Families, Carers and Guardians

The term ‘family’ has different meanings for different people, and customs for parenting, marriage and kinship vary across cultures and societies.¹ It is a good idea to ask the person who the most important people in their life are, to understand what family means to them.

For many people, family includes their parents, siblings, spouse and children. For others, extended family members such as cousins and their spouses and children are just as important as immediate family. Family may also include people such as godparents, community leaders, Elders, close family friends and neighbours.

The concepts of extended family and ‘community as family’ in Aboriginal communities encompass the idea that children are not just the concern of the biological parents, but of the entire community.

NSW Department of Community Services Working with Aboriginal people and communities - a practice resource².

Families, carers and guardians play an important role in helping people manage their health and wellbeing. These relationships shape their values and priorities, and influence how they interact with the world. People who have supportive, resilient and health literate people in their lives are more enabled.

As such, increasing the confidence, skills, knowledge and abilities of families, carers and guardians can significantly influence a person’s enablement. These are considered relational components of enablement and have a direct impact on the person’s ability to manage their health.

For example, families and carers can work in partnership with healthcare workers to increase the person’s health knowledge, improve their self-confidence and coping ability, and help them manage any limitations or medication side-effects.

Working with families, carers and guardians becomes especially important when someone is unable to make healthcare decisions or give consent on their own, such as due to dementia, mental illness, cognitive impairments, or trauma.

Families, carers and guardians can influence, support and make decisions that impact a person’s ability to manage their health and wellbeing. Here are some examples of what this influence may look like.

• Bob’s doctor tells him he needs to change his diet to manage his weight and diabetes, but his wife who does all the shopping and cooking is offended when Bob tells her the doctor told him to eat better.
• Vinh is not well, but his wife is much sicker and caring for her is his number one priority.
• Meera often misses medical appointments or is late because her responsibilities to family and neighbours take priority.
• Elsie has a number of health problems, but she has always managed quite well with the support of her daughter. But now her daughter has gone away to university, and Elsie cannot cope on her own.
• Lucy is often pressured into making medical choices that align with her mother’s spiritual beliefs.
• Kirra promises her doctor she will do some exercise at least three times a week and plans to go for walks with her cousin in the evenings. But her cousin keeps cancelling, and Lily does not feel safe walking alone in her area.

By including families, carers and guardians in a person’s healthcare, you can increase their capacity to support the person, which will in turn increase their enablement. Here are some things to remember when working with families, carers and guardians.

• Find out what support the person has at home, and which people in their life influence how well they look after their health.
• Think about the role of these people, such as helping them take medication, attend appointments, quit smoking, eat healthy foods, or exercise.
• Help families, carers and guardians understand the positive and negative role they may have on the person’s health and wellbeing.
• Always ask permission to include their family, carer, guardian or anyone else in health planning and discussions.
• Recognise that families, carers and guardians have their own needs and priorities outside their caring role.
• Consider whether families, carers and guardians need psychological, practical or peer support to reduce stress and avoid burnout.
• Encourage families, carers and guardians to ask questions, and recognise and draw on their expertise and knowledge.
• Recognise that health literacy is important for everyone in the person’s life, and will help them increase the person’s enablement.

NSW Health also encourages staff to recognise that in some cultures, family members who visit patients in healthcare facilities may take a greater interest in and responsibility for the patient’s needs than usual.