Relocation, relocationlearning through reflection Caroline Humphreys RGN Elaine Marriott RGN RSCN Po

1
Relocation, relocationlearning through
reflectionCaroline Humphreys RGN Elaine
Marriott RGN RSCN Polly Tarrant RGN

• Background Seven Mucopolysaccharidosis (MPS)
  Type II patients were recruited into this Phase
  II/III, Randomised, Double-Blind, Placebo
  Controlled Clinical Study Evaluating the Safety
  and Efficacy of Weekly and Every Other Week
  Dosing Regimens of Iduronate-2-Sulfatase Enzyme
  Replacement Therapy. Five patients were
  relocated from Italy, France and South Africa,
  their age ranged from eight through to
  twenty-six years old, and all had varying degrees
  of their Hunter symptoms. The study was submitted
  to the December 2003 Scientific Advisory Board
  and the all seven patients began their weekly
  infusions by mid January 2004. The study was due
  to last for a year, however an extension study
  was commenced in January 2005, evaluating the
  long-term safety and clinical outcomes of
  patients on this replacement therapy. This lasted
  just over two years with six of the initial seven
  patients taking part, one of the relocated
  patient died whilst on trial during this period.

Johns Model of Reflective Practice Based on
Hegelian dialectic, a robust model which
facilitates analysis of experience by supporting
an understanding of the contradictory parts of
that experience and developing more effective
practice as a result. 1. Aesthetics
2. Personal
3. Ethics
4. Empirics
5. Reflexivity What
was I trying to achieve? How did I feel?
How did my actions
match What knowledge did or should
What alternative actions were What were the
consequences Influencing
internal factors my beliefs?
have informed me?
there, with what
consequences? of my actions?
Influencing
external factors How do I feel now? How do
I know how people felt? How can we
improve practice? How has this
changed our way of thinking?

1.Aesthetics-Themes identified Team discussion
identified key issues which had emerged during
the years of the study. Those presenting
unprecedented challenges coloured red
Participant feelings These were expressed by
study participants and their families throughout
the course of the study, in conversation with
both nurses and interpreters Hope Altruism Common
bond of experience Friction between relocated
families Pressure Isolation Stress No
support network Life suspended Transitional
difficulties Divided loyalties (home v abroad)
Timeline for setup Training Information/communicat
ion as multicentre study infusion
site Clinical portacaths difficult weekly
cannulation Relocation resources Accommodation-
TV, food NI number, travel/flights,
Holistic care Meeting family /sibling
needs Cultural/social isolation Advocacy Language
barriers New disease area Medical
cover Rapport,empathy Learning experience Teamwork

Practical
Psychological
2
3.Ethics Where do our professional boundaries
lie? Personal boundaries - how far to go? Group
vulnerability through disease process Personal v
professional issues in providing holistic care to
family Did complacency associated with repetitive
weekly visits diminish our focus?
2.Personal Feelings Frustration, disappointment,
excitement, hope, loss, failure, sadness,
satisfaction, conflict Factors Goalposts moving-
whose benefit? participant/ doctor Transitional
difficulties end of study Dealing with
death Reciprocal expectations Lack of consistency
of trials coordinator
4.Empirical Code of conduct Cultural
awareness Respect Clarification of
roles Advocacy Accountability Experience or
lack of?

• 5.Reflexivity implications for practice
• Difficulty in knowing and observing professional
  and personal boundaries -open forums for
  exploration and discussion of issues arising,
  both practical and emotional. Refer back to Code
  of Conduct
• Feeling of having to be all things to all
  people - Acknowledge limitations work within
  role boundaries - Identify external resources
  and delegate extended role social services,
  MPS society
• Lack of continuity of responsibilities need
  firm, written agreement at outset regarding
  expectations and areas of responsibility,
  authority and accountability
• Anticipation of cannulation difficulties on an
  ongoing basis due to nature of the disease and
  client group - stronger, earlier and robust
  advocacy for portacath insertion where
  appropriate
• Making assumptions about participant staff
  experience over long period of study - strong
  clinical leadership to maintain awareness, focus,
  skills
• No experience of this type of study or disease
  area not knowing what questions to ask -sharing
  of knowledge, experience and concerns, use of a
  competency framework to support staff and ensure
  expert practice
• Lack of clarity of overlap between research and
  NHS treatment for research participants from
  abroad with different cultural expectations of
  health care need to identify the issue and
  discuss with hospital management, sponsor and PI
  in advance of study onset

References Johns, C. (1995) Framing earning
through reflection within Carpers fundamental
ways of knowing in nursing. Journal of Advanced
Nursing, 22226-234 Grech, E. (2004) Hegels
Dialectic and Reflective Practice a short
essay. International Journal of Psychosocial
Rehabilitation, 8, 71-73