“It’s just a dark tunnel and people telling you you should wait.” Nevada Disabilities Conference 2015 Pamela Young, Ph.D. Alaintha Peppard

 Examine the stress experienced by parents of a child with special needs  Identify the causes of family stress  Identify what parents need to help alleviate stress  Develop techniques to effectively partner with parents in reducing family stress

“If they don’t give you an answer I’m still going to Google it 12,000 times, or I’m going to stay up all night thinking about it. I mean, it’s not something that goes away.” “We didn’t know anything, and it was just, life was ‘I don’t know,’ and it made everything hard.”

 Vital component in helping parents cope with their child’s disability  Helps parents deal with the practicalities of caring for their children  Assists parents in emotionally adjusting to their child’s disability  Gives parents the ability to plan for the future

 Enables parents to gain access to needed services and benefits  Gives parents a sense of control  Helps to alleviate stress  If the need for information is not met, parents feel isolated  A lack of information decreases parent satisfaction with professional services (Adler, Salanterä, Leinto-Kilpi, & Grädel, 2015; Young, 2015)

Parents wanted knowledge about:  The condition or illness  Treatment  Equipment  Daily care of the child  Support  The future  How to explain the illness to others  The effect of the illness on the family (Adler, Salanterä, Leinto-Kilpi, & Grädel, 2015; Young, 2015)

 Needs vary greatly between individuals  Needs vary over time  Not all parents need the same amount or content of knowledge  Information should be sufficient to answer parent questions  Beware of giving too much information at once  Information should be relevant to the family’s needs or child’s condition (Adler, Salanterä, Leinto-Kilpi, & Grädel, 2015; Young, 2015)

 Verbal one-to-one conversations  Understandable, general information sheets  Brochures on community resources  Child specific written information  Lists of suitable internet sites (Adler, Salanterä, Leinto-Kilpi, & Grädel, 2015)

“A specialist I know will sort of just tell you like, this diagnosis, and they can’t speak to us in layman’s terms and we don’t have any clue what some of them are talking about...” “I have [the developmental specialist’s] cell phone number. She was very open about communicating with her if I have any questions...”

 Parents want personal communication  Parents value accessibility to the people caring for their child  Parents want professionals to listen to them and value their expertise on their own child

 Information sharing is an area where the balance of power shifts back and forth (McIntosh & Runciman, 2008)  To determine if parents have sufficient knowledge we have to assess  Ask precise questions such as, “Do you feel secure in handling the daily medication for your child?” or “Do you feel confident in handling problems with your child’s feeding equipment?” (Adler, Salanterä, Leinto-Kilpi, & Grädel, 2015)

“It helps that she’s really personable, and at the very beginning she tried to get to know me a little bit before we stepped right into what is going on with Ashley.” “She’ll ask me about the baby but it kind of gets a little bit more, you know, kind of close, kind of personal instead of just, oh, okay, I’ll be there for an appointment in the next two weeks or so and that’s it. You don’t know anything about them.”

“I’m sure I’m getting everything that’s required by the state for him, but it doesn’t feel complete. It doesn’t feel like, there’s no connection, and it’s wonderful that she’s there to help Marcus, but she doesn’t know Marcus.”

Two types:  Role ambiguity: internal family boundaries that define who is responsible for what  Membership ambiguity: external boundaries that define the difference between the family and the outside world (Berge & Holm, 2007)

 Requires trust  Built on empathy, critical listening and mutual respect  Offers support to families rather than just services  Must be a collaborative team effort  Can increase family satisfaction with services  May contribute to stress and feelings of isolation when absent (Enrione et al., 2005; McIntosh & Runciman, 2008; Young, 2015)

 Reduce parental stress, anxiety, and depression  Enhance positive perceptions and attitudes toward the child’s disability  Increase parents’ confidence in their ability to care for the child  Increase parents’ ability to access resources and support from others (Adler, Salanterä, Leinto-Kilpi, & Grädel, 2015)