From: What do patients and family-caregivers value from hospice care? A systematic mixed studies review
Qualitative findings of what patients and carers valued | Quantitative findings of what patients and carers valued | What this means | Overarching finding |
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Availability of staff and access to out of hours for individuals receiving support from Hospice at Home to ensure that patients and carers had their physical and psychological needs met. Not everyone was able to access certain services associated with Hospice at Home. | Carers valued the support provided to them ensure patients’ wishes to stay at home were met. When compared to a hospital, hospice staff were mentioned more positively | Access to specialist staff and out of hours support was valued by patients and carers but was not always available to them. | Equity in the provision of support is an essential value to ensure patients and their family caregivers are receiving timely interventions day or night |
Those nearing end of life valued a wide variety of diversional and therapeutic activities suitable to their changing needs and preferences | Patients valued a wide range of activities but patient satisfaction relating to the range of activities offered by the hospices has consistently declined over the years | Diversional and therapeutic activities were valued by people at the end of life, but hospices appear to be limiting the range and their availability. | Choice and accessibility was a consistent value expressed by patients thus creating a need for a wide range of activities, especially at the end of life. |
Those closely affected by death valued that they were communicated with in a sensitive way and were offered immediate and ongoing bereavement, emotional and spiritual support. | Some carers felt abandoned by the hospice after the death of a loved one whilst others mentioned the benefits associated with a follow up call | Carers valued empathetic and appropriate bereavement care and follow up but not everyone received the same level of access to bereavement services and support | Carers placed high value on bereavement support, but the reactive nature or lack services resulted in carers foregoing support |
Patients valued the provision of social opportunities, with many believing this had helped them retain some semblances of normality. Carers sometimes referred to the isolating nature of caring and some mentioned that they had taken advantages of ad hoc social opportunities (talking to other carers in shared rooms). | Family caregivers attended a bereavement support group to talk to someone outside their family | Patients and carers valued the social aspects of care and support but carers also need to be offered planned social opportunities. | Caregivers valued the provision of social opportunities and could therefore benefit from access to official social support networks |
Continuity, accessibility and consistency in contact between patients, carers and key medical and social care professionals were clearly expressed as vital by both carers and patients | Carers identified that the lack of consistency in staff resulted in care providers who were unaware of the patients’ medical. This was especially prevalent within the Hospice at Home setting. | Patients and carers highly valued continuity of care but the standard of continuity varied and did not always meet expectations | Equity in the provision of support is an essential value to ensure patients and their family caregivers are receiving timely interventions day or night |
Respite care offered valued breaks for carers which helped them retain a sense of normality and ensured they were able to continue their caring role but in some instances, respite could have been offered sooner. | Respite care was valued by carers across all settings and was a prominent reason for patient referral to day care | Respite care was highly valued but, in some instances, needed to be offered sooner. | Carers placed high value on proactive support, but they did not always consistently receive it |
The provision of hospice staff night aides during times of crisis were of great importance to carers. Despite this, some carers described feelings of abandonment during times of need | A large proportion of carers were especially grateful for the ease at which they could access a wide variety of staff. No reference was made to a lack of necessary staff | The provision of staff who were able to support patients in their own homes at night were valued highly but their availability varied. | Equity in the provision of support is an essential value to ensure patients and their family caregivers are receiving timely interventions day or night |