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Patient and Family Centered Care

Review of the benchmarks and history of family centered care in the child life field and review of a program.

Alexis Mauel

on 11 December 2012

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Transcript of Patient and Family Centered Care

Patient and Family Centered Care The History of Family Centered Care in Child Life Family Centered Care Family Centered Care Concluding Thoughts Picture taken in 1900 of investigators examining an overcrowded tenement apartment housing nine people. Photo source: PB Works, 2008. The field of child life evolved out of the dedication from individuals who recognized the lack of appropriate care for hospitalized children. Their research, insight, and determination changed public opinion and brought about change. The history of child life reveals the accomplishments made in developing an appropriate hospital experience for the child and allowing parents to have a hands on role in their child’s care. Below are key moments that highlight these achievements in family centered care. The Industrial Revolution: This period saw an increase in families moving to cities for work. However their living conditions were extremely poor and disease was rampant. Men, women, and children worked long hours in often dangerous conditions (Thompson, 2009, p. 3). Early 20th Century: The Hospital Experience for a Child A growing number of children needed medical care and were hospitalized. Medical facilities were not prepared or equipped to tailor their care towards the pediatric population. The result was inadequate social and emotional care (Thompson, 2009, p. 4). The majority of hospitals enacted protocols that prohibited parent visits and minimized the handling of patients by staff. Hospitals viewed parents as “nuisances” who disrupted routines, upset patients, carried diseases with them to the facility, and brought outside food which caused further medical issues to treat. Some medical professionals went as far as to worry that parents would threaten the selfless caregiving of the nurses (Thompson, 2009, p. 7).Visits from mothers were often an emotionally taxing event for both the child and parent. The child was showered with love and gifts, only for the mother to demand an affectionate response. Mothers would cry during their visit and partake in an exhausting goodbye process. Before leaving, the mother would complain to the nurse that the child wasn’t well cared for (Thompson, 2009, p. 7). Because of parents’ demeanor, administrators chose to exclude parents and bring in outside help for the care taking of the children. Hospitals allowed for volunteers and play ladies to interact with children as “substitute mommies and daddies” (Thompson, 2009, pp. 7-8). Picture taken in 1908 of a tenement apartment that housed a family of seven. Photo source: PB Works, 2008. 1920-30’s:
Play and educational programs were introduced into hospitals with the goal to educate, prepare, and normalize the experience for the child (Thompson, 2009, pp. 4 & 8). Mott Children’s Hospital in Michigan, Babies and Children’s Hospital of Columbia Presbyterian in New York, and Montreal Children’s Hospital in Quebec were a few of the first hospitals to implement play programs (Child Life Council, 2012).
In the mid 1930’s Anne Smith developed a play program at Children’s Memorial Hospital in Chicago. Play leaders addressed the distress of patients, provided daily activities, and oversaw the school program and library. They supported positive parental visits by educating parents on what items were appropriate to bring. Play leaders also coordinated outside entertainment and craft projects. Another successful aspect of the play leader’s role was educating staff on play techniques (Thompson, 2009, p. 8).

