| Title |
Managing ‘shades of grey’: a focus group study exploring community-dwellers’ views on advance care planning in older people
|
|---|---|
| Published in |
BMC Palliative Care, January 2017
|
| DOI | 10.1186/s12904-016-0175-7 |
| Pubmed ID | |
| Authors |
Natasha Michael, Clare O’Callaghan, Emma Sayers |
| Abstract |
Community-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition. However, few have had advance care planning discussions or completed documentation to ensure future care preferences are acted upon. This study examines the awareness, attitudes, and experiences of advance care planning amongst older people and unrelated offspring/caregivers of older people residing in the community. Qualitative descriptive research, which included focus groups with older people (55+ years) and older people's offspring/caregivers living in an Australian city and surrounding rural region. Data was analysed using an inductive and comparative approach. Sampling was both convenience and purposive. Participants responded to web-based, newsletter or email invitations from an agency, which aims to support healthcare consumers, a dementia support group, or community health centres in areas with high proportions of culturally and linguistically diverse community-dwellers. Eight focus groups were attended by a homogenous sample of 15 older people and 27 offspring/caregivers, with 43% born overseas. The overarching theme, 'shades of grey': struggles in transition, reflects challenges faced by older people and their offspring/caregivers as older people often erratically transition from independence and capacity to dependence and/or incapacity. Offspring/caregivers regularly struggled with older people's fluctuating autonomy and dependency as older people endeavoured to remain at home, and with conceptualising "best times" to actualise advance care planning with substitute decision maker involvement. Advance care planning was supported and welcomed, x advance care planning literacy was evident. Difficulties planning for hypothetical health events and socio-cultural attitudes thwarting death-related discussions were emphasised. Occasional offspring/caregivers with previous substitute decision maker experience reported distress related to their decisions. Advance care planning programs traditionally assume participants are 'planning ready' to legally appoint a substitute decision maker (power of attorney) and record end-of-life treatment preferences in short time frames. This contrasts with how community dwelling older people and offspring/caregivers conceive future care decisions over time. Advance care planning programs need to include provision of information, which supports older people's advance care planning understanding and management, and also supports offspring/caregivers' development of strategies for broaching advance care planning with older people, and preparing for potential substitute decision maker roles. Development and integration of strategies to support older people's decision-making when in the 'grey zone', with fluctuating cognitive capacities, needs further consideration. Findings support an advance care planning model with conversations occurring at key points across a person's lifespan. |
X Demographics
The data shown below were collected from the profiles of 13 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United Kingdom | 3 | 23% |
| Australia | 2 | 15% |
| Canada | 2 | 15% |
| United States | 1 | 8% |
| Mexico | 1 | 8% |
| New Zealand | 1 | 8% |
| Unknown | 3 | 23% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 8 | 62% |
| Practitioners (doctors, other healthcare professionals) | 5 | 38% |
Mendeley readers
The data shown below were compiled from readership statistics for 242 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 242 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 35 | 14% |
| Student > Bachelor | 29 | 12% |
| Researcher | 25 | 10% |
| Student > Ph. D. Student | 23 | 10% |
| Student > Doctoral Student | 15 | 6% |
| Other | 42 | 17% |
| Unknown | 73 | 30% |
| Readers by discipline | Count | As % |
|---|---|---|
| Nursing and Health Professions | 52 | 21% |
| Medicine and Dentistry | 40 | 17% |
| Psychology | 21 | 9% |
| Social Sciences | 18 | 7% |
| Agricultural and Biological Sciences | 6 | 2% |
| Other | 25 | 10% |
| Unknown | 80 | 33% |
Attention Score in Context
This research output has an Altmetric Attention Score of 9. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 31 May 2017.
All research outputs
#4,173,626
of 24,589,002 outputs
Outputs from BMC Palliative Care
#571
of 1,398 outputs
Outputs of similar age
#78,987
of 431,155 outputs
Outputs of similar age from BMC Palliative Care
#11
of 16 outputs
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