ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE

From spouse to caregiver and back: a grounded theory study of post-intensive care unit spousal caregiving Anne Sophie  Ag ard, Ingrid Egerod, Else Tønnesen & Kirsten Lomborg Accepted for publication 17 February 2015

Correspondence to A.S.  Ag ard: e-mail: [email protected] Anne Sophie  Ag ard MScN PhD Clinical Nurse Specialist Department of Anesthesiology and Intensive Care, Aarhus University Hospital, Denmark Ingrid Egerod PhD Professor University of Copenhagen, Health & Medical Sciences, Copenhagen University Hospital Rigshospitalet, Trauma Center, Denmark Else Tønnesen DMSc Professor Department of Anesthesiology and Intensive Care, Aarhus University Hospital, Denmark Kirsten Lomborg MScN PhD Professor Faculty of Health Sciencies & Aarhus University Hospital, Aarhus University, Denmark

 AG  AR D A . S . , E G E R O D I . , T Ø N N E S E N E . & L O M B O R G K . ( 2 0 1 5 )

From spouse to caregiver and back: a grounded theory study of post-intensive care unit spousal caregiving. Journal of Advanced Nursing 71(8), 1892–1903. doi: 10.1111/ jan.12657

Abstract Aim. To explore the challenges and caring activities of spouses of intensive care unit survivors during the first year of patient recovery. Background. Every year, millions of people globally are discharged from an intensive care unit after critical illness to continue treatment, care and rehabilitation in general hospital wards, rehabilitation facilities and at home. Consequently, millions of spouses become informal caregivers. Little is known, however, about the concrete challenges spouses face in post-intensive care unit everyday life. Design. Explorative, qualitative grounded theory study. Methods. Participants were spouses of intensive care unit survivors. The study was undertaken in Denmark in 2009–2010. Data consisted of 35 semi-structured dyad interviews at 3 and 12 months post-intensive care unit discharge, two group interviews with patients and two with spouses. Findings. ‘Shifting their role from spouse to caregiver and back’ was identified as the core category of the study. The role shifts progressed in a dynamic process involving four elements: (1) committing to caregiving; (2) acquiring caregiving skills; (3) negotiating level of caregiving and (4) gradually leaving the caregiver role. Post-ICU caregiving comprised five patient dimensions: observing, assisting, coaching, advocating and managing activities. Conclusions. Spouses play a vital and multifaceted role in post-intensive care unit recovery. The findings can inform healthcare professionals in their efforts to prepare intensive care unit patients’ families for the time following intensive care unit and hospital discharge. Hospital staff, rehabilitation experts and primary care professionals must acknowledge spouses’ important contribution from intensive care unit admission throughout recovery. Keywords: caregivers, caregiving, critical care, family, grounded theory, ICU, intensive care, nursing, recovery, spouses

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Why is this research needed?  Relatives follow the critically ill patient throughout the illness trajectory and act as an important source of comfort and support.  After intensive care unit discharge relatives have been reported to experience anxiety, depression, caregiver burden and lifestyle disruption. Little is known, however, about the concrete challenges facing caregiving spouses in post-intensive care unit everyday life.  To maximize family support throughout the critical illness trajectory expanding knowledge of the post-intensive care

Post-ICU spousal caregiving

become informal caregivers. Internationally, the 12-month post-ICU mortality rate is 26-63% (Williams et al. 2005). Some ICU survivors recover fully while others suffer from major or minor conditions ( Ag ard et al. 2012, 2014). Providing patients and relatives with the knowledge and skill required to manage an illness at home is at the very heart of nursing practice (Schumacher et al. 2000). In critical care, expanding knowledge of the post-ICU experience of the family unit is a research priority to maximize family support throughout the critical illness trajectory (Angus & Carlet 2003, Paul & Rattray 2008, Needham et al. 2012).

unit experience of intensive care unit survivors and their families is a research priority in critical care.

