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

Ågård, Anne Sophie; Egerod, Ingrid; Tønnesen, Else; Lomborg, Kirsten

doi:10.1111/jan.12657

Cited by 62 publications

(84 citation statements)

References 60 publications

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“…Ward nurses need to address these uncertainties as family involvement is crucial also after discharge from the ICU for support of the patient during recovery in the long run after hospital discharge . A Danish interview study with relatives of former ICU patients highlighted the lack of sufficient physical and neuro‐psychosocial rehabilitation of the patient after ICU discharge . A Swedish survey study concluded that relatives needed a well‐planned transition with persisting quality before and after transfer and relatives should be encouraged to be involved .…”

Section: Discussionmentioning

confidence: 99%

Patient and spouses experiences with transition from intensive care unit to hospital ward – qualitative study

Herling

Brix

Andersen

et al. 2019

Scandinavian Caring Sciences

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Background and purpose of study Transition from the intensive care unit to the hospital ward can be considered as a vulnerable period for patients as nursing care changes hands. How the transition is experienced by the ICU patient and the family is influenced by how it is organised, communicated and executed. The transition may positively or negatively affect patient recovery. Aim To explore the experiences of intensive care unit patients and their relatives during the transition to hospital ward in order to find ways of supporting them during the transition process. Methods Eligible participants were asked for participation from April to September 2016 from a mixed medical and surgical intensive care unit (Level II) at a university hospital. We conducted six semi‐structured interviews with former intensive care unit patients and four dyad interviews with patients and spouses. Data were analysed according to the methodology Interpretive Description with the aim to discover associations, relationships and patterns within the phenomenon. Results Our analysis revealed the following three themes: (1) Taking up the mantel (2) Adjusting to ‘being one in the crowd’ and (3) Integrated spouses became visitors. It was a change from an environment with high dependence to increasing independence and a shift from attention to loneliness. Focus moved from the bodily functions to basic activities of living. Spouses experienced that their position was reduced from integrated relatives in the intensive care unit to visitors of the hospital ward. Conclusions This article shows that it is important to mentally prepare patients and their family for transfer and a gradual withdrawal of intense nursing observation and monitoring. Discharge planning should begin early and involve spouses to a higher extent as they have a major role in the recovery process far beyond hospitalisation.

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Section: Discussionmentioning

confidence: 99%

Patient and spouses experiences with transition from intensive care unit to hospital ward – qualitative study

Herling

Brix

Andersen

et al. 2019

Scandinavian Caring Sciences

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“…Ågård et al . () described how some participants expressed feelings of reward and experienced a renewed connectedness with their partner. Frivold et al .…”

Section: Health and Well‐beingmentioning

confidence: 97%

“…Relatives' qualitative accounts discuss the impact and causes of psychological stress. Relatives described feeling overwhelmed by anxiety and stress related to their role as a caregiver (Söderström et al ., ; Ågård et al ., ; Gallop et al ., ). Many cited intense feelings of fear of the future and uncertainty about becoming a caregiver (Söderström et al ., ; Ågård et al ., ; Frivold et al ., ).…”

Section: Health and Well‐beingmentioning

confidence: 99%

Outcomes and experiences of relatives of patients discharged home after critical illness: a systematic integrative review

Stayt

Venes

2018

Nursing in Critical Care

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Background Patients discharged from intensive care may experience psychological and physical deficits resulting in a long and complex rehabilitation upon discharge. Relatives are also vulnerable to psychological pathologies and diminished health‐related quality of life following the patients' critical illness. Relatives often provide care during the patients' rehabilitation, which may influence their health. Aim To report the outcomes and experiences of relatives of patients discharged home after critical illness. Design Systematic integrative review. Methods Electronic databases Cumulative Index of Nursing and Allied Health Literature, PubMed, Embase®, and PsychINFO® were searched using keywords, synonyms, and medical subject headings. Reference lists of articles and critical care journals were manually searched. Studies eligible for inclusion reported primary research and were published in English between 2007 and 2017. Studies were appraised using the Critical Appraisal Skills Programme checklists. Data were extracted and then analysed according to framework. Findings Twenty‐five studies were included: 19 quantitative, 4 qualitative, and 1 mixed method study. Three themes were identified: health and well‐being, employment and lifestyle, and caregiving role. Health and well‐being reports the incidence and significance of psychological morbidity such as post‐traumatic stress disorder, anxiety, and depression. Employment and lifestyle describes the impact of caregiving on the relative's ability to work and engage in usual social activities. The final theme describes and discusses the caregiving role in terms of activities of daily living, knowledge and skills, and adaption to the role. Conclusions There is a significant and meaningful impact on outcomes and experiences of relatives of patients discharged home after critical illness. Relatives' caregiving is embedded within the context of their psychological morbidity and social adjustment. Relevance to practice If informal care giving is to be sustainable, there is a need to design effective strategies of supporting families through all stages of the critical illness trajectory.

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“…Family caregivers’ use of protective caregiving strategies, often termed “family vigilance” (Carr, 2014), and attempts to conserve their own energy (Agard, Egerod, Tønnesen, & Lomborg, 2015) during the hospital stay have been documented in the literature. However, current literature does not specify what the family is trying to protect the patient from or strategies they use to do this, which is demonstrated in this study.…”

Section: Discussionmentioning

confidence: 99%

“…However, current literature does not specify what the family is trying to protect the patient from or strategies they use to do this, which is demonstrated in this study. In addition, the literature suggests that family caregivers attempt to conserve energy using self-care strategies, such as resting at the patient’s bedside and decreasing the length and frequency of their own visits (Agard et al, 2015; Östlund, Bäckström, Saveman, Lindh, & Sundin, 2016). Our study adds to the literature on strategies family caregivers use to protect the patient and to conserve their own energy during the hospital stay.…”

Section: Discussionmentioning

confidence: 99%

Managing Visitors During the Hospital Stay: The Experience of Family Caregivers of Patients With Traumatic Brain Injury

Oyesanya

Bowers

2017

J Fam Nurs

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Family caregivers of patients with moderate-to-severe traumatic brain injury (TBI) regularly visit the patient during the hospital stay and are involved in their care. As impairments caused by the TBI often preclude the patient from stating preferences for visitors, family caregivers often make decisions about visitors during the hospital stay. However, limited literature investigates this process. The purpose of this study was to describe family caregivers’ experience of visitors while the patient with moderate-to-severe TBI is hospitalized. Authors used grounded theory to conduct 24 interviews with 16 family caregivers. Findings showed family caregivers manage welcome and unwelcome visitors throughout the hospital stay to protect the patient’s physical and emotional safety and to conserve their own energy. Staff had limited involvement in management of unwelcome visitors. These findings have practice implications for educating hospital staff about the providing family nursing and assisting families to manage unwelcome visitors and policy implications for improving hospital visiting policies.

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

Cited by 62 publications

References 60 publications

Patient and spouses experiences with transition from intensive care unit to hospital ward – qualitative study

Patient and spouses experiences with transition from intensive care unit to hospital ward – qualitative study

Outcomes and experiences of relatives of patients discharged home after critical illness: a systematic integrative review

Managing Visitors During the Hospital Stay: The Experience of Family Caregivers of Patients With Traumatic Brain Injury

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