Advanced search
1 file | 2.32 MB

Experiences of parents whose adolescent child has cancer, basis of a psychosocial support booklet ‘The Loving Manager’

Nathalie Belpame (UGent) , Elsie Decoene (UGent) , Marijke Quaghebeur (UGent) and Sofie Verhaeghe (UGent)
(2019)
Author
Organization
Abstract
Background: Adolescent and young adults (AYAs) with cancer often rely primarily on their parents for support; emotionally, practically as well as financially. To offer parents adequate psychosocial care during the cancer trajectory of their adolescent child, insight in the experiences, unmet needs and expectations of parents is vital. Methods: In a qualitative research, based on the principles of grounded theory, semi-structured interviews were conducted with both mothers and fathers of AYA’s between 15 and 25 years of age. Thirty-one participants were recruited in the University Hospital of Ghent, Belgium, at different times in the cancer trajectory of the AYA, starting from the time of diagnosis until 5 years after the end of the treatment. Results: From the diagnosis onwards, parents focus entirely on their ill child. Most of them offer unconditional all-round care in which they find it crucial to ‘be there’ for their child. Parents express important needs regarding involvement in the cancer trajectory and communication. Parents act as ‘Loving managers’ and fulfill simultaneously the role of representative, gate-keeper, advocate, and caregiver of the AYA. They feel challenged to find a balance in relation to the AYA, in relation to the other parent and romantic partner, to other children, and in relation to their network (family, friends, colleagues etc.) and express difficulties in holding everything together. Many parents express a severe lack of self-care and have a need for support from healthcare professionals. Discussion and conclusion: Based on the findings of this research, a psychosocial support booklet was developed for parents of AYAs with cancer. This booklet describes the experiences of parents, using illustrative quotes of the interviewed parents, as well as tools for parents to cope with their experiences. Worksheets are included which also give recommendations to enhance the support given by healthcare professionals, for instance nurses.

Downloads

  • () care42019-abstract-book-def-online.pdf
    • full text
    • |
    • open access
    • |
    • PDF
    • |
    • 2.32 MB

Citation

Please use this url to cite or link to this publication:

Chicago
Belpame, Nathalie, Elsie Decoene, Marijke Quaghebeur, and Sofie Verhaeghe. 2019. “Experiences of Parents Whose Adolescent Child Has Cancer, Basis of a Psychosocial Support Booklet ‘The Loving Manager’.” In .
APA
Belpame, N., Decoene, E., Quaghebeur, M., & Verhaeghe, S. (2019). Experiences of parents whose adolescent child has cancer, basis of a psychosocial support booklet “The Loving Manager.” Presented at the CARE4 International Scientific Nursing and Midwifery Congress, Third Edition.
Vancouver
1.
Belpame N, Decoene E, Quaghebeur M, Verhaeghe S. Experiences of parents whose adolescent child has cancer, basis of a psychosocial support booklet “The Loving Manager.”2019.
MLA
Belpame, Nathalie et al. “Experiences of Parents Whose Adolescent Child Has Cancer, Basis of a Psychosocial Support Booklet ‘The Loving Manager’.” 2019. Print.
@inproceedings{8599733,
  abstract     = {Background: Adolescent and young adults (AYAs) with cancer often rely primarily on their parents for support; emotionally, practically as well as financially. To offer parents adequate psychosocial care during the cancer trajectory of their adolescent child, insight in the experiences, unmet needs and expectations of parents is vital.
Methods: In a qualitative research, based on the principles of grounded theory, semi-structured interviews were conducted with both mothers and fathers of AYA{\textquoteright}s between 15 and 25 years of age. Thirty-one participants were recruited in the University Hospital of Ghent, Belgium, at different times in the cancer trajectory of the AYA, starting from the time of diagnosis until 5 years after the end of the treatment.
Results: From the diagnosis onwards, parents focus entirely on their ill child. Most of them offer unconditional all-round care in which they find it crucial to {\textquoteleft}be there{\textquoteright} for their child. Parents express important needs regarding involvement in the cancer trajectory and communication.
Parents act as {\textquoteleft}Loving managers{\textquoteright} and fulfill simultaneously the role of representative, gate-keeper, advocate, and caregiver of the AYA. They feel challenged to find a balance in relation to the AYA, in relation to the other parent and romantic partner, to other children, and in relation to their network (family, friends, colleagues etc.) and express difficulties in holding everything together. Many parents express a severe lack of self-care and have a need for support from healthcare professionals.
Discussion and conclusion: Based on the findings of this research, a psychosocial support booklet was developed for parents of AYAs with cancer. This booklet describes the experiences of parents, using illustrative quotes of the interviewed parents, as well as tools for parents to cope with their experiences. Worksheets are included which also give recommendations to enhance the support given by healthcare professionals, for instance nurses.},
  author       = {Belpame, Nathalie and Decoene, Elsie and Quaghebeur, Marijke and Verhaeghe, Sofie},
  language     = {eng},
  location     = {Leuven},
  title        = {Experiences of parents whose adolescent child has cancer, basis of a psychosocial support booklet {\textquoteleft}The Loving Manager{\textquoteright}},
  year         = {2019},
}