Research studies by psychoanalyst Rene Spitz and observations by pediatrician Harry Bakwin illustrated the negative impact hospitalization had on children. Both Spitz and Bakwin stressed the importance of “humanizing healthcare” to treat patients. Bakwin allowed for parents to have unlimited visiting rights and encouraged staff to “develop friendly relationships” with patients (Thompson, 2009, p. 6). Photo source: Child Life Council, February 8, 2012 Photo source: Child Life Council, February 8, 2012 1950’s:
10 hospitals in the US and Canada had implemented play programs in their pediatric wings (Thompson, 2009, p. 4).
Psychologist John Bowlby’s attachment/separation studies revealed the need for uninterrupted social intimacy between a mother and child (Thompson, 2009, p. 10). 1960’s:
In 1962 Emma Plank published Working with Children in Hospitals, detailing the work of the Child Life and Education Department at Cleveland Metropolitan Hospital. The book provided goals for a child life hospital program, including: providing space for the mother to stay with the child, expanding visiting hours, allowing staff to comfort the child when the parent leaves, having an open and honest atmosphere, and providing a play/visitation area for parents and children (Thompson, 2009, pp. 10-11).
In 1966 the Association for the Well-Being of Hospitalized Children and Their Families was established. It was later renamed The Association for the Care of Children’s Health (ACCH). The purpose of the organization was to promote developmentally appropriate care to patients and foster family-centered care (Child Life Council, 2012, Thompson, 2009, p. 13). 1970’s:
In 1978 ACCH opened its membership to parents (Thompson, 2009, p.14).
In 1979, ACCH created The Child Life Position Statement which stated the rationale for its work, defined necessary skills, and determined requirements for practice. The statement also recognized the importance of “maintaining family relationships and providing empathetic support to parents” (Thompson, 2009, p. 15). 1980’s:
In 1987 ACCH published Family-Centered Care for Children with Special Healthcare Needs, which presented 8 elements of family centered care (Thompson, 2009, p. 97). 1990’s:
Parents now held leadership roles, working to change healthcare policies to consider the living situations of the family. Their voices “raised the consciousness of the medical community to the complex dimensions of raising a chronically ill child” (Thompson, 2009, pp. 19-20).
The child life specialist’s role expanded to support the family in all its complexities.
In 1992, ACCH published guidelines outlined the role of the hospital in providing psychosocial care for the patient and family (Thompson, 2009, p. 20).
In 1994, Family-Centered Care for Children with Special Healthcare Needs was revised through the collaboration of professional and family organizations and health care providers. Re-titled The Family-Centered Care for Children Needing Specialized Health and Developmental Services, it is a significant resource for health care teams (Hollon & Palm, 2007, p. 98).
In 1997 the Child Life Council published the Mission, Vision, and Values statements which further reaffirmed the foundation for which specialists worked with children and their families (Thompson, 2009, p. 21). Today
Family centered care is an integral role of the child life specialist. Hospitals now recognize the many benefits to providing family centered care and have implemented this into everyday care. The ways a child life specialist incorporates family centered care will shift as the field expands outside the hospital into areas such as dental groups, private practice, and funeral homes. Photo source: Child Life Council, February 8, 2012 Photo source: Child Life Council, February 8, 2012 What is Family Centered Care? What defines a family? Benchmarks of Family Centered Care What does family centered care look like for a child life specialist? Element 1: Recognize that the family is the constant in the child’s life, while healthcare professionals and services systems often change.
Implementations for a CLS:
Ask the family and patient daily to identify their priorities for support and appraisal of their care plan.
Inquire daily how the parent wants to be involved in their child’s care and how this can be facilitated.
Welcome information, concerns, and evaluations from the patient and family. Element 2: Facilitate Parent and professional collaboration at all levels of healthcare.
Implementations for a CLS:
Foster respect for individual’s skills, knowledge, and care.
Engage in daily partnership of delivery of care, both in the creation and evaluation of services.
Actively seek out ways parents and children can be involved in planning and evaluating the hospital experience and services. Element 3: Honor the racial, ethnic, cultural, and socioeconomic diversity of families.
Implementations for a CLS:
Be cognizant of individual’s values, beliefs, and biases.
Recognize and respect each family’s values, customs, and experiences.
Identify the family’s support systems and engage appropriate resources whenever possible.
Be an example and advocate for culturally competent care. Element 4: Share complete and unbiased information with parents on a continuing basis and in a supportive manner.
Implementations for a CLS:
Continually assess the family’s understanding of the child’s condition and treatment plan.
Establish their preferences for receiving information.
Support the family’s desire to learn more about conditions and procedures by directing them to hospital and outside resources.
When providing information to a parent, use language that communicates compassion and respect in an effort to build their caregiving abilities and confidence. Element 5: Implement comprehensive policies and programs that provide emotional and financial support to meet family needs.
Implementations for a CLS:
Support the family’s ability to express their emotional, educational, spiritual, and financial needs.
Solicit recommendations from family members in a variety of methods (i.e. surveys, advisory councils, and suggestion boxes).
Be knowledgable about unit and hospital resources and encourage family to utilize these.
Value, respect, and facilitate private family time.
Uphold professional boundaries.
Find answers to family and patient questions or provide an update when a concern is still being looked into. Element 6: Recognize individual family strengths and respect various methods of coping.
Implementations for a CLS:
Do not make assumptions.
Unless harmful or illegal, respect a family’s method of coping.
Promote coping mechanisms and suggest new strategies.
When assessing a family, focus on their strengths and not weaknesses. Source: Thompson, 2009, p. 106 Source: Thompson, 2009, pp. 103-104 Element 7: Understand and incorporate the developmental needs of infants, children, and adolescents and their families into healthcare systems.
Implementations for a CLS:
Understand and encourage the child’s developmental stage.
Work with the parent and child to identify developmental strengths, needs, priorities, and goals.
Discuss sibling issues with parents and collaborate on appropriate interventions.
