Involving volunteer visitors in data collection National Centre for Training and Education in Prosthetics and Orthotics University of Strathclyde Glasgow

Involving volunteer visitors in data collectionInvolving volunteer visitors in data collection

National Centre for Training and Education in Prosthetics and Orthotics

University of Strathclyde

Glasgow

Scotland

Brian Callaghan

Callaghan BG, Condie ME (2003). A post-discharge quality of life outcome measure for lower limb amputees: test-retest reliability and construct validity. Clinical Rehabilitation 17, 858-865.

Quality of life assessment in lower limb amputees (Callaghan and Condie, 2003)

1. Adapt the Patient Generated Index (PGI) for Amputees

2. Test-Retest Reliability and Construct Validity Study

Aims of ProjectAims of Project

• Participants (N = 39)

– Inclusion Criteria• Over 16-years of Age• Unilateral /Transfemoral Amputation• Fitted with a Prosthesis• Discharged 1-Year

– Patient Selection• SPARG Database• 7 Participating Rehabilitation Centres

MethodMethod

Your answers to the following steps will tell us how your life is affected by your AMPUTATION AND ITS TREATMENT. It will also tell us how you would like to see your life improved.

In this part, you score the areas that you have mentioned in Step 1. This score should show how badly affected you were over the past MONTH in that area. Please score each area out of 10 using this scale: 10 = Exactly as you would like to be 9 = Close to how you would like to be 8 = Very good but not how you would like to be 7 = Good, but not how you would like 6 = Between good and fair 5 = Fair 4 = Between poor and fair 3 = Poor but not the worst you could imagine 2 = Very poor but not the worst you could imagine 1 = Close to the worst you could imagine 0 = The worst you could imagine

Think of the most important areas of your life that are affected by your AMPUTATION AND ITS TREATMENT. Please write up to FIVE areas in the FIVE boxes below.

ALL OTHER ASPECTS OF YOUR LIFE NOT MENTIONED ABOVE

Please use this last box to score all areas affected by other health problems and/or all other non-health problems.

Now think of the most important areas to you. You have 12 imaginary points to spend to show which areas you feel are the most important to you. Spend more points on those areas that you feel are more important to you and less on the areas that you feel are less important to you. You do not have to spend points in every area if you don’t want. That is, you can leave boxes blank if they are not important to you at all. Also, you can not spend more than 12 points in total.

Remember total must add up to 12

GroupsGroups

• Procedure

– Murray Foundation Visitors (N = 10)

• 1st Visit (at home)–PGI and SF-12

• 2nd Visit (at home 1-month later)–PGI Only

MethodMethod

• Procedure


• Before Study–Training day

• After Study–Debriefing day

MethodMethod

–Murray Foundation Visitors (N = 9)

Eight open-ended questions (given independently) to elicit experiences of MF visitors.

Responses (with frequencies)

Debriefing DayDebriefing Day

Question.Do you feel that the training you received at The National Centre was sufficient to enable you to carry out your interviews?

Answer. yes (x9)

Question.What do you feel are the most important skills for carrying out interviews with fellow amputees?

Answers.empathy (x2)patience (x1)listening (x5)guiding [pts] to understand questions (x1)

Question.Do you think that the participants you interviewed gave more information to you than they would have to me [Brian]?

Answer.yes (x9)

Question.What sorts of things do you think the participants talked to you about that they might have felt uncomfortable talking to me about?

Answers.NHS staff (x1)personal issues (x1)comfort/pain (x1)partners feelings (x1)hygiene (x1)sex (x1)toilet issues (x1)anxiety (x1)day to day activities (x1)

Question.What do you think makes for a good interview?

Answers.relaxed atmosphere (x3)willing participant (x1)one-to-one (x1)pt in good condition/no pain (x1)pt understands what's required (x1)pts home (x1)pt comfortable/not intimidated (x1)

Question.What do you think makes for a bad interview?

Answers.hurried (x1)no empathy (x2)over prompting (x1)other family present (x1)complicated questions (x1)pressure to say right thing (pt feels) (x1)tension (x1)interviewer uncomfortable (x1)“chip-on-shoulder amputee”?!

Question.Are there any questions, or types of questions, that you would feel uncomfortable asking a participant?

Answers.no (x3)sex/personal (x4)standard of living (x1)smoking/drinking (x1)

Question.If you signed a declaration of confidentiality, but then a participant revealed to you during an interview that they might harm themselves in some way, would you tell me or anyone else?

