Living with a parent with ALS - adolescents’ need for professional support from the adolescents’ and the parents’ perspectives
- Författare
- Nina Malmström, Birgitta Jakobsson Larsson, Stefan Nilsson, Joakim Öhlén, Ingela Nygren, Peter M. Andersen & Anneli Ozanne
- Titel
- Living with a parent with ALS - adolescents’ need for professional support from the adolescents’ and the parents’ perspectives
- Utgivningsår
- 2023
- Tidskrift
- Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
- Volym
- 24
- Häfte
- 7-8
- Sidor
- 727-735
- Url
- Amyotrophic lateral sclerosis, motor neuron disease, adolescents as relatives, family support, qualitative contentanalysis, neurophysiology, clinical trials, ethics
- Sammanfattning
Aim: The aim of the study was to qualitatively investigate the adolescents’ need for professional support when a parenthas amyotrophic lateral sclerosis (ALS) – from the adolescents’ and the parents’ perspectives. Methods: A total of 37 indi-vidual semi-structured single interviews with 18 families were conducted, including 11 adolescents aged 8-25 and 26parents, 13 with ALS and 13 co-parents. Data was analysed using qualitative content analysis. Results: Both adolescentsand parents described the adolescents as needing professional support but found it difficult to articulate this need.However, the results indicate that the adolescents needed help in bringing manageability into their lives due to theuncertainty of living with the illness in the family. It was therefore essential to ensure that the adolescents were not for-gotten in the disease context and that their needs for being involved as well as for obtaining information and understand-ing, was addressed. The importance of offering the adolescents support early was emphasized, but also of activelyhelping the families to master challenges in their everyday life. Support adapted to each family’s unique situation andpreferences was desired, as the adolescents’ need for support seemed to be individual, disease-dependent and varied dur-ing different phases. Conclusion: Given the adolescents’ need for information and understanding, healthcare professionalsmust actively work to reach the adolescents as early as possible. It is crucial to ensure that the adolescents are given theopportunity to be involved based on their own conditions, as well as to support the families to strengthen theircommunication.