REVIEW PAPER

Qualitative systematic review: the unique experiences of the nurse-family member when a loved one is admitted with a critical illness Tracey M. Giles & Karen L. Hall Accepted for publication 9 November 2013

Correspondence to T.M. Giles: e-mail: [email protected] Tracey M. Giles RN MN Lecturer in Nursing, PhD Candidate Flinders University School of Nursing and Midwifery, Adelaide, South Australia, Australia Karen L. Hall BA BSc GradCert ClinEpidemiol Statistics Academic Tutor, Research Officer Flinders University, Adelaide, South Australia, Australia

G I L E S T . M . & H A L L K . L . ( 2 0 1 4 ) Qualitative systematic review: the unique experiences of the nurse-family member when a loved one is admitted with a critical illness. Journal of Advanced Nursing 70(7), 1451–1464. doi: 10.1111/jan.12331

Abstract Aim. To interpret and synthesize nurse-family member experiences when a critically ill loved one is admitted to hospital. Background. Having a family member hospitalized in a critical condition is an important stressor. When the family member is also a nurse, the provision of care is more complex, yet little research exists on this issue. Design. Systematic review using Thomas and Harden’s approach to thematic synthesis of qualitative research. Data sources. Primary studies were located by searching CINAHL, Proquest, Journals@Ovid, SCOPUS, Cochrane Library and Google Scholar. No date restrictions were applied due to a lack of relevant literature. All studies that met inclusion criteria were retrieved (n = 1717) and seven met the review aim. Review Methods. Following critical appraisal, seven studies from 1999–2011 describing the nurse-family member’s experience were reviewed and synthesized. Results. Six characteristics of the nurse-family member experience were identified: specialized knowledge; dual-role conflicts; competing expectations; building relationships; being ‘let in’; and healthcare setting. Conclusion. Nurse-family members experience important stressors that can negatively affect their psychological health and experience as a healthcare consumer. Nurse-family members want a different type of care than other healthcare consumers. Acknowledging nurse-family members’ specialized knowledge and dual role, keeping them fully informed and allowing them to be with the patient and feel in control can reduce their fear and anxiety. Further research is needed to develop a deeper understanding of the unique experiences, challenges and needs of nurse-family members to provide them with an enhanced level of care. Keywords: dual role, family presence, nurse-family member, nursing, systematic review, thematic synthesis

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Why is this review needed? ● Having a family member admitted to hospital in a critical condition is an important stressor. ● Traditionally, nurses caring for critically ill patients have given limited attention to family members. More recently, there has been an increased recognition of their need for care. ● When the family member is also a nurse, factors exist that make provision of care more complex, yet little research exists on this issue.

What are the key findings? ● Due to their specialized knowledge, nurse-family member experiences as healthcare consumers are very different to those of general public family members. ● We identified six characteristics of the nurse-family member experience: specialized knowledge; dual-role conflicts; competing expectations; building relationships; being ‘let in’; and healthcare setting (own vs. other). ● Nurse-family members want and need a different type of care than other healthcare consumers.

How should the findings be used to influence policy/ practice/research/education? ● Healthcare professionals need to recognize and understand the unique experiences, challenges and needs of nurse-family members to provide appropriate care. ● Recommendations from this review recognize and acknowledge nurse-family members’ specialized knowledge and their dual role and may help to reduce fear and anxiety and improve their overall healthcare experience. ● Further research is needed to develop a deeper understanding of the unique experiences, challenges and needs of nurse-family members to develop sound recommendations that will further contribute to the development of an enhanced level of care for this unique group of healthcare consumers.

Traditionally, nurses caring for critically ill patients have focused primarily on the needs of the patient and have given limited attention to the needs of family members (Eggenberger & Nelms 2007). More recently, there has been an increased recognition by healthcare professionals (HCP) of the need to include families in the overall treatment plan, providing care for critically ill patients while also attending to distressed families (Agard & Harder 2007, Maxwell et al. 2007). This can be achieved by adopting a more family-centred approach to care (Eggenberger & Nelms 2007). Family-centred care (FCC) emerged in the late 20th century to involve families in the promotion of health and well-being of their children (American Academy Of Pediatrics Institute For Family-Centered Care Committee On Hospital Care 2003). Since that time FCC has evolved to include collaboration between HCPs, patients and family members of all ages (Conway et al. 2006) and is now considered an integral dimension of quality health care in all populations (Luxford et al. 2010, 2011, Coyne et al. 2011). FCC acknowledges that families are essential to patients’ health and well-being and are allies for health and safety in the healthcare system (Conway et al. 2006). Furthermore, FCC builds partnerships between families and HCPs, helps FMs feel comfortable in the healthcare setting, recognizes their needs and contributions and improves their access to information (Cypress 2012). To provide effective care for family members of critically ill patients, HCPs first need to understand the experiences and needs of these FMs. Molter (1979) carried out the first published study into the needs of relatives of critically ill patients and since that time many researchers have explored this phenomenon (Bournes & Mitchell 2002, Holden et al. 2002, Engstrom & Soderberg 2004, Alvarez & Kirby 2006, Agard & Harder 2007, Eggenberger & Nelms 2007). When the FM of a critically ill patient is also a nurse (Nurse-FM), factors exist that make the plan of care more complex (Olivet & Harris 1991); however, there is very little research on this issue.

