Living with a parent with ALS - adolescents’ need for professional support from the adolescents’ and the parents’ perspectives

Abstract

Aim

The aim of the study was to qualitatively investigate the adolescents’ need for professional support when a parent has amyotrophic lateral sclerosis (ALS) – from the adolescents’ and the parents’ perspectives.

Methods

A total of 37 individual semi-structured single interviews with 18 families were conducted, including 11 adolescents aged 8-25 and 26 parents, 13 with ALS and 13 co-parents. Data was analysed using qualitative content analysis.

Results

Both adolescents and 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 the uncertainty of living with the illness in the family. It was therefore essential to ensure that the adolescents were not forgotten in the disease context and that their needs for being involved as well as for obtaining information and understanding, was addressed. The importance of offering the adolescents support early was emphasized, but also of actively helping the families to master challenges in their everyday life. Support adapted to each family’s unique situation and preferences was desired, as the adolescents’ need for support seemed to be individual, disease-dependent and varied during different phases.

Conclusion

Given the adolescents’ need for information and understanding, healthcare professionals must actively work to reach the adolescents as early as possible. It is crucial to ensure that the adolescents are given the opportunity to be involved based on their own conditions, as well as to support the families to strengthen their communication.

Keywords:

• Amyotrophic lateral sclerosis
• motor neuron disease
• adolescents as relatives
• family support
• qualitative content analysis
• neurophysiology
• clinical trials
• ethics

Acknowledgments

Special thanks to all participants in the study, as well as Katarina Johansson and Erica Almgren Stenberg for their support with recruitment.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Additional information

Funding

The study was funded by Ulla-Carin Lindquist’s Foundation for ALS-Research; the Institute of Health and Care Sciences at Sahlgrenska Academy, the University of Gothenburg; the University of Gothenburg Center for Person-Centred Care (GPCC); the Neurological Association in Sweden; Fundraising Foundation for Neurological Research and the Wilhelm and Martina Lundgren Science Fund.