If a child’s mental or developmental ability has changed, help families in planning for new educational options and support interventions. Element 8: Encourage and facilitate family-to-family support and networking.
Implementations for a CLS:
Continuously inquire about the family or patient’s need for support and interest in connecting with peers.
When possible, facilitate families meeting one other.
Encourage the family’s research and use of community, national, and online resources and groups. Suggest resources that other patients have found helpful.
Understand that family members’ needs and interests for information change over time. Element 9: Design accessible healthcare delivery systems that are flexible, culturally competent, and responsive to the needs that families identify.
Implementations for a CLS:
Value all family member’s feedback for improving programs and facilities.
During family interactions, be aware of opportunities to respond to their cues and requests for information.
Create options for family members of all backgrounds and beliefs to participate in planning and evaluating their healthcare plan.
Seek to create relationships with families centered on collaboration.
Treat others how you would like to be treated, or want your family member to be treated in a medical atmosphere. Source: Thompson, 2009, pp. 107-108 Family Centered Care Benefits of Family Centered Care Importance of Family Centered Care Beanstalk Program As stated by the Institute for Patient and Family Centered Care (2010), the benchmarks for holistic healthcare include: Respect and dignity. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care. “The constant flow of caregivers repeatedly asked me about my son’s neuro baseline. After a while it is so painful to have to say it again. The CLS came into the room and gently asked what type of games Matt and I liked to play together and was there a favorite toy. Of course she needed to know his neuro status yet it was so sensitively worded.”
Dad of an 8-year-old boy
(Hollon & Palm, 2007, p.100) Information Sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision-making. “Don’t leave me out of the conversations when you are in the room. Am I invisible? Younger kids might not need as much information. Ask what I need. I am waiting for the test results too! Ask patients who they want with them when they receive new information.”
Dulcie, patient, 14 years
(Hollon & Palm, 2007, p.100) Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose. “The NICU team makes rounds daily to every patient room, and includes the parent, no just to answer their questions, but to collaboratively plan my baby’s care. I felt the loss of being part of the team when I moved to another unit.”
Mother of neonate
(Hollon & Palm, 2007, p.101) Collaboration. Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care. “My involvement on the Family Council and the Quality and Ethics Committees contributes my experience and those of other families right to the table where decisions are being made. We have much better outcomes and better plans when doing this together from the start.”
Mother of three children with chronic illnesses
(Hollon & Palm, 2007, p.101) Photo source: Child Life Council, February 8, 2012 Photo source: Child Life Council, February 8, 2012 Photo source: MiPCT Demonstration Project, 2011 Photo source: Child Life Council, February 8, 2012 The term “family” does not have a set definition, although most definitions recognized that it is composed of two or more people (Institute for Patient-and Family-Centered Care, 2010, Hollon & Palm, 2007, p. 98). However, the fluidity of the term can lend itself to describing many different types of families. Sometimes families are temporary and last a short time; in other instances a family endures a lifetime. A family is formed in different ways: birth, adoption, marriage, or need for a community. The makeup of a family is also unique and can include blood relatives, in-laws, friends, or significant others (Thompson, 2009, p. 96). Family centered care for a child life specialist is a way of thinking about and delivering health care experiences. It is more than having a customer service attitude; it’s a mindset of intentional collaboration and support to the child and family. A specialist working with a foundation of family centered care will be engaged with the family and support inclusion in all care aspects. In The Handbook of Child Life, Thompson (2009) connects the 9 elements of family centered care, as described in the The Family-Centered Care for Children Needing Specialized Health and Developmental Services, with child life performance standards. The following present a unique look at how specialists can focus their efforts to incorporate elements of family centered care. “Family-centered care is an approach to healthcare that is based on mutually beneficial partnerships between patients, families, and healthcare professionals.” (Thompson, 2009, p. 95). This attitude influences the “approach to planning, delivery, and evaluation of healthcare” by medical staff, patients, and families. Medical staff recognize the important role of families in supporting the patient’s health and well-being. Their acknowledgement of the “emotional, social, and developmental support” families provide as “integral components of health care” shape their interactions. Through family centered care, control and dignity are returned to families and patients. The family centered care approach influences hospital policies, programs, facility design, and the day-to-day interactions by staff. Benefits of family centered care include better health results, smarter allocations of resources, and improved patient and family satisfaction (Institute for Patient-and Family-Centered Care, 2010). In Thompson’s (2009) review of family centered care, the benefits for families and staff were outlined. Benefits of FCC for Families:
Patient satisfaction.
Family presence that is beneficial the child.
Less anxiety for the parent and overall satisfaction in the medical experience.
Collaboration that empowers the family.
Improved outcomes.
Increased confidence for all family members.
Increase in quality of life.
Increased feelings of the individual to feel they have control in important life situations.
Support parents’ innate role as guardians and caregivers. (pp. 99-100) Benefits of FCC for staff:
Rewarding work environment and experience for staff.
Positive attitude about the impact of their work.
The giving of emotional support by staff is reciprocated back by families and other staff.
Improved job performance.
Lower turnover rates.
Lower healthcare costs. (pp. 100-101) Family centered care is important in supporting the family unit during the healthcare experience. Experience has shown that one size does not fit all when it comes to the care of children in the hospital. Family centered care enables medical staff to recognize each family’s unique dynamics and needs and develop a care plan that is appropriate. The benefits to family centered care described above demonstrate the importance for just not the family, but the medical staff as well. Staff’s positive attitude and rewarding experience will fuel their enthusiasm and participation in delivering family centered care.

