Communication
Changing support needs of survivors of complex critical illness and their family caregivers across the care continuum: A qualitative pilot study of Towards RECOVER

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Abstract

Introduction

Survivors of complex critical illness and their family caregivers require support during their recovery, rehabilitation, and return to community living; however, the nature of these supports and how they may change over time remain unclear. Using the Timing It Right framework as a conceptual guide, this qualitative pilot study explored survivors' and caregivers' needs during the episode of critical illness through their return to independent living.

Methods

Five survivors and seven family caregivers were recruited and consented from the main Towards RECOVER pilot study, designed to characterize the long term outcomes of survivors of the ICU who have been mechanically ventilated for more than one week. Using the Timing It Right framework, we prospectively conducted qualitative interviews to explore participants' experiences and needs for information, emotional support, and training at 3, 6, 12, and 24 months after intensive care unit (ICU) discharge. We completed 26 interviews, which were audio recorded, professionally transcribed, checked for accuracy, and analyzed using framework methodology.

Results

In this small pilot sample, caregiver and patient perspectives were related and, therefore, are presented together. We identified 1 overriding theme: survivors do not experience continuity of medical care during recovery after critical illness. Three subthemes highlighted the following: (1) informational needs change across the care continuum, (2) fear and worry exist when families do not know what to expect, and (3) survivors transition from dependence to independence.

Conclusions

Interventions designed to improve family outcomes after critical illness should address both survivors' and caregivers' support needs as they change across the illness and recovery trajectory. Providing early intervention and support and clarifying expectations for transitions in care and recovery may decrease fears of the unknown for both caregivers and survivors. Ongoing family-centered follow-up programs may also help survivors regain independence and help caregivers manage their perceived responsibility for the patients' health. Using these insights for intervention development could ultimately improve long-term outcomes for both survivors and caregivers.

Introduction

The support needs for survivors of complex critical illness and their caregivers may change as survivors transition from the intensive care unit (ICU) to the step-down or general ward; rehabilitation; and, ultimately, the home environment [1]. There is significant interest in understanding the experiences and needs of survivors and their family caregivers to inform family-centered interventions, which may improve patient and caregiver outcomes. To gain insights into the complexity of issues after an episode of critical illness, qualitative research may be used [2], [3]. Qualitative studies with ICU survivors and their family caregivers have primarily examined needs during the ICU stay, relocation stress experienced while transitioning from the ICU, and posttraumatic stress disorder [4], [5]. These studies suggest that relocation stress may be minimized by addressing practical causes such as communication issues experienced by survivors who have had a tracheostomy and nursing care that is more sensitive to survivors' specialized needs [4], [5], whereas posttraumatic stress disorder can be reduced by decreasing the patient's distress and fear and lessening the impact of ICU stressors while maintaining a calm environment [5]. One study exploring the needs of ICU survivors with acute respiratory distress syndrome (ARDS) beyond the ICU transition phase found that needs for information and support changed from the early ICU stages through survivors' adjustment to life at home [1]. Qualitative research with ICU survivors in the UK [6] suggests that follow-up services contributed significantly to their physical, emotional, and psychologic recovery. Survivors valued the continuity in care, including being monitored, receiving referrals to specialists, and receiving reassurance from ICU staff, whom they considered to be experts on their condition [6].

Research has also begun to qualitatively explore the experiences and needs of family caregivers to ICU survivors. During the survivors' ICU stay, receiving information from the health care team is crucial for family caregivers [7], [8], [9]. Despite this, much of the information desired by family members when making decisions is not provided, in particular, information about expected care needs and prognosis [10]. Some studies have begun to highlight the complex interdependency of ICU survivors and their family caregivers [11], [12]. Caregivers discussed a lack of support from health care professionals post-ICU [12] and the importance of coping strategies to deal with the new disability [13]. Specifically, caregivers to ARDS survivors discussed experiencing relationship strains [11], [12].

