Family Dynamics and Support Networks

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Family Dynamics and Support Networks

• Margaret Sahhar
• MPS Conference April 2002

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Family Dynamics

• 1. .every significant change in ones life has
  a ripple effect that influences every other part
  of life, including every relationship. Life
  threatening illness is a significant change, one
  that generates many ripples and The experience
  of life-threatening illness is one of the most
  difficult situations that individuals and their
  families ever have to faceit leaves an indelible
  mark on ill individuals, their families and even
  the people who care for them.
• Kenneth Doka (1998) Living with Life-Threatening
  Illness,
• Jossey-Bass Inc San Fransisco CA

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Family Dynamics

• 2. Life threatening illness is inevitably a
  family illness, for the life of everyone in the
  family is changed when one member of a family
  experiences illnessall previous challenges of
  life-dealing with family and friends, coping with
  work and finances, even keeping up with the
  demands of a house - remain an ongoing part of
  that larger struggle.
• Kenneth Doka (1998) page 11

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Family Dynamics

• 3. each family is a collection of individuals.
  Reactions to illness will be affected
  byvariables such as personality, coping
  abilities, age and maturity, gender, relationship
  with the person, intelligence, education, mental
  and physical health, religion and philosophy,
  fears, knowledge and experiences with
  illnessformal and informal supports.
• Therese Rando (1984) Grief, Dying and Death
  Clinical
• Interventions for Caregivers

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Family Dynamics

• 4. Families are all unique, each with its own
  personalityno two families will deal with the
  ongoing problems associated with life-threatening
  illness in the same ways.
• Kenneth Doka (1998) p. 201

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Family Dynamics

• Multiple Roles
• Changing dynamic
• Family Relationships
• each family is individual
• past experience is a factor
• the presence of life threatening illness can
  change relationships with others. The new status,
  the illness role produced by the diagnosis, adds
  uncertainty to every relationship and every other
  role.
• Kenneth Doka (1998) page 135

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Family Dynamics

• Stages
• Prediagnostic Phase
• Diagnosis
• The Long Haul
• The End Phase

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Prediagnostic Phase

• Parental Premonitions
• Professional and Family reactions
• Family Relationships
• Strengths and fragmentation

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Diagnosis

• Confirmation
• Shock and Relief
• Family Reactions
• Changing Roles
• Information Giving
• Siblings and Teenagers
• Implications of Non-disclosure
• Friendly advice and the internet
• The MPS Family
• Reactions of Friends
• Support Networks

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The Long Haul

• Reality of MPS
• Practical Resources
• Siblings
• Friends and Family
• Treatment Considerations
• Future Pregnancies
• Young Adults with MPS

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Death and Dying

• Palliative Care
• Support Networks

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Summary

• What is Helpful
• Accurate Knowledge
• Quality Trusted Medical Care
• Open, Honest Communication
• Support Group Contact
• Flexible Family Structures
• Adequate Community Resources
• Negotiating Roles for Family Members
• A Philosophical or Religious Belief System