What are the key findings?  After intensive care unit discharge spouses play a vital role providing multifaceted informal care to support patient recovery and comfort.  The main concerns of the caregiving spouses in the first 12 months after intensive care unit discharge were to promote patient recovery while keeping the couples’ practical and social lives together.  In the context of the Danish society, the spouses with no prior caregiving experience actively took on the caregiver role and engaged in the process of informal caregiving developing the skills necessary on a learning-by-doing basis. Often they felt alone with a great responsibility.

How should the findings be used to influence policy/ practice/research/ education?  The findings can inform healthcare professionals’ efforts to prepare intensive care unit patients’ families for the time following intensive care unit and hospital discharge.  Interventions to accurately identify resources and demands in post-intensive care unit caregivers’ situations and facilitate targeted supportive interventions, whether provided by the primary or secondary healthcare sector, must be considered.  Further research to broaden understanding of the context, extent, conditions and processes of informal post-intensive care unit caregiving provided by spouses or other relatives

Background Critical illness and admission to the ICU can be a crucial experience for patients and close relatives. In the following, we use the term relatives to include both family and others close to the patient. Relatives are often involved prior to admission and follow the patient throughout hospitalization and convalescence, acting as a source of support and comfort (Bergbom & Askwall 2000, Engstr€ om & S€ oderberg 2007, Lee et al. 2009). In the ICU, relatives often experience emotional turmoil worrying about the patient’s recovery. Yet, they can be resourceful striving to cope and adapt to a changed reality (Hupcey 1999,  Ag ard & Harder 2007, Linnarsson et al. 2010, Vandall-Walker & Clark 2011). When the patient is transferred to the general ward, relatives follow to support the patient (Mitchell et al. 2003). After hospital discharge, relatives assist the patient in the struggle to regain physical and functional independence ( Ag ard et al. 2012, 2014). This may lead to lifestyle changes or restrictions (Choi et al. 2011) or reduced ability to work (Van Pelt et al. 2007). In the past two decades, several studies have shown that the quality of life of relatives of ICU survivors is poorer than in the general population (Johnson et al. 2001). Some studies even suggest that relatives might suffer greater anxiety or depression than the patient (Azoulay et al. 2005, Young et al. 2005). Little is known, however, about the characteristics of post-ICU everyday life and relatives’ role after ICU discharge.

in different national settings is needed.

Danish society

Introduction Every year, millions of people globally are discharged from the intensive care unit (ICU) to continue treatment, care and rehabilitation in general hospital wards, rehabilitation facilities and at home (Iwashyna 2010) and millions of people © 2015 John Wiley & Sons Ltd

The context of this study is the Danish welfare state. The Danish society is characterized by universal welfare services such as tax-financed education and health care, including rehabilitation services (The Ministry of Foreign Affairs of Denmark 2013). Reimbursement for sick leave and lost work is relatively high. The employment rate of Danish women (70%) is among the highest in the world (OECD 2013). 1893

A.S.  Ag ard et al.

The study Aim The aim of this study was to explore the challenges facing spouses of ICU survivors and describe and explain their concerns and caregiving strategies during the first 12 months post-ICU discharge.

Design The study used a qualitative design, based on grounded theory (GT) methodology with semi-structured interviews. Participants were spouses of ICU survivors. The study was part of a larger project exploring the first year of recovery in patients, spouses and couples after ICU discharge.

Participants and setting Over 9 months in 2009–2010 participants were recruited from five ICUs in Denmark (four general and one neurosurgical). Although the focus of this study is on the spouse, the selection pertained to the patient. People 25-70 years of age, who had been intubated more than 96 hours (the most severely ill) (Douglas & Daly 2003) and who lived with a spouse, were included. In the following, the term spouse includes either spouses or cohabiting partners. Previous illness has a major impact on post-ICU outcome (Orwelius et al. 2010). To explore the consequences of the current illness trajectory, people with conditions expected to have severely affected daily life prior to their critical illness (e.g. major heart, lung, or neurological disease, depression, schizophrenia, brain damage, cancer, a recent history of drug/alcohol abuse or attempted suicide) were excluded. All participants spoke Danish.