According to Rollins, Bolig, and Mahan (2005), “family centered care recognizes that family members know their child best” (p. 179). In recognizing the family as the experts on and constant support for that child, actions must be taken to include them in the planning of medical care. As described in the 9 elements of family centered care and implications for a specialist, this takes place on many levels and outlets for a child life specialist. Beanstalk Program The Hospital for Sick Children, Toronto, Canada “The Beanstalk Program is based on the general philosophy of providing developmental care, which is a multidisciplinary approach, incorporating environmental and caregiving modifications with parent and staff education to enhance infant and family outcomes” (Patterson, So, & Patterson, 2005, p. 149). The program addresses the developmental needs of infants 3 years and younger during long-term hospitalization of 3 weeks or longer (p. 150).

The Beanstalk program takes place in the Pediatric Academic Multi Organ Transplant, Nephrology, Gastroenterology, and Rheumatology Unit 6A (Patterson, So, & Patterson, 2005, p. 149). Established in 2002, the Beanstalk Program has expanded to 3 other wards within the hospital and into another pediatric hospital in Ontario, Canada. Approximately 10-15 children are part of the program each year on unit 6A (So., personal communication, December 6, 2012). The developmental care team consists of: physiotherapy, occupational therapy, social work, nursing, and child life services (Patterson, So, & Patterson, 2005, p. 149). Affects of Hospitalization for Young Children and Families The sterile hospital environment inhibits the experiences and interactions needed to promote normal development. Medical stability for the child is prioritized over their developmental needs, which decreases the opportunity for growth. In this hectic and over-stimulating environment, many staff are in and out, with interactions intrusive and painful. The inconsistent schedule and treatment plans cause disruption in sleep patterns for the child. Parent/child bonding and interaction is also hindered. The child’s treatment procedures, fragile condition, and medical apparatus can cause separation or strained interactions between parent and child (Patterson, So, & Patterson, 2005, p. 150). As described by Patterson, So, & Patterson (2005), the affects of lengthy hospitalization on a child can be seen in the following behavior:
Social and exploratory passivity
Inhibited perception of ability to move
Narrow range of affective expression
Disinterest in fine motor tasks requiring hand-eye coordination
Minimal vocalizations (p. 150) (p. 150) Goals: Goals for the Beanstalk Program include: providing an optimal care environment, creating positive experiences, and fostering continued education. Objectives: Patterson, So & Patterson (2005) outlined three objectives in the areas of environment, experience, and education.
To optimize the environment on 6A in order to improve developmental outcomes of children experiencing prolonged illness and hospitalization.
To foster positive family experiences that promote optimal developmental interactions.
To provide ongoing education for parents and multidisciplinary team members related to normal development and age-appropriate interactions/play strategies. (pp. 150-151) Delivery of Program:
A program logic model was created to outline components, target groups, activities and educational information for each target group, and short and long term outcomes for each target group (Patterson, So, & Patterson, 2005, p. 151). The model broke out all information in an easy to follow flow chart to visually outline the program (Child Life Council, 2012). Equipment and resources were purchased to support the developmental growth of patients. An infant area in the playroom was created for therapy and parent interactions (Patterson, So, & Patterson, 2005, p. 151).

