PRACTICE DEVELOPMENT doi: 10.1111/nicc.12108
Report on Third International Intensive Aftercare Conference in Norrköping, Sweden Christina Jones, Carl Bäckman, Ingrid Egerod, Peter Gibb, Peter Nydahl and Sissel Storli ABSTRACT The third international conference on intensive care unit (ICU) diaries and intensive aftercare took place in Norrköping, Sweden, on 28 November 2013. The conference was organized by Carl Bäckman and colleagues, Vrinnevi Hospital and NOFI, and represented by Sissell Storli. More than 100 clinicians from across Europe and the USA attended the conference. Key words: Childhood bereavement • ICU diaries • Patient experience • Patient support group • Rehabilitation
The third international conference on intensive care unit (ICU) diaries and intensive aftercare took place in Norrköping, Sweden, on 28 November 2013. The conference was organized by Carl Bäckman and colleagues, Vrinnevi Hospital and NOFI, and represented by Sissell Storli. More than 100 clinicians from across Europe and the USA attended the conference. Carl Bäckman introduced in the conference and remembered that the interdisciplinary goal in the 1970s for the ICU was that ventilated patients should not remember their experiences during critical care. This goal has changed completely during the past 20 years. What can be done to improve the care and aftercare of critically ill patients? The opening presentation was given by Christina Jones on setting up inpatient rehabilitation for recovering critical care patients with very complex needs. She emphasized that patients recovering from critical illness can have complex rehabilitation needs requiring physical, psychological and cognitive expertise (Jones 2013). In addition to the problems of rebuilding muscle loss during the illness, some patients develop a critical illness polyneuropathy, which requires intensive physiotherapy to allow them to return to their normal functioning. Psychological problems such as Authors: Ward 4E, Whiston Hospital, Prescot, UK; Intensive Care Unit, Vrinnevi Hospital, Norrköping, Sweden; Trauma Centre, University Hospital of Copenhagen, Copenhagen, Denmark; ICUsteps, Milton Keynes, UK; University Hospital of Schleswig-Holstein, Schleswig-Holstein, Germany; Department of Health and Care Sciences, Tromsø University Hospital, Tromsoe, Norway Address for correspondence: Dr C Jones, 15 Grove Park Avenue, Rhyl LL18 3RG, UK E-mail: [email protected]
© 2014 British Association of Critical Care Nurses • Vol 20 No 5
severe anxiety, depression or post-traumatic stress disorder (PTSD) may be an issue for a significant percentage of recovering ICU patients and cognitive deficits due to head injury or critical illness can make returning to their normal life difficult. For a percentage of ICU patients, a combination of these problems makes the rehabilitation process prolonged and complex. In the Cheshire and Mersey areas of the UK, a decision was made to set up a rehabilitation network to establish inpatient rehabilitation services. There patients are able to receive intensive physiotherapy 7 days a week, have psychological treatment through a clinical psychologist and/or cognitive rehabilitation, speech and language therapy or assessment by an occupational therapist. For the ICU at Whiston Hospital, this has meant that eight patients with complex rehabilitation needs, for example, critical illness polyneuropathy following adult respiratory distress syndrome requiring extracorporeal membrane oxygenation treatment, have been transferred to the inpatient rehabilitation unit at the sister hospital, St. Helens since the unit opened in January 2013, all with very good outcomes. Prior to the rehabilitation unit being opened, they would not have received the intensive therapy they needed. Ingrid Egerod spoke about the development of ICU diaries in Scandinavia (Egerod et al., 2011). During the 1980s, nurses felt emancipated from the hierarchical hospital structure and developed their own approaches to patient care. Their empathy and care led to the idea of a diary that is written for ICU patients and their families to improve their understanding. She emphasized that there are different basic ideas among the Scandinavian countries. In Denmark, the diary is used to show empathy to the patient. Norwegian nurses 271
Aftercare Conference
write diaries with an existential approach and as an act of caring. Swedish nurses see the diary as a part of therapeutic practice. Today, 42% of Danish, 75% of Swedish and 44% of Norwegian ICUs have implemented ICU diaries in daily care. Peter Nydahl introduced the international diary network, which was founded in early 2012. The network is virtually based on www.icu-diary.org and offers general information about ICU diaries, a literature list, a newsletter and examples of different diaries or other helps for starting diaries. The aim of the network is to offer literature help for implementation and coordination of projects. Today, more than 110 clinicians have participated from across the world. Most members are nurses, but physicians, psychologists, priests, former patients and others have also joined the network. ICU diaries are increasingly becoming a part of a holistic rehabilitation approach. During the implementation of diaries, different countries seem to have different challenges, e.g. bureaucratic barriers in German-speaking countries or juridical barriers in Northern America. Nevertheless, the network enables cooperation and can be a base for studies. The results of a first network study within three countries about the time nurses need to write an ICU diary were presented (Nydahl et al., 2013). Future ideas to fill knowledge gaps according to the diary were discussed, e.g. diaries for children, comparison of different barriers, the impact of diaries on delirious