Health My Way: A personfamily centred rethink of effective selfcare Results of a Qualitative Researc

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Health My Way A person/family centred rethink
of effective self-careResults of a Qualitative
Research Study
18th April 2008
Philip Gandar, Synergia Donna Snell Mangere
Family Doctors Suzie Dale, Barbara
Young Neilsen
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a rethink of effective self care

• People make decisions that affect their health -
  Self care is the reality
• Paradigm shifts compliance, adherence,
  patient self care
• A citizen research project through their
  eyes, their world
• Implications five claims
• Leverage impact at critical change points
  e.g.diagnosis
• Support balanced, relevant, whole person learning
  - to live well with disease
• Mobilise whanau resources to support complex
  behavioural/life style changes
• Increase resiliency of self care, maintenance of
  good practices, reduction of crisis events
• Reduce inequalities in self care

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The research approach

• Commissioned by the Ministry of Health as part of
  the Key Directions
• Literature review
• Primary health team focus groups
• Patient life journey mapping
• Recruitment via 3 primary health practices
• South Auckland, West Auckland, Rotorua.
• 9 focus groups across 3 stages of chronic disease
  progression
• Stratified by NZ European, Maori and Pacific
• 12 in-depth interviews people with diverse range
  of conditions

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Luisas story

• What happened? I call him the boy whose pants
  fell down. He lost 6 kgs in a weekhe had a
  seizure on the way to school, he was semi
  conscious and cold, 32degrees. We went
  immediately to Starship. They were amazing
• It dawned on me at Starship, the enormity of
  what had happened, and now at home, Ive got the
  responsibility. I am it. I manage my son. I lost
  a lot of weight. I had to rewrite our familys
  relationship with food
• I didnt cry. I didnt feel grief...but I tried
  to find out why. I desperately wanted to know
  why. And no one could tell me. So you cant blame
  anyone, you cant get angry. You can drive
  yourself nuts about why youve got it.
• Our life fundamentally changed. It is enormous,
  but manageablewe can only manage it. We talk
  about it
• Hes had angry times. He woke up yesterday and
  said I dont want to do it today. I just walked
  out and left him alone for a bit and gave him an
  alternative time later
• Theres no holiday from it. There are no
  Sundays. There is no downtime. The regime doesnt
  allow it.
• Female,
  European, Mother of 8 year old Type 1 Diabetes

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Making sense of self care

• Person/family centred, ever changing context of
  self care

Structures of self within self care who is
doing it?
How does it work, what are the processes of self
care
Functions, what does self care do
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Making sense of self care
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Making sense of self care
Stage 1 Asymptomatic
Stage 2 Symptomatic
Stage 3 Complications co-morbidities



Structures of self
Self as individual
Me My external self, actions, objective
behaviour
I My subjective identity,values, spirituality
We Inter-subjective belonging, roles, norms,
culture
We-do external interactions as father/mother,
friend, employee
CollectiveSelf-in-relation
Internal, subjectively understood perceived
External, actions behaviour
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Making sense of self care
Stage 1 Asymptomatic
Stage 2 Symptomatic
Stage 3 Complications co-morbidities



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Making sense of self care
Stage 1 Asymptomatic
Stage 2 Symptomatic
Stage 3 Complications co-morbidities



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I work - Self identity

• Impact of illness on Self
• Key aspect of self care is working with self
  identity a powerful effect of illness is the
  inherent need to reconcile the impact of the
  illness with the story of self
• I feel ashamed, yeah especially my friends they
  know that I have diabetes, very ashamed, and I
  dont talk this to them cause I believe they will
  look down on me. That is my point as well, I
  dont want them to know what is happening, I
  think to look at me I am healthy but on the other
  hand I have got this sickness.
  Pacific Male 28
  years Stage 2 Diabetes
• Continuous reframing and adaptation need for
  normality
• Twp options for moving forward To be a
  different self, diminished and disempowered or
  to maintain the same self same identity and
  integrate the illness
• The sense of the finding the same Me self seems
  to be key to achieving internal balance,
  confidence and empowerment
• In control
• A key phrase, used repeatedly, is that people
  need to feel in control Getting in control is a
  stage after coming to terms with the diagnosis
• People speak of struggling to resolve or change
  or stabilise their condition, but now its under
  control
• At first I really thought wow, weve got to
  manage this as best as we cannow I think weve
  got it under control
• Maori Male 60 Triple bypass
• Now its all under control cos I take my pills
  and I go for my walks and I do what he says to do

