SD): 2.33 (0.57) and Family Mean (SD) 2.34 (0.49)

- scored significantly ↓ than resident on: “Relationships with staff”; “Friends”; Ability to care for oneself “Ability to make choices” (p < 0.001)


Findings contd• D-QOL (Brod et al, 1999) (1 Not at all/Never; 2 A little/Seldom; 3

Some/times; 4 Quite a bit/Often; 5 A lot/Very often) – Resident completed

• Five Sub-scales Mean (SD): between 3.40 – 3.75

• Moderately strong positive relationship between “Overall QOL” (item 30) & “Felt hopeful” (0.494) & “Felt useful” (0.439) – p<0.01 - these feelings may be an important indicator of QOL.

• “Felt useful” and “Felt hopeful” were also the lowest rated items (2.67 (1.11) and 2.98 (1.22) respectively)

• N = 42 /61: The D-QOL proved more difficult to use with some residents in comparison with the QOL-AD


Findings contd

• ADQ (Approaches to Dementia Q) (Lintern et al, 2000) - Staff completed

(Scale: 1 – 5; Higher score = better)

• Recognition of Personhood rated highly by staff- Mean Personhood (SD): 4.35 (0.44)

• Hope rated lower- Mean Hope (SD): 3.66 (0.56)


Findings contd• Moral Value (Moyle et al. 2007) 9 items; 5-point scale - Family and staff

completed

• High positive ratings on most items for staff & family

• Families however revealed some uncertainty on the following items:- “PWD have no insight into what makes them happy” (50.9%

disagreed; 27.3% agreed)- “PWD have no meaning or purpose left in life” (72.8% disagreed,

16.3% agreed)

• Conversely 98 – 100% staff disagreed with the above statements


Staff Experiences survey (Åstrom et al, 1991) – Staff completed

Not at All/ Somewhat

To a moderate degree

Very much/ Extremely

Do you experience stimulation in your work? 4.10% 26.50% 67.40%

Do you experience satisfaction in your work? 2.00% 12.20% 85.70%

Do you feel satisfied in your contact with dementia residents? 10.20% 24.50% 65.30%

Are your expectations from work satisfied? 18.40% 32.70% 49.00%

Do relatives of PWD respond to your expectations of them? 20.40% 34.70% 42.90%

Do you find your work rewarding? 2.00% 12.20% 85.70%

Is your workplace ideal for the care of PWD? 22.50% 40.80% 36.80%

How often do you feel strained in your contact with PWD? 46.90% 46.90% 6.10%

Selection of items


Findings contd• Adapted RSOC - (Zimmerman et al, 2001) Observations – 28 hrs / 5

min intervals• Short dialogue – 8/15 communications brief (<6 words) and 7/15 (7 words –

2 mins)• Limited evidence of ‘challenging behaviours’ – 2/21 residents exhibited

dementia related behaviours (pacing/repetitive mannerisms)• Most residents (12/21) had no physical contact during observation period –

contact (6/9) defined as non-intimate (1-2 5 min periods)

• Documentation Analysis

• Demonstrates challenges with terminology & tensions in service provision

- eg. standardised care - prescriptive activity programs


Qualitative Findings • Resident Interviews

• QOL described as being overall good but defined as- “.. good as can be expected” & “… having three meals a day and there’s a

television to watch sport..” makes life good

• Staff frequently seen as too busy to spend quality time with resident- “They seem to have very short staff quite often and the girls really work hard”

- Need staff to “ listen to me and that’s very important to me”

• Interviews suggest that PWD do not feel valued- “I don’t know that I am of any value”- “So much has been taken away from me, you're not doing things for

yourself”• Descriptions of feeling valued in the past

- “ I used to do a lot of sewing and everything before which I don’t do now” [what stops you from doing sewing] “I can’t think the same as I used to think, I can’t organise things…” [would you like to continue sewing] “Yes”


Qualitative Findings contd• Staff Interviews

• Suggest staff are often task focused & therefore less individually focused

- “sometimes you are so flat out, you are one staff member short and you think I have to pick up an extra shower…. you think I only have 10 minutes to get everyone ready for breakfast”

• Frequently focused on problem behaviours - [not supported by observations]

• Staff often used personal & instinctive approaches to care“…I don’t adhere to any model or any method and I just treat them like normal

human beings.


Qualitative Findings contd• Family Interviews

• Indicate they are generally satisfied with the level of care- “She gets good care as far as her bedding, food & everything is there for her. If

she wants to go out on day trips & that, we can’t complain”

• Some families would like to see more emphasis on care beyond meeting physical needs

- I don’t have a problem with her care. I would like to see her do more, but that is another question….she does nothing other than sit in front of the TV and listen to it”

• Families see limitations to the level of care (esp. related to time constraints and compliance of care recipient)

- [staff] don’t have that extra time to but they do the best they can I suppose under the situation


Documentation Analysis• Demonstrates challenges with terminology & tensions

in service provision

• eg. standardised care

• prescriptive activity programs


Integrated Findings (quant and qual)

• Confirmatory findings• Interviews and Observations supports view that staff are task

focused & frequently too busy to spend quality time with resident

- Observations reveal positive staff interaction with residents yet little indication of interdependent relationships and non-task oriented care

- “They seem to have very short staff quite often and the girls really work hard”

- Need staff to “ listen to me and that’s very important to me”- “…they’re bright, it might be short [conversation] but it’s bright


Integrated Findings (quant and qual)• Conflicting findings

• Surveys and interviews suggest a strong focus on valuing the individual, their history & a recognition of personhood

- yet interviews & observations reveal care that is more tailored to the needs of the facility than the individual.

• Organisational documentation reveals a strong emphasis on the value of the individual

- yet some resident interviews reveal a sense of being undervalued, although this is not directly attributed to the facility or staff


Things that add to QOL• Opportunity for activities that meet individual needs

• More interaction/companionship “I’m always lonely…”

• Enhancing hopefulness “Haven’t got much to feel hopeful about really..”

• Environment – one that allows connection with outside world and variety “We’re all shut in here… I love to watch the moon and sun come up and go down…”; “I need variety, a change of scenery, tired of small talk”

• Opportunity to feel useful “When you’re not useful you’re finished”

• Food

• Humour – takes away from mundane

• Importance of individual biography linking above


Conclusions• Multiple methods and perspectives add strength to an

understanding of the QOL and moral value of PWD

• Areas of convergence & non-convergence in evaluations of QOL between staff/family & the PWD help with development of a model of dementia care

• Strengths and limitations of each approach

• Limitations are reduced when mixed methods approach taken

why measure qol in pwd?

Documents

moral care

perception of qol

enhancing qol

responsesconcept of

populationknowledge

dementia pwd

quality of care

nursing care staffsites