Life in the City with Mat Krepicz - Trends in Diversity, Housing, Aging & Living

The Toronto Central Palliative Care Network hosts Mat Krepicz, Toronto social policy research analyst, on citywide demographic changes in "Life in the City: Trends in Diversity, Housing, Aging & Living"

In partnership with the City of Toronto, the Toronto Central Palliative Care Network is pleased to present an intimate session where Mr. Mat Krepicz (Senior Analyst, Department of Social Policy & Research, City of Toronto) will provide us with an introduction to the demographics of the City of Toronto with an emphasis on recent trends and possible future developments. These include changes in ethnic composition, language mix, aging, income distribution, and crime. A brief overview of monitoring systems such as Neighbourhood Wellbing Indices will also be provided.

This session is open to the entire network, their staff, board members, partners, and friends.We welcome and encourage all to come!

Sunnybrook NICU seeks parent support coordinator

As covered in Healthzone's "Hospital want-ad targets parents" and Marketwire's "Calling All Moms and Dads: Sunnybrook is searching for the perfect parent to join its Neonatal Intensive Care Team", Sunnybrook's NICU at Women's College recently posted Canada's first job posting for a paid, temporary, part-time Neonatal Intensive Care Unit parent coordinator.

The job posting at Sunnybrook Health Science Centre reads:

We have a temporary part time opportunity for a Parent Coordinator to work in the Neonatal Intensive Care Unit at our Women's College site in downtown Toronto.  Reporting to the Patient Care Manager of the NICU, the Parent Coordinator is a liaison between staff and parents whose baby(s) are currently in the Sunnybrook Neonatal Intensive Care Unit. The Parent Coordinator works to ensure that parents are active members of the health care team. In order to fulfill this role the Parent Coordinator must be the parent of a graduate from the NICU at Sunnybrook. The role includes (but is not limited to) the following:
  • Acts as a liaison between NICU families and all members of the health care team
  • Develops and coordinates support to families in the NICU and Neonatal Fellow Clinic
  • Is the co-chair of the Sunnybrook NICU Family Advisory Council
  • Provides individualized support to current NICU families as desired. This is an optional partnership and families may chose not to be involved with the Parent Coordinator
  • Provides information to families about community resources that are available and updates this information as needed
  • Participates in the design, implementation and evaluation of services, programs or systems that enhance services to infants and families
  • Participates in improving organizational performance through recommending areas or approaches for improvement activities
  • Provides education for families and staff based on input from families using strategies that facilitate learning and open communication
  • Provides education to all new staff, students and trainees on principles of Patient & Family Centred Care
  • Participates in NICU committees (Unit Coordinating Team, Neonatal Intensive Care Quality Improvement Project, Quality Assurance, Transition committee, others as the PCM determines to be relevant)
Skills and Qualifications:
  • Applicant must be a parent who have had a baby in the Sunnybrook Neonatal Intensive Care Unit who was born at < 32 weeks gestation &/or any parent who had a baby in the Sunnybrook NICU for > 1 month and who's graduate child is now older than 1 year.
  • Must have completed Secondary School education
  • Demonstrated computer skills in MS Office and Outlook
  • Excellent oral and written communication skills

Today, most hospitals in the United States have at least one paid family role. Kudos to Sunnybrook NICU!

Remembrance, celebration, siblings and work around Sasha's month

June 6 is Sasha's birthday and June 20 is the day of her death at age 2. This anniversary was particularly poignant for me because we have started talking about Sasha with her sisters. I was surprised that Eve, aged 2, was the first to ask about Sasha. Sitting on my lap, watching family videos, she pointed to a picture of Sasha and asked me to play it. Afterward she asked, 'Where is Sasha?' Pleasantly startled I took a few seconds to think about my reply and then I touched my heart and said 'Sasha is in our hearts, she is everywhere when we think of her.' At the moment it was the best I could do. She seemed ok with the answer and jumped off my lap and went to play with toys. A few months later in May, Mia, almost 4, asked why we were going to the cemetery. I told her that Sasha is buried at the cemetery and we were going to visit her. She asked why Sasha is in the cemetery. I explained not for the first time that Sasha had died because she was born with a body that did not work well and we tried to help her but her body stopped working. I remembered reading that it is not good to say she was sick, so they are not afraid when they are sick. The other big event in June is Mia's birthday one day after Sasha's death which was a very fun time at an indoor playground. We are still working out how to celebrate Sasha with our kids so young - hopefully next year we will feel bold enough to light a cupcake candle with Mia and Eve for Sasha on her birthday. As you all know, work at SickKids is a way to give back to amazing staff and families and to honor Sasha's memory. The last few months have been very busy; here are a few highlights.

