Family-Centered Care Research


	-	Community Resources

	-	Financial and Insurance Information

	-	Government Relations and Advocacy

	-	Lodging and Food

	-	Medical Records

	-	Patient Services

	-	Secure E-mail to and from Packard Children’s Health Care Providers

	-	Tours

	-	Visiting Information

	-	Who's Who

Family-centered care is a philosophy of health care that promotes a set of general guidelines for the delivery of health care supportive of children and their families. In brief, research provides a base of evidence upon which to make decisions about the implementation of family-centered care in hospital settings. Research aids in the translation of general guidelines into specific actions. It provides insights into:

Parent and provider preferences
Factors affecting health care practices
Best conditions for change
Outcomes related to the implementation of family-centered practices

The Family-Centered Care Program at LPCH is conducting research that will provide direction for its continued implementation of family-centered practices.

Current Studies
Completed Studies

Current Studies

Shared Decision Making
Parents, nurses, nurse practitioners and doctors are participating in a study examining the role of parents in health care decisions. The study will provide valuable data on parental preferences for degree of involvement in medical decisions affecting care during their child’s hospitalization. In addition, study findings will indicate the degree to which factors, such as trust and parental efficacy, influence parent-provider decision-making.

Approximately 150 parents and over 30 health care providers from LPCH’s Intermediate Intensive Care Nursery (IICN) and 3 West Organ Transplantation unit are participating in the study. The results of this study will be used to guide the development of training programs to strengthen partnerships between parents and professionals in the hospital setting.

Back to top

Completed Studies

Defining Family-Centered Care
A qualitative study was conducted to identify the degree of consensus regarding approaches to family-centered care from both the clinical and organizational change perspectives. Specifically, we were interested in:

Perceptions of parents and health care providers regarding family-centered practices in clinical settings
Degree of consensus between parents and health care providers on what constitutes family-centered clinical practices
Perception of parents, health care providers and hospital management on what constitutes a family-centered hospital in organizational terms

This two year study included one-on-one interviews with 40 parents and 50 hospital personnel as well as numerous parent, professional and combined parent/professional focus groups. Interviews and focus groups included parents of children with diverse socioeconomic and health statuses. Professional interviews and focus groups included a broad section of health care providers including, nurses, physicians, allied health care providers and hospital managers.

Clinical Practices: Findings indicated that both parents and health care providers defined family-centered clinical practices according to three different clusters of actions or beliefs

Family Support
Family Partnership
Family Efficacy

No trends were found in parent vs. provider adherence to a particular approach. However, parents tended to move between approaches depending on the child’s health status or family situation.

Organizational Practices: Analysis of the parent and professional interviews regarding “the Family-Centered Hospital” indicated similar findings. Definitions tended to cluster around the three different approaches identified above. Differentiating themes included:

Role of family advisory council
Level of parent participation on committees
Opportunities for parent determination of role
Role of the clinician in change
General view of how change occurs

Maternal Efficacy to Care for a Child with Chronic illness
This study examined the maternal efficacy beliefs to care for a child with chronic illness of 35 mothers of hospitalized children less than 10 years of age diagnosed with liver disease. This was a mixed methods design incorporating quantitative and qualitative methods. Participants completed a set of surveys that measured:

Maternal efficacy beliefs as well as parental stress
Depression
Social support
Years since diagnosis
Child characteristics
Use and importance of role models

In addition, a semi-structured interview was conducted.

Findings indicate that, with socioeconomic status and disease severity controlled, parental stress, child characteristics and the use and importance of role models were significantly associated with maternal efficacy beliefs to care for a child with chronic illness.

The qualitative analysis provided preliminary evidence that maternal behaviors related to the health care domain (e.g. defining the health care system, seeking information and forming partnerships) tended to cluster according to the level of self-efficacy while maternal behaviors related to the family and social support domain (e.g., nurturing the child, maintaining the family and social support) showed similarities across levels of self-efficacy beliefs.

The findings of this study argue for increased attention to the function of self-efficacy beliefs in the maternal adaptation to the role of caring for a child with chronic illness.

A Training Program to Increase the Maternal Efficacy of Mothers Caring for Children with Chronic Illness
This study examined the strength of a training program for 40 mothers to care for their child with chronic illness to increase their perceptions of efficacy to manage their child’s health care, improve their affective status and increase parent satisfaction. Parent participants included mothers of children with liver disease both before and after transplantation. Information on the following variables were collected prior to and after a 10 hour training conducted by a Parent Mentor and a health care provider:

Maternal Efficacy Scale
Beck Depression Scale
Parental Stress Index
Parental Management Skills
Family Satisfaction

The training program was comprised of three, five hour training sessions and consisted of information and discussion on the following topics:

Disease Specific Information
Partnerships with Health Care Providers
Helping Your Child with Procedures
Negotiating the Health Care System
Coordinating Community Health/School Services
Navigating the Insurance Maze
Normalizing Family Life
Developing a Family Plan

In addition, each parent participant was assigned a trained Parent Mentor. The parent participant and Parent Mentor had weekly contact to discuss training topics. Post surveys indicated a significant decrease in parental stress with an increase in perceived maternal efficacy to care for a child with chronic illness and increased satisfaction with the health care experience (* p <.05).

Back to top

Lucile Packard Children's Hospital is located in Palo Alto, adjacent to Stanford University Hospital, approximately 20 miles north of San Jose, CA and 40 miles south of San Francisco.

Lucile Packard Children's Hospital
725 Welch Road
Palo Alto, California 94304
(650) 497-8000