The review Introduction Having a family member (FM) admitted to hospital in a critical condition is an important traumatic stressor (Hughes et al. 2005, Stayt 2007). According to Eggenberger and Nelms (2007) when critically ill patients are admitted in physical crisis, their FMs are often in psychological crisis. These admissions happen suddenly, leaving little time to implement adequate coping resources and place FMs at risk of significant and ongoing psychological distress (McNamara 2007). 1452

Aim The aim of this review was to interpret and synthesize the experiences and needs of Nurse-FMs when a loved one is admitted with a critical illness.

Design A qualitative systematic review was conducted using Thomas and Harden’s (2008) approach to thematic synthesis. A © 2013 John Wiley & Sons Ltd

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systematic review uses rigorous and explicit methods to synthesize results of primary research to provide reliable answers to a research question while also reducing bias in the review process (Thomas & Harden 2008). Combining qualitative studies in a review can increase the significance of the overall findings by drawing on a wider range of participants and settings and consolidate a body of knowledge on a particular issue (Evans & Pearson 2001). Synthesis of the findings seeks to generate understanding or interpretative explanation and allow critical examination of multiple accounts of a particular situation or experience (Noblit & Hare 1988). Steps in this systematic review included defining the focus of the review, locating all relevant studies, selecting relevant studies for inclusion/exclusion, quality assessment, data abstraction and thematic synthesis (Thomas & Harden 2008). Thematic synthesis involved identifying key concepts from relevant studies, translating them into one another and then developing analytical themes to describe the phenomenon under study (Thomas & Harden 2008). To ensure adequate rigour, data abstraction and thematic synthesis was undertaken by two reviewers, as outlined in detail in Table 4.

Unique experiences of the nurse-family member

Table 1 Inclusion and exclusion criteria applied to the literature search. Inclusion criteria

Exclusion criteria

The family member is a nurse Primary research and unpublished theses Studies published in English

The family member is not a nurse Opinion pieces, anecdotal papers, editorials Studies published in languages other than English Long-term illness and planned admissions No time restrictions applied

Unplanned admission for critical/acute illness All methodologies included

it contributed relevant findings to the overall analysis and synthesis of the literature and had been through a peer review process during construction and examination. Three studies (Fulbrook et al. 1999a,b,c) were written by the same lead author about one Nurse-FM’s experience when her husband was admitted to her workplace (ICU). These studies report findings from a single-participant case study and therefore have limited transferability. However, they were included because they contributed relevant findings. Overall seven primary studies were included in this (Figure 1).

Search methods A comprehensive search of the literature was undertaken to locate relevant research. Electronic databases CINAHL, Proquest, Journals@Ovid, SCOPUS, Cochrane Library and PsychARTICLE were searched using the following phrases: nurse-family member/relative; nurses caring for own family members/relatives; family member/relative who is a nurse; dual role of nurse-family member/relative; critical illness. The search was initially limited to January 2003–April 2013 to include current literature. However, time restrictions were removed due to a lack of relevant studies.

Search outcomes A total of 1717 articles published between 1975–2011 were identified during the initial search. Titles were read and articles not relevant to the aim were excluded, leaving seven articles. The reference lists of those seven articles were then scrutinized, which located an additional eight articles. Fifteen articles were read in full and several methodological restrictions and inclusion/exclusion criteria were then applied as described in Table 1. Opinion/discussion pieces using anecdotal evidence from clinical practice were excluded due to low rigour. One unpublished thesis was included (McNamara 2007) because © 2013 John Wiley & Sons Ltd

Quality appraisal All seven studies were qualitative and used an interpretive approach to describe and explore the phenomenon and generate meaning in a practice context (Denzin & Lincoln 2005). The methodologies used were well-suited to the aims of the reviewed studies and included phenomenology, grounded theory method and a descriptive qualitative approach. The studies took place in the UK (n = 4), New Zealand (n = 2) and the USA (n = 1). Three studies were published in 1999 and the remainder were published between 2006–2011. Findings from the older studies were similar to those published more recently and were therefore deemed relevant in a contemporary context. Study rigour was assessed using the Critical Appraisal Skills Programme for Qualitative Studies (Solutions for Public Health 2012). Ten questions were answered to identify strengths and weakness of each study. Results of the critical appraisal process are presented in Table 2. A summary of the included studies including strengths and limitations is presented in Table 3. One study provided limited information about the recruitment process; therefore, it was not possible to determine if recruitment was appropriate to study aims. Most studies did not give due consideration to the relationship between the researcher 1453