Palliative physician Christine Newman receives Robert Salter Humanitarian Award

Congratulations to SickKids palliative care physician Dr Christine Newman on receiving the Robert Salter Humanitarian Award from SickKids Foundation, among the most prestigious family-centred awards at Hospital for Sick Children. Chris, along with Maria Rugg, Laura Beaune and Maru Barrera, in addition to all their care practise, have been constant guides and mentors to parents wishing to assist the palliative and bereavement service at SickKids. The humanitarian award nomination letter for Chris by staff and families is an inspiring and emotional read about Chris's work with families and other staff. When Catherine Fenton describes the home care of her daughter Carmen she sums up in one sentence the essential power and challenge of the palliative intervention: "Chris sees the dignity and beauty in dying and death, and coaxes people to stretch and meet her there.” This award recognizes the excellence of Dr Christine Newman and honors SickKids palliative care service widely.

Bereavement Committee retreat

The work of SickKids Bereavement Committee was shared at a June 29 retreat. The Bereavement committee has since the summer of 2009 reviewed all procedures relating to death at SickKids Hospital. The need, as identified by the committee, is for a hospital wide culture of support for healthy grieving, palliation and end-of-life care. Thanks to parents Mitch Blum and Catherine Fenton for working with a dozen or so staff over almost a year to review palliative and bereavement policy and procedures, hospital education, resource development, clinical practice and research. Margaret Keatings hopes to publish recommendations of the Bereavement Committee by September 2010.

NICU family care committee works on communication and parent to parent support

Three subcommittees have started on the NICU Family Care Committee to explore parent peer support, technologies and use of walls and space. The technology group met over a conference call and will work on proposals to setup webcams on isoletes so parents can see their children when they are not in the NICU and offering email communication with some doctors (happens informally now) to understand the type of questions asked and the benefit of this additional communication tool. We are also building a website to share projects, resources and generally expand the visibility of the advisory group. The parent peer support group also had their first meeting to share examples of successful programs, principally in other Canadian NICU settings.

2010 Patient Safety Symposium: Furthering Parent Involvement in Patient Safety

June 10th I spoke with parents Denise Clayton and Jane Ford at the 6th Annual Patient Safety Symposium about expanding parent participation in patient safety. I was asked to join the Partners in Patient Safety Committee which has an outstanding record of joint staff and parent work on safety initiatives. One of my particular interests is the Required Organizational Practise of Accreditation Canada related to "Client and Family Role In Safety" (see page 9 of the ROP document), specifically, that "Staff uses written and verbal approaches to inform and educate clients about their role in promoting safety".

CFAN Winnipeg workshop 2010

I will attend the annual Canadian Family Advisory Network Workshop on October 17 in Winnipeg and am very honored that CFAN member Ruth Hartanto invited me to speak during "Sydney's Talk", named after her daughter Sydney. I earlier linked to Ruth's beautiful sharing of Sydney's life and death in the Globe and Mail in April. This year's CFAN workshop theme is "Branding and Blogs: the power of using media tools in family centred care", which is most topical. This workshop will be an incredible opportunity to meet and share ideas with veteran parents working with staff in hospitals across Canada.

2010 Sasha Bella Fund awards: CCCU nurse Elena Nikolsky and social worker Ruta Niedra

In April, two recipients were selected by peers and myself for Sasha Bella Fund awards for exemplary family-centered practice in the Labatt Family Heart Centre. On May 11 at the yearly Nursing Excellence Awards, CCCU nurse Elena Nikolsky received the Sasha Bella Award for Excellence in Family Centered Care for extending her clinical nursing practice to a Registered Nurses Association of Ontario research fellowship focused on parent supports in the ICU, specifically nurse sensitivity to the diversity of family coping styles. On June 10, as part of the Dr. Beverley Antle Legacy of Hope Award Ceremony, social worker Ruta Niedra was chosen to receive the first Sasha Bella Fund award given to an allied professional for Excellence in Family Centered Interprofessional Care. Ruta has served families and supported and mentored staff at SickKids for almost 25 years in a very special way, as attested to by an unprecedented nine letters of supports (see extracts). Currently on Cardiac Transplant, Ruta was instrumental in setting up the Labatt Family Heart Centre weekly parent coffee hour and a first LFHC Family Education Day held in 2009.