Background

The impact of hospitalization on both the patient and family dynamic is complex and diverse. Family can be generally defined as incorporating blood relatives as well as other significant friends and partners.1 Within the healthcare system, family members are increasingly involved with acutely ill patients' health in diverse undertakings, such as partaking in the patients' medical decisions, continuing support of prescribed medications and other treatments, as well as the coordination and management of health information across various clinicians and healthcare settings.1,2 Information from healthcare providers during this time is critical to both the patient and family's understanding of the illness and healthcare process. For the purposes of this review, information needs of patients and families will be defined as "a recognition that knowledge is inadequate to satisfy a goal"3^(p.5) and information seeking will be defined as "a conscious effort to acquire information in response to a need or gap in knowledge".3^(p.5) Information seeking will include the way information is delivered to patients and families as well as the timing of information.

When considering the information needs of acutely ill patients and their family members, a review of the literature found a vast amount of studies and papers that have been written addressing this topic, particularly in the oncology and intensive care settings. Kirk et al.,4 in their study investigating the information needs of patients and their families in the palliative care setting, found significant differences in the information needs of these two groups. An interesting finding reported by the authors was that all patients and families in their study utilized secondary sources to verify and supplement the information provided by healthcare professionals, including written handouts and websites. Overall, this indicates that, while patients and families were receiving information from the healthcare team, their information needs were not being met. In addition to this, the authors reported that, while providing information to patients and families is crucial, the information sharing process is just as important as the content. The timing and delivery of information, as well as the perceived attitude of practitioners, were also critical to the process.4 Wolff proposes that a methodical elicitation of family members' viewpoints from the patients' would diminish any ambiguity between them, as well as highlight the importance of the information needs of patients and families.1

An early study by Hardwick and Lawson in 1995 established that a well-informed and supported family benefits the patient through enhancing the patients' capacity to cope with their diagnosis and allowing the family to provide greater support.5 A more recent systematic review was undertaken to investigate the effectiveness of interventions in improving the quality of communication provided to families and patients with advanced and serious illness.6 In this review, the authors found that several studies have described the families' considerable need for information and the potential for this to impact on the patient's and family's satisfaction with the healthcare system and processes.6 The primary information need of families of patients suffering from cancer is to be informed of the patients' condition, to understand the disease process and the feasibility of caring for their loved one at home.5 Additional information needs included instruction about physical functions, treatments and their side effects, pain management, fatigue, financial resources and homecare and community supports.4,5 Along with information about the disease and its impact on the patient's quality of life, families want truthful and comprehensive information as soon as possible with questions answered honestly, and information on support services such as counseling and coping strategies to assist with anxiety and depression symptoms.7,8 The majority of cancer patients would prefer to receive information about their disease from their main healthcare provider (usually their general practitioner).9

It has been well established in some acute healthcare settings that providing information to patients and families helps to reduce anxiety and stress.10-12 In the perioperative area for example, it is known that anxiety and stress is an ongoing and significant issue for both patients and family members,13 and that providing information helps to reduce these psychological issues.12 In their study of family members' needs during their relatives' perioperative period, Carmody et al.14 found that the highest universal need reported by family members was for information. Further, Trimm and Sanford15 ascertained that the information of highest priority that the families needed was about the perioperative routine such as, duration of the surgical procedure and outcome expectations.

A recent scoping review of the literature on the needs of families with loved ones in intensive care units (ICUs) found that the information needs of families were considered most important, with families reporting that information should be timely, up-to-date and conveyed to them in everyday language in a consistent manner.16 In support of this, in the qualitative portion of Carson et al.'s17 study, they reported that relatives of chronically critically ill patients considered six specific informational domains to be of most importance to them. These domains were the nature, prognosis, impact and complications of the illness and its treatments; both the scenario envisaged after hospitalization and options instead of continuing treatment. In addition, this study also described the high levels of anxiety and confusion these families experience if their information needs are not met in an appropriately professional manner.17 Kloos and Daly18 also reported that the lack of appropriate information is a significant factor in the development of anxiety and depression in patients and families of patients in ICUs and information can help to decrease these symptoms. In another qualitative study examining spouses' perceptions of their loved ones' ICU admission, participants disclosed that waiting for information was the most difficult aspect of receiving information.19

The need for information in the intensive care environment is considered to be of paramount importance and universal, irrespective of demographic differences such as gender, age, level of education and socio-economic status. The anxiety associated with having a critically ill relative can be allayed with information about prognosis, treatment and orientation to the ICU environment.7,20 Throughout the literature, the importance of this need for families in critical care is regularly acknowledged by critical care staff; however, some research suggests that while nurses believe that they regularly provide sufficient information, patients do not agree.21 In their qualitative study of families of intensive care patients, Wong et al.21 highlighted the importance of assessing families information needs and the appropriate time to convey information. It is recommended that an individualized approach when discussing prognosis and disease processes with family members is most appropriate, as evidence suggests that information about the patient's clinical condition, while being endorsed as the greatest need, is irrespective of the relatives' educational background or culture.4,20 In comparison to family needs, Paul et al.22 found that ICU patients want information about what to expect after discharge from ICU and the availability of support resources.