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We work

• Our self identity and sense of worth is
  referenced to the people that surround us,
  especially our families
• People gain meaning and relevance from their
  roles and relationships, their place in social
  networks and their cultures
• People feel undermined in their roles as head of
  the waka, provider, caregiver, parent, on the
  marae, with mates
• Enrolling families, particularly partners,
  appears to be the most successful self care model
  and improves outcomes
• Their active involvement, supports and helps to
  normalise the condition back into the family
  identity
• My partner has diabetes and other
  complicationsso we've been living with his
  condition for quite a long time. When we go out
  to dinner and were thinking about will he be
  able to have dessert and whats going to be there
  to eat?...Grocery shoppingIve had to cut out
  all of the white bread, chocolate biscuits and
  chippies in the house so he doesnt have themI
  do worry quite lotif hes got colour, if he is
  tiredjust making sure he stays well
• Female 50yrs, caring for partner

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Illness work

• Medications/Condition requirements
• Oddly, given our concern over compliance, the
  easiest work, is illness work
• Most people recognise the value of taking pills,
  and relative to changing life habits, this is
  easy
• Dynamics that drive success in this work stream
  include
• Perceived seriousness of condition
• Acceptance of condition
• I dont mind taking my pills now. I tried not
  taking them once and I collapsed. I was always
  healthy and taking pills wasnt my thing. I was
  into sport. It just blew me apartBut now I am
  great. I have come to terms with it. I take it
  because I have to take it
• Female
  Maori 30yrs Stage Two Diabetes
• The ability to maintain routines often people
  manage their routines until the weekend, or on
  holiday
• Complexity in medication regimes at deteriorating
  stages, adds difficulty
• Enrolment of partners/family important key to
  success in illness

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Lifestyle work

• One of the hardest parts of integrating the
  illness/condition into their lives, is the
  changes generally required in lifestyle
• Lifestyle is intimately linked with role and
  place within family and social networks
• Patterns of eating, sharing food and drink,
  smoking, are all integral processes in social
  bonding
• Making changes to these patterns are overt
  challenges to the social roles and individuals
  self identity
• People start and stop true behavioural change
  is hard
• Changing habits in isolation from social
  structures is very difficult (independence,
  avoidance or concealment strategies)
• Planning for changes in routines
• Home is easy, having visitors is hard
• Well it is quite easy to manage to a point. When
  its just me and Mum at home its easy. But when
  you get visitors and that coming in youve got
  to be real hard on yourself to manage what you
  are eating and doing and drinkingAlthough for
  about a year Ive stopped eating and drinking and
  smokingbut eating in moderation is quite hard
  when you want to eat something.

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The tension between values of each stream

• The conflict between the various components of
  self identity
• between I and I with illness
• between I with illness and we roles in
  families and culture
• between I and taking medications I am sick
• between I and living the life I used to lead
• There is inherent tension in prioritising values
• How to resolve my role as a mother over my need
  to rest
• My role as a social drinking mate over my need
  to not drink
• My shared church meal over my need to be a good
  patient
• It appears that only when these conflicts are
  resolved can people truly imbed changes and
  become whole again
• Critically, this is most effective when people
  find justification for valuing their illness
  and lifestyle work as key parts to their future
  their I We story

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Stories from the field Donna Snell
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Mr FA 53yr Old Samoan Self care - context

• 2006\07 Hba1c 10 lt,gt, BP N, Microalbuminuria
  N, Retinal screen mod. with macular lasered,
  comes in on own.
• June 2003 Hba1c 11.5 , BP N,
  Microalbuminuria N, Retinal scr. moderate
  damage, wife comes with him but he is speaking
  for himself.
• Diag. 1997, Hba1c 9.4 , BP N,
  Microalbuminuria N, Retinal screen moderate
  damage, always comes in with wife, ? language
  barrier.

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Self Care-structure
LIFESTYLE

• 2006\07 Hba1c 10 lt,gt, BP N, Microalbuminuria
  N, Retinal screen mod. with macular lasered,
  comes in on own.
• June 2003 Hba1c 11.5 , BP N,
  Microalbuminuria N, Retinal scr. moderate
  damage, wife comes with him but he is speaking
  for himself.
• Diag. 1997, Hba1c 9.4 , BP N,
  Microalbuminuria N, Retinal screen moderate
  damage, always comes in with wife, ? language
  barrier.