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Table 2 Critical appraisal of included studies. Title and abstracts screened n = 1717

Excluded on title / abstract Topic not relavant n = 1710

Hand search of reference lists n=8 additional papers

Full text articles screened against inclusion and exclusion criteria

Excluded articles that were not primary studies n=8

Included studies n=7

Study number Critical appraisal question

1

2

3

4

5

6

7

Clear statement of the aims? Qualitative methodology appropriate? Methodology appropriate for study aims? Recruitment strategy appropriate to aims? Data collection style addressed research issue? Researcher & participant relationship considered? Ethical issues taken into consideration? Data analysis sufficiently rigorous? Clear statement of findings? Is the research valuable?*

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– – –

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*The final question included the following sub-questions: Does the author discuss the contribution the findings make to existing knowledge? Do the researchers identify where new research is needed? Did researchers discuss how findings can be applied to other populations? The study numbers in this table correlate to study numbers listed in Table 3.

of rigour, indicating that despite methodological limitations their findings were relevant and valuable.

Figure 1 Flow chart of search strategy. and participants, potentially biasing findings. Three studies did not acquire ethical approval, but discussed confidentiality issues adequately (Fulbrook et al. 1999a,b,c). Five studies did not present detailed or sufficient information about data analysis, therefore it was not possible to determine if analysis was appropriate or rigorous and three studies did not provide a clear statement of the findings. Overall the findings of included studies were considered to have moderate rigour and all were deemed highly relevant to the review. Two studies (McNamara 2007, Salmond 2011) were awarded a high level of rigour for meeting the requirements in all ten critical review questions. Two studies were classified as moderately rigorous (Mills & Aubeduck 2006, Duke & Connor 2008) for meeting the requirements in eight questions. The remaining three studies (Fulbrook et al. 1999a,b,c) were awarded a low level of rigour because they met the requirements of only six critical appraisal questions. However, they were included due to the lack of relevant literature and because they reported findings similar to those in studies awarded a higher level 1454

Data abstraction and synthesis Abstraction and synthesis were conducted using a thematic synthesis framework adapted from Thomas and Harden (2008). The three-phase process used in this review is described in detail in Table 4. During phase one, two reviewers independently coded each line of text, before comparing initial codes and agreeing on sixty-one descriptive codes assigned during this phase. During phase two, all text allocated a code was examined by both reviewers to check consistency of interpretation and to determine if additional levels of coding were required. Both reviewers agreed on 11 descriptive themes that captured the meaning of groups of initial codes. During phase three, the descriptive themes identified in phase two were used to answer the review question ‘what are the unique experiences of the Nurse-FM?’ Six analytical themes were developed by the principal reviewer during this phase, then checked and agreed on by the second reviewer. The final analytical themes described and explained all of the initial descriptive themes, the inferred experience of the dual role and the implications for future practice. © 2013 John Wiley & Sons Ltd

Authors year country

Duke and Connor (2008) New Zealand

Fulbrook et al. (1999a,b,c) United Kingdom

McNamara (2007) New Zealand

Study no.

1

2, 3, 4

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5

To explore the meaning of the experience for ICU nurses when a family member is critically ill

n=4 ICU RNs Researcher visited Nurse managers in ICU’s in Auckland and placed advertisements in professional organizations

n = 11 senior nurses (some with family members who were also senior nurses) Staff from healthcare or education institutions n = 7 large metropolitan areas n = 4 provincial cities Snowballing, convenience sampling n=1 ICU RN The patient was admitted to ED, then ICU of one healthcare setting, then transferred to a regional neurological unit The sole participant selfselected into the case study

To explore how being a senior nurses might influence their illness trajectories and affect their health outcomes after experiencing a life-threatening illness

To explore the experiences of an ICU Nurse-FM whose husband was admitted to hospital with a critical illness

Participants and setting

Aim

Table 3 Summary of included studies (n = 7).

Qualitative, Phenomenology Semi-structured Interviews Based analysis on van Manen

Qualitative descriptive Single-participant case study In-depth, unstructured, informal interview

Qualitative, descriptive Semi-structured, indepth interviews Thematic analysis

Methodology and methods

Strengths: Ethical approval obtained and discussed in depth Single interviewer (consistent questioning) Limitations: Small sample size (only one man) No detailed description or framework of analysis No limitations discussed Strengths: Confidentiality maintained Participant well placed to explore the issue Experience explored in a variety of settings Limitations: Ethical approval not obtained Single participant limits transferability Interview data presented as a narrative rather than coded Age of study Strengths: Ethical approval obtained Acknowledged preconceptions Participants checked transcripts for accuracy Limitations: Small sample, all participants female Participants excluded if FM died 3/4 nurses had FM admitted to their own workplace where they were a wellknown and respected; experience may be different in an unfamiliar workplace

Rigour

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Mills and Aubeduck (2006) United Kingdom

