TY - JOUR
T1 - Parental and child adjustment to amyotrophic lateral sclerosis
T2 - transformations, struggles and needs
AU - Sommers-Spijkerman, Marion
AU - Rave, Neele
AU - Kruitwagen-van Reenen, Esther
AU - Visser-Meily, Johanna M.A.
AU - Kavanaugh, Melinda S.
AU - Beelen, Anita
N1 - Funding Information:
The authors received funding from the ALS Foundation Netherlands ( https://www.als.nl ), grant number AV20180015. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Publisher Copyright:
© 2022, The Author(s).
PY - 2022/3/17
Y1 - 2022/3/17
N2 - Background: Amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA) and primary lateral sclerosis (PLS), together referred to as ALS, are life-limiting diagnoses affecting not only patients but also the families surrounding them, especially when dependent children are involved. Despite previous research highlighting the vulnerability of children in these families, they are, as yet, often overlooked in healthcare. Efforts are needed to better support children in families living with ALS, both directly and through strengthening parents in their parental role. This study sought to gain a better understanding of parental and children’s experiences, struggles and support needs in families living with ALS. Methods: Semi-structured interviews were conducted with 8 parents with ALS, 13 well parents and 15 children, together representing 17 families. Interview data were analyzed using qualitative content analysis. Results: Three major themes were identified relating to (1) ALS-related transformations in families’ homes, activities, roles and relationships, that trigger (2) distress among families, which, in turn, evokes (3) emotional, psychological, educational and practical support needs. For emotional and practical support, parents and children mainly rely on their own family and social network, whereas they seek educational and psychological support from healthcare professionals. Conclusions: Our findings imply that ALS care professionals may foster family adjustment to living with ALS, most notably through encouraging parents to engage in a dialogue with their children about the many transformations, struggles and needs imposed by ALS and teaching them how to start the dialogue.
AB - Background: Amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA) and primary lateral sclerosis (PLS), together referred to as ALS, are life-limiting diagnoses affecting not only patients but also the families surrounding them, especially when dependent children are involved. Despite previous research highlighting the vulnerability of children in these families, they are, as yet, often overlooked in healthcare. Efforts are needed to better support children in families living with ALS, both directly and through strengthening parents in their parental role. This study sought to gain a better understanding of parental and children’s experiences, struggles and support needs in families living with ALS. Methods: Semi-structured interviews were conducted with 8 parents with ALS, 13 well parents and 15 children, together representing 17 families. Interview data were analyzed using qualitative content analysis. Results: Three major themes were identified relating to (1) ALS-related transformations in families’ homes, activities, roles and relationships, that trigger (2) distress among families, which, in turn, evokes (3) emotional, psychological, educational and practical support needs. For emotional and practical support, parents and children mainly rely on their own family and social network, whereas they seek educational and psychological support from healthcare professionals. Conclusions: Our findings imply that ALS care professionals may foster family adjustment to living with ALS, most notably through encouraging parents to engage in a dialogue with their children about the many transformations, struggles and needs imposed by ALS and teaching them how to start the dialogue.
KW - Amyotrophic lateral sclerosis
KW - Family
KW - Parenting
KW - Qualitative research
KW - Support needs
KW - Health Personnel/psychology
KW - Parents/psychology
KW - Amyotrophic Lateral Sclerosis/psychology
KW - Humans
KW - Family/psychology
KW - Qualitative Research
KW - Child
UR - http://www.scopus.com/inward/record.url?scp=85126515110&partnerID=8YFLogxK
U2 - 10.1186/s40359-022-00780-1
DO - 10.1186/s40359-022-00780-1
M3 - Article
C2 - 35300726
AN - SCOPUS:85126515110
SN - 2050-7283
VL - 10
SP - 1
EP - 15
JO - BMC psychology
JF - BMC psychology
IS - 1
M1 - 72
ER -