Title: Relocation, relocationlearning through reflection Caroline Humphreys RGN Elaine Marriott RGN RSCN Po
1Relocation, 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
23.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