Participation and support in intensive care as experienced by close relatives of patients—A phenomenological study

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Summary

Aim

The aim of this study was to explore participation and support as experienced by close relatives of patients at an intensive care unit (ICU).

Method

This study used the phenomenological approach as developed by Dahlberg et al. (2008) as a method for reflective lifeworld research. Seven close relatives of critically ill patients cared for at an ICU were interviewed. The data were analysed with a focus on meanings.

Results

Being allowed to participate in the care of critically ill patients at an ICU is important for close relatives to the patients. Their experiences can be described as having four constituents: participation in the care of and being close to the patient; confidence in the care the patient receives; support needed for involvement in caregiving; and vulnerability.

Conclusion

Participation with and support from health-care professionals are important for the relatives’ well-being and their ability to contribute to the patients’ care. Health-care professionals, especially critical care nurses, need to create an atmosphere that invites relatives to participate in the care provided at an ICU.

Introduction

Family members are important as the family is involved in the care when a person becomes a critically ill patient in an intensive care unit (ICU). In research, the involvement of families in the care of critically ill patients has been addressed (Azoulay et al., 2003, Bailey et al., 2010, Garrouste-Orgeas et al., 2010). Verhaeghe et al. (2005) argue that there is a need for qualitative studies to optimise family care in intensive care. They found that caregivers underestimated all of the needs of family members and consequently did not meet their needs. Even if patient-centred care and the perspective of the family have been a focus of nursing, there seems to remain more to be done from that point of view in the health care of today.

In practice and in the current policy of health care, the notion of patient-centred care has gained in importance. Even if patient-centred care has been focussed on in recent decades (Mitchell et al., 2000, Robinson, 1991, Vogel, 1993), a greater emphasis is nevertheless needed on patient-centred care and its meaning. Dahlberg et al. (2009) maintain that the conceptual underpinning of patient-centred care has been vague as defined so far in policy documents, which makes the meaning unclear (Dahlberg et al., 2009). The delivery of health care is also guided by professionals’ values and beliefs. Therefore, a philosophy of care is needed that emphasises the perspective and the needs of the patient and their families or close ones. Mitchell et al. (2000) argue that patient-centred care needs to be viewed from a philosophical perspective and they have described a need to integrate thoughts of human becoming theory with patient-centred care. In line with that, Dahlberg et al. (2009) have developed a conceptualisation of ‘lifeworld-led care’ and indicate that it is more than patient-led care. ‘Lifeworld-led care’ involves an emphasis on the complexity of personhood, health and illness, founded in phenomenological philosophy. An existential view of being human is embedded in the approach that accommodates freedom and vulnerability and embraces respecting patient preferences and enabling patients and their families to participate in ICU care. From that point of view, knowledge is needed regarding caring phenomena such as participation and support, as experienced from the perspective of patients or their close ones.

Both the situation and the environment at the ICU are stressful for the patient and their family. Research shows that being critically ill is a stressful experience for the critically ill person (Almerud et al., 2007) that also affects their family (Engström and Söderberg, 2004). Hupcey (2000) has described the overarching need of ICU patients to feel safe and this feeling of safety is influenced by family and nurses on the ICU. For this reason, the perspectives of both patients and their families are important during the time on the ICU (Eriksson et al., 2011) and the presence of family members is reported to be important in the support of the critically ill patient (Bergbom and Askwall, 2000, Hupcey, 2001, Engström and Söderberg, 2004, McKiernan and McCarthy, 2010). Family-centred care has been highlighted in recent decades and families are being offered a more active role in the care in the ICU. ICU caregivers have been reported to be positive towards inviting family members to participate in care activities (Azoulay et al., 2003, Garrouste-Orgeas et al., 2010). Even if families were satisfied with the care on the ICU, many family members reported symptoms of anxiety and some of depression (Garrouste-Orgeas et al., 2010). It has also been reported that nurses have demonstrated good knowledge of the needs of relatives and nurses have reported effective nursing interventions in supporting the needs of relatives (Buckley and Andrews, 2011). Even if nurses reported that they were supportive and that they had knowledge of the needs of relatives, this knowledge may not necessarily be translated into practice and action.

Participation and support are central concepts in nursing. In research, support has been studied in terms of social support for the critically ill patient (Hupcey, 2001) and patient participation has been studied as patients’ involvement in and evaluation of a follow-up programme at a nurse-led clinic for patients who had been discharged from an ICU (Glimelius Petersson et al., 2011), or with a focus on family attendance at rounds to facilitate communication with family members of patients in intensive care (Jacobowski et al., 2010). Shared decision making is a challenge as the needs of family members vary. The study of family rounds found that these can improve some families’ satisfaction, whereas other families felt rushed to make decisions. Family participation has also been studied regarding families’ opinions on their desire to provide care or to be active in the care given (Azoulay et al., 2003, Garrouste-Orgeas et al., 2010).

Participation and support are complex phenomena in the care of ICU patients and knowledge is needed on how to understand these concepts. Our study was conducted to further illuminate relatives’ experiences of participation and support, from their point of view. When the meaning of participation and support is vague or unclear, problems may be encountered in assessing support and undertaking nursing interventions. Therefore, we assert that knowledge is needed about what support and participation mean from the perspective of the people close to a critically ill patient in an ICU and these phenomena would benefit from further investigation.

Section snippets

Aim

The aim of this study was to explore the phenomena of participation and support as experienced by close relatives of patients in an ICU.

Method

In this study, we used the phenomenological approach developed by Dahlberg et al. (2008) for a method of reflective lifeworld research (RLR). The RLR approach is based on phenomenological epistemology and builds on Husserl's theory of human intentionality and the lifeworld. The lifeworld forms a foundation on which human experiences and caring-science phenomena such as illness, health or support can be viewed. The approach was employed to describe the experiences of support and participation of

Results

It is meaningful for those close to patients on the ICU to be allowed to be present and participate in the care of critically ill patients. Participation entailed being involved and being present, physically or emotionally, in the care. Experiences of participation and support were related to each other. When the close relatives felt that professionals sustained their participation and involvement, or felt confident with the care given on the ICU and were satisfied that care activities were

Discussion

Results show the importance of close relatives being allowed to participate in the care of critically ill patients and being close to the patients at the ICU. As described in the Introduction, the importance of family members’ perspectives in the care at the ICU has been highlighted in earlier research. However, patient-centred care has been researched for many years and there remain barriers to the patient-centred care of today. Consequently, more knowledge is needed to improve the involvement

Conclusion

This study highlights the importance of participation and support. Participation with and support from health-care professionals are important phenomena for the well-being of the relatives and their ability to contribute to the patients’ care. Participation and support were experienced through the attitudes of health-care professionals and through meetings with them. If relatives are to be involved in care, they must be accepted and invited to participate, and approaches and attitudes of

Contributions

Study design: HB, CG and AS; data collection: HB and CG; data analysis: HB, CG and AS; drafting the manuscript: HB, CG and AS. AS supervised the study.

Funding

This study received grants from the Skaraborg Institute for Research and Development and was also funded by the Research and Development unit at Skaraborg Hospital.

Conflict of interest

The authors have no conflict of interest.

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