Authors

1. Rittenmeyer, Leslie PsyD, RN, CNE

Abstract

Review question/objective: This systematic review seeks to:

Identify and synthesize the best available international evidence on how patients and families experience waiting while engaged with the healthcare system.

The specific purpose of this review is to systematically examine the scientific literature in order to identify the phenomenon of waiting in the context of healthcare. To this end the questions addressed in this review are:

1. What are the different types of waiting that occur when patients and families engage healthcare delivery systems?

2. How do patients and families describe the experience of waiting while engaging with the healthcare delivery system?

3. What emotions are expressed as a result of having to wait while engaging the healthcare system?

4. What is the experience of being on a 'wait list' to receive healthcare services?

Background: "Let's go." "We can't." "Why not?" "We're waiting for Godot."1 Through the eyes of Samuel Beckett's protagonists readers understand that waiting can sometimes become intolerable. Tanner (2002) philosophically examined medical waiting rooms within the context of contemporary American fiction and stated "the medical waiting room is marked by literal and symbolic assaults on autonomy."2^(p.117) In a study on waiting in a critical care waiting room, Bournes and Mitchell identified the essences and structures of the experience of waiting. They shared the voice of one of their participants. "I just sat there, wondering and worrying, what was taking so long and when they were going to call me to go back and visit." "The night waiting is completely different than the day because its dark and quieter[horizontal ellipsis]you start to think the worse."3^(p.60) Plowfield studied family experiences of waiting following neurological crisis of a loved one. The author found that the experiences of the participants in the initial phase of the crisis were divided into two themes, uncertainty and searching for meaning. Uncertainty included an altered sense of time, feeling of loss of control and a stress response. There was a common observation of the family participants in this study that there was a discrepancy between the meaning of time for the staff and the meaning of time for the family. In searching for meaning, the families had to learn the rules, find ways to gain control and find hope that there would be a good outcome.4 In a grounded theory study, vanDreven generated a theory on the experience of relatives waiting for news of a critically ill loved one. Four themes emerged: mothering, trust, flustered anxiety and institutional and medical power. The authors posited that there is a balancing of both positive and negative for the four themes. For instance, being asked to entrust the care of a loved one to a stranger, countered by feeling relieved to entrust the care to a professional. If the balance tips in favor of the negative, a harmful impact on the family's feelings of wellbeing can result.5

Thorne, Harris, Hislop and Vestrup studied the experience of waiting for diagnosis after an abnormal mammogram. They identified conceptual themes through a series of focus group interviews and grounded inductive analysis. The participant's accounts revealed the different ways in which women experienced time, their individual and common responses to waiting and the impact of health system factors.6 Regardless of outcome, waiting for a definitive diagnosis is often an emotional and sometimes agonizing experience for both patients and families.6-12 Thuczek, Kosik, Farrell and Rock studied how parents of infants who had abnormal results in cystic fibrosis newborn screening were affected psychologically. They concluded that waiting for notification of the screening results to diagnosis can be very psychologically distressing, causing depressive symptoms that vary depending on the parents' perception about the likelihood that their child has the disease.13 Portnoy conducted a study that examined how bracing for the results of a medical test may be psychologically distressing, but further has the potential to affect cognitive processing. Results from this study indicated that anticipating a possible negative test result increased cognitive distraction in the processing of information and consequently decreased recall ability of important information.14 Baily, Wallace and Mishel studied older men with a diagnosis of prostate cancer who made a decision to do 'watchful waiting' as an alternative to treatment. For some participants, the selection of 'watchful waiting' caused considerable distress; for others it allowed men to be in denial; because they didn't feel ill yet many recalled the emotional toll of living with the uncertainity.15 Mulcahy, Parry and Glover talk about the trauma of waiting and write "People who go through the medical system as a cancer patient learn one important lesson: the good patient is a patient patient. Waiting it would seem is a rite of passage for the cancer patient. The cancer experience is akin to sitting endlessly in a waiting room, where the patient is powerless to do anything but watch the clock."16^(p.1062)

In a concept analysis of waiting for healthcare, Fogarty and Cronin identified the critical attributes of the concept as "a period of measured time, subjective interpretation of the perceived significance of measured time, feeling uncertain and powerless and anticipation of a response to the healthcare need."17^(p.462) To this point, Sjoling, Agren, Olofsson, Hellzen and Asplund explored the experience of being on a waiting list for arthoplastic surgery, which caused the participants various forms of suffering. Some of the findings identified in this study were: no man's land; waiting to return to a normal life; a life on hold-a continuous struggle against a faceless system; living an undignified, meaningless life due to pain and disability; caring needs met; establishing a trusting relationship with a health care representative.18 Redko, Rapp and Carlson suggest that waiting time is a common barrier to substance abuse treatment. In a study that looked at the perceptions of substance users on treatment entry, they found that participants voiced that being on a waiting list caused some to give up on treatment and keep using, while there were others who maintained sobriety while waiting but used it as proof that they did not need treatment.19 Locsin and Martua studied waiting in the context of persons who had been exposed to Ebola Hemorrhagic Fever who had not yet developed signs and symptoms. The themes that emerged from this phenomenological study were helplessness in anticipation and fear of dying; premature death; agonizing over losing relatives, friends and loved one's; trusting no one; and helplessness and hopelessness.20

There is ample evidence to suggest that the concept of waiting in the context of healthcare delivery is a phenomenon of interest to healthcare practitioners. This review will synthesize the best available evidence in order to increase understanding of the concept and make recommendations for practice. A preliminary search of the Joanna Briggs Library, CINAHL and PubMed has revealed that there is currently not a systematic review (either published or ongoing) on this topic.