Resources
Research and commentary Transition to adult services for young people with life-limiting conditions Kirk S, Fraser C (2014) Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: a qualitative study. Palliative Medicine. 28, 4, 342-352. Background The number of young people with life-limiting conditions surviving into adulthood has increased. Transition to adult services can be a worrying time for the young person and their family. There is little information about how hospices are able to support young people during the transition process from children’s to adult services. Methods A qualitative approach was employed in this research. The sample was young people over the age of 16 years from one children’s hospice. The parents of the young people were also invited to participate. A purposive sample was used to recruit a range of staff from the hospice. Young people at the end of life stage were excluded from the study. Sixteen young people, 16 parents (12 families) and seven staff members – a total of 39 participants – took part in the research.
An outside researcher undertook individual semi-structured interviews. The participants could choose the location for the interview and young people could decide if they wished their parent/s to be present. A total of 35 interviews took place. Grounded theory was used to analyse the data. Findings Transition to adult services was generally thought by parents and young people to be a difficult and stressful time with many families feeling a sense of abandonment. Moving to a young person’s unit in the hospice was viewed in a positive light by the young people, although some parents felt that their information and emotional needs were not always met at this time. The changing support needs of parents and siblings were seen as being important. Some parents felt that a more formal approach to emotional support was required.
Sibling support tended to be more focused on meeting the needs of younger siblings. The hospice staff identified the specific skills set required for working with young people. All participants recognised that, when working with young people, it was important that they are treated as individuals, encouraging autonomy and independence and discouraging a maternalistic approach. Conclusion It has been identified that transition to adult services can raise many issues for the young person and their family. An individualised approach is required to ensure that all needs are met. There is a role for hospices to support and co-ordinate. The research also concluded by saying that a new model is needed that supports young people’s independence, provides emotional support and helps the siblings of these young people.
Ad hoc planning leads to a sense of frustration for patients and families This valuable study gives a detailed insight into the issues that these young people and their families experienced during transition. It highlights the difficulties that arise when service requirements change as a result of increased life expectancy for some young people with life-limiting conditions, which is becoming an increasingly important issue in child health and social care provision. Beresford (2013a) discusses how there are at least 49, 000 people in the UK under 19 years of age with a life-limiting or life-threatening condition. The sense of frustration of many of the young people and their families was evident in the research findings with a strong sense of ad hoc planning, with variable degrees of involvement of young people and their families. This frustration caused me to reflect on the role of all child health and social care NURSING CHILDREN AND YOUNG PEOPLE
professionals who are involved in the care of young people with life-limiting conditions. There is a need to be mindful of the need to always work in a collaborative manner taking into account possible future needs. The study also highlighted the fact that not everyone who comes into contact with young people on the verge of adulthood feels they have the necessary communication skills. This lack highlights the need for self-awareness and the responsibility of each healthcare professional to seek help if they feel that they are not able to meet the specific requirements of individuals. Beresford (2103b) discusses how often simple strategies, such as providing relevant information about adult services, can really help with transition. This study exemplifies the need to remember that all those involved have
a responsibility to be aware of the local provision in adulthood. This will help to ensure that young people with life-limiting conditions and their families are provided with pertinent and relevant information that enables them to have care and support tailored to their individual needs.
References Beresford B (2013a) Making a Difference for Young Adult Patients. Research Briefing. Together for Short Lives, London Beresford B (2013b) Making a Difference for Young Adult Patients. Practice Prompts: Key Messages for Research. Together for Short Lives, London
Theresa Pengelly, senior lecturer in children and young people’s nursing, Coventry University, on behalf of the RCN’s Research in Child Health Community core network July 2014 | Volume 26 | Number 6 13
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Research and commentary Transition to adult services for young people with life-limiting conditions Kirk S, Fraser C (2014) Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: a qualitative study. Palliative Medicine. 28, 4, 342-352. Background The number of young people with life-limiting conditions surviving into adulthood has increased. Transition to adult services can be a worrying time for the young person and their family. There is little information about how hospices are able to support young people during the transition process from children’s to adult services. Methods A qualitative approach was employed in this research. The sample was young people over the age of 16 years from one children’s hospice. The parents of the young people were also invited to participate. A purposive sample was used to recruit a range of staff from the hospice. Young people at the end of life stage were excluded from the study. Sixteen young people, 16 parents (12 families) and seven staff members – a total of 39 participants – took part in the research.
An outside researcher undertook individual semi-structured interviews. The participants could choose the location for the interview and young people could decide if they wished their parent/s to be present. A total of 35 interviews took place. Grounded theory was used to analyse the data. Findings Transition to adult services was generally thought by parents and young people to be a difficult and stressful time with many families feeling a sense of abandonment. Moving to a young person’s unit in the hospice was viewed in a positive light by the young people, although some parents felt that their information and emotional needs were not always met at this time. The changing support needs of parents and siblings were seen as being important. Some parents felt that a more formal approach to emotional support was required.
Sibling support tended to be more focused on meeting the needs of younger siblings. The hospice staff identified the specific skills set required for working with young people. All participants recognised that, when working with young people, it was important that they are treated as individuals, encouraging autonomy and independence and discouraging a maternalistic approach. Conclusion It has been identified that transition to adult services can raise many issues for the young person and their family. An individualised approach is required to ensure that all needs are met. There is a role for hospices to support and co-ordinate. The research also concluded by saying that a new model is needed that supports young people’s independence, provides emotional support and helps the siblings of these young people.
Ad hoc planning leads to a sense of frustration for patients and families This valuable study gives a detailed insight into the issues that these young people and their families experienced during transition. It highlights the difficulties that arise when service requirements change as a result of increased life expectancy for some young people with life-limiting conditions, which is becoming an increasingly important issue in child health and social care provision. Beresford (2013a) discusses how there are at least 49, 000 people in the UK under 19 years of age with a life-limiting or life-threatening condition. The sense of frustration of many of the young people and their families was evident in the research findings with a strong sense of ad hoc planning, with variable degrees of involvement of young people and their families. This frustration caused me to reflect on the role of all child health and social care NURSING CHILDREN AND YOUNG PEOPLE
professionals who are involved in the care of young people with life-limiting conditions. There is a need to be mindful of the need to always work in a collaborative manner taking into account possible future needs. The study also highlighted the fact that not everyone who comes into contact with young people on the verge of adulthood feels they have the necessary communication skills. This lack highlights the need for self-awareness and the responsibility of each healthcare professional to seek help if they feel that they are not able to meet the specific requirements of individuals. Beresford (2103b) discusses how often simple strategies, such as providing relevant information about adult services, can really help with transition. This study exemplifies the need to remember that all those involved have
a responsibility to be aware of the local provision in adulthood. This will help to ensure that young people with life-limiting conditions and their families are provided with pertinent and relevant information that enables them to have care and support tailored to their individual needs.
References Beresford B (2013a) Making a Difference for Young Adult Patients. Research Briefing. Together for Short Lives, London Beresford B (2013b) Making a Difference for Young Adult Patients. Practice Prompts: Key Messages for Research. Together for Short Lives, London
Theresa Pengelly, senior lecturer in children and young people’s nursing, Coventry University, on behalf of the RCN’s Research in Child Health Community core network July 2014 | Volume 26 | Number 6 13
Downloaded from RCNi.com by ${individualUser.displayName} on Oct 09, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
