Caregiving of children with special needs

Children who are vulnerable due to intellectual, physical, and/or visual disabilities or chronic illness need adequate care even more than other children. Goals for this topic are:
(1) to increase the impact of our stress-attachment model of challenging behaviour in the field of research, training, and practice;
(2) to validate assessments of caregiving and attachment in special needs populations;
(3) to develop and test interventions that not only prevent mental health risks but that may also promote development through resilience against stress and increased motivation.

Portfolio Caregiving of children with special needs
In this text we focus on providing information on our work at the VU, Section of Clinical Child and Family Studies and EMGO Institute for Health and Care Research in the care for persons with an intellectual disability. In the text below: our theoretical views, the attachment-related instruments we use, developed interventions and tested interventions as well as formal collaboration with partners providing care for persons with an intellectual disability.  

Theory
• In 2006 the Stress-Attachment model was developed by C. Schuengel & C.G.C. Janssen.  
  People with mental retardation and psychopathology: Stress, affect regulation and attachment. 
  A review. International Review Research Developmental Disabilities, 32, 231-262).
• We use the Circle of Security 
• For background information on attachment theory and instruments we participated in Stor en 
  Storsbergen, 2006. Onveilig gehecht of een hechtingsstoornis, LKNG, Lemma, Utrecht. 

Instruments/assessment
* Best practice guide for the assessment of attachment disorders of children with visual and/or ID (Dekker & Janssen, 2010 & download LKNG)

* The Secure Base Safe Haven Observation list (SBSHO; De Schipper & Schuengel, 2006; 2009). To help professional caregivers in observing relationship-specific attachment behaviour in group care. Caregivers are asked to observe how a client behaves towards other support staff as well as how the client behaves towards the caregiver him/herself. Completion of the list takes about 10 to 15 minutes.

* Disturbances of Attachment Interview (DAI: Smyke & Zeanah): Training interview and scoring (Oosterman, De Schipper, Giltaij, Schuengel).

* Adult Attachment Interview (Main & Hesse): Training interview and scoring (Schuengel, Oosterman).

* Instrument measuring sensitivity of the caregiver towards the child: National Institute of Child Health and Human Development Early Child Care Research Network (NICHD) (1993). Training in scoring (on request: Schuengel).

* VU-Ambulant Monitoring System (VU-AMS). A monitoring system to measure psychophysiological stress. Experience in use (Janssen, Oosterman, Sterkenburg, Willemen).

* Reaction to Diagnosis Interview (RDI). A method to measure problems of parents in accepting the disabilities of their child. Training interview and scoring.

Developed interventions Integrative Therapy for Attachment and Behaviour (ITAB) / Integratieve Therapie voor Gehechtheid en Gedrag (ITGG) is developed for clients with severe challenging behaviour and with a history of pathogenic care (see Therapy protocol by Sterkenburg & Schuengel, 2008;  DVD: Attachment: a psychotherapeutic treatment English & Dutch; Psychologist and pedagogues can follow courses on the ITAB at a national post-academic training centre RINO. The five-day course material (theory, cases and e-learning package) is translated into English and can be offered on invitation (Sterkenburg et al. 2008, 2009; Sterkenburg, dissertation). Tested interventions

‘CONTACT’ program. An intensive intervention using videofeedback in improving quality of interaction and quality of life of persons with a visual disability and ID (Janssen, M.), (Schuengel, C., Kef, S., Damen, S., & Worm, M. (2010) ‘People who need people’: attachment and professional caregiving. Journal of Intellectual Disability Research, 54(1), 38-47)
 
VIPP-LD (Hodes et al. 2009) based on VIPP-SD (Centre for Child and Family Studies)
 
An intervention programme using videofeedback especially designed for mothers with an intellectual disability. Main concepts are sensitive parenting and positive disciplining (Hodes & Meppelder: in progress).

Collaboration

In October 2009 Bartiméus and the VU University signed a formal collaborative agreement (covering 2009 - 2014) with as theme for research, development, and education: ‘Attachment and social relations of persons with a visual and visual-and-intellectual disability’.
 
In collaboration with ASVZ we are trying to implement concepts of attachment-theory as central concepts in care for people with an intellectual disability at all levels of the organization (management, staff and caregivers). An implementation-document is about to be finished.
 
Cordaan, Amsterdam; Amsta, Amsterdam & Esdégé-Reigersdaal: These organisations have participated in several studies on children’s attachment behaviour in group care. Clinicians have applied attachment research in their work with persons with intellectual disabilities.
 
Carante Groep; Philadelphia Zorg & Gemiva-SVG: These organisations participate, together with VU University, in a research consortium (2008-2012) on parents with intellectual disabilities. Theory and experience resulting from this study will be implemented in their work with parents with intellectual disabilities.

Key publications

De Schipper, J.C., Stolk, J., & Schuengel, C. (2006). Professional caretakers as attachment figures in day care centers for children with intellectual disability and behavior problems.Research in Developmental Disabilities, 27, 203-216.

De Schipper, J. C. & Schuengel, C. (under review). Attachment behaviour towards support staff in children with intellectual disabilities: Associations with challenging behaviour.

De Schipper, J. C. & Schuengel, C. (2006). Secure Base Safe Haven Observation list for child attachment behaviour. Psychometric Analyses. VU University Amsterdam. Unpublished Work.

Janssen, C.G.C., & Schuengel, C. (2010). Interventies voor mensen met een verstandelijke beperking en ernstige gedrags- en/of emotionele problemen. TijdschriftOrthopedagogiek, Kinderpsychiatrie en Klinische Kinderpsychologie.

Janssen, C.G.C., Voorman, J., Becher, J., Dallmeijer, A.J., Schuengel, C. (in press). Course of health-related quality of life in 9-16 year-old children with cerebral palsy: associations with gross motor abilities and mental health. Disability & Rehabilitation.

Schuengel, C. & Janssen, C.G.C. (2006). People with mental retardation and psychopathology: Stress, affect regulation and attachment. A review. International Review Research Developmental Disabilities, 32, 231-262.

Schuengel, C., Kef, S., Damen, S., & Worm, M. (2010). People who need people: attachment and professional caregiving. Journal of Intellectual Disability Research, 54(1), 38-47

Schuengel, C., Oosterman, M. & Sterkenburg, P.S. (2009). Children with disrupted attachment histories: Interventions and psychophysiological indices of effects. Child and Adolescent Psychiatry and Mental Health.

Schuengel, C., Sterkenburg, P.S., Jeczynski, P., Janssen, C.G.C., & Jongbloed, G. (2009). Supporting affect regulation in children with multiple disabilities during psychotherapy: A multiple case design study of therapeutic attachment.Journal of Consulting and Clinical Psychology, 77(2), Apr, 291-301.

Schuengel, C., Rentinck, I.C.M., Stolk, J. Voorman, J.M., Loots, G.M.P., Ketelaar, M., Gorter, J.W., & Becher, J.G. (2009). Resolution of diagnosis by parents of children with cerebral palsy depends on children’s age and severity of disability. Child: Care, Health, and Development, 35, 673-680.

Sterkenburg, P.S., Janssen, C.G.C. & Schuengel, C. (2008). The effect of an attachment-based behaviour therapy for children with visual and severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 12, 126-135