Table 7 Overview of needs identified in the studies

Aspin et al. (2012) [2]

An established and visible Aboriginal and Torres Strait Islander healthcare professional workforce. Acknowledgment of the important roles that family members and peers have in assisting the management of chronic illness. Patients also want to be actively involved in the problem-solving processes when it comes to their chronic illness. Long term relationships with care providers.

Bell et al. (2015) [26]

1. Cultural perspectives on aged care: relationships, family participation, aging at home, staying on country, wellness/cultural identity.

2. Context of Service Delivery: staffing housing, living conditions and hardship and carer burden.

3. Equity and access to services: barriers to service entry, poor communication and accommodation of cultural expectations.

4. Program (mis)alignments. Assessment at high level of care needs often doesn’t match the basic service provided.

The unpaid care-work associated with caring for a family member often occurs outside of work hours fusing together work roles and family responsibilities.

Building capacity in communities is needed to provide sustainable levels of care and service delivery that will adequately address the needs of older Aboriginal people. There is also a need to restrict and reduce the amount of hardships experienced be carers and older people that would allow them to continue living ‘on country’.

Browne et al. (2014) [27]

Importance of cultural values in service design and delivery (diet, prayer and spiritualty, staff trained in cultural competence), caregiving as cultural preservation for family and community, specific health worries, increased frailty).

Importance of cultural values in service design and delivery (diet, prayer and spiritualty, staff trained in cultural competence), caregiving as cultural preservation for family and community, family support programs (caregiver education, respite services, transportation).

Caregiving is viewed as both a shared responsibility of the family unit and government system.

Davis (2010) [3]

Kupuna want nurses to respect their cultural heritage, honour their past and understand their worldview and values. It is also reported that Kupuna want nurses to be interested in their family, include Hawaiian foods and healing practices as a part of their care-plan, allow for their voices to be heard (listening and asking questions) and provide care that is friendly and personal (not overtly direct). They want information that is straightforward and given with patience. They also want care to be provided in environments that feel comfortable and safe. Overall, Kupuna want a health care system that not only reflects their culture and values but offers programs and services that are specific to the needs of the ‘ohana

Habjan et al. (2012) [9]

With the family members being unavailable to provide care, there is an increasing dependence on paid community caregivers. However, limited health human resources create a heavy reliance on a very few people. Contrast to traditional Elder-youth relationships, Elders now feel that young people do not offer the help needed or respect. Elders also need greater access to health services within community. It is also reported that cultural sensitivity training is needed for health care professionals and support personnel. Specifically, improvement in cultural and spiritual awareness, understanding and respect that align with First Nations traditional teachings and language.

There is a need for psychological support training in the areas of grief support, counselling and crisis management. In addition, caregivers also want to learn how to identify depression symptoms and implement proper self-care (relaxation therapy and stress management).

Participants outlined that home support training is needed for both health care providers and family, including personal support workers and homemaking training. Participants also identified that they want to stay in community to access health care, therefore enhanced training is required to meet this demand.

Due to the lack of employment opportunities and the associated economic constraints, many young people look for work outside the community. This path takes family members away from the elders that need them to provide care. There is an immense need for a return to the traditional ways of intergenerational family caregiving. It was also reported that personal support workers are needed as well as, increased opportunities to receive financial aid for travel, food and medical expenses.

Lowell et al. (2012) [28]

Yolngu require access to meaningful information that would facilitate informed decision making related to the prevention and management of chronic disease. There is also a need for medical and physiological terminology to not be assumed as common knowledge by HPs when explaining to clients about their chronic diseases, their causes, consequences and management. Some Yolngu also voiced the concern that it appears that important information about their condition was being withheld from them and their families.

Schure et al. (2015) [6]

There is the potential for the results to exhibit bias due to American Indians being more reluctant to report needing assistance than other racialized groups.

Ward et al. (2011) [8]

The importance of community, family and ‘yarning’ is expressed as a significant source of support and knowledge. Exchanging stories about the realities of living with a chronic illness is described as having a ‘yarn’ and assists in relaxing persons living with chronic illness.

It is also outlined that family should be cautious of providing unsolicited practical support. The priority being to ensure that those managing a chronic illness maintain independence, while simultaneously normalising support through reciprocal care spanning the life