TASKS OF THE PRACTITIONER
Families with children with disabilities face the similar, mundane, everyday life struggles of families with typical children, yet there are volumes of research material investigating the differences between coping styles and functions in the family of a child with a disability, illness, or injury.
A study in Pediatrics (23) “provided a compare and contrast” of children with chronic illness to those children without. This study revealed that while all children and families should receive a psychosocial assessment, practitioners should not “assume that dysfunction” exists because of the disability in the family. It appears from this study that assessment of the family's needs should come first and then a look at the family's strengths and weaknesses in order to devise a support plan.
Similar research conducted by Press and Nolan (24) found that disease or disability does not predict adaptation to disability and that the psychosocial adjustment of family life before the illness or injury was the same as the psychosocial adjustment after the illness or injury. The predictors for positive outcome included good communication between family members, low conflict in the home setting, and the positive expression of emotion.
With that being stated, the role of the practitioner and the interventions offered to the family must always “start where the family is.” In other words, the practioner must listen to the family's needs and offer emotional support at all developmental milestones or turning points in the family's life. The practitioner can act as a positive role model for the family by acknowledging changes in the family dynamics or community systems and reframe these changes so that the family can maintain function.
However, in order for a family to function at an optimal level, one must provide the family with the information and resources necessary to succeed. The practitioner or medical staff member should investigate information and resources in the family's community. Information on local community support groups, as well as resource information on funding opportunities, will be helpful to the family. Concrete assistance, such as filling out a Medicaid application or arranging a Social Security interview, will relieve the family's stress greatly.
Communication is also an essential intervention when working with any family, regardless of their child's diagnosis. Most families may not remember the exact phrases or words that the practitioner uses to disseminate information, but the family will often remember the tone, setting, and approachability of the practitioner during the interview. The physician's ability to restore competence in the family by acknowledging and validating their fears or concerns will ensure that the family feels as if they are a member of the health care team.