It is apparent that acutely ill patients and families have considerable and differing information needs. A preliminary search of the literature in MEDLINE and CINAHL databases as well as the JBI Database of Systematic Reviews and Implementation Reports found no previous scoping reviews that have addressed this topic in the acute healthcare setting. Patient/consumer information and patient/family centered care are considered important paradigms of contemporary healthcare and as such this topic requires further exploration. By reviewing the available literature, it will be possible to inform health policy and guidelines on appropriate approaches to inform and deliver timely information to patients and their families. This will ostensibly contribute to the psychological care of the patient, reduce anxiety and depression and improve the wellbeing of both the patient and their families. This scoping review will adopt the methodology for Joanna Briggs Institute (JBI) scoping reviews as described in the 2015 JBI Reviewers' Manual.23

Inclusion criteria

Types of participants

The current scoping review will seek to include studies with participants who are:

* Patients: adults (aged 18 years and over) of any gender, culture, diagnoses and ethnicity admitted to acute healthcare facilities.

* Family members: adult family members (aged 18 years and over) of any gender, culture and ethnicity of patients admitted to acute healthcare facilities.

Family in this scoping review is defined as persons who are connected to patients either through blood, marriage or are significant partners or friends.

Concepts

The current concepts of interest for this scoping review may include, but will not be limited to:

Question 1: Type of information such as diagnosis, prognosis, care issues, management issues, long-term recovery and impact of illness.

Question 2: Clinical staff providing information to patients and families such as medical officers, nurses, social workers, physiotherapists, occupational therapists, physical therapists and administration staff.

Question 3: Delivery of information such as verbal communication, family meetings, attendance at ward rounds, written information, brochures, education sessions, use of technology and websites.

Question 4: Timing of information such as preadmission, admission, discharge and post-surgery.

Context

Studies to be included must be conducted in acute healthcare settings. Acute healthcare settings will include: hospital wards and departments, emergency departments, ICUs, coronary care units and perioperative areas. Studies conducted in community care, home care and nursing home facilities will not be included.

Types of studies/sources

The current scoping review will consider quantitative and qualitative studies of any design or methodology.

Quantitative studies may include, but will not be limited to, experimental and observational study designs, including randomized controlled trials, non-randomized controlled trials, quasi-experimental, before and after studies, cohort studies, case-control studies and cross-sectional studies.

Qualitative studies may include, but will not be limited to, phenomenology, grounded theory, ethnography, action research and feminist research.

Search strategy

The search strategy for this scoping review aims to be comprehensive to identify both published and unpublished (grey literature) studies as well as reviews. A three-step search strategy will be utilized in this review. The first step will be an initial limited search of the CINAHL and PubMed databases. This initial search will be followed by an analysis of the text words contained in the title and abstract of retrieved papers, and of the index terms used to describe the articles. A second search using all identified keywords and index terms will then be undertaken across all included databases. Third, the reference list of all identified reports and articles will be searched for additional studies. The reviewers will contact authors of primary studies or reviews for further information, if this is relevant.

Only those studies in English will be considered for inclusion in this review because of time and budgetary constraints. There will be no date limit in the search. If potentially useful search terms are discovered during the search strategy, additional keywords and sources may be incorporated after discussion with a research librarian, with the aim of identifying the maximum number of articles.

The databases to be searched include:

* CINAHL

* PubMed

* Health source

* PsycINFO

* PsycArticles

* Web of science

* Embase

* CENTRAL

* DARE.

The search for unpublished studies, including grey literature will include:

* Open Grey (formerly SIGLE - System for Information on Grey Literature in Europe).

* Contacting authors, experts and organizations active within the phenomenon of interest to attempt to identify further published, unpublished and ongoing studies.

* Dissertation Abstracts International.

* MedNar.

Data extraction

A draft charting table (Appendix I) has been developed by the reviewers at this protocol stage to chart relevant data, with the view that this will enable a logical and descriptive summary of the results that aligns with the objective and questions of the review and will facilitate the identification of themes and gaps in the literature. The charting table may be further refined at the review stage and updated accordingly. Presently, the key information that the reviewers have chosen to chart are:

* Author(s)

* Year of publication

* Origin/country of origin

* Aims/purpose

* Study population and sample size (if applicable)

* Methodology/methods

* Intervention (if applicable)

* Duration of the intervention (if applicable)

* Outcomes/results (if applicable)

* Key findings that relate to the scoping review question/s.

Results

As per JBI scoping review guidelines23 to illustrate and summarize the main findings, results will be presented in tabular form, with a narrative summary describing how the results relate to the review objective and questions. The results will be classified under key conceptual categories that will be obtained during the data extraction process. These categories will relate back to the specific review objective of patients and families information needs and information seeking behaviors with subcategories of:

* What information do patients and families want to know from healthcare providers?

* Which specific healthcare professional do patients and families prefer to receive their information from?

* What is the preferred method of delivery of information?

* What is the preferred timing of information sharing?

Literature will then be tabulated using the following headings: research design, geographical location, year of publication, characteristics of study population, research outcomes and key findings, as they relate to the specific review objectives.

Appendix I: Data extraction tool (proposed)

References