Ethical considerations Ethical and legal approval of the study procedures were obtained from the National Board of Health (7-604-04-2/ 158/EHE) and the Danish Data Protection Agency (200941-3022). Prior to approaching participants, the hospital register was checked to make sure the patient was still alive. Participants were contacted by mail 10 weeks after discharge from the ICU, informed about the study and invited to participate. Written consent prior to inclusion was obtained. At each interview, consent information was repeated verbally and in writing, including the right to withdraw at any time. 1894

Data collection Data were generated from semi-structured dyad interviews with patients (n = 18) and spouses (n = 18) at 3 months (n = 18 patients, n = 18 spouses) and 12 months (n = 17 patients, n = 16 spouses) after discharge from the ICU. One couple and one spouse withdrew from the study (see Figure 1). The dyad interviews were conducted in the couples’ homes or at the hospital. To describe and explain spouses’ concerns and strategies in the context of their shared life with the ICU survivor, dyad interviews were chosen as the primary data source. In joint interviews, patient and spouse can corroborate or supplement each other’s stories. They can probe, correct, challenge or introduce fresh themes for discussion that can provide richer data (Taylor & de Vocht 2011). Joint interviews also enabled spousal interactions as a source of data (Astedt-Kurki et al. 2001). To illustrate, a spouse quietly left the dyad interview and returned with medicine and a glass of water for her husband. She did not articulate this activity and returned quietly to the interview a minute later. This type of interaction illustrating her approach to a simple caregiving task would be lost in individual interviews. To complement the dyad interviews, also group interviews were conducted, two with spouses (n = 2 and 7) and two with patients (n = 3 and 7). For practical reasons, not all spouses were able to participate in the group interviews. The group interviews were conducted at the hospital in a private room.

Data analysis Assuming that the spouses’ main concerns and responsive strategies are interrelated, we believe the interviews also gave us an indication of how the spouses act. Analysis started during the initial round of interviews with open

Eligible couples (n = 33) Excluded couples (n = 15) • No answer (n = 14) • Declined participation (n = 1) Enrolled couples (n = 18) Early withdrawel (n = 3) • Patients (n = 1) • Partners (n = 2) Completed 12-month Interview • Patients (n =17) • Partners (n =16)

Figure 1 Participant enrolment. © 2015 John Wiley & Sons Ltd

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coding conducted in accordance with GT methodology (Glaser 1978). The developed codes were merged into categories and by constantly coding, analysing and theoretically sampling new data, we gradually identified categories and their dimensions and properties in an active interplay between data and the researchers. When a higher order category consistently relating to many other categories was identified, this core category was chosen as the basis of a latent structural pattern of the substantive theory and the starting point of further selective and theoretical coding (Glaser 1998). When the subsequent data collection and analysis did not seem to make further contributions to the emerging theory, it was considered theoretically saturated. Written memos helped us to stay theoretically sensitive, as we were able to track the emergence of provisional ideas and compare those with later findings. The semi-structured interview guides were refined several times. The 60-90-minute interviews were audio-taped and transcribed verbatim. NVivo8 (QSR International, Melbourne, Australia) was used for data management throughout the analysis.

Trustworthiness The criteria for critically appraising a GT are whether the findings ‘fit’, ‘work’, are ‘relevant’ and ‘modifiable’ (Glaser 1978). From a critical realist epistemological stance, the concept ‘fit’ is a simple way to express correspondence to social reality and the central function is to enable external validation of research in social processes (Lomborg & Kirkevold 2003). As described above, we carefully adhered to the analytic strategies of the methodology to allow the categories to emerge from the interview data rather than from any pre-established theoretical perspective. This procedure served to ensure that our findings fit well to the situation of Danish spouses of ICU survivors during the first year of patient recovery. Not every future spouse will follow the trajectory from spouse to caregiver and back, but we believe our findings explain typical patterns of reaction of ICU spouses and might possibly predict what other spouses may experience. We believe the theory is relevant to clinical practice. If new measures to support spouses are implemented, the post-ICU experiences of spouses may change and the theory be modified accordingly.

