At any one time, there are 37 million or more caregivers in the United States, friends and loved ones doing their best to juggle caring for someone they love who is ill along with the busy and often-complicated, day-to-day lives we all lead. Studies demonstrate the critical importance of the role these family caregivers play in the outcomes for the patient, both physically and emotionally, and in controlling the cost of healthcare.
An article from the May 2011 edition of Healthcare Design summarizes one of these studies. There are many specific examples of how family/caregiver involvement is beneficial. Because patients are not always lucid, family members often are better able to remember and understand the instructions and comments of the medical team, as well as to be advocates for the patient’s wishes. Those that know the patient best are also more able to pick up on subtle cues that indicate patient stress and discomfort. Having a patient’s family as part of the medical team also reinforces the plan for care, both during the patient’s stay and after discharge. In fact, this support, in some cases, will allow for a quicker discharge as the patient will have someone with them who understands the level of care needed and who has already participated in that care during the hospital stay. This involvement and support also reduces readmissions and improves outcomes.
In 2006, the Magee-Women’s Hospital of University of Pittsburgh Medical Center implemented the Patient and Family-Centered Care Methodology and Practice, a systems-based approach to patient care experience to meet patient AND family member needs at each step in the care process. Information provided in June 2011 indicates that a review of 1,038 patients who underwent total hip or knee replacement in 2010 found that the program achieved high levels of patient satisfaction, functional status, and compliance with established evidence-based protocols, along with low infection rates and length of stay. The average length of stay was 3.0 days for total knee replacement, below the national average of 3.9 days, and 2.6 days for total hip replacement, also below the national average of 5.0 days. This underscores that family involvement and support can reduce the length of a hospital stay and costs associated with hospitalization.
The October 2003 edition of Military Report published “Effects of Nonlocal Geographically Separated Hospitalizations on Families.” In the report, nurses at a tertiary care center pediatric unit anecdotally noted that hospitalization of children from families residing outside the area (defined as more than 200 miles from the medical center) appeared to be more stressful than for families from the local area. The study set out to systematically identify the stressors associated with a nonlocal medical stay, to identify the coping mechanisms and resources used by these families to mediate their stressors, and to determine the effects of separation on family functioning.
The authors found that families who lived farther away visited less, spent less time per visit and reported more financial concerns. Privacy, sleeping arrangements, showering and eating were all topics of concern to these families. Staying in the hospital setting meant losing sleep due to uncomfortable sleep chairs, noise and interruptions. Eating was difficult due to cost, availability and selection. Although many families felt they were able to stay in touch with family at home, there was concern about maintaining relationships in the long term due to telephone expenses and time zone differences. Numerous financial concerns emerged—from things as simple as out of pocket expenses for toiletries, food, telephone calls over an extended period to rent, mortgages and utilities as work and wages were missed.
The study concluded that the following areas were the priority to address:
- communication with the health care team
- maintaining contact with family at home.
Hospital Hospitality Houses are at the forefront of intervention for families, addressing these very concerns through lodging programs, meals, social work services and some basic case management in tandem with hospital personnel.