Familiesʼ Experiences of Having an Adult Family Member in a Critical Care Area: A Systematic Review of Quantitative Evidence

Review question/objective The intention of this review is to examine what it is like to have a family member in a critical care area, and to use this information to generate recommendations for best practices, as an anticipated outcome. As such, this review intends to synthesize available knowledge about family needs so that conclusions can be drawn that: firstly, are directly relevant to practice; and secondly, provide an understanding of how family members report these experiences; and thirdly, determine the extent to which family needs are met and unmet. More specifically, the review seeks to: Prioritize the expressed needs of family members across the Critical Care Family Needs Inventory (CCFNI) dimensions of support, comfort, information, proximity and reassurance. Determine those CCFNI dimensions that could influence overall positive feelings regarding the experience of being a critical care family member. Compare the outcomes of the CCFNI between families and nurses Describe and recommend best practice specific to identified needs of critical care families. Background In 2001, the Institute of Medicine in Washington, D.C (USA) published recommendations that healthcare delivery systems need to become more patient-centered.1 p187 Among the recommendations made were that patients and families need to be kept informed and actively involved in decision-making and that healthcare delivery systems need to provide for the comfort and emotional support of patients and their family members. Healthcare providers often fail to acknowledge or appreciate the needs of family members as they give priority to the welfare of a relative being treated in a critical care area. Yet, concern for the family of critical care unit patients is necessary for the humane and dignified provision of holistic care in these areas. Critical care family members may be as vulnerable as their hospitalized family member, and experience varying responses to hospitalization such as denial, panic, or even debilitating physical symptoms.2, 3 Families are integral to the healing process of a critically ill family member as they often share in decision-making, provide medical history, and offer a sense of security to the loved one. The critically ill patient places a high value on the presence of family members, reporting decreased levels of anxiety and increased levels of comfort when family members are present.4, 5 Several studies have demonstrated that patient-centered care involving members of the family is associated with better clinical outcomes.6, 7 Nowhere is the need for patient-centered care greater than in the intensive care/critical care unit, where critically ill patients are often unable to communicate with healthcare providers or participate in care decisions; this responsibility is left to family members.8, 9 Yet, clinical decision-making and day-to-day care often makes families feel uninformed and disenfranchised when a loved one is in critical care.10 Typically, family members often have first-hand insight into patients' preferences and emotional and physical responses, and can make important contributions to care decisions. While there is general consensus that involving families in the care process is important and that such involvement may have a positive effect on both the family and the patient, the ways in which to accomplish this are not entirely clear. In fact, some studies have reported that family members are considered a burden by staff who must juggle the emotional needs of families and the emotional and physical needs of the patient at the same time.11 Equally, anxiety from family members' unmet needs have the potential to be detrimental to patient care through disregard for the treatment regimen, distrust of nursing staff, or even threat of a lawsuit. These feelings can be transferred to the patient.12 As knowledge concerning the experiences of families is an initial step in providing humane and dignified care for family members, this review will not only examine the perceptions and needs of adult family members in a critical care area, it will also attempt to quantify their perspectives. Many studies of the needs and concerns of families in these areas are based on Molter's Critical Care Family Needs Inventory (CCFNI).13 Molter, using information from structured interviews with 40 relatives of critically ill patients, ranked ordered need statements according to importance and fulfillment. This instrument consists of 45 need statements, rated on a scale of 1 (not important) to 4 (very important). Items from the CCFNI represent five dimensions: need for support, need for comfort, need for information, need for proximity, and need for reassurance. Quantitative studies utilizing this method, though useful, may limit a family's spontaneous expressions of issues and concerns not identified by the instrument used. Reliance on this tool for data collection, although it is limited in scope and may prevent additional aspects of family experiences from emerging, nevertheless provides an effective quantitative measure of family experiences in the Critical Care setting. The interactions revealed through qualitative analysis does yield rich descriptions of human experience that are generally not part of quantitative studies. Nevertheless, the Molter tool is useful because it offers a quantitative dimension to and significant degree of overlap with qualitative approaches. For example, using a grounded theory approach, Coulter conducted interviews with 11 relatives of patients in an adult critical care unit in the United Kingdom.14 Six themes emerged: shock of admission and knowledge of critical illness; coping; information needs; social support needs; personal satisfaction needs; and the need to retain hope. Note that Molter's “need for information” and “need for reassurance” categories are particularly relevant modes of inquiry as compared to this study. In a series of studies, Warren and other authors revealed that being a part of care, trusting professionals, and maintaining a positive outlook were important to families, and that failure to meet these needs resulted in disorganization, an inability to mobilize coping resources and more anxiety.3, 15, 16 Some researchers have identified that better communication, the provision of unambiguous information, flexible visitation, cultural support, family conferences and family presence on rounds and during resuscitation may have a major impact on the experiences of family members.17, 18 When compared to the conclusions from these studies, the Molter tool shows a significant degree of overlap, particularly in the areas of communication and family support. Indeed, it is this provision of quantitative dimensions in a realm that is almost exclusively served by qualitative research that makes Molter's quantitative tool so useful. Furthermore, communication may be an important mediator in family satisfaction. Soderstrom, Savernan and Benzien reported that some families experienced a need to “crack the code” of implied messages.17 p710 For example, when the nurse remarked, “You can visit the patient whenever you want” the implied and unspoken message was “as long as you do not disturb us in our work'”.17 p710 Families able to decode staff messages felt satisfied