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Table 4 Findings relating to other access issues

From: Exploring socioeconomic inequities in access to palliative and end-of-life care in the UK: a narrative synthesis

Author(s)

Care setting

Aims

Method

Socioeconomic measure

Population

Key findings relating to review questions

Barclay et al., 2003 [48]

Quality score 32

GP services

Compare palliative care training of GPs in deprived south Wales valleys with rest of Wales.

Survey

Geographic regions

HCP

Access issues: How HCP assessed patients.

Key findings: There was no evidence of a difference between GPs in terms of palliative care training in areas of high and low social deprivation at any of the four career stages. GPs in the more deprived region were older, longer qualified and more likely to be non-UK graduates.

Cartwright, 1992 [41]

Quality score 22

Inpatient hospice services (specialist palliative care)

GP and home nursing (generalist palliative care)

(i) Understand the impact of social differences in mortality on life before death; and (ii) examine the extent to which experiences differ between social groups in this time.

Survey

Social class (I-V)

Definitions from 1980 Classification of Occupations.

Patients (proxy)

Access issues: Symptom burden, patient resources, patient awareness, patient need.

Key findings: More middle class had good quality of life in last year. More working class reported problems with costs of keeping home warm, adapting house to needs. More working class had financial problems.

No class difference in symptoms apart from more dry mouth reported by working class; no difference in awareness of dying or being able to find all information wanted.

Clark, 1997 [49]

Quality score 17

Hospice at home

Describe the use of a hospice at home service.

Routine data

Area deprivation (Jarman index)

Patients

Access issues: Service capacity

Key findings: Patients living in the more deprived areas received twice as many visits at home as those in the less deprived areas. Statistical significance not reported.

Dixon, et al., 2015 [7]

Quality score 31

Community services (specialist and generalist palliative care)

Identify and explore systematic differences in access or outcomes, between geographical areas, settings or different groups of service-users.

Survey

Area deprivation (Index of Multiple Deprivation)

Patients (proxy)

Access issues: Satisfaction / unmet need for care

Key findings: Families of deceased who lived in more deprived areas were statistically significantly less likely to say they received sufficient help and support, and to have received spiritual or emotional support.

Fergus et al., 2010

Quality score 29 [50]

Out of hours (generalist palliative care)

Identify key issues relating to out of hours care for palliative care patients, carers and professionals.

Qualitative interviews

Area measures of:

Income

Unemploy-ment

Social grade

Household type

Car ownership

Patients

Carers

HCP

Access issues: patient understanding, communication, relationship with healthcare providers, resistance to care, service organisation, gatekeeping.

Key findings: The rigmarole of access made patients reluctant to access services.

Some patients misunderstood the service, assuming transfer was automatic.

Bad (stressful) experiences led to decision not to contact the service again and district nurses felt it hindered contact with GPs.

There was a need for better communication and information sharing to improve decisions during out-of-hours care.

Gatrell and Wood, 2012 [51]

Quality score 34

Inpatient hospice (specialist palliative care)

Visualise and understand geographic patterns of both the demand for, as well as the supply of, specialist inpatient hospices.

Spatial analysis

Area deprivation (Index of Multiple Deprivation)

Hospices

Access issues: Geographic accessibility

Key findings: There are 5.35 million adults living in areas of England and Wales that have higher than average deprivation and demand (cancer deaths) but below average access to inpatient hospice.

Hanratty et al., 2012 [52]

Quality score 30

End-of-life care (any)

Explore people’s experiences of transitions between healthcare settings at the end of life.

Qualitative interviews

Occupational class

Disadvantaged areas (Spearmen areas)

Patients

Access issues: Communication, relationship with healthcare providers, patient attitudes, service organisation.

Key findings: Most participants were from disadvantaged areas and the findings may reflect issues around socioeconomic experiences.

Patients reported positive experiences with individuals but challenges negotiating transitions, particularly when system priorities were not aligned with patient priorities, in securing support across settings, and communication between HCP and patients.

Authors noted that findings showed little or no variation with socioeconomic status. However, socioeconomic factors were not the focus of the study.