Salmond (2011) United States

6

7

Qualitative, Grounded Theory In-depth openended loosely structured interviews Constant comparative manual analysis

n = 22 Registered Nurses Nurses all worked in different healthcare settings Theoretical sampling using snowball technique

To explore the experience of being a nurse-family member of a relative hospitalized for a critical illness

Qualitative, Phenomenology Semi-structured interviews Interpretive phenomenological analysis

n = 5 senior nurses Full-time staff with the NHS Setting not stated One acute hospital trust 6 nurses were invited to take part

To explore the information needs, support systems and impact on the role of the nurse who is an informal carer for a family members with a life-threatening illness

Methodology and methods

Participants and setting

Aim

ICU, Intensive Care Unit; RN, Registered nurse; FM, family member; NHS, National Health Service (UK).

Authors year country

Study no.

Table 3 (Continued).

Strengths: Ethical approval obtained Ethical considerations discussed Limitations: Recruitment details not clear Did not state source of interview questions Small sample No setting defined Single site limits transferability Researcher bias – all participants had been previously supported in a professional capacity by the researcher Strengths: Ethical approval obtained Sample transcripts independently reviewed by an expert qualitative researcher Nurses from different clinical settings involved, increases transferability Limitations: Participants all female There was no family conflict among the nurse-FM and other FM which would not be usual

Rigour

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Table 4 Phases of thematic synthesis of qualitative research used in the review (adapted from Thomas & Harden 2008). Phase

Processes involved

Phase 1: Free line by line coding of findings

The findings section from each study was entered verbatim into a word document Two reviewers independently coded each line of text. Descriptive codes created inductively to capture meaning and content of each sentence. Translation of concepts from one study to another and initial synthesis of study findings. All text allocated a code were examined by both reviewers to check consistency of interpretation and determine if additional levels of coding were required. Similarities and differences between codes identified and grouped into a hierarchical tree. New codes created to capture the meaning of groups of initial codes. Draft summary of findings across all studies written by the principal reviewer, checked by the second reviewer and a final version agreed on. Involved ‘going beyond’ the content of the original studies The descriptive themes from Phase 2 used to answer the review question ‘what are the unique experiences of the Nurse-FM?’ The reviewers ‘inferred’ what these unique experiences were from the perspective of the Nurse-FM’s. The reviewers considered the implications of the experiences, specifically how healthcare professionals could potentially address the unique needs of this population As each new analytical theme emerged, it was compared with previous themes in a cyclical process until further new themes were sufficiently abstract to describe and/or explain all of the initial descriptive themes, the inferred experiences of the dual role and the implications

Phase 2: Organizing free codes into ‘descriptive themes’

Phase 3: Development of analytical themes

Results Our thematic synthesis identified six characteristics of the Nurse-FM experience, presented as a conceptual model in Figure 2. Specialized knowledge was interpreted as the core category, directly influencing all other characteristics of the experience. As a result of their specialized knowledge Nurse-FMs were torn between dual roles of family member and professional nurse and particular expectations were placed on them by the patient, other FMs, HCPs and the Nurse-FMs themselves. To fulfil these expectations NurseFMs needed to build a relationship with staff in an effort to be ‘let in.’ Being ‘let in’ reduced fear and anxiety; however, the success of building these relationships and being ‘let in’ was often dependent on whether the patient was admitted to the Nurse-FM’s own work setting. The six characteristics of the Nurse-FM experience are discussed in detail below.

Specialized knowledge Increased fear and anxiety Specialized knowledge led to increased fear and anxiety among Nurse-FMs. Knowing what could be wrong and what could go wrong, knowing the patient was going to die before they did and fearing the worst were constant sources of anxiety for some Nurse-FMs (Fulbrook et al. 1999a, Mills & Aubeduck 2006, McNamara 2007). Their emotional distress decreased significantly when Nurse-FMs were permitted to stay with the patient and monitor their condition © 2013 John Wiley & Sons Ltd

SPECIALISED KNOWLEGDE

DUAL ROLE CONFLICTS

COMPETING EXPECTATIONS

Building Relationships

Being ‘let in’

Adjusted own behaviour Non-critical of staff Enhanced communication Increased access to patient Included in patient care

Being present Enhanced communication Watching over patient Advocate role Decreased stress and anxiety

Healthcare setting (own vs. other)

Figure 2 The Nurse-FM experience when a loved one is admitted to hospital in a critical condition.

