Wendy Johnson. MSc. In Practice Development: Pain Management Completed 2006

Definition of pain The agreed definition of pain put forward by the ‘experts’ the IASP in 1994 is: ‘an unpleasant sensory and emotional experience associated with actual or potential tissue damage’ Do we agree with this?

To look at emotional pain specifically relating to psycho-social issues in palliative patients. The Study

‘An approach that improves the quality of life of patients associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’

 Identify whether patients do experience emotional pain.  Identify how emotional pain is related to their psychosocial well-being and whether this is recognised by professionals.  Explore how professionals identify these emotions and deal with this aspect of pain.  Determine if the support received by patients meets their needs.  Identify if there are any educational needs for professionals

Qualitative research – descriptive rather than quantities using in depth interviews Narrative analysis – using the patients story and putting together themes which were then analyzed in relation to the patients own agenda. Finally to offer recommendations for practice

Narratives – as they are known are stories given by an individual to give an insight into their experiences It allows the practitioner/researcher become part of the individuals world – letting them share their story The individuals story is allowed to reported using their own words

Allows the person to regain form and meaning to their lives (Carlick and Biley 2004) Allows life and pain to be freed from its chaos by sequencing events and giving order (Frank 2004) It is the person’s own perception allowing their viewpoint (Kinsella 2005) As nurse we should develop an understanding of individuals experience and their personal truths through stories through stories – rather than the biophysical (Payne 2004)

 3 participants – one male and two female  Age group  Two were seen at home one at centre (patient choice)  Patients were aware they could exit the study at any time  Back-up counselling support offered, but not taken up  Changes made to names and only brief vignette’s given to protect identity

1.Changes in social/family status 2. Patient’s expectations of professionals 3. Attitudes of other’s towards cancer 4. Reaction to diagnosis

Core Theme: Changes in social/family status Storyteller 1– Dianne Stories of a changing life in a “nice family” Dianne – the ‘mother’ of the family. A true matriarch – she had a responsible job as a supervisor over 250 staff in healthcare.

Core Theme: Patients expectations of Professionals Storyteller 2 -Jim ‘ Stethoscopes and Tissues’ Jim – Known as the ‘big guy’ had been an electrician travelling all over the country. Always ready to help family and friends. A discerning man who often spoke in metaphors.

Storyteller 1 Dianne ‘Stories of being distanced’ Dianne – the ‘mother’ of the family. A true matriarch – she had a responsible job as a supervisor over 250 staff in healthcare.

Core Theme: Reaction to diagnosis Storyteller 3 – Mary ‘Stories of the comforter’ Mary – called herself a ‘carer’ and a family person, she was main carer to her husband who had a major stroke, and in the past had cared for her mother and father

 Patient’s when given the opportunity are very willing to share ‘their’ story  Holistic interviews with patients should be on their terms and their agenda  Professionals need to set aside time to discuss these issues  Professionals need to be aware of the impact of their actions/comments

 Emotional pain of living with cancer – issues not new ones, difficult to put into a particular model as they are intertwined  Educational needs. Communication is still a key issue surrounding a cancer diagnosis. These issues can have resounding impact on the patient and family.  Patient’s own story. May be part of the process of re-ordering their life.

 Patients’ needs should be identified using a person centred approach in order that their main concerns can be identified  Professionals should continue to be educated in ‘end of life care’ particularly communication skills in order to elicit this information  Narratives/storytelling should be identified as a tool not only in the research arena, but also in patient assessment  The time and effort needed to develop a therapeutic relationship should be acknowledged as part of nursing activities

The study, though small was rich in textual evidence. It highlighted the emotional needs/pain of those who have a cancer diagnosis. It identified that though we (professionals) acknowledge the total pain model. We may not fully appreciate the impact of ‘living with cancer’ It highlighted that it is not just physical pain eg. Tissue damage that can cause pain. It identified the need for ongoing education and planning in ‘end of life' patient services.

As a researcher the study allowed me to become part of the patients’ world. I became privy to information they had previously not thought I would be interested in, but as the interviews showed, were truly important. Given the time, and their own agenda patient’s are willing to tell you ‘their own story’ about living with cancer.... and I felt privileged that they did.

……………..any questions?