Kessler et al., 2005 [53]

Quality score 26

Hospice

GP services

(i) Clarify the relationship between social class and place of death; and (ii) explore carer anxiety and barriers to control for people of a lower socioeconomic position receiving palliative care.

Qualitative interviews

Social class (I-V).

Taken from Standard Occupational Classification.

Patients

Carers

Access issues: Patient attitudes and awareness, relationship with healthcare providers; patient resources, information seeking

Key findings: Disadvantaged social class associated with having relatives close by and more available, expressing less desire for information, and passively receiving information.

Families often relied on their most forceful members, particularly children of higher social class, to help negotiate barriers to accessing care.

No evidence of class differences in anxiety or attitudes towards hospice or awareness of death.

Koffman et al., 2007 [54]

Quality score 31

Any palliative care

Macmillan cancer (specialist palliative care)

(i) explore the awareness of palliative care and related services among UK cancer patients; and (ii) analyse the relationship between demographic factors and patients’ knowledge-base

Survey

Area deprivation (Index of Multiple Deprivation)

Patients

Access issues: Patient awareness and understanding.

Key findings: Patients in the least deprived areas were 8.4 times as likely to recognise the term palliative care and 7 times as likely to correctly understand the role of Macmillan nurses, than those in the most deprived areas.

Rees-Roberts, M. et al. 2019 [55]

Quality score 31

Specialist palliative care (community services)

To describe and compare the features of hospice at home services in England and understand key enablers to service provision

Survey

Area deprivation (details not provided)

Hospices

Access issues: Geographic accessibility

Key findings: 7.1% of hospice at home services are provided in predominantly deprived areas, 15.7% in predominantly affluent areas, and 77.1% in mixed deprivation areas.

Seale, et al., 1997 [56]

Quality score 28

NA (death awareness)

Report the prevalence of different awareness contexts and explore the causes of differences.

Survey

Social class (I -V).

No reference or details given.

Patients (proxy)

Access issues: Patient awareness.

Key findings: Being in a higher (I and II) social class increased the odds of someone dying in full open awareness by 2.66 times, compared to being in classes IV and V. This remained statistically significant for just cancer decedents but not non-cancer decedents.

Those who died in an open awareness context were more likely to have died in a hospice.

Spruyt, 1999 [57]

Quality score 22

Community-based care (all palliative care)

Increase understanding of the Bangladeshi community’s experiences of palliative care in East London.

Qualitative interviews

Routine data

Not formally measured but local area described as deprived and disadvantaged.

Carers

Access issues: Communication, healthcare costs, healthcare quality

Key findings: Issues with finances and re-housing influenced carers’ experiences of supporting patients and their impression of the quality of formal healthcare services.

Walsh and Laudicella, 2017 [58]

Quality score 30

End-of-life care (hospital)

(i) examine whether there is a socioeconomic gradient in end-of-life healthcare costs; and (ii) whether any observed disparities are underpinned by greater use of emergency admission amongst patients in a more disadvantaged socioeconomic position.

Economic analysis

Area income deprivation (Indices of Deprivation: Income Deprivation Domain)

Patients

Access issues: Healthcare resources and costs

Key findings: End-of-life healthcare costs in England are highest amongst cancer patients who live in more income deprived areas, largely due to the higher use of emergency service by these patients.

The most deprived groups have longer stays in hospital after an emergency admission.

Wilson, 2009 [59]

Quality score 26

Nurses (specialist palliative care)

District nurses (generalist palliative care)

(i) explore whether the lifestyle factors of a patient influences nurses’ pain management decisions; and (ii) explore if post basic education and experience of pain and pain management in the clinical setting influences nurses’ attitudes in relation to pain.

Survey

Occupation

HCP

Access issues: How HCP assessed patients, stigmatising attitudes

Key findings: Generalist nurses were significantly less likely to recognise the pain described by businessman than a construction worker with a history of drink driving.

Wood et al., 2004

Quality score 28 [60]

Inpatient hospice (specialist palliative care)

Assess the extent to which those living in particular wards in North West England have equity of access to adult inpatient hospice services.

Spatial analysis

Area deprivation

Hospices

Access issues: Geographic accessibility

Key findings: 41% of wards in the North West where access was poor and demand relatively high were relatively highly deprived.

  1. HCP Healthcare Professionals