Findings The context of post-ICU convalescence To illustrate the context of post-ICU convalescence, characteristics of the spouses and patients are provided in Table 1 © 2015 John Wiley & Sons Ltd

Post-ICU spousal caregiving

and below. Most of the spouses were in good health, but a few reported physical problems, such as pain and arthritis. One spouse described social problems and a history of drug abuse. The couples had been together from 4 to 45 years. One couple separated during the first year after discharge from the ICU and one spouse received psychological counselling from a general practitioner (GP). The demographic data from the sample of 18 spouses correspond to the 18 ICU survivors – see Table 1. The ICU survivors reported a wide range of physical, cognitive or psychosocial issues requiring considerable rehabilitation (see also  Ag ard et al. 2012, 2014). Typically, the prospect of the patient’s final recovery was unclear to the spouses, particularly in the early phases of convalescence, causing uncertainty about their future lives. A wife said: ‘Where will it end and what will the result be? How much will our lives change?’ (Spouse 7; 3-month interview)

From spouse to caregiver and back The main concerns of the spouses were to promote progress in the patient’s recovery while simultaneously keeping the couple’s practical and social lives together. The spouses resolved their concerns by shifting roles from spouse to caregiver and back, which was identified as the core category of the study. The spousal role shifts progressed in a dynamic process initially triggered by the critical illness incident and later influenced by the patient’s gradual recovery. The role shifts involved four elements: (1) committing to caregiving; (2) acquiring caregiving skills; (3) negotiating level of caregiving and (4) gradually leaving the caregiver role. Spousal caregiving comprised five dimensions: observing, assisting, coaching, advocating and managing activities (Figure 2). Committing to caregiving Commitment to the task was a fundamental vehicle for spouses to take on the caregiver role. The spouses felt responsible for the recovery of the patient, and the couples’ household and daily life together. Some spouses immediately committed themselves to caring for the patient and took on an active role, while others were more hesitant or insecure about how to act. One spouse, unable to deal with the patient’s illness, left home for some time but later returned, committed to stay and care for her partner. Acquiring caregiving skills The spouses had no special caregiving experience prior to the patient’s illness. When asked how they coped, they all responded in a similar fashion: ‘We take things as they come.’ If hesitant in the initial phase of recovery, as the 1895

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33 39 42 39 30 43 55 48 58 73 57 58 60 62 66 60 66 72

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18

F M M M F M F F M M F F F F F F F M

Sex

37 37 37 37 UE 37 20 33 37 Ret 37 32 37 37 Ret 37 Ret Ret

37 37 37 37 UE 37 UE 33 37 Ret 37 32 Ret 37 Ret 37 Ret Ret

Post-ICU employment* 7 17 10 42 UE 7 146 34 21 Ret 25 35 7 9 Ret 0 Ret Ret

Sick leave F/T (days) 0 7 0 128 UE 21 0 0 0 Ret 106 0 51 0 Ret 72 Ret Ret

Sick leave P/T (days) 1 2 1 3 – 1 – 1 1 – – – – – – – – –

Children living at home 155 127 35 14 3 3 35 30 127 110 11 63 59 47 87 87 10 4

Distance to ICU† 75 2 35 14 3 3 10 30 127 72 11 16 59 15 38 87 10 4

Distance to hospital†

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From spouse to caregiver and back: a grounded theory study of post-intensive care unit spousal caregiving.

To explore the challenges and caring activities of spouses of intensive care unit survivors during the first year of patient recovery...
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