What are family and carer influences?
The Aged Care Act 2024 Statement of Rights says that every older person has the right to advocates, significant persons and social connections as a part of their care. [1]
The involvement of family members in care planning for older people is largely viewed as an effective approach to a more positive and fulfilling care experience for older people and their families. [2-4]
The Act assumes that that the older person receiving care is the main person responsible for making decisions about their care, and that they have capacity to do so. [5] This can become contested when an older person’s decision-making capacity is unclear, or when power imbalances exist between the older person and their family members or care providers. [6-8]
How are family and carer influences barriers to rights-based care?
Barriers around family and carer influences can start from the point of entry to the aged care system. Although care is described as ‘consumer-directed’, making informed decisions about care depends on access to information, literacy, practical support and confidence. Many people rely on family or other supporters to help navigate care options, and people who lack family support could be at a disadvantage. [9]
Barriers to autonomy for the older person can also be experienced if paternalistic values or practices are in place between an older person and their family member or care giver. Paternalism means interfering with an individual’s right to act or make decisions on their own, under the guise of helping or protecting them. [10] Read more about power dynamics.
Differing perspectives
Family members may view care needs or desired outcomes differently from the older person, creating tension or conflict in care decisions. [6] This is often observed in end-of-life care stages where family members may disagree with the older person, care staff or other family members about end-of-life care decisions. [7] Read more about navigating end-of-life decisions and palliative care.
Some studies note family members’ objections to allowing an older person to make their own decisions about ‘risky’ behaviours, such as sexual expression in residential care settings, which can lead to restricting individual freedoms. [11, 12]
Tensions in allowing for an older person’s autonomy in decision-making can be even more complicated for older people experiencing cognitive or functional impairment. Read more about dementia, cognitive impairment and capacity. Read more about the difference between supported versus substitute decision-making and guardianship and oversight reform.
Power imbalances
Older people may be reliant on family members to manage or provide their care, including financial support. This can lead to a power imbalance that makes older people (and sometimes care providers) feel they should defer to their family member in order to make care decisions on their behalf. [13]
This power imbalance also makes some older people more vulnerable to abuse and neglect. [14] Read more about elder abuse and neglect.
How are family and carer influences enablers to rights-based care?
Family and carer influences can support rights-based care through practices that acknowledge and support ‘relational autonomy’. [15] Relational autonomy means that an individual’s care decisions and care experiences are interdependent with, and shaped by, individual factors, meaningful relationships and organisational practices.
Family and carer influences can enable rights-based care through collaborative care planning and building trusting relationships with care providers, to help navigate differing perspectives and power imbalances.
Collaborative care planning
Family supports help older people understand and navigate the complex consumer-directed care system, enabling autonomy and choice, when entering the aged care system. [9]
Collaborative care planning that centres the older person and involves family and others close to the person enables autonomy, dignity and participation, allowing a shared understanding of care goals. [2-4] Read more about person-centred care interventions for autonomy and choice.
Open communication between care staff and family members is important to achieving the best possible care outcomes. [16] Relevant information to managing care decisions, such as informed consent, should be explained to older people receiving care and their family members. [13] Read more about education and empowerment for older people, families and communities.
Building trusting relationships
Relational autonomy requires building trusting relationships between the older person receiving care, family members who support them and care staff. [2] Small gestures by care staff that acknowledge the older person and show them respect help to build trusting and dignified relationships. [17]
Building trust between older people and their care workers, made stronger though the repeated pairing of the same care workers and older people, gives them opportunities to build familiarity with one another. [2, 6]
Educating care staff to help manage conflicts in decision-making between older people and their family members is also an important step in ensuring everyone knows their rights and their level of influence in making care decisions. [13]
What can be done?
Provide guidance for navigating family involvement in care
Organisations:
- Provide clear guidelines for collaborative care planning and family involvement in decision-making
- Support open communication between families and care teams
The evidence:
- Family members or other supporters can help older people to understand their rights and navigate choices related to care. [9]
- Many ethical problems have been identified related to competence and capacity in decision-making for older people, sometimes resulting in the need for supported or substitute decision-making. [7]
- When choices are led by older people and families, rather than provider processes, care relationships can shift in meaningful ways. [3]
Build trusting relationships between older people, families and care teams
Organisations:
- Provide education and training for staff in negotiating conflicts in decision-making between older people and their family members.
Aged care leaders:
- Enable continuity of care and ongoing partnerships between care workers and care-recipients.
The evidence:
- Older people are often socially and economically dependent on their family members, leading to an imbalance of power. [13]
- In the case of sexuality of people living with dementia in residential care, opposition from family members tends to override the older persons’ right to privacy and autonomy. [12]
- Promoting autonomy requires the building of trusted relationships with older people, family members and care workers. [2]
Want to learn more?
This resource from the Department of Health, Disability and Ageing outlines the role of family and carer supports for older people in supported decision-making.
The Government of South Australia produced this resource that provides links to resources on supported decision-making in different contexts.
See these additional ARIIA resources related to family and carer influences for rights-based care:
- Education and empowerment for older people, families and communities
- Person-centred care interventions for autonomy and choice
- Guardianship and oversight reform