Parental experiences of having a child with CLN3 disease (juvenile Batten disease) and how these experiences relate to family resilience.
Mattias Krantz, Emma Malm, Niklas Darin and 4 others
PMID 35233790WHAT IT FOUND
Parents described recurring losses and family strain as their child's vision, speech, movement and behaviour declined.
They also described resilience through meaning, shared memories, support groups and flexible routines.
Key findings
01Parents described recurring losses and grief throughout the course of the disease.
02Caring for the child was exhausting and time-consuming, pushing other family needs to secondary importance.
03Parents described support groups, care assistants and short-term stays at care centres as important sources of relief.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
Only eight parents of five children were interviewed, and two fathers did not participate, so this is a small convenience sample from one Swedish hospital and may not represent all CLN3 families. The study applied a pre-set family resilience model, and the authors noted it may not be a useful lens for all families, so some experiences may not fit and some resilience processes may have been missed. It did not include siblings, children, or health and care staff, and it did not measure whether any support improved family outcomes. Children were aged 11 to 24 and one was deceased, so parents' accounts may reflect different disease stages and loss.
Declared interests
The authors declared no relevant conflicts of interest. Funding came from the Swedish state under an agreement between the government and country councils and from the Ann-Mari and Per Ahlqvist Foundation.
The easy way to misread this
Do not read the resilience themes as evidence that a family intervention works. The study interviewed eight parents of five children, used convenience sampling, and did not measure outcomes or test treatment.