People who do not use existing postMI resources: How might the system of postMI support be improved

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People who do not use existing post-MI
resources How might the system of post-MI
support be improved to help more people care for
their heart instead of voting with their feet?

• Angela Jackson
• (PhD student)
• Research Unit in Health Behaviour and Change
• School of Medicine, The University of Edinburgh.

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• Study rationale design
• Findings
• From the perspective of post-MI people family /
  friends
• Why do people not use post-MI resources?
• Deficits and difficulties
• Implications
• How might post-MI rehabilitation support be
  improved?

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Abbreviations

• CHD Coronary heart disease
• MI Myocardial infarction / heart attack
• CR Cardiac Rehabilitation services
• CHD groups CHD self-help groups

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Rationale

• Burden of CHD
• Number of people having MI
• 2004 - UK approx 1.5m men, 1.6m women MI /
  angina diagnosis
• High mortality of post-MI people / CHD diagnosis
• High rate of morbidity
• CHD Secondary prevention challenges
• Difficulty making maintaining lifestyle
  behaviour changes
• Policy aim increase self-management of chronic
  conditions
• Unmet needs post-MI people supporters /
  carers
• CR CHD groups
• Evidence of benefit / potential benefit
• Minority of post-MI people participate
• Personal experience underutilised CHD group

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• Aim
• To identify the experiences, support needs, and
  preferences relating to rehabilitation and living
  with CHD as a chronic condition, of people who
  have not used CR or CHD groups following
  myocardial infarction.

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Key research questions

• What is the experience of people who do not use
  CR or attend cardiac groups in recovering after
  their heart attack, and living with and
  managing their condition?
• What are the reasons for non-participation /
  non-use of the existing services / resources?
• How do key family members / significant others
  view the post-MI experiences and support of the
  person who had the heart attack, and how are
  these similar / different to those of the post-MI
  person?
• If there are unmet needs, how could these be
  addressed in ways appropriate to their
  circumstances and preferences?

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Study Design

• Qualitative study
• Lothian region, Scotland
• Non-participants - a harder to reach group?
• Stage 1 Screening questionnaire
• Lothian patients discharged following MI
• Overall response rate 48
• Stage 2 In-depth interviews
• Sample of maximum variety 44 people
• 27 post-MI people 17 family members / friends

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Why do people not use CR and or Cardiac groups?

• From the perspective of post-MI people their
  lay supporters (family / friends)
• 3 key factors which influence an individuals
  resource-use inclinations

Beliefs, values attitudes
Identity
Lifeworld circumstances
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• Each factor may encourage / discourage
  resource-use.. depending on the individual
• Each factor is itself influenced by factors
  relating to
• The post-MI person and their social network
• Health services and health professionals
• Wider social factors

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Beliefs, values attitudes

• CHD / MI
• Eligibility / Candidacy
• Physical impacts
• Mental, emotional cognitive impacts
• Severity of MI Seriousness of CHD
• Life roles responsibilities
• Helpseeking v self-reliance
• Specific resources
• Health beneficial / not
• Wider life benefits
• Group-based resources
• Practical / logistical issues
• Acceptability of help from social network

• Health
• Seeing oneself as healthy despite health problems
• Health as functionality
• Health as fitness
• Appearance of Health
• Pre-MI health / ill health
• Comparisons with others
• Factors that maintain / cause health / ill health
• Lifestyle
• Heredity
• Mental emotional distress
• Unknown cause

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Identity

• Age
• Gender
• Health healthy / impaired / survivor
• Lifestyle healthy livers, hedonists /
  reformed hedonists / lapsers
• Employment / non-employment / retirement
• Home family roles
• Self-reliance autonomy
• Group person v individualist
• Good patient / responsible citizen
• Info seeker v reticence
• Stress-prone

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Lifeworld circumstances

• Relationships with family / friends / other
  social network members
• Roles relationships in the home family
• Organisation of the home environment
• Employment / non-employment / retirement
• Social recreational life
• Finances
• Travel transport

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Deficits and difficulties in the post-MI
periodWhere the system is currently failing to
meet need