and well treated by staff during the critical care stay, while those unable to do so reported feelings of isolation and mistreatment by staff. Fry and Warren also reported that language, which is often technical and reflecting an empirical view embedded with authority is a key element in interpretation of meaning.3 They suggest that rephrasing to more “down-to-earth, simple terms” is a better way to connect with the family.3 However, the level of evidence of these interventions, and the best way in which to implement them, has not been established. A search of the Cochrane and Joanna Briggs Libraries of systematic reviews was performed and no existing or ongoing systematic review on this topic was identified. Keywords: critical care family needs inventory, CCFNI, intensive care, critical care, needs, perceptions, experiences, family members. Inclusion criteria Types of participants The review will consider publications were the focus is the family members of an adult patient in a general critical care unit or intensive care unit or specialized critical care areas such as: burn units, trauma units, coronary care units, neurosurgical intensive care units (herein referred to as critical care areas), who have completed the Critical Care Family Needs Inventory CCFNI. Participants may include family members and/or patients if the patient was asked to fill out the inventory with his/her family in mind; and secondly, nurses or other hospital staff who provided information about the needs of family members through completion of the CCFNI. Phenomena of interest This review will consider any studies using the Critical Care Family Needs Inventory CCFNI to delineate the expressed needs of family members with an adult family member in a critical care area. Types of outcomes Outcomes of interest are the reports of family members needs as measured by the Critical Care Family Needs Inventory CCFNI, as these are considered to be closely connected to families' experiences when an adult family member is a patient in a critical care area. These outcomes may be positive or negative, as expressed by family or reported by patient and/or staff. Types of studies This review will consider quantitative studies that draw on the experiences of families with an adult family member who is a patient in a critical care area using the Molter Critical Care Family Needs Inventory CCFNI tool. Qualitative studies will be excluded unless they also use the Molter tool as a method of quantitative inquiry. Quantitative studies that do not use the Molter tool, as well as opinion papers, commentaries and reports will not be considered in this review. Although randomized controlled trials are preferred and will be sought first, other quantitative designs such as case control, cohort and case series will also be considered. Search strategy This review will consider English language quantitative studies written during the period 1979-2011, that draw on the experiences of families with an adult family member who is a patient in a critical care area using the Molter CCFNI tool. Although research on family members of the critically ill began to be published during the mid-1970s, only studies published in or after 1979 will be included, as this was the publication date of the Molter tool. The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in each component of this review. Firstly, an initial limited search of MEDLINE and CINAHL (including Pre-CINAHL) will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken. Thirdly, the reference lists of all identified reports and articles will be searched for additional studies. The other databases to be searched will include: MEDLINE HealthStar ScienceDirect Dissertation Abstracts International/Digital Dissertations Academic Search Premiere DARE PsycINFO BioMedCentral TRIP (Turning Research into Practice) PsycARTICLES Psychology and Behavioural Sciences Collection ISI Current Contents Science.gov Web of Science/Web of Knowledge Scirus.com website Sociological Abstracts All abstracts will be reviewed to determine if the studies used the Molter quantitative tool. Furthermore, author searching will be conducted by searching each database for the names of authors of relevant reports to ascertain if they published other or similar work on the topic of interest. Journals devoted to critical care issues, such as Journal of Advanced Nursing, Dimensions in Critical Care, The Journal of Critical Care, Critical Care Nursing Quarterly, Critical Care Medicine, and Heart and Lung, will be hand-searched in order to be as complete as possible in finding studies regarding critical care. The following key words or terms will be included: critical care family needs inventory, CCFNI, Nancy Molter, Molter tool, intensive care, critical care, critically ill and family, relative, needs, perceptions, experiences, family members; families; relatives. Keywords and phrases used for searching will be expanded to include those common themes identified on preliminary review, such as visiting hours, family need for information, perceived needs of family members, etc. The search for unpublished studies or grey literature will include a search of MEDNAR, which includes Google Scholar, (Advanced) and studies' footnotes. A more extensive search for grey literature will be undertaken if there is a lack of consensus present or the availability of research-based evidence is of low volume or quality. The potential grey literature sites will include: ‘Grey Literature Report’ from New York Academy of Medicine National Library of Medicine and NIH subset and NLM Gateway Proceedings First Institute for Health & Social Care Research (IHSCR), PsycEXTRA (grey literature ‘sister’ site to PsycINFO) AHRQ (Agency for Healthcare Research and Quality) Theses Canada WHOLIS: WHO Organization Library database Virginia Henderson Library of Sigma Theta Tau International Magnet Conference Proceedings Assessment of methodological quality Research papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the JBI MASTARI (see Appendices I). Any disagreements that arise between the two primary reviewers will be resolved through discussion, or with the third reviewer. Data collection Data will be extracted from papers included in the review using the standardised data extraction tool from JBI-MAStARI (see Appendix II). The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives. Data synthesis Where meta-analysis is possible, quantitative research findings will be pooled using the JBI MASTARI program (or other well-known and reliable statistical software, such as Stata Data Analysis and Statistical Software, and only if necessary). All results will be subject to double data entry. Effect sizes expressed as odds ratios (for categorical data) and weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed statistically using the standard Chi-square and also explored using subgroup analyses based on the anticipated different quantitative study designs included in this review. Where statistical pooling is not possible the findings will be presented in narrative form. Conflicts of interest There are no conflicts of interest in this systematic review. Acknowledgements We thank Roberta Bronson Fitzpatrick and her team from the University of Medicine and Dentistry of New Jersey - George F. Smith Newark Library of the Health Sciences.

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