(McNamara 2007, Salmond 2011). While specialized knowledge was mostly shown to exacerbate anxiety and make Nurse-FMs fear the worst, in some circumstances it helped reduce fears because Nurse-FMs understood what was ‘normal’ in the clinical environment (McNamara 2007). Ability to identify inadequate care In many cases specialized knowledge allowed Nurse-FMs to immediately identify inadequate care (Fulbrook et al. 1999a,b,c, Mills & Aubeduck 2006, McNamara 2007), which in turn increased their anxiety and distress. Inadequate care included omitted medications, poor pain control 1457

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(Fulbrook et al. 1999a), misdiagnosis, inattention to personal hygiene and nutrition (Fulbrook et al. 1999b) and lack of care for FMs (Mills & Aubeduck 2006). Their specialized knowledge made Nurse-FMs feel ‘different’ to other FMs (Fulbrook et al. 1999b,c, Salmond 2011) and at times they expressed dissatisfaction and distress about the delivery of patient care and response to their own needs (Fulbrook et al. 1999c, Mills & Aubeduck 2006). Seeking meaningful and specialized information There was a strong need to seek out meaningful and specialized information about their loved one (Fulbrook et al. 1999a,b,c, McNamara 2007, Duke & Connor 2008, Salmond 2011). Nurse-FMs wanted and needed a different standard of information than general public FMs due to their specialized knowledge and for Nurse-FMs to feel in control and to keep other FMs informed (Salmond 2011). In addition, Nurse-FMs appreciated and respected adequate information giving and viewed staff who provided this information as competent and collegial (Salmond 2011). Increased access to meaningful information was believed to indicate professional respect from staff members and this in turn reduced Nurse-FMs stress and anxiety levels (McNamara 2007, Salmond 2011). In contrast, a lack of accurate and meaningful information led to increased anxiety, frustration and helplessness (Fulbrook et al. 1999a,b,c, McNamara 2007, Salmond 2011). Having information withheld and being provided with incorrect or ambiguous information also contributed to their distress (Fulbrook et al. 1999a,b). Nurse-FMs found they retained very little information when stressed and highlighted the importance of allowing adequate time to process information (McNamara 2007). Additional explanations and being able to question meanings were viewed positively by Nurse-FMs (Salmond 2011) and were seen to potentially decrease anxiety and stress levels which in turn could improve knowledge retention.

Dual-role conflicts Dual roles inextricably intertwined The Nurse-FM experience was seen as unique (Mills & Aubeduck 2006), where two identities (the ‘nurse-self’ and the ‘FM-self’) are inextricably intertwined (Salmond 2011). Many Nurse-FMs stressed that these two identities could not be separated and most identified as a nurse first and then as a FM (Mills & Aubeduck 2006, McNamara 2007, Salmond 2011). Some Nurse-FMs believed this dual role led to difficulties with boundaries regarding when to be a ‘nurse’ and when 1458

to be a ‘family member’ (Mills & Aubeduck 2006). The FM-self wanted to be there for the patient and other FMs but Nurse-FMs were often unable to turn off their nurseself to do so (McNamara 2007). Instead they were seen as being outside the family unit and ‘in control’ and their nurse-self needed to be satisfied with the level of patient care before the FM-self was allowed to emerge (Salmond 2011). Trust and confidence in staff and the care they provided was vital for the FM-self to appear. However, the dual roles were always interchanging and the nurse-self was always there ready to take charge (Salmond 2011) or to keep the FM-self from panicking (McNamara 2007). Emotional cost of the dual role At times Nurse-FMs wished they could separate themselves from the dual role and just be a FM (Fulbrook et al. 1999c, Mills & Aubeduck 2006, McNamara 2007, Salmond 2011). The dual role was viewed as a double burden, making hospitalization of a critically ill loved one more difficult because Nurse-FMs experienced clinical worry alongside embodied concern for a FM (McNamara 2007, Salmond 2011). Although their emotions were in turmoil, many Nurse-FMs felt under pressure to appear calm and in control to reduce anxiety among other FMs, which in turn increased their own stress and anxiety significantly (Mills & Aubeduck 2006, Salmond 2011). Other Nurse-FMs used their specialized skills to attend to everyone else’s concerns and put their own needs last (Mills & Aubeduck 2006). Nurse-FMs believed that not being able to show their true emotions during hospitalization of their loved one placed them at risk (Fulbrook et al. 1999a, Mills & Aubeduck 2006, McNamara 2007) and some reported feeling isolated because they felt unable to express their fear and pessimism (Mills & Aubeduck 2006). Nurses usually do not develop deep feelings for their patients and can, therefore, remain ‘disconnected’ from the full emotion of the situation (McNamara 2007). In contrast, Nurse-FMs reported feeling vulnerable and overwhelmed when a loved one was hospitalized (McNamara 2007). Their personal connection to the patient altered the Nurse-FMs experience of critical illness and situations that would usually be ‘normal’ to them became frighteningly ‘abnormal’ and Nurse-FMs felt powerless to change the patient’s condition (McNamara 2007).