• 1. Existing resources inaccessible /
  inappropriate / unattractive
• Non-invitation / non-information /
  non-endorsement - CR CHD Groups
• Barriers deterrents to CR CHD Groups
  inflexible format financial physical image
  scheduling location employer attitudes.
• Non access to existing generic emotional, mental
  cognitive health support treatment
• Home assistance aids not systematically offered /
  information provided

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• 2. Gaps / deficits
• Lack of holistic post-MI follow-up support
  early later periods
• Inadequate information for rehabilitation
  post-MI people family / carers
• Social / vocational rehabilitation support /
  signposting
• Emotional support for carers CHD-specific /
  signposting to generic resources
• Support to family / carers with health behaviour
  changes
• Pre-MI risk factor awareness screening
• 3. Issues to address
• Employer failure to support re-integration /
  rehabilitation at work
• In-patient care (information, discharge
  procedure, continuity of care, hygiene, food)

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Example Post-MI person

• Ray, male, 50, married
• Post-CR follow-up strictly clinical
• Mental / emotional health issues overlooked
• Employer failure to fulfil graduated return to
  work agreement
• Advice coaching adjustment to retirement /
  reconstructing a meaningful life
• Non-endorsement / non-encouragement for CHD Group
• AJ Was there.. was there any advice.. as part
  of the rehab for people who worked.. finishing
  work.. kind of.. 'These are places that you can
  go who might be able to support you when you're
  looking at other opportunities..?
• R No.. not really.. No, it was just your..
  Get the rehab done.. Up to you.. Give you a
  certificate It's probably.. they've not got the
  time and the resource for that, have they?

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• Teresa, Rays wife, 50s
• Lack of advice information about how to support
  the person post-discharge
• Lack of referral for cognitive problems
• Lack of emotional support
• Lack of information about where to seek help
  (non-clinical)
• T Well, I mean, me and my daughter, Jenny,
  who's still at home.. We do find it quite hard
  to deal with because we don't know what to do..
  But I dont have anybody that I can contact and
  say, Look, this is happening, I think we might
  need a bit of help, or I think Ray might need a
  bit of support. You know? Is there anything
  that I can do?... So you just think, Ive had
  enough and I cant cope with this anymore..

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• Current situation
• Post-MI journey uncertain for all
• Individual faced by alternative pathways..
• Influenced by own beliefs, values, attitudes
  lifeworld circumstances identity..

• Whether these factors encourage / discourage
  post-MI resource use depends partly on health
  services..
• Certain routes barred to some people
• Certain routes appear unattractive /
  inappropriate
• Support en route patchy / limited
• Signposting unclear / absent
• Co-pilots (helpers) discouraged
• Lack of check-points en route

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How might post-MI support be improved?

• Informed Decisions
• Automatic referral to CR universal
  information about CHD Groups / wider resources
• Tailored information (post-MI people) format
  options
• Family / carers - pre-discharge information
  advice on supporting / managing recovery
  available support resources
• Tailoring to individual needs
• Tailored CR variety of available formats /
  modular approach
• Access to appropriate support
• Cognitive assessment referral hospital /
  primary care
• Mental and emotional support formal / informal
  options
• Social / vocational rehabilitation support
• Family / carers included in follow-up
• Family / carers lifestyle behaviour-change
  support
• Follow-up
• Holistic follow-up during 1st post-MI year
  (include non-clinical aspects primary-secondary
  care link)

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Better integration of CHD support will facilitate
and make these improvements effective..

• Stopping people falling through gaps in the
  system
• Better able to cater for multidimensional
  individual needs
• Acknowledging valuing roles of different
  service / resource providers (secondary care,
  primary care, voluntary sector / community
  organisations, social services)
• Acknowledging supporting role of family /
  supporters / carers

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Acknowledgements

• The study participants
• Funders
• PhD Scholarship - College of Medicine, The
  University of Edinburgh.
• Scientific Foundation Board, Royal College of
  General Practitioners (UK.)
• Small Grant Fund, The University of Edinburgh.
• Supervisors
• Dr Susan Gregory
• Dr Brian McKinstry
• Professor Amanda Amos
• (The University of Edinburgh)