Integrating care for neurodevelopmental disorders by unpacking control: A grounded theory study.
BACKGROUND
To establish integrated healthcare pathways for patients with neurodevelopmental disorders (ND) such as autism spectrum disorder and attention-deficit hyperactivity disorder is challenging. This study sets out to investigate the main concerns for healthcare professionals when integrating ND care pathways and how they resolve these concerns.


METHODS
Using classic grounded theory (Glaser), we analysed efforts to improve and integrate an ND care pathway for children and youth in a Swedish region over a period of 6 years. Data from 42 individual interviews with a range of ND professionals, nine group interviews with healthcare teams, participant observation, a 2-day dialogue conference, focus group meetings, regional media coverage, and reports from other Swedish regional ND projects were analysed.


RESULTS
The main concern for participants was to deal with overwhelming ND complexity by unpacking control, which is control over strategies to define patients' status and needs. Unpacking control is key to the professionals' strivings to expand constructive life space for patients, to squeeze health care to reach available care goals, to promote professional ideologies, and to uphold workplace integrity. Control-seeking behaviour in relation to ND unpacking is ubiquitous and complicates integration of ND care pathways.


CONCLUSIONS
The Unpacking control theory expands central aspects of professions theory and may help to improve ND care development.
Department of Psychology, Linnaeus University, Växjö, Sweden; gustaf.waxegard@lnu.se.
Gustaf
G
Waxegård
Research Unit, Region of Kronoberg, Department of Clinical Sciences, Family Medicine, Lund University, Lund, Sweden.
Hans
H
Thulesius
D000293:Adolescent; D000328:Adult; D000368:Aged; D001289:Attention Deficit Disorder with Hyperactivity / Q000628:therapy; D000067877:Autism Spectrum Disorder / Q000628:therapy; D002648:Child; D003695:Delivery of Health Care; D005260:Female; D066296:Grounded Theory; D006282:Health Personnel; D006296:Health Services; D006801:Humans; D008297:Male; D008875:Middle Aged; D065886:Neurodevelopmental Disorders / Q000628:therapy; D010347:Patient Care Planning; D010348:Patient Care Team; D011209:Power, Psychological; D011788:Quality of Life; D013548:Sweden; D014937:Work; D017132:Workplace; D055815:Young Adult
ADHD; Autism; care pathways; health services; integrated care; neurodevelopmental disorders