Competing expectations Being ‘all things to all people’ Certain expectations were placed on Nurse-FMs by other FMs, by the patient, by HCPs and by the Nurse-FMs them© 2013 John Wiley & Sons Ltd

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selves. Nurse-FMs were expected to disseminate medical information to other FMs, interpret and explain ongoing care, answer questions about the patient’s condition and progress and provide emotional support to other FMs (Fulbrook et al. 1999c, Mills & Aubeduck 2006, McNamara 2007, Salmond 2011). Some Nurse-FMs felt under pressure to always ‘be in charge’ or ‘be in control’ (Salmond 2011) and felt that FMs and staff expected them to be an expert in all areas of health care (Fulbrook et al. 1999c). This caused some Nurse-FMs felt inadequate when they did not have all the answers (Mills & Aubeduck 2006).

Nurse-FMs were happy when they were included as a member of the team (Salmond 2011) and discovered their input was often welcome once relationships had been built (Salmond 2011). However, other Nurse-FMs reported that staff members did not welcome questions (Fulbrook et al. 1999c) and appeared stressed and intimidated by the NurseFMs presence (Fulbrook et al. 1999c, Salmond 2011). If Nurse-FMs were unable to build a relationship with staff they were not ‘let in’ and staff appeared unwilling to listen to their questions, concerns and suggestions about the care their loved one was receiving (Salmond 2011).

Stepping in to provide omitted care and ensure care is adequate Some Nurse-FM’s reported deterioration of the patient to staff and were distressed to be ignored (Fulbrook et al. 1999a, Duke & Connor 2008). Others felt compelled (personally and by their family) to ‘step in’ and provide omitted or inadequate care such as medication administration, changing soiled bedding and providing hygiene care (Fulbrook et al. 1999c, Salmond 2011). At times nursing staff expected Nurse-FMs to provide nursing interventions to their loved one during hospitalization (Fulbrook et al. 1999c, McNamara 2007). One NurseFM was resentful and angry when the nurse caring for her father asked the Nurse-FM to watch her father’s observations when the nurse left the room (McNamara 2007). This situation became very stressful for the Nurse-FM when her father’s observations required intervention and she felt unable to intervene. Another Nurse-FM reported similar feelings of distress when asked to check medications for another patient while visiting a FM in the ICU where she usually worked (McNamara 2007).

Adjusting their behaviour to be a ‘model’ family member Some Nurse-FMs were worried about being seen as ‘difficult’ and went out of their way to avoid this label (Fulbrook et al. 1999a,c, McNamara 2007). Others spoke about not wanting to be seen as ‘interfering’ (Fulbrook et al. 1999c) and tried to ‘fit in’ and be seen as a ‘good relative’ (McNamara 2007). Some Nurse-FMs were unsure how to behave with colleagues or what to expect from them (McNamara 2007). These behavioural adjustments created emotional conflicts for Nurse-FMs and increased their anxiety levels. Nurse-FMs spoke of their reservation and even fear of complaining to healthcare staff about care provided (Mills & Aubeduck 2006, Salmond 2011). They presented themselves as non-critical, often altering their behaviour to make staff more comfortable (Salmond 2011). When pointing out deficits in care Nurse-FMs did so very gently to avoid offence, but claimed this approach was not effective (Mills & Aubeduck 2006). Nurse-FMs in this latter study stressed that if they were a general public FM and did not have to worry about future professional relationships, they would have complained much more forcefully and they claimed the internal emotional conflict of ‘holding back’ was exhausting (Mills & Aubeduck 2006).

Building relationships Building a relationship with staff Nurse-FMs worked hard to develop relationships of mutual respect and trust with staff to enhance their access to information about the patient and to the patient themselves (McNamara 2007, Salmond 2011). Collaboration between Nurse-FMs and staff developed in some settings which enhanced care and satisfaction with that care (Salmond 2011). In contrast poor levels of collaboration increased distress for Nurse-FM and made it more difficult for them to advocate for their loved one (Salmond 2011). Some Nurse-FMs found it very difficult to build a relationship with staff due to poor communication practices, being ignored by staff or feeling as though staff did not care about them or the patient (Fulbrook et al. 1999a,b,c). © 2013 John Wiley & Sons Ltd

Being ‘let in’ Being ‘let in’ not only refers to Nurse-FM’s being permitted into the patient’s room but also relates to being present during nursing and medical interventions and being part of meaningful and specialized communications with HCPs. Being ‘let in’ was crucial for Nurse-FMs to allow them to ‘watch over’ the patient and to enhance their ability to advocate for the patient, both of which reduced their stress and anxiety levels. Watching over the patient Nurse-FMs felt the need to ‘watch over’ the patient to ensure appropriate care was provided and to maintain 1459

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guard over the patient and other FMs (Fulbrook et al. 1999a,c, McNamara 2007, Duke & Connor 2008, Salmond 2011). Some Nurse-FMs felt frustrated and powerless when asked to sit in the waiting room because they could not see what was happening to the patient and ensure they were stable (McNamara 2007). Other Nurse-FMs constructed a roster to ensure someone would be there around the clock while the patient was unconscious (Duke & Connor 2008). Advocating for the patient Nurse-FMs saw patient advocacy as their responsibility because of their specialized knowledge; and their specialized knowledge increased their ability to carry out this role effectively (Fulbrook et al. 1999a, McNamara 2007, Duke & Connor 2008, Salmond 2011). Advocacy occurred even when a collaborative relationship with staff was not achieved; however, collaboration significantly improved the level of advocacy possible (Salmond 2011). Nurse-FMs often became a spokesperson for the patient (McNamara 2007) and at times questioned patient care if they did not think it met acceptable standards (Fulbrook et al. 1999a, Salmond 2011). Some Nurse-FMs were able to exert a positive influence on illness trajectory and prevent complications and deterioration in the patient’s condition while others played an important role in the patient’s recovery by urging further investigation and treatment (Duke & Connor 2008).