patients or in the setting of palliative care. After the lunch break, Peter Gibb started the afternoon session. He described his journey from a care recipient to a care provider. He pointed out that patients have a history before their ICU admission and introduced his journey, starting as a usual child, marriage and work until his mountain bike accident and consequent admission to ICU. After waking up in the ICU, he could not remember why he was in the hospital. He pointed out that despite the delusional memories, delirium and often believing at the time that the health care staff were trying to harm or even kill them, patients are left with a sense of immense gratitude for the work done by ICU professionals in saving their lives. But at the point where they are no longer sick enough to need a critical care bed, they are discharged to general wards where it seems that no one understands how sick they have been and that there still are ongoing issues they face. Although their lives are saved in the ICU, their recovery is far from complete and needs planned, coordinated rehabilitation and aftercare to complete the work started in the ICU to return them to a normal life. Although the reasons for critical illness admission can be very different, the experience for patients and their relatives has many common themes that leave a legacy of physical, 272
cognitive and psychological problems, which can be difficult to deal with and overcome. The dispersal of ICU patients across many general wards on ICU discharge means that they are unlikely to ever meet another recovering ICU patient. This isolation from other people who are experiencing the same things means that each patient has to find his or her own way to cope with the sequelae of critical illness, often believing that he or she must be the only person ever to have experienced it or that he or she is going mad. Peter felt that overcoming such a traumatic health experience, facing your own mortality, leaves many ICU survivors with a changed outlook on life. A common desire to act on this new perspective and to repay the debt of gratitude they owe to those who have saved them makes ICU patients ideal candidates to become care providers. This was how ICUsteps came into being when Mo Peskett, the senior sister who ran the ICU follow-up clinic, brought patients and relatives together and started them on a path to find a way to help other ICU patients and their relatives (Peskett and Gibb, 2009). Since 2005, the drop-in meetings have given a place for more recent patients to come and meet other people who are further down the recovery journey to help them realize that they are not alone in what they feel and think and that more often than not, what they have experienced is normal for someone who had been through critical care. Peter felt that this step of transforming from a care recipient to a care provider is a rewarding one, and in itself a final step in bringing patients back to being a normal person again. Anders Bergquist, who had been a patient in the ICU in Norrköping, told his experience by using the photographs from his ICU diary to take the audience through his journey. He had little memory for the first 7 days of his ICU stay, actually feeling well while on the ventilator but frustrated with being unable to communicate. He spoke about the fears he had and how his family gave him the motivation to get off the ventilator and then to get his health back. He emphasized how important it was for him to have all his family and friends visiting. He then explained how he put the puzzle of his illness together with the help of an ICU diary given to him during his recovery. By going through the ICU diary, he first realized how ill he had been, the pictures especially showing his swollen face led him to realize his situation. His emotional and moving lecture ended with a photograph of a very special anniversary: exactly 1 year (±1 h) after he was weaned of the ventilator, his third child was born; complete rehabilitation! He felt that he had been privileged to be © 2014 British Association of Critical Care Nurses
Aftercare Conference
a part of an ICU follow-up group, meeting with other ICU patients and sharing all their different stories, what it meant for him and a reflection of what it meant to all their wives who also participated in this group. After a coffee break, Lena Liedholm, psychologist, and Lars Widén, social counsellor, reported their work in the Children’s Trauma Team at Vrinnevi Hospital, Norrköping, Sweden. The team provides support for families with children and adolescents traumatized by sudden death in families due to acute disease, accident, suicide or homicide. In some cases, the children were directly affected and psychologically traumatized as witnesses. The other assignments are to provide support when a parent is fighting a severe illness or injury and in cases where a child has been affected by other potentially traumatizing situations. The experience of the team is that immediate support helps children deal with trauma and grief and that acute trauma intervention helps reduce the risk for high psychic distress, complicated grief reactions or PTSD. The underpinning of the support is psychological first aid (PFA), an evidence-informed approach to help in the immediate aftermath of disaster and terrorism. It is designed to reduce the initial stress caused by traumatic events and to foster short- and long-term adaptive functioning and coping. The acute support is offered through various avenues, e.g. house calls, attending and managing a private farewell to the deceased, individual or family sessions with focus on facts about the traumatic loss, practical arrangements in the first few days or weeks, as well as reactions and management of related thoughts and feelings.
