Meaning and measurement. Dr Mark Wilberforce, Senior Research Fellow. Contemporary Issues in Mental Health Seminar Series, 17 May 2018

Transcription

1 Meaning and measurement Dr Mark Wilberforce, Senior Research Fellow. Contemporary Issues in Mental Health Seminar Series, 17 May 2018

2 Many of the negative aspects of culture derive from a failure to see things from the patient s perspective and to understand the effects of actions or inaction on them. In the maelstrom of discussions and efforts devoted to reorganization, devising and implementing new systems and so on, the core purpose of healthcare services has all too often been overlooked. Francis Report (2012), p1367 2

3 ... the NHS too often asks insufficiently penetrating questions, insufficiently often, of too few patients... and the NHS Patient Survey, asking if patients were satisfied with the care they received, is too much like asking patients whether they were grateful. Department of Health, 2010

4 Generally measures do not meet modern standards Precious few relevant to community-based support Surprisingly little patient engagement in design

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6 My aim: To develop a measure of person-centredness as an experiential outcome measure, based on the priorities of older people receiving community mental health and social care support. 6

7 1. What does it mean? 2. From meaning to items 3. Testing the measure 7

8 1. What does it mean? 2. From meaning to items 3. Testing the measure 8

9 Definition by what it s not metaphor and imagery being grandiose Apparent simplicity, actual complexity Easier to adopt the language of personcentredness as an alternative to practicing it What are its defining features? A list of things without which could not legitimately describe itself as person-centred 9

10 Patient-centered contrasts with doctorcentered and replaces a Ptolemaic universe revolving around the physician with a Copernican galaxy revolving around the patient. Bardes,

11 Aim To describe core attributes of person-centredness Compare and contrast different meanings Broad-based literature review Electronic search but not systematic Span theory, empirical, evaluation, policy, practice, opinion and commentary Resemblance, rather than strict correspondence Thematic categorisation of most common attributes 11

12 Humanistic psychology 1. Unconditional positive regard 2. Congruence: not hiding behind professional façade 3. Empathic understanding of person s frame of reference When functioning best, the therapist is so much inside the private world of the other that he or she can clarify not only the meanings of which the client is aware but even those just below the level of awareness. This kind of sensitive, active listening is exceedingly rare in our lives 12

13 Social treatment of mental illness Deinstitutionalisation Challenge to legitimacy of psychiatry and mental illness Normalisation, Social Role Valorisation Independent Living Movement Civil Rights Movement Engel s Biopsychosocial model Social construction of health Medical imperialism Personhood in advancing dementia New public management and role of consumer Co-production of public services 13

14 Knowing the person Understands personal experience of illness or disability Knows the different dimensions of life affected Understands what is important to a person s wellbeing Understands what person values in support / care 14

15 Engagement in decision-making Person involved in decision-making processes Person s wishes respected in all decisions Individualised support planning Information and options shared Person shares in clear format responsibility for decisions 15

16 Promoting relationships Friendly, caring and respectful interactions Positive attitude to person s capabilities and roles Promoting family and community engagement Reciprocity in care relationship Continuity in care and service relationships 16

17 General medical, dementia care, adult social care A youthful bias? Choice and control of Is independence the only path to empowerment? At what level is change needed? At level of systems, or of care interactions? Is person-centredness a means, an end, or both? 17

18 Personhood is a standing or status that is bestowed upon one human being, by others, in the context of relationship Caregivers can undermine personhood: malignant social psychology Biggest influence in institutional care Remedies in care home environment, staff training and resident care Interventions: e.g. life story work 18

19 Dept of Health

20 The person-centred planning approach has a focus on supporting individuals to live as independently as possible, to have choice and control over the services they use and to access both wider public and community services Person-centred care has the same meaning as person-centred planning, but is more commonly used in the field of dementia care and services for older people. SCIE (2012) p3, emphasis in original 20

21 Social workers Emphasis on person-centredness as empowering people Nurses Emphasis on person-centredness as a means for developing rapport Physician Did not know how to define person-centredness but not empowerment or rapport Gachoud et al 2012 J. Interprofessional Care. 26(6). 21

22 Medical Social care Dementia 22

23 Thoughts? Observations? Questions? 23

24 1. What does it mean? 2. From meaning to items 3. Testing the measure 24

25 Dangers of bad measurement Chance of finding significant effect in Schizophrenia treatment. Marshall et al, BJPsych, 2000, 176:

26 SUBJECT OF MEASUREMENT IMPORTANT IDEA 1 IMPORTANT IDEA 2 IMPORTANT IDEA 3 IMPORTANT IDEA

27 Researcher / clinician generated Literature review Focus groups Individual interviews Concept Mapping? 27

28 Generate ideas Sort Map Interpret

29 Two groups of older people and carers using community mental health services One group in deprived, predominantly white, community One group in deprived, predominantly South Asian, community What words and statements best describe a good care experience? 126 statements between two groups

