I finished the SHARE training on Friday. There were 26 participants. SHARE's mission to train leaders for the support groups was well attended. There were nurses, social workers, as well as bereaved parents from around the country. All were eager to learn about how to run a successful group. The conference ends on Sunday.
Several interesting issues came up during my talk. One of the most interesting was the theme of parents' readiness to accept grief assistance. 2 experiences in particular caught my attention. The first question came from a nurse practitioner who worked in a center where parents come for genetic counseling. She described her experience with parents whose baby had very little chance for survival, yet the parents did not seem to comprehend the gravity of their baby's health. They had "hope beyond the odds". This nurse felt she had a lot to offer parents to prepare, but the parents seemed to be "in denial". Rose Carlson, a SHARE coordinator had a similar story. Rose has helped many parents in perinatal death. Rose's cousin delivered a baby born sleeping who died from many complications. The baby's death was anticipated. Rose's cousin did not see the baby @ her doctor's recommendation. Both these stories shows the helplessness providers feel when they have experience but the timing or place isn't right for parents. While help to grieve a baby's death is more available, some parents are unaware or not "ready" to receive it.
In the case of the nurse practitioner, the discussion; was about parents' need for hope. It is this hope "against the odds" that allows them to keep going. The "winning the lottery" kind of hope when everything is bleak. We need this kind of hope. One might just "win the jackpot" despite the odds. Faced with similar circumstances, we'd choose hope.
Rose felt similarly helpless. She had knowledge of what could be done, what could happen, and how to be helpful. To her dismay, everything "ill advised" happened as she anticipated; and Rose's sadness was that she couldn't prevent any of it. Rose's cousin lived out of state, and Rose was in contact with her aunt, who reported the cousin as doing "ok".
Both Rose and the nurse practitioner felt windows of opportunity were missed and worried about how the parents would deal with their grief, and while they didn't say this; worried about delayed or complicated grief. Both felt helpless and perhaps felt some guilt they could not intervene in the ways other parents have found comforting.
There was also discussion about the Turton & Hughes study. In this study, researchers reported mothers had PTSD symptoms in their next pregnancy following the practice of allowing them to see and hold their stillborn baby. The study produced controversy and led hospitals in the UK to ban the practice of hospital staff offering the mother the opportunity to see her baby.
How to proceed? This is the point in the road. Rose and the nurse practitioner were willing, able, experienced and knowledgeable about perinatal grief reactions. The parents' weren't able to receive what they had to give. Should every parent be treated the same? When should interventions begin? What should practices consist of? When are parents' ready? What happens to parents who refuse help? These questions are important. When do you treat grief?
For now, these parents do not seem to be asking for help. One hopes if and when they are ready, help will be there for them.
Some parents may do OK by themselves. Depending on their personality, social support, history, they may never seek nor require any outside help. Any help without invitation, could cause more distress and may interrupt their healing. This is called "resiliency" in grief studies.
We can't assume every parent will feel the same, and we can't assume everyone needs help. We just don't know if everyone will feel and react the same way. Sometimes we have to wait, watch for signs we know so well; or do nothing if parents don't request assistance, and hope they get help when and if they are ready.
No comments:
Post a Comment