‘let in’ by their colleagues than by staff they did not know (Salmond 2011). Nurse-FMs felt more confident and trusting of the care provided by colleagues than unknown staff (Fulbrook et al. 1999a, Salmond 2011). They were also appreciative of the emotional support they received in their own work setting (Fulbrook et al. 1999a, McNamara 2007, Salmond 2011) and to be part of a team where their opinions were heard and valued. Being ‘let in’ to the team further enhanced their relationships with staff and increased the likelihood of receiving meaningful information (Salmond 2011). Care needed with boundaries Some Nurse-FMs were concerned about personal and professional boundaries and believed their special knowledge and access needed to be balanced with their FM role to ensure they were acting ethically and maintaining patient confidentiality (Mills & Aubeduck 2006). Some Nurse-FMs were concerned and distressed that their private life was being discussed in their own work environment (Mills & Aubeduck 2006). Other Nurse-FMs were angry when asked to professionally care for the patient when in their own workplace setting as a family member (McNamara 2007). In this last instance, Nurse-FMs resented staff for ‘stepping over boundaries’ between the nurse-self and FM-self (McNamara 2007).

Discussion Healthcare setting (own vs. other) Special access and treatment Some Nurse-FMs were given special access to information or areas not accessible to general public FMs (Fulbrook et al. 1999a,b, Mills & Aubeduck 2006, McNamara 2007, Salmond 2011). However, this special access was often dependent on the healthcare setting (Salmond 2011). When the patient was admitted to the Nurse-FM’s own workplace Nurse-FMs were often granted special access to all areas, reported being more supported by staff (Fulbrook et al. 1999a, Salmond 2011) and were able to choose specific staff members to care for their loved ones (Fulbrook et al. 1999a, McNamara 2007). However, when the patient was admitted to an unfamiliar healthcare setting, Nurse-FMs received inadequate information, felt powerless because they did not know staff and were denied access to certain areas (Fulbrook et al. 1999a,b,c) Collegial support Many Nurse-FMs preferred the patient to be admitted to their own workplace because they were more likely to be 1460

This qualitative systematic review provides new insights into the experiences and needs of Nurse-FMs when a loved one is admitted with a critical illness. Six characteristics of the Nurse-FM were identified, all of which were inextricably linked under the core characteristic of specialized knowledge. Some of the characteristics of the Nurse-FM experience are similar to those of general public FMs. For example the importance of building relationships between staff and FMs (Hupcey 1998, 1999, Soderstrom et al. 2003, Maxwell et al. 2007, Vandall-Walker et al. 2007) and letting FMs in to be with the patient (Hupcey 1999, Vandall-Walker et al. 2007). However, their specialized knowledge makes Nurse-FMs experiences unique. Building relationships and being ‘let in’ take on a much more important meaning for Nurse-FMs because of their desire and ability to watch over and protect the patient and to ensure adequate care is being provided. Nurse-FMs are also faced with important challenges and needs that are not encountered by general public FMs such as dual-role conflicts and the expectations placed on them by self and others. © 2013 John Wiley & Sons Ltd

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Dual-role conflicts and competing expectations Nurse-FMs in this review experienced role conflict as a result of being a both a family member and a nurse. The competing expectations placed on Nurse-FMs by themselves and others resulted in a blurring of professional and personal boundaries and increased their anxiety levels. According to Biddle (1986) role conflict can occur when different and/or competing expectations are placed on a person in a particular context. As the incompatibility of expectations increases so does the potential for misunderstandings and harm (Kitchener 1988). A person subjected to conflicting expectations must resolve the problem by adopting coping behaviours to decrease the emotional distress that can occur as a result (Biddle 1986). Some Nurse-FMs in this review coped by adjusting their behaviour to build relationships with staff. This resulted in Nurse-FMs being ‘let in’ to watch over and protect the patient, increased their access to meaningful information that allowed them to advocate effectively for the patient and decreased their anxiety levels. Dual-role conflict among HCPs has been discussed previously in several studies. Cicchelli and McLeod (2012) reported personal and professional role conflicts and competing expectations among nurses caring for FMs with advanced cancer. Similarly, Ward-Griffin (2004) and WardGriffin et al. (2005) discussed dual roles and blurred boundaries in their work exploring ‘double-duty caregiving’ among HCPs caring for ill FMs. Similar to the Nurse-FMs in this review, double-duty carers attributed the high expectations placed on themselves to their specialized knowledge and skills. They felt obligated to provide emotional support to other FMs who lacked this specialized knowledge while suppressing their own fear and anxiety to avoid distressing other FMs. Double-duty Nurses and HCP’s reported feeling torn between dual roles and needed to continuously negotiate expectations and boundaries to cope. However, this was particularly difficult for them in the midst of their emotional distress and like the Nurse-FMs in this review double-duty carers felt isolated because they felt they had no one to confide in. The unique challenges and needs of Nurse-FMs require unique solutions to ensure they receive adequate care and attention from staff that recognizes their specialized knowledge, the expectations they face as a result of their dual role and the potential for role conflict.