30 Statements printed onto index cards Participants and practitioners asked to individually sort cards into piles representing similar themes No restrictions, except no statement can belong to >1 pile On average, eight piles (range 4-17)

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34 Service users engaged in all elements Rigorous with statistical checks Recognisable, enduring themes Statements suited for questionnaire development (in service user own voice ) Can map back to literature review concepts But thin descriptions Excluded those with more than MCI South Asian participants 34

35 Thoughts? Observations? Questions? 35

36 1. What does it mean? 2. From meaning to items 3. Testing the measure 36

37 Tested 30 items, 4 point scale Self-completed and returned N=636, some matched data Response rate = 29 per cent (CQC=28 per cent) Proportionately more from people with non-psychotic functional disorders Additional 72 re-tested 3-4 weeks later.

38 a.... take what I have to say seriously b.... treat me with kindness, as though I matter to them c.... can tell my good days from my bad days d. I feel I have developed a close connection with... e.... understand the areas of my life that I need help with f. I am given enough time to say everything that I want to say g. I have a say in decisions taken... h. I am helped to keep in touch with my local community i. I get help with the things that are most important to me j. My opinions about my care and support are respected k.... helps me to feel optimistic about what I can still do l.... helps me to build confidence.

39 * Rasch rescaled scores Mean Median Std. Dev IQR 10.94

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41 Validity is about what is being measured Content validity: Do items map to construct of interest? Structural validity: How many things does it measure? Criterion-related validity: Does it perform as we expect? Reliability is about whether it performs consistently Internal consistency: Do all items correlate consistently? Test-retest reliability: Do scores agree in second application?

42 Criterion-related validity: Does it perform as we expect? i. Moderate correlation with Friends and Family Test ii. Patients who received visits by mental health support workers would report higher levels of person-centredness than other care workers. iii. Patients who received visits by homecare workers would report lower levels of person-centredness than other care workers. Reliability: Does the measure perform consistently? i. Cronbach alpha ii. Intra-class correlation coefficient

43 Criterion-related validity: Does it perform as we expect? i. Moderate correlation with Friends and Family Test ii. Patients who received visits by mental health support workers would report higher levels of person-centredness than other care workers. r = iii. Patients who received visits by homecare workers would report lower levels of person-centredness than other care workers. Reliability: Does the measure perform consistently? i. Cronbach alpha ii. Intra-class correlation coefficient

44 Personal factors Coefficient Standard error Age (0.519) *** Age squared (0.003) ** Mild/mod cog. imp (0.855) *** Support duration < 6 months on caseload (0.927) *** Support plurality (ref: 4+) Support provider Source of questionnaire (ref = Site A) Sees 3 workers (0.884) ** Psychiatrist (0.709) * CMH nurse (0.763) * Social worker (0.843) Support worker (0.801) *** Psychologist (1.006) * Homecare worker (0.821) Site B (1.107) * Site C (1.046) ** Site D (1.232) ** Received help completing questionnaire (0.756)

45 Criterion-related validity: Does it perform as we expect? i. Moderate correlation with Friends and Family Test ii. Patients who received visits by mental health support workers would report higher levels of person-centredness than other care workers. r = iii. Patients who received visits by homecare workers would report lower levels of person-centredness than other care workers. Reliability: Does the measure perform consistently? i. Cronbach alpha α=0.929 ii. Intra-class correlation coefficient ICC=0.871

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47 Patient experience deserves serious attempts at measurement Person-centredness is key PERCCI is rooted in preferences of older adults and carers using community mental health services Encouraging results, but still preliminary Number of respondents who will not criticise services

48 Interviewer: Did you mention someone earlier who had been [showing impatience]? Interviewee: Well, yes, [day centre worker], can be a bit abrupt. But that s who she is, I take it with a pinch of salt. She will talk to you [raises voice] you ve not taken your dish away!, you know. You see people muttering about her I didn t like her attitude at first, but if you give it back, she laughed and said OK. Interviewer: You answered never, so were you thinking of other care workers instead for that question? Interviewee: No, but not everyone accepts her the way I do. I just understand that, that s her personality She can be abrupt, but in a nice way

49 Thoughts? Observations? Questions? 49

50 Publish! (Quality of Life Research, hopefully) Release, with guidance. Future research Relationship with other outcomes of importance to older adults Establish minimal important difference

51 PPI: Ann, Eric, Joyce, Maureen Community groups: Longsight/Mosside Care Partnership, Age UK Tameside Supervisors: David Challis, Linda Davies, Mike Kelly, Chris Roberts. Research sites: NELFT, Humber, Bradford, Pennine, Manchester This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, or the Department of Health.

52 Mark