Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study

Abstract

Background: Transitions between care settings (hospice, hospital and community) can be challenging for patients and family caregivers and are often an under-researched area of health care, including palliative care. Aim: To explore the experience of transitions between care settings for those receiving specialist palliative care. Design: Qualitative study using thematic analysis. Setting/participants: Semi-structured interviews were conducted with adult patients ( n = 15) and family caregivers ( n = 11) receiving specialist palliative care, who had undergone at least two transitions. Results: Four themes were identified. (1) Uncertainty about the new care setting. Most participants reported that lack of information about the new setting of care, and difficulties with access and availability of care in the new setting, added to feelings of uncertainty. (2) Biographical disruption. The transition to the new setting often resulted in changes to sense of independence and identity, and maintaining normality was a way to cope with this. (3) Importance of continuity of care. Continuity of care had an impact on feelings of safety in the new setting and influenced decisions about the transition. (4) Need for emotional and practical support. Most participants expressed a greater need for emotional and practical support, when transitioning to a new setting. Conclusions: Findings provide insights into how clinicians might better negotiate transitions for these patients and family caregivers, as well as improve patient outcomes. The complexity and diversity of transition experiences, particularly among patients and families from different ethnicities and cultural backgrounds, need to be further explored in future research.

Meanings and Experiences of End-of-Life Patients and Their Family Caregivers in Hospital-to-Home Transitions: A Constructivist Grounded Theory Study

“…Transitions between care facilities faced by EoL patients with severe illnesses and their family caregivers highlight the need for person-centred care and continuity, implying that improved integration of palliative care across venues is essential [ 27 ]. Patients and their families are both at risk during transitions, which could lead to an increase in family stress.…”

“…Improvements in communication between teams and across organizations, clarification of accountability as patients move between settings, standardization of discharge procedures, and continuing training for health professionals on psychosocial and spiritual support, communication skills, and information sharing should be developed and integrated to ensure safe transitions for patients and their families [ 27 ]. Another potential strategy to improve transitions is to create the role of nursing care coordinator, dedicated to the coordination and management of transitions [ 15 ].…”

“…Transitioning from hospital to home is a vulnerable stage in the care trajectory of EoL patients [ 15 ], yet few studies consider the experiences of both patient and family caregiver in palliative care transitions. People with different palliative care conditions, especially those close to death, may have different interpretations of transition of care, which can be “defined as significant life events that entail the integration of a new situation or circumstance into a person’s life” [ 27 ] (p. 125).…”

Communication of palliative care needs in discharge letters from hospice providers to primary care: a multisite sequential explanatory mixed methods study

“…Efficient and effective cross-boundary communication is key, particularly as care transitions can risk patient safety [15,17]. National [18] and international [19,20] research indicates that communication issues are prevalent during care transitions [21], which can lead to adverse events such as readmissions [22,23] and other consequences such as "inefficient use of [general practitioner] time" [24]. Little is known about the content of communication at the time of discharge from hospice-based specialist palliative care services into community and primary care.…”

Transfer and transitioning between palliative care settings

“…Palliative care is complex, involves a multidisciplinary team, and sometimes care is delivered in different settings to ensure the continuity of that care. The critical role of palliative care in relieving health-related suffering warrants its application across varied settings including hospitals, nursing homes, outpatient settings, specialised clinics, hospices, residential care facilities, and the patient's home (19). Moving from one setting to another is a reality which creates a need to ensure continuity of care.…”