After the acute interventions during the first day(s), the team offers extended support as long as the family feels the need. It can focus on preparations for the burial ceremony, and school-related matters, and most commonly the ongoing management of grief and bereavement. The immediate support consists mainly of helping the family to be fully informed of the situation. During information sharing, it is especially important that the closest family members are gathered and get the same information at the same time. There are often very strong reactions and support is provided acknowledging the normal reactions to the severe situation by providing strategies on how to manage them. Research has suggested that later distressing reactions can be avoided or mitigated by reducing the focus on the emotional reactions during the initial hours after a critical traumatic event, and instead focusing on facts and practical matters. The extent of the ongoing support varies depending on the needs and requests of the family, from only one meeting on the very first day to many years of contact in different ways and with a different focus. During the first 13 years of the team, more than 1300 children and adolescents have been offered this support. Half of them had been affected by the sudden and unexpected death of a close relative. The conference successfully outlined the current knowledge and answered questions about ICU diaries and aftercare. The results of ongoing research projects, cooperation and future networking will be hopefully presented in future international conferences.
WHAT IS KNOWN ABOUT THIS TOPIC • •
Many patients struggle to recover both physically and mentally after critical illness. Research suggests that simple interventions such as ICU diaries aid psychological recovery and aftercare is important to help recovery.
WHAT THIS PAPER ADDS •
The paper describes an international conference where professional instrumental in rehabilitation research present their work along with patients talking about their personal experiences.
REFERENCES Egerod I, Storli SL, Åkerman E. (2011). Intensive care patient diaries in Scandinavia: a comparative study of emergence and evolution. Nursing Inquiry; 18: 235–246. Jones C. (2013). What’s new on the post-ICU burden for patients and relatives? Intensive Care Medicine; 39: 1832–1835.
© 2014 British Association of Critical Care Nurses
Nydahl P, Bäckman CG, Bereuther J, Thelen M. (2013). How much time do nurses need to write an ICU diary? Nursing in Critical Care. DOI: 10.1111/nicc.12046. Peskett M, Gibb P. (2009). Developing and setting up a patient and relatives intensive care support group. Nursing in Critical Care; 14: 4–10.
273
Report on Third International Intensive Aftercare Conference in Norrköping, Sweden Christina Jones, Carl Bäckman, Ingrid Egerod, Peter Gibb, Peter Nydahl and Sissel Storli ABSTRACT The third international conference on intensive care unit (ICU) diaries and intensive aftercare took place in Norrköping, Sweden, on 28 November 2013. The conference was organized by Carl Bäckman and colleagues, Vrinnevi Hospital and NOFI, and represented by Sissell Storli. More than 100 clinicians from across Europe and the USA attended the conference. Key words: Childhood bereavement • ICU diaries • Patient experience • Patient support group • Rehabilitation
The third international conference on intensive care unit (ICU) diaries and intensive aftercare took place in Norrköping, Sweden, on 28 November 2013. The conference was organized by Carl Bäckman and colleagues, Vrinnevi Hospital and NOFI, and represented by Sissell Storli. More than 100 clinicians from across Europe and the USA attended the conference. Carl Bäckman introduced in the conference and remembered that the interdisciplinary goal in the 1970s for the ICU was that ventilated patients should not remember their experiences during critical care. This goal has changed completely during the past 20 years. What can be done to improve the care and aftercare of critically ill patients? The opening presentation was given by Christina Jones on setting up inpatient rehabilitation for recovering critical care patients with very complex needs. She emphasized that patients recovering from critical illness can have complex rehabilitation needs requiring physical, psychological and cognitive expertise (Jones 2013). In addition to the problems of rebuilding muscle loss during the illness, some patients develop a critical illness polyneuropathy, which requires intensive physiotherapy to allow them to return to their normal functioning. Psychological problems such as Authors: Ward 4E, Whiston Hospital, Prescot, UK; Intensive Care Unit, Vrinnevi Hospital, Norrköping, Sweden; Trauma Centre, University Hospital of Copenhagen, Copenhagen, Denmark; ICUsteps, Milton Keynes, UK; University Hospital of Schleswig-Holstein, Schleswig-Holstein, Germany; Department of Health and Care Sciences, Tromsø University Hospital, Tromsoe, Norway Address for correspondence: Dr C Jones, 15 Grove Park Avenue, Rhyl LL18 3RG, UK E-mail: [email protected]
© 2014 British Association of Critical Care Nurses • Vol 20 No 5