Answers.yes (x4)possibly (x3)no (x2)

Callaghan BG, Johnston M, Condie ME (2001-2004). Predictors of prosthetic fitting, use and recovery following lower limb amputation: illness related cognitions, attitudes towards prosthetic use, psychological distress and functional limitations. (funded by Chief Scientist Office (CSO), Scottish Health Executive)

Psychosocial predictors of prosthetic use and recovery (Callaghan, Johnston, Condie, 2001-2004)

• Participants (N = 170)

• A 12-month Cohort of New Unilateral Lower Limb Amputees (transtibial and transfemoral)

– Additional Inclusion Criteria• Over 50-years of Age• Fluent in English• Pass Cognitive Screening Test• PVD (Peripheral Vascular Disease)• 8 Participating Rehabilitation Centres

MethodMethod

Participants

– Questionnaire Development• TPB (Attitudes Towards Prosthetic Use)

– Assessment Times • 3-4 weeks post-operative• 1-month post-discharge from rehabilitation• 6-months post-discharge from rehabilitation

– Data Collection• Principle Researcher• Senior Physiotherapist• Murray Foundation Volunteers

MethodMethod

Procedure

Training DayTraining Day


Research Methods in Healthcare (Revisited)

Outline

1. The New Study

IntroductionAims and purposesResearch questionsMethodsProceduresImplications

How results could benefit lower limb amputees in Scotland

Discussion Talking about the study with visiting volunteers

Questions and answers

2. The Measures To Be Used

Introduction to the measuresGuidelines for use

Instruction booklets will again be provided

LCIRLOCHADSFMA (questions 3, 4, 6 and 11)PGI (revisited)

3. Interview Technique (revisited)

Understanding ethical conductUnderstanding confidentialityUnderstanding objectivityUnderstanding impartialityInterview demonstration

by Research Fellow

Practice interviewing techniques Visiting Volunteers

4. Administrative Procedure

Understanding materials the interview package (e.g.,questionnaire, guidelines for

use, return stamped addressed envelope, etc.)

Understanding procedure (e.g., returning questionnaires, contacting Research

Fellow, etc)

How visits are arranged by Research Fellow

How visits are allocated to a volunteer visitor

Being in contacting with Research Fellow at all times!

Interim Feedback DayInterim Feedback Day


Matters Arising

Difficult interviewees

Lost follow-ups

Participants encouraged by seeing visitor!

Theory of Planned Behaviour

Normative Beliefs Intention

Control Beliefs

Behavioural Beliefs

Subjective Norm

Perceived Behavioural

Control

Attitude Toward the Behaviour

Behaviour

Ajzen I (1991). The theory of planned behaviour. Organisational Behaviour and Decision Process 50, 179-211.

Social Cognition ModelsSocial Cognition Models


Normative Beliefs

I will intend to do this

behaviour?

Subjective Norm BehaviourIf I want to comply with the perceived approval of other people/groups I value?

If I value the expected outcomes as being beneficial to me?

If I believe I have the skills and resources required to overcome likely obstacles?



Normative Beliefs

I will intend to do a behaviour?

Subjective Norm Behaviour(Prosthetic Use)

I would like to impress my peers the way this visitor has impressed me?

I would like to be as mobile and independent as this visitor?

I have a prosthesis too and if this visitor can do it then so can I?


Self-efficacy

Bandura A (1986). Social foundations of thought and action: a social cognitive theory. Englewood Cliffs, NJ: Prentice Hall.

Perceived self-efficacy refers to beliefs in one’s capabilities to organise and execute the courses of action required to produce given levels of attainment or manage prospective situations (Bandura, 1986).

Self-efficacy (in Social Cognitive Model)

Self-efficacy Proximal Goals

Impediments

Outcome Expectations

Behaviour

Bandura A (1991). Social cognitive theory of self-regulation. Organizational Behaviour And Human Decision Processes 50, 248-287.

Social Cognition ModelsSocial Cognition Models

Enhancing Self-efficacy

Vicarious Modeling

Somatic /Mood States

Social Persuasion

Mastery Experiences

Self-efficacy

Bandura A (1977). Social learning theory. New York: General Learning Press.

Interpret information from..

..watching others perform the behaviour

..biological and emotional feedback

..being persuaded you can do the behaviour

..practicing the behaviour

Self-efficacy



Interpret information from..

..biological and emotional feedback

..practicing the behaviour

Self-efficacy



..being encouraged by fellow amputees’ verbal support

..watching fellow amputees adapting and coping well

Documents

Involving volunteer visitors in data collection National Centre for Training and Education in Prosthetics and Orthotics University of Strathclyde Glasgow