14 research outputs found
Challenges in supporting lay carers of patients at the end of life: results from focus group discussions with primary healthcare providers
Background: Family caregivers (FCGs) of patients at the end of life (EoL) cared for at home receive support from professional and non-professional care providers. Healthcare providers in general practice play an important role as they coordinate care and establish contacts between the parties concerned. To identify potential intervention targets, this study deals with the challenges healthcare providers in general practice face in EoL care situations including patients, caregivers and networks.
Methods: Focus group discussions with general practice teams in Germany were conducted to identify barriers to and enablers of an optimal support for family caregivers. Focus group discussions were analysed using content analysis.
Results: Nineteen providers from 11 general practices took part in 4 focus group discussions. Participants identified challenges in communication with patients, caregivers and within the professional network. Communication with patients and caregivers focused on non-verbal messages, communicating at an appropriate time and perceiving patient and caregiver as a unit of care. Practice teams perceive themselves as an important part of the healthcare network, but also report difficulties in communication and cooperation with other healthcare providers.
Conclusion: Healthcare providers in general practice identified relational challenges in daily primary palliative care with potential implications for EoL care. Communication and collaboration with patients, caregivers and among healthcare providers give opportunities for improving palliative care with a focus on the patient-caregiver dyad. It is insufficient to demand a (professional) support network; existing structures need to be recognized and included into the care
Context, mechanisms and outcomes in end of life care for people with advanced dementia
yesBackground: The majority of people with dementia in the UK die in care homes. The quality of end of life care in
these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and
outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from
the perspective of health and social care providers.
Method: The design of the study was qualitative which involved purposive sampling of health care professionals to
undertake interactive interviews within a realist framework. Interviews were completed between September 2012
and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and
outcomes. The settings were private care homes and services provided by the National Health Service including
memory clinics, mental health and commissioning services in London, United Kingdom. The participants included
14 health and social care professionals including health care assistants, care home managers, commissioners for
older adults’ services and nursing staff.
Results: Good palliative care for people with advanced dementia is underpinned by the prioritisation of
psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including
symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors
that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a
complex health and social care system, societal and family attitudes towards staff; staff training and experience,
governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics.
Mechanisms that influence the quality of end of life care include: level of health care professionals’ confidence,
family uncertainty about end of life care, resources for improving end of life care and supporting families, and
uncertainty about whether dementia specific palliative care is required.
Conclusions: Contextual factors regarding the care home environment may be obdurate and tend to negatively
impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to
improvement. However, systemic changes to the care home environment are necessary to promote consistent,
equitable and sustainable high quality end of life dementia care across the UK care home secto