To date, research examining and addressing survivors' and family caregivers' needs for support has emphasized these needs at specific points in the care trajectory (eg, acute care or rehabilitation). Limited investigation has explored the long-term needs of ICU survivors and family caregivers and how these needs interact and change across the illness and recovery trajectory, especially during inpatient rehabilitation and the first years back in the community. In order to understand the changing needs and experiences of ICU survivors and their family caregivers, our group has adopted the Timing It Right (TIR) framework [14]. This framework suggests that survivors and their family caregivers move through specific phases of recovery over time and that these phases are associated with specific needs for support [14]. Although the framework was initially developed for the stroke population, it has been adapted for the critical illness experience because its central premise that needs change over time as patients transition from an acute care experience, through rehabilitation, and return to community living is also valid for the critical illness population. Stroke and critical illness are similar in that they are associated with the sudden onset of illness followed by longer term recovery [1]. This TIR framework, as previously adapted to the critical illness experience [1], includes the following phases: (1) the critical illness event and ICU care, (2) period of stabilization on the general ward, (3) preparation for return to community living, (4) first few months of home adjustment, and (5) longer term adjustment to community living. The TIR framework considers 4 key elements of social support at each consecutive phase across the care continuum: emotional (eg, providing comfort or listening to problems), instrumental (eg, providing training in problem solving), informational (eg, providing information about illness and services), and appraisal support (eg, providing feedback about their care-giving activities) [15]. The central aim of this framework is to determine and provide families with support that is specific to the phase of recovery and, thereby, minimize the occurrence of negative outcomes (eg, stress, caregiver burden, or depression) [14].

To meet the long-term needs of ICU survivors and their family caregivers, we must first characterize those needs across the care continuum. The objective of this qualitative pilot study was to delineate the needs and experiences of survivors of complex critical illness and their family caregivers across the illness and recovery trajectory using the TIR framework as a guide. Findings from this study will inform a larger scale qualitative exploration of ICU survivors and their family caregivers.

Section snippets

Setting and participants

This study was part of the longitudinal Towards RECOVER pilot study conducted at 2 university-affiliated medical-surgical ICUs. The patients' usual course of medical care included being admitted to the ICU; being mechanically ventilated; having mechanical ventilation removed; moving to a step-down ward or general ward; and, ultimately, returning home. Although not typical, some patients receive care post-ICU through inpatient or outpatient rehabilitation and/or home care services. Support for

Participants

Five ICU survivors and 7 family caregivers were interviewed at various points in time post-ICU. Characteristics of the participants and timing of the interviews are summarized in Table 2. In total, 9 different cases were explored wherein 1 to 3 people were interviewed per case. Fig. 2 provides a description of the cases and demonstrates whose opinions are presented in these results. After speaking with caregivers and patients at the 7-day post-ICU quantitative assessment for the Towards RECOVER

Discussion

This qualitative pilot study begins to explore the changing needs of mechanically ventilated ICU survivors and their family caregivers, across the recovery trajectory. We have demonstrated the feasibility of conducting a qualitative study exploring experiences of ICU survivors and their families during the first 2 years post ICU-discharge and provided preliminary insights, which will be explored further in a larger scale version of the study, which is currently under way. Our pilot study adds

Conclusions

This qualitative pilot study has demonstrated feasibility for a larger scale study and has begun to identify the needs and experiences of a small group of ICU survivors and their family caregivers, where survivors spent a minimum of 7 days receiving mechanical ventilation in the ICU. Preliminary results show that applying these qualitative findings to intervention development may improve long-term outcomes for both survivors and their caregivers. Specifically, future care and interventions

Key messages

  • Survivors of complex critical illness and their family caregivers typically do not experience continuity in care post-ICU.

  • Information needs of survivors and their family are highest 1 to 2 years post-ICU discharge, when many survivors receive no follow-up care and wanted to know what to expect and whether their recovery is progressing normally.

  • In addition to ICU transfer anxiety, patients and their family caregivers experience fear and worry as they transition to rehabilitation and to their

Competing interests

The authors declare that they have no competing interests.

Authors' contributions

AIC analyzed all data (developed the interview guide, coded the interviews using framework analysis, and developed the themes) and drafted the manuscript. JIC conceived of the study and participated in its design and coordination, participated in all aspects of data analysis (developing the interview guide, coding the interviews, and developing the themes), and helped to draft the manuscript. MSH conceived of the study and participated in its design and coordination, reviewed the themes, and

Acknowledgments

This study was funded by the University of Toronto Faculty of Medicine Dean's Fund (Toronto, Ontario, Canada) and Canadian Institutes of Health Research (Ottawa, Ontario, Canada) New Investigators Award (JIC).

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