severe anxiety, depression or post-traumatic stress disorder (PTSD) may be an issue for a significant percentage of recovering ICU patients and cognitive deficits due to head injury or critical illness can make returning to their normal life difficult. For a percentage of ICU patients, a combination of these problems makes the rehabilitation process prolonged and complex. In the Cheshire and Mersey areas of the UK, a decision was made to set up a rehabilitation network to establish inpatient rehabilitation services. There patients are able to receive intensive physiotherapy 7 days a week, have psychological treatment through a clinical psychologist and/or cognitive rehabilitation, speech and language therapy or assessment by an occupational therapist. For the ICU at Whiston Hospital, this has meant that eight patients with complex rehabilitation needs, for example, critical illness polyneuropathy following adult respiratory distress syndrome requiring extracorporeal membrane oxygenation treatment, have been transferred to the inpatient rehabilitation unit at the sister hospital, St. Helens since the unit opened in January 2013, all with very good outcomes. Prior to the rehabilitation unit being opened, they would not have received the intensive therapy they needed. Ingrid Egerod spoke about the development of ICU diaries in Scandinavia (Egerod et al., 2011). During the 1980s, nurses felt emancipated from the hierarchical hospital structure and developed their own approaches to patient care. Their empathy and care led to the idea of a diary that is written for ICU patients and their families to improve their understanding. She emphasized that there are different basic ideas among the Scandinavian countries. In Denmark, the diary is used to show empathy to the patient. Norwegian nurses 271
Aftercare Conference
write diaries with an existential approach and as an act of caring. Swedish nurses see the diary as a part of therapeutic practice. Today, 42% of Danish, 75% of Swedish and 44% of Norwegian ICUs have implemented ICU diaries in daily care. Peter Nydahl introduced the international diary network, which was founded in early 2012. The network is virtually based on www.icu-diary.org and offers general information about ICU diaries, a literature list, a newsletter and examples of different diaries or other helps for starting diaries. The aim of the network is to offer literature help for implementation and coordination of projects. Today, more than 110 clinicians have participated from across the world. Most members are nurses, but physicians, psychologists, priests, former patients and others have also joined the network. ICU diaries are increasingly becoming a part of a holistic rehabilitation approach. During the implementation of diaries, different countries seem to have different challenges, e.g. bureaucratic barriers in German-speaking countries or juridical barriers in Northern America. Nevertheless, the network enables cooperation and can be a base for studies. The results of a first network study within three countries about the time nurses need to write an ICU diary were presented (Nydahl et al., 2013). Future ideas to fill knowledge gaps according to the diary were discussed, e.g. diaries for children, comparison of different barriers, the impact of diaries on delirious patients or in the setting of palliative care. After the lunch break, Peter Gibb started the afternoon session. He described his journey from a care recipient to a care provider. He pointed out that patients have a history before their ICU admission and introduced his journey, starting as a usual child, marriage and work until his mountain bike accident and consequent admission to ICU. After waking up in the ICU, he could not remember why he was in the hospital. He pointed out that despite the delusional memories, delirium and often believing at the time that the health care staff were trying to harm or even kill them, patients are left with a sense of immense gratitude for the work done by ICU professionals in saving their lives. But at the point where they are no longer sick enough to need a critical care bed, they are discharged to general wards where it seems that no one understands how sick they have been and that there still are ongoing issues they face. Although their lives are saved in the ICU, their recovery is far from complete and needs planned, coordinated rehabilitation and aftercare to complete the work started in the ICU to return them to a normal life. Although the reasons for critical illness admission can be very different, the experience for patients and their relatives has many common themes that leave a legacy of physical, 272
cognitive and psychological problems, which can be difficult to deal with and overcome. The dispersal of ICU patients across many general wards on ICU discharge means that they are unlikely to ever meet another recovering ICU patient. This isolation from other people who are experiencing the same things means that each patient has to find his or her own way to cope with the sequelae of critical illness, often believing that he or she must be the only person ever to have experienced it or that he or she is going mad. Peter felt that overcoming such a traumatic health experience, facing your own mortality, leaves many ICU survivors with a changed outlook on life. A common desire to act on this new perspective and to repay the debt of gratitude they owe to those who have saved them makes ICU patients ideal candidates to become care providers. This was how ICUsteps came into being when Mo Peskett, the senior sister who ran the ICU follow-up clinic, brought patients and relatives together and started them on a path to find a way to help other ICU patients and their relatives (Peskett and Gibb, 2009). Since 2005, the drop-in meetings have given a place for more recent patients to come and meet other people who are further down the recovery journey to help them realize that they are not alone in what they feel and think and that more often than not, what they have experienced is normal for someone who had been through critical care. Peter felt that this step of transforming from