Introducing the PIPP: Using the ICF to develop a new instrument

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Introducing the PIPP  Using the ICF to develop
a new instrument

• RoseAnne Misajon
• Lenore Manderson
• Monash University

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Resilience Project

• REsearch into Social Inclusion, Locomotive
  Impairment and Empowerment through Networking,
  Collaboration and Education
• Interdisciplinary, multi-country study
• Conducted with people living with physical
  impairments in Australia, Thailand, Malaysia.
  Currently being conducted in Laos and Myanmar
• RESILIENCE Team Lenore Manderson ARC Federation
  Fellowship, Elizabeth Bennett, Peter Disler,
  Sari Andajani-Sutjahjo, Julie Pallant, RoseAnne
  Misajon, Siriporn Chirawatkul (Thailand) Zaliha
  Omar (Malaysia)

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Project Aims

• To explore the cultural meanings of disability
  and health, and describe cultural models and
  community understandings of and responses to
  disability
• To analyse the personal, social, economic and
  gender factors that influence adaptation,
  self-perception, social roles and quality of life
• To describe patterns of care and social
  integration of people with disability.

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Recruitment of participants

• A liberal criterion was used to identify
  potential participants with limited mobility
• Included any condition affecting mobility, such
  as
• - limb amputation (eg. Resulting from accident
  or diabetes)
• - spinal cord injury (from accident or stroke)
• - degenerative conditions (arthritis)
• - diseases affecting the central nervous system
  (eg. poliomyelitis or multiple sclerosis).
• Modified cluster sampling method
• AUSTRALIA
• - recruited from 30 general practitioners
  randomly selected in 11 townships in the Central
  Highland Region of Victoria.
• - Each general practitioner was asked to select
  seven people from his or her practice who were 18
  years and older and had a mobility impairment

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Recruitment of Participants

• THAILAND
• 38 villages from urban, peri-urban, rural areas
  randomly selected from Khon Kaen province.
• Village headmen asked to identify individuals who
  had difficulties in walking (pai sai ma sai yak,
  Isaan phrase meaning having difficulty in
  travelling).
• Approx. 7 individuals per village were
  interviewed
• MALAYSIA
• Selangor state on the west coast of Peninsular
  Malaysia.
• Health service areas were divided into urban and
  rural, and 15 communities were then selected
  randomly from each group.
• From each selected health centre located in the
  main town of the selected district, seven people
  18 years and older living with locomotor
  impairment were purposively selected by local
  health centre staff

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Method (Phase 1)

• QUALITATIVE
• - in-depth interviews
• QUANTITATIVE
• - Socio-demographic data
• - Optimism about the future
• - EQ5D (health-related quality of life measure)
• - PIPP

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PIPP Perceived Impact of Problems Profile

• Measures IMPACT and DISTRESS of health on 23
  items across several domains
• Domains informed by ICF (mainly from Activities
  and Participation section)
• Developed to capture the patient-perspective
• Generic health-related measure
• VALIDATION
• Factor analysis separate domains
• - Australia only
• - cultural comparisons
• Using EQ5D
• RASCH
• Cultural differences
• - Differential Item Functioning

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ICF Ch 4 Mobility

• Yes, I think walking down the street, not being
  able to be normal, you know, just to have the use
  of my legs (ID139 female 76yrs)

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ICF Ch 5 Self-Care

• Everything is difficult - going to the toilet is
  difficult somebody having to wipe your bottom is
  difficult (female 67yrs, Australia)

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ICF Ch 7 Interpersonal interactions
relationships

• You know before the injury we were able to go
  for walks and umI could do a lot more with R
  daughter, go to parks and movies. Just little
  things like go to the movies on school
  holidaysumtake nice drives and things like
  that (crying)---------I cant do any of that now
  and I havent been able to do that for three and
  half years and that hurts. it affects
  everything - being a mother - being a wife
  being a partneryou know everything. female
  44yrs, Australia

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ICF Ch 9 Community, social civic life

• Well not, not being able to do specific things
  when I want to do them, I just can stay in
  bed. because what is there to get up for? I
  cant do as much as what I used to. Whether
  you care to admit it or not, you cant get on
  and do the things you want to do and you get
  frustrated and yes you, you do get angry at
  times. female 80yrs, Australia

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Ch 1 Mental Functions (?)

• Well sometimes I really feel, if Im down or if
  something upsets up, I really do think now if
  there was a pill that I could take, I would take
  it (ID76 female 76yrs)
• Well I get depressed easily and some days I get
  up in the morning and think I cant do this, I
  cant keep going female 75yrs, Australia

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Other themes Independence

• when youre 29 you dont want support off other
  people. Do you know what I mean? The last thing
  I expected, I expected to look after my parents.
  My parents are looking after me and all that, you
  know what I mean? , you know, I mean, bang,
  25 years old, or 24 years old and then I had me
  mum washing me in the shower and it makes you
  feel like, its unbelievable, the way it makes
  you feel, you know what I mean? And you thought
  it was going to be you looking after your
  parents, and theyre looking after you again,
  like youre a baby. male 28yrs, Australia
• most of the time when people come and try to
  finish what I am doing because they see Im very
  slow. I think that they should let me walk up the
  stairs, or do my work on my own. If they really
  want to help, then they should just sit back and
  observe from afar, in case I tripped or fall. Or
  wait until I ask for help. What I can do first,
  let me do on my own. If I can't, then I'll ask
  for help male, Malaysia

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• I felt helpless. My wife took 3 months unpaid
  leave from her work (as a teacher) to care for me
  full time. She was the one who carried me to the
  toilet, bathed me, fed me. I was very depressed.
  I used to live an independent life, then suddenly
  I couldnt do anything. I realize its fate, but
  what can I do? I just have to be very patient and
  have faith in God. What can I do... its fate
  male, Malaysia