LA NEUROIMAGEN FUNCIONAL EN PACIENTES BIPOLARES

I am currently interviewing families recruited through chronic pain support groups, affected by parental chronic pain, in order to find out how they are affected by chronic pain and where the differences lie in the way they are affected individually. I am hoping to gain better insight into each family member’s experience of life with chronic pain, how they cope and how they

feel they are communicating about issues as a family. I am asking how they would describe their experiences in a picture and whether they can think of any metaphors, symbols or analogies to illustrate their understanding of chronic pain. I am enquiring what shades and colours best portray the intensity of their experiences as this will help me to translate these into photographic images. I am looking for descriptive pictures with plenty of detail of the participants and what these mean to the individuals. I invite participants to talk about anything they feel is relevant to their life with their understanding and their knowledge of chronic pain with the aim of providing the participants with a platform to voice what they have probably never been asked previously. The more detailed information I can obtain from the families, the more I can build up a picture of what life is like for them and the easier it will be to translate these complex experiences into images.

5.1Interview Parameters

The interviews are taking place in the participant’s home and each family member is interviewed separately to ensure each member can speak freely and openly without the worry of upsetting other family members.

The inclusion criteria for participants were originally families with parental chronic pain with children 12 years or older living at home. This has been adjusted to allow families with children no longer living at home to take part through lack of participants. There is counselling available for all participants, should they feel they need to speak to someone professional after the interview took place. The counselling is offered by Nicola Wilson, Senior Lecturer and Programme Leader for CBT and Psychological Interventions at the University of Cumbria at a location convenient for the participants or via Skype. All participants have been given participant information sheets prior to the interview and each participant needs to sign a consent form before the interview can take place. Children below the age of 18 sign an assent form which is counter-signed by a parent.

The interviews are voice recorded and transcribed verbatim after each family has been interviewed. All data is handled confidentially and all names of participants have been changed to protect their identity. Each interview lasts between 60 to 90 minutes. I also make a few handwritten notes during the interview and straight after the interview whilst the experience is still fresh in my mind. I note down anything I feel is important and what I would not be able to extract from the interview transcription such as body language, eye contact etc. The transcriptions are analysed once all interviews are completed alongside the picture making process.

The interviews are semi-structured to allow the participants to tell their story but are asked a few guiding questions which will help me establish how each person feels about the pain, about their role within the family unit, how they feel about themselves and how they feel the illness has changed them and the family dynamics, but allowing for questions to develop fluidly to suit each interviewee.

5.2 Initial Outcome

The participating patients have been very matter of fact about their abilities and disabilities and how their life has changed over the course of their illness. They seem to feel their communication skills with their immediate family are very good and they thought they were open and honest about their emotional and physical problems. I also found the patients seemed prepared for what they wanted to tell me, their answers were almost pre-fabricated whereas the adult-children were much more emotional and stated that they did not quite know how and what to say as nobody had ever asked them before. They also felt that communication was quite poor and that they often did not get the chance to share how they feel and cope with the family situation. Although they repeatedly said they were very close to

their parent in pain and they would do anything in their power to alleviate some of that pain even for a very short while, they felt they needed an outlet for their emotions and did not really get the opportunity to talk to their parents. They felt that their problems in comparison to their chronically ill parent were minimal and therefore disregarded their need to voice their complex emotions.

It seemed to me that the hardest part of being a child-carer (even as an adult) is the responsibility they feel towards their parent. They find themselves in a reversed role situation, where they are looking after the parent often from an early age rather than the parent looking after them. Consequently, they have to grow up at lightning speed in order to fulfil that role (Aldridge, J.; Becker, S., 1999).

But does this role become any easier once the children reach adulthood? What implication does this have on their adult life and their own relationships? On their work and social life? How do they cope with guilt for wanting their own life? These questions deserve further exploration in a second study.

The adult-children I have been speaking to so far reported that at no stage of their parent’s illness they have been offered counselling or family therapy in order to deal with their family’s illness situation, no provisions have been made whilst they were still at school and their well parent had to work full time to provide for the family. They had to adjust to the situation the best they could and now as adults they still try to do just that. They haven’t given up on their responsibilities they took on when their parent fell first ill; they still look after their parent daily, although some have left home. They choose not to go on holiday because they feel they cannot leave their well parent to look after the ill parent on their own. They feel guilty if they enjoy themselves too much.

The wife of one of the patients, I call her Anne, feels angry and frustrated about the system that is in place to help families trying to adjust and cope with their new life-long situation. She explained how difficult life has been since her husband was suffering from chronic pain after a car accident and how often she considered leaving him. Not only had she taken on the full responsibility of providing for the family but she and her children had to cope with the strain of living with a husband and father who was angry and depressed and trapped in a “black hole” with no way out. She described her husband to have been aggressive and angry all the time, frequently shouting and ‘biting her head off’ for no apparent reason. He turned to drink to ease the pain as well as to numb the feeling of having lost the life he knew. Anne is angered that there is no support out there for families, nobody who gives families a helping hand, some tools to deal with the difficult times ahead. Nobody who explains what she can most likely expect from the progression of her husband’s illness and how to cope. During an assessment of her husband’s condition, years after the onset of his problems, a doctor asked Anne how she was feeling and coping with the situation. Being considered by this medical professional triggered a well of tears and made Anne aware of just how badly she had been managing.