Life In The Slower Lane

Here is the PICO analysis for the twenty-seventh uploaded article:

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✅ PICO Analysis

Full Article Title:

Barriers to Providing End-of-Life Care for People with Dementia: A Whole-System Qualitative Study

Type of Study:

Whole-system qualitative study using semi-structured interviews and focus groups

Journal and Year:

BMJ Supportive & Palliative Care (2012); 2:103–107

DOI: 10.1136/bmjspcare-2011-000178

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P – Population

• Setting:
  • Health and social care system in a London borough (Haringey, UK)
• Participants:
  • 7 recently bereaved informal carers of people with dementia
  • 50 professionals from across the health and social care spectrum including GPs, hospital nurses, ambulance staff, care home managers, palliative care teams, Admiral Nurses, social care managers, community matrons, and others 

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I – Intervention (or Exposure)

• Exposure Studied:
  • Experiences and perspectives on barriers to delivering high-quality end-of-life (EOL) care for people with dementia
  • The study used Rapid Participatory Appraisal (RPA) methodology involving qualitative interviews and focus groups
  • Explored interactions between patients, family carers, and a wide range of professionals across hospital, community, and residential care settings 

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C – Comparison

• No direct comparator group (qualitative design)
• Implicit comparisons were made between good and poor care experiences, and between participants with different roles and contexts (e.g. acute vs. community, health vs. social care) 

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O – Outcomes

Main Findings – Barriers Identified:

1. Fragmented Care Pathways
   • Poor inter-agency coordination, especially out-of-hours
   • Lack of awareness of patient condition across services
   • Inappropriate or avoidable hospital admissions due to uncertainty or unavailability of alternatives
2. Impact of Hospitalisation
   • Repeated, distressing admissions
   • Deterioration due to environment, poor dementia-specific care, lack of dignity
   • Staff lack training or support for managing behavioural symptoms
3. Lack of Advance Care Planning (ACP)
   • Minimal proactive discussion of treatment wishes
   • Staff uncertain or fearful about implementing ACP directives
   • Family carers unsupported in making complex decisions
4. Carer Burden
   • Carers initiated and coordinated care in absence of support
   • Emotional and physical burden substantial
   • Carers felt abandoned during bereavement phase
5. Staff Skills and Training Deficits
   • Ambulance, hospital, and even hospice staff lacked dementia-specific training
   • High turnover in care homes made training unsustainable
   • Staff described helplessness and lack of confidence in managing dementia at EOL 

Good Practices Identified:

• Support from Admiral Nurses across the illness trajectory
• Community Matron “in-reach” models into care homes
• Use of Gold Standards Framework for structured EOL care
• Value of stable, ongoing support services—though often threatened by staff turnover or funding instability 

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Outcome Classification

• Person-centred outcomes:
  • Highlighted both the harm from poor care transitions and hospitalisation, and the value of respectful, coordinated support
• Process outcomes:
  • Identification of systemic communication failures, lack of ACP routines, training gaps, and service fragmentation
• Health system outcomes:
  • Avoidable hospitalisations, inefficient use of emergency services, underuse of community and palliative supports

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Summary Conclusion

This qualitative, whole-system evaluation revealed multiple systemic barriers to delivering good end-of-life care for people with dementia. Fragmented services, lack of inter-agency communication, and a pervasive sense of uncertainty about dementia trajectories led to distressing hospitalisations, poor planning, and unsupported carers. Staff reported training deficits and role confusion, particularly during crises. Despite this, examples of good practice (e.g., Admiral Nurses, structured community support) show that improvement is possible. The findings support a coordinated, dementia-specific approach to training, ACP, and community-based EOL care .

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