Illness
We
I
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Different patterns of response
LIFESTYLE

• 2006\07 Hba1c 10 lt,gt, BP N, Microalbuminuria
  N, Retinal screen mod. with macular lasered,
  comes in on own.
• June 2003 Hba1c 11.5 , BP N,
  Microalbuminuria N, Retinal scr. moderate
  damage, wife comes with him but he is speaking
  for himself.
• Diag. 1997, Hba1c 9.4 , BP N,
  Microalbuminuria N, Retinal screen moderate
  damage, always comes in with wife, ? language
  barrier.

Confused Vulnerable
Illness
Struggler
We
I
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Mr. PV 35 yr old Cook Islander-context

• Leader Cook Is community, motivated, concerned
  for community, wants to reach out into wider
  community with diab. CVD ed.
• Feb 2008 NSTEMI, triple bypass, enrolled diab.
  program 9\07, first met 3\08 1 yr after diag.
  diab. 1\12 post NSTEMI, bypass
• Diag Diab. 3\07, known hypertensive, seen many
  times for both, well medicated for hypertension.

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Self care-context, structure, function
Expert
Lifestyle

• Leader Cook Is community, motivated, concerned
  for community, wants to reach out into wider
  community with diab. CVD ed.
• Feb 2008 NSTEMI, triple bypass, enrolled diab.
  program 9\07, first met 3\08 1 yr after diag.
  diab. 1\12 post NSTEMI, bypass
• Diag Diab. 3\07, known hypertensive, seen many
  times for both, well medicated for hypertension.

Team Player
Illness
We
Confused\ vulnerable
I
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Mrs. HT 63 yr old Maori

• Started more intensive monitoring cbg insulin
  doses via phone, Brief Intervention diet,
  exercise, ideas to remember meds, daughter
  diagnosed.
• July 2006 Hba1c dipped 8.5 , now 10 ,
  commenced insulin. BP leveled, microalbuminuria
  N, retinal scr. mild DR, misses some doses meds
  each week, erratic meal times, no exercise.
• Diag. . 2000, Hba1c 10 , Hypertension treated,
  microalbuminuria N, no retinopathy.

intuitive
Lifestyle
Illness
complacent
We
I
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Conclusions implications
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Context Implications

• Across the continuum
• The point of diagnosis is a critical life change
  event should be used as the leverage point to
  develop self care
• While many self care behaviours are the same
  across the continuum the perceived context is not
• Self care of chronic conditions is dynamic, ever
  changing and never fully mastered

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Implications structure of self in self care

• Self care involves all aspects of the whole
  person
• Patient self management is a health fiction
  does not exist in reality
• Health My Way means self responsibility, self
  authorship of wellbeing while living with chronic
  disease

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Implications functions of self care

• Distinct streams of self care work aligned to
  the aspects of broader self will mean
• intrinsic purpose, function and challenges to
  each stream with interdependencies and tensions
  between them
• centrality of individual/family processes,
  supported by a partnership with doctor, the
  Donna, and others
• Health My Way a uniquely constructed mix of
  work across streams, a lived experience by each
  person their family
• What looks like lack of motivation or
  non-adherence may be a rational choice, a lower
  priority to an aspect of illness work
• What integrates self care work is a Health My
  Way Story, a cross stream narrative rather than
  an illness work care plan

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Implications of the processes of self care

• Distinguishable stages of acceptance, learning,
  adoption, resiliency development
• Sequences to progress within and across the
  streams of self care work starting with - I
  work
• Opportunities
• Strengths based self care plans Health My Way
• Skill-building with family
• Leading to deeper dialogue within family on
  harder lifestyle issues
• Segmentation from patterns of response
• Suggestive of why standardised programmes may
  fail
• Potential to differentiate support to suit common
  patterns of response
• Tune the people/process/information environment
  to improve individual and population outcomes

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a rethink of effective self care

• Health my way
• Whole person/family
• Balanced
• Learning based
• Supported by professional guides and learning
  support
• Implications five claims
• Leverage impact at critical change points e.g.
  diagnosis
• Support balanced, relevant, whole person learning
  - to live well with disease
• Mobilise whanau resources to support complex
  behavioural/life style changes
• Increase resiliency of self care, maintenance of
  good practices, reduction of crisis events
• Reduce inequalities in self care

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With thanks

• In appreciation of the support from
• Dr Janine Bycoft
• Dr Gary Sinclair the staff of the Mangere
  Family Practice
• Dr Lannes Johnson Healthwest PHO and the Westview
  Clinic
• Rotorua PHO
• Thanks to the participants who gave so freely of
  their views and experiences