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To explore the views and preferences for advance care planning from the perspectives of residents, family members and healthcare professionals in long-term care facilities.
A qualitative descriptive design.
We conducted semi-structured interviews with 12 residents of long-term care facilities, 10 family members and 14 healthcare professionals. Data were analysed using reflexive thematic analysis. The social ecological model was used to develop implementation recommendations.
We constructed a conceptual model of barriers and facilitators to advance care planning in long-term care facilities, drawing upon four dominant themes from the qualitative analysis: (1) The absence of discourse on end-of-life care: a lack of cultural climate to talk about death, the unspoken agreement to avoid conversations about death, and poor awareness of palliative care may hinder advance care planning initiation; (2) Relational decision-making process is a dual factor affecting advance care planning engagement; (3) Low trust and ‘unsafe’ cultures: a lack of honest information sharing, risks of violating social expectations and damaging social relationships, and risks of legal consequences may hinder willingness to engage in advance care planning; (4) Meeting and respecting residents' psychosocial needs: these can be addressed by readiness assessment, initiating advance care planning in an informal and equal manner and involving social workers.
Our findings show that residents' voices were not being heard. It is necessary to identify residents' spontaneous conversation triggers, articulate the value of advance care planning in light of the family's values and preferences, and respect residents' psychosocial needs to promote advance care planning in long-term care facilities. Advance care planning may alleviate the decision-making burden of offspring in nuclear families.
The evidence-based recommendations in this study will inform the implementation of context-specific advance care planning in Asia-Pacific regions.
Patients and caregivers contributed to the interview pilot and data collection.
To gain an understanding of children's experiences of expressing their views and having them heard in Australian healthcare settings.
Child-centred qualitative research. A deductive qualitative content analysis was undertaken.
Data were collected from 20 Australian children and young people between the ages of 7 and 18 years old using the ‘draw, write and tell’ method.
Children's experiences of ‘space’ and ‘voice’, and therefore the opportunity to express their views in health care were, in the main, positive. At the same time, their experiences of ‘audience’ and ‘influence’, the situations in which those views are given due weight, were overwhelmingly described as negative.
Australian paediatric health services appear to have responded to calls to provide children with the opportunity to express their views and thus are delivering on the elements of ‘space’ and ‘voice’, whereas the realisation of ‘audience’ and ‘influence’ has some way to go. Due weight is not always given to children's views.
The Lundy model can be used to facilitate a better understanding of the concept of voice, and the responsibility of health organisations in implementing the rights of children and young people, as articulated in Article 12.
Children and young people have a right to express their views and have them heard in health care, but their experiences in Australian health care are unknown. While children's experiences of expressing their views in health care were mostly positive, their views are not always taken seriously or given due weight. This research impacts child health professionals in Australia and internationally.
The study is reported using the Standards for Reporting Qualitative Research (SRQR).
Members of the Youth Advisory Council of two tertiary children's hospitals were consulted and invited to become members of the research team.
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