The Compassionate Communities Connectors model for end-of-life care: a community and health service partnership in Western Australia

Aoun, Samar; Abel, Julian; Rumbold, Bruce; Cross, Kate Wilkinson; Moore, Jo Ellen; Skeers, Piari; Deliëns, Luc

doi:10.1177/2632352420935130

Cited by 24 publications

(48 citation statements)

References 18 publications

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“…Moreover, they offer frameworks in which partnerships can be developed with patient communities with distinctive EOL needs, such as those with noncancer conditions and thus provide a more inclusive approach to EOL care. 17 To achieve this requires direct input from the consumers about their experiences of unmet needs and how these can be met with better partnerships between the health services and the community. This includes consumers involved in the co-design.…”

Section: Discussionmentioning

confidence: 99%

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

et al. 2021

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Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care.

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Section: Discussionmentioning

confidence: 99%

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

et al. 2021

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“…A public health approach to palliative and end of life care is able to achieve an integration of tertiary, primary, and community services through active consumer engagement in designing and delivering care to provide a comprehensive approach that engages the assets of local communities. This approach constructs a framework in which partnerships can be developed with patient communities with distinctive end of life needs, such as those with non-cancer conditions, thus providing a more inclusive approach to EOLC [ 30 ]. To implement this approach, we need to hear directly from the consumers about their experiences of unmet needs and how these could be met with better partnerships between the health services and the community, with the consumer involved in the co-design.…”

Section: Discussionmentioning

confidence: 99%

Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care

et al. 2021

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Background: Consumer experience of palliative care has been inconsistently and selectively investigated. Methods: People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received. Results: 353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement. Conclusions: A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings.

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“…The task before both formal and informal services is to be alert to the operational narrative of a family or social network and to support them, if needs be, to expand or enrich that narrative. This can be undertaken by social network enhancement in a compassionate community model of care, 26 introducing additional members who can offer different perspectives and approaches. Improving grief literacy, in terms of skills and knowledge to support the bereaved, is vital for informal networks to be effective: recognising grief, knowing how to find quality information, being cognisant of warning signs of more complex matters, careful listening that supports comments and questions with the potential to broaden perspective, knowing how to ask questions in a sensitive manner and how to help the bereaved find resources.…”

Section: Discussionmentioning

confidence: 99%

Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease

Aoun

Noonan

Thomas³

et al. 2021

Palliat�Care

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Background: There are few illnesses as disruptive as motor neurone disease, a fatal neurodegenerative condition, where diagnosis introduces a clinical narrative of inevitable decline through progressive immobilisation into death. Recent evidence suggests that bereaved motor neurone disease family caregivers are more likely to be at moderate or high risk of complicated grief. Methods: Qualitative data from an anonymous national survey of bereaved motor neurone disease caregivers ( n = 393) was examined through thematic analysis to explore the experiences of people who are at low, moderate, and high risk of complicated grief. Up to 40% responded to three open-ended questions: How caregivers viewed their coping strategies; the advice they had for others and what had been positive about their experience. Results: Ten themes informed the narratives of illness and loss. All three groups shared similar experiences but differed in their capacity to address them. The low-risk group seemed to recognise the uncertainty of life and that meaning needed to be created by them. For the moderate-risk group, while motor neurone disease was a major disruption, they could with support, regroup and plan in different ways. The high-risk group did not have many resources, external or internal. They felt let down when professionals did not have answers and could not see or did not know how to change their ways of responding to this unwanted situation. Conclusion: The differences in these three profiles and their narratives of loss should alert health and community service providers to identify and address the caregivers’ support needs early and throughout the caregiving journey. Motor Neurone Disease Associations are involved throughout the illness journey and need to invest in a continuum of care incorporating end-of-life care and bereavement support. Community grief literacy and enhancement of social networks are keys to improved support from families and friends that can enable the focus to be on feelings of empowerment rather than abandonment.

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The Compassionate Communities Connectors model for end-of-life care: a community and health service partnership in Western Australia

Cited by 24 publications

References 18 publications

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care

Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease

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