Caring for the Child or Young Adult with SMA: Client and Caregiver's Perspective
SDL Self-Directed Learning
Watch an engaging video that shares four different personal perspectives of client and caregiver families living with SMA; Hear descriptions of “Walking in the shoes" of clients with SMA.
- The mother of an infant newly-diagnosed with SMA I reports her family's response to the diagnosis and outlines coping strategies for her family
- The mother of a young child with SMA I describes her response to and challenges for caring for her child
- A father and teenage son living with SMA outline the routine for and challenges of daily living at home for a teenager
- A young woman with SMA II describes her path to independence and self-fulfillment
Criteria for Successful Completion of Activity
- Complete entire Self-Directed Learning
- Complete evaluation with electronic signature
By the end of tis activity, the learner will be able to:
- develop an understanding and response to care for infants, young children, teenagers, and to care for young adults with SMA.
No relevant conflict of interest or financial relationships were disclosed for this educational activity by any of the authors or presenters.
Kathy Pfeiffer, RN has been a pediatric nurse for 32 years - 14 years as a PICU nurse and 18 years in home care. Currently Kathy is the Director of Pediatric Clinical Operations for Bayada Home Health Care. She develops pediatric policies, has clinical oversight of the Pediatric Clinical Operations managers that provide training for all new pediatric clinical leaders. Kathy is involved with the Sentinel Event review committee; transitions workgroup and pediatric certification program.
Brittney Mosher, mother of an 19-month son, Thomas. She has had home care nurses providing support to Thomas and her family since his discharge from the hospital. Thomas is diagnosed with SMA Type 1 and is ventilator-dependent. Brittney is an expert on the adjustment process of having nurses in her home. She has an extensive knowledge about SMA and care of the child with SMA that will benefit home care nurses who care for this pediatric population.
Dayna Rosado, mother of an 8-year old son, Jeremiah, who has SMA Type 1. They have had nurses caring for Jeremiah in their home for more than seven years. Over the years, they have discovered and developed effective ways to interact with nurses in order for Jeremiah to receive the best care and for their family to achieve as much normalcy as possible while caring for a chronically-ill child.
Al Freedman and Jack Freedman, father and son have lived with SMA all of Jack's life (20 yrs). Nurses have cared for Jack in their home for most of that time. They recognize the value of a holistic form of nursing to best meet the needs as a family. Al and Jack hope to enhance the nursing practice of the audience by demonstrating that home care nurses need to examine all realms of practice, not just the clinical. Nurses who seek to understand the culture of the family, in addition to maintaining proficient clinical skills, will blend into a family environment in ways that fully support pediatric clients and their families.
Erica Madge, a young adult woman living with SMA Type 2 who has received nursing care in her home for her entire life. She lives as independently as possible in her own apartment, graduated from college, and works full-time. Erica has gained valuable insight over the years about the components and value of superior nursing care and nursing interventions that are appropriate and meaningful to her family and herself.
- 1.00 Contact hours (ANCC)
- 1.00 Participation
If course is cancelled:
By BAYADA; if the education is cancelled for any reason the learner will receive a full refund for any applicable course fee. BAYADA will not be responsible for any associated fees or costs such as travel or lodging.
By learner; any applicable course fee will be refundable up until one (1) day prior to date registered for the education. After this date the course fee may be non-refundable. BAYADA will not be responsible for any associated fees or costs such as travel or lodging.
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