Use of electronic media in a pediatric palliative aquatics program: Legacy, teaching, research and caveats
awareness; brother; California; child; conference abstract; documentation; face; female; grief; hearing; heat; hot water; human; literature; male; memory; motion; palliative therapy; pediatrics; photography; physician; sound; teacher; teaching; touch; videorecording; voice
Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in a pediatric palliative aquatics program operating within a pediatric palliative care facility in California. Evaluation: Electronic media has changed many facets of daily life, including providing palliative care to medically fragile children. Its use provides families with an "electronic biography" of their child and offers siblings a connection to a brother or sister who might have died before their birth. Oral histories are further supported with video data, thereby providing families with an enduring legacy. Loved ones unable to be present at events in "real time" can enjoy the electronic version of the child's experience. The legacy created in this manner exists beyond the grief of the present moment, extending into a time when painful memories become muted, allowing families to remember joyful events in the child's life. Families can photograph and video the child's responses to aquatic sessions, documenting movements and abilities virtually impossible for the child on land. Information can be shared with pediatric care practitioners using electronic media, providing them with detailed documentation of the patient's responses and enhanced abilities during warm water sessions. Consent is always obtained prior to facility use. As always, precautions against inappropriate use of electronic media during aquatics sessions must be assured. Public use of specific photos and film are sensitively screened for appropriateness. In researching program outcomes, the child ultimately becomes both subject and teacher during palliative aquatic sessions. Individual patient responses to sessions can be documented over time, allowing researchers opportunities to observe in slow motion subtle reactions of the patient to movement and touch. The aquatic practitioner-trainees' sense of touch, sight and hearing becomes more acute as s/he observes a child's facial and body reactions to movement, warmth, water pressure and sound. In our ongoing work of training new practitioners, appropriate use of electronic media and careful documentation of sessions has become one of our most valuable teaching tools.
Pyatt S; Fisher J M
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Pediatric palliative care-child life beyond the hospital
bereavement; ceremony; child; child parent relation; childhood; conference abstract; controlled study; coping behavior; education; emergency care; health care need; home visit; human; memory; palliative therapy; psychosocial care; respite care; sibling; skill; voice
Program Goals: Historically Child Life Specialists (CCLS) have done the majority of their work in healthcare settings such as pediatric acute care hospitals and clinics. As children are living longer with chronic diseases, CCLS are using their knowledge and skills to provide innovative care in Pediatric Palliative Care and home settings. Evaluation: Using fundamental skills of therapeutic relationship building and play-based communication, CCLS are able to assess needs and provide interventions that meet the unique needs of each child and family member throughout their continuum of care. In this setting, we have the freedom of time, often over a period of several months and even years. We may spend time with the patient/ family during respite care, home visits, holiday events and other occasions. The Child Life Assessment includes factors such as the child's growth and development, physical strengths and limitations, diagnosis, treatment, communication methods, coping skills, family systems, cultural beliefs, community support/resources and other health care, family and child variables. First and foremost our goal is to let the child be a child and have everyone understand and support the strengths of each child. This relationship specifically allows each child and family to establish goals of care unique to their child and advocate well throughout the continuum of care. CCLS can then offer support and maintain the child's developmental milestones despite their medical challenges. The CCLS can also reaffirm the child's life, life review and life closure when the time is right. Also important, CCLS can help siblings to have a voice that is respected and honored in the family and facilitate opportunities to continue this role throughout their childhood. We can also support and nurture parenting through the tough times and as developmental change occurs with both affected children and their siblings. CCLS provide psychosocial support to facilitate expression of thoughts and feelings, self-expression, legacy leaving and memory making. We involve children in discussions and decisions about their medical condition and treatment when medically appropriate, and provide tools to enhance their coping strategies. We provide bereavement opportunities for the dying child and the whole family.
Case C; Fisher J M
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).