Once eligible children are identified by the team, parents are provided program information. Each child’s process through the program is tracked on the Beanstalk Checklist by team members. Monthly case reviews are completed by the Beanstalk Committee to assess all participants. A Methods Worksheet tracks data about the delivery of the program and areas for refinement (Patterson, So, & Patterson, 2005, p. 151). Roles of Team Members
Each department’s role was established during program design. For the child life specialist, their role in the program include: Supporting the achievement of social-emotional and developmental milestones by utilizing sources such as the playroom, toys and activities. Specialist are also identified as supporters for the parents’ increased ability to guide the development of their child (Patterson, So, & Patterson, 2005, p. 151).

Volunteers are also included as valuable team members for the Beanstalk Program. Those volunteers who express interest in the program are educated by the team on the techniques to support the emotional and developmental needs of the patients and families. Volunteers are also identified by their abilities for long and short term commitments (Patterson, So, & Patterson, 2005, p. 152). Review of Family Centered Care Elements for the Beanstalk Program The following reviews the Beanstalk Program on its implementation and execution of family centered care benchmarks. Information Sharing
With the goal of the Beanstalk program to educate both family and staff on developmentally appropriate interactions for an infant, the program well exemplifies this benchmark. Parents are educated in their role as supporter’s of their child’s development and provided the appropriate tools and skills to foster further development. Materials such as posters and educational pieces are tailored for each child, so their family is given the most pertinent information for their specific needs. Program staff such as child life, nursing, and occupational therapy help in providing education and support. Staff and volunteers are provided educational information through elements such as in-services, hand out materials, and posters and cues placed throughout the hospital and patients rooms (Patterson, So, & Patterson, 2005, pp. 150-152). Participation
In the Beanstalk Program, parents are encouraged to take an active role in caring for their child on a daily basis. All program staff are cued in their roles to educate the parents on care taking tactics and encourage this daily interaction. Through staff empowering parents, they can become confident in their skills and knowledge of care-taking, and subsequently confident in their role collaborating about their child’s treatment plan. The clinical nurse specialist plays an important role in understanding the family’s expectations for their child’s care, monitoring the family’s abilities to care for the child, and providing consistent communication to the team and family (Patterson, So, & Patterson, p. 151). Collaboration
The focal point of the Beanstalk Program is to connect the family and multidisciplinary team in provide the best outcomes for the patient and family during their hospital stay. As noted already, this collaboration takes place in a variety of ways and settings, and involves staff from different departments. To ensure patients and families are receiving the most out of the program, staff keeps records through checklists and worksheets specifically designed for the program and monthly committee reviews are conducted (Patterson, So, & Patterson, p. 151). At the time this research paper was concluded, I was awaiting further communication from Beanstalk team member Stephanie So about how family feedback of the program was recorded or welcomed. Considering the amount of recording and collaboration for the program, I would infer that parent feedback is collected upon graduating out of the program. However this cannot be confirmed at the moment. Respect and Dignity
Even though not stated in the program description, it can be inferred through the program goals and implementations that dignity and respect are not only methods of interaction but end results as well. To work to support the parent’s role in their child’s care and wellbeing means that their opinions and viewpoints will need to be considered to progress the family in a positive direction. The program takes an individualized approach to supporting the child, which means their family’s values, beliefs, and culture will need to be considered to create an effective care plan. Staff develop bonding activities that are meaningful to each family, which also infers that the family’s values and culture are considered in make experiences appropriate for that family. With the goal of creating a “home-like” hospital room atmosphere, staff will continue to keep the family’s culture in mind to create a space that is reflective of who they are as a family (Patterson, So, & Patterson, 2005, p. 150).
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