Unique experiences of the nurse-family member

group of healthcare consumers. To provide effective care it is necessary to first understand Nurse-FMs experiences, challenges and needs, all of which this review has begun to highlight. Nurse-FMs possess specialized knowledge that cannot be turned off in their personal life and this knowledge can significantly increase fear and anxiety during hospitalization of a critically ill loved one. The dual roles are inextricably intertwined and HCPs need to recognize that to care for this unique group they must consider both roles and provide usual care for the FM-self and specialized care for the Nurse-self. Providing a more family-centred level of care builds partnerships between families and HCPs, helps FMs feel comfortable in the healthcare setting, recognizes their needs and contributions and improves their access to information (Cypress 2012). We offer the following recommendations for providing care to Nurse-FMs that recognizes and acknowledges Nurse-FMs’ dual role and specialized knowledge and may help to reduce their fear and anxiety and improve their overall healthcare experience.

Recommendations for healthcare professionals

• • • •

• • •



Implications



Limited attention has been given to the unique needs of Nurse-FMs and the provision of care to this particular



© 2013 John Wiley & Sons Ltd

Recognize the additional expectations and challenges of the Nurse-FMs dual role and the potential for role conflict. Keep Nurse-FMs fully informed by providing timely, meaningful and specialized information. Recognize and acknowledge their specialized knowledge and skills and allow and invite Nurse-FMs to question care without fear of retribution. Understand the emotional cost of the dual role and recognize that Nurse-FMs will often hide their emotional distress to avoid upsetting other FMs or to appear as though they are in control. Offer counselling and support to Nurse-FMs even if they do not appear to need these services. Recognize that Nurse-FMs need to feel in control and negotiate how involved they wish to be in patient care. Understand that Nurse-FMs need to watch over and advocate for the patient and allow the Nurse-FM to be with the patient, if that is what they and the patient want. Do not expect Nurse-FMs to provide nursing interventions; instead discuss and negotiate mutual expectations. Do not presume Nurse-FMs possess knowledge about the patient’s illness; instead ask them how much information they require and offer education accordingly. Ask Nurse-FMs how their needs can best be met. 1461

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• •

Encourage Nurse-FMs to clarify and negotiate the expectations placed on them by the patient, family members. HCPs and themselves. Empower Nurse-FMs to disclose their Nurse-FM status and include them as a member of the healthcare team.

We believe these recommendations have the potential to improve the healthcare experience of Nurse-FMs. However, further research is required to develop a deeper understanding of the unique experiences, challenges and needs of Nurse-FMs. A collaborative approach to the identification, development and evaluation of particular interventions and coping strategies from both a Nurse-FM and HCP perspective would contribute to the development of an enhanced level of care for Nurse-FMs.

Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Conflict of interest No conflict of interest has been declared by the author.

Author contributions All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:



Strengths and limitations This review was strengthened by the systematic search for relevant literature, using a formal tool to critically appraise the studies and collaboration between the reviewers during all three phases of the thematic synthesis. Weaknesses of the review include the limited number of studies, the low level of rigour of some studies and that the studies originated from only three countries. In addition, some studies were published more than a decade ago; however, they reported similar findings to those published more recently, which suggests they are still relevant and useful in a contemporary context. Despite several limitations, findings from this thematic synthesis offer an important insight into a phenomenon that has until now been given little attention in the literature.

Conclusion Due to their specialized knowledge, Nurse-FMs experience unique and significant stressors and challenges when a loved one is admitted to hospital with a critical illness, including dual-role conflicts and competing expectations from self and others. These additional stressors can impact the quality of care Nurse-FMs receive and may affect their ongoing psychological health. This review offers recommendations for healthcare professionals to provide specialized and effective care to Nurse-FMs who want and need a different type of care than other healthcare consumers.

Acknowledgements Thanks are due to Dr Wendy Abigail for providing critical comments on the manuscript. 1462



substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.

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Qualitative systematic review: the unique experiences of the nurse-family member when a loved one is admitted with a critical illness.

To interpret and synthesize nurse-family member experiences when a critically ill loved one is admitted to hospital...
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