a care recipient to a care provider is a rewarding one, and in itself a final step in bringing patients back to being a normal person again. Anders Bergquist, who had been a patient in the ICU in Norrköping, told his experience by using the photographs from his ICU diary to take the audience through his journey. He had little memory for the first 7 days of his ICU stay, actually feeling well while on the ventilator but frustrated with being unable to communicate. He spoke about the fears he had and how his family gave him the motivation to get off the ventilator and then to get his health back. He emphasized how important it was for him to have all his family and friends visiting. He then explained how he put the puzzle of his illness together with the help of an ICU diary given to him during his recovery. By going through the ICU diary, he first realized how ill he had been, the pictures especially showing his swollen face led him to realize his situation. His emotional and moving lecture ended with a photograph of a very special anniversary: exactly 1 year (±1 h) after he was weaned of the ventilator, his third child was born; complete rehabilitation! He felt that he had been privileged to be © 2014 British Association of Critical Care Nurses
Aftercare Conference
a part of an ICU follow-up group, meeting with other ICU patients and sharing all their different stories, what it meant for him and a reflection of what it meant to all their wives who also participated in this group. After a coffee break, Lena Liedholm, psychologist, and Lars Widén, social counsellor, reported their work in the Children’s Trauma Team at Vrinnevi Hospital, Norrköping, Sweden. The team provides support for families with children and adolescents traumatized by sudden death in families due to acute disease, accident, suicide or homicide. In some cases, the children were directly affected and psychologically traumatized as witnesses. The other assignments are to provide support when a parent is fighting a severe illness or injury and in cases where a child has been affected by other potentially traumatizing situations. The experience of the team is that immediate support helps children deal with trauma and grief and that acute trauma intervention helps reduce the risk for high psychic distress, complicated grief reactions or PTSD. The underpinning of the support is psychological first aid (PFA), an evidence-informed approach to help in the immediate aftermath of disaster and terrorism. It is designed to reduce the initial stress caused by traumatic events and to foster short- and long-term adaptive functioning and coping. The acute support is offered through various avenues, e.g. house calls, attending and managing a private farewell to the deceased, individual or family sessions with focus on facts about the traumatic loss, practical arrangements in the first few days or weeks, as well as reactions and management of related thoughts and feelings.
After the acute interventions during the first day(s), the team offers extended support as long as the family feels the need. It can focus on preparations for the burial ceremony, and school-related matters, and most commonly the ongoing management of grief and bereavement. The immediate support consists mainly of helping the family to be fully informed of the situation. During information sharing, it is especially important that the closest family members are gathered and get the same information at the same time. There are often very strong reactions and support is provided acknowledging the normal reactions to the severe situation by providing strategies on how to manage them. Research has suggested that later distressing reactions can be avoided or mitigated by reducing the focus on the emotional reactions during the initial hours after a critical traumatic event, and instead focusing on facts and practical matters. The extent of the ongoing support varies depending on the needs and requests of the family, from only one meeting on the very first day to many years of contact in different ways and with a different focus. During the first 13 years of the team, more than 1300 children and adolescents have been offered this support. Half of them had been affected by the sudden and unexpected death of a close relative. The conference successfully outlined the current knowledge and answered questions about ICU diaries and aftercare. The results of ongoing research projects, cooperation and future networking will be hopefully presented in future international conferences.
WHAT IS KNOWN ABOUT THIS TOPIC • •
Many patients struggle to recover both physically and mentally after critical illness. Research suggests that simple interventions such as ICU diaries aid psychological recovery and aftercare is important to help recovery.
WHAT THIS PAPER ADDS •
The paper describes an international conference where professional instrumental in rehabilitation research present their work along with patients talking about their personal experiences.
REFERENCES Egerod I, Storli SL, Åkerman E. (2011). Intensive care patient diaries in Scandinavia: a comparative study of emergence and evolution. Nursing Inquiry; 18: 235–246. Jones C. (2013). What’s new on the post-ICU burden for patients and relatives? Intensive Care Medicine; 39: 1832–1835.
© 2014 British Association of Critical Care Nurses
Nydahl P, Bäckman CG, Bereuther J, Thelen M. (2013). How much time do nurses need to write an ICU diary? Nursing in Critical Care. DOI: 10.1111/nicc.12046. Peskett M, Gibb P. (2009). Developing and setting up a patient and relatives intensive care support group. Nursing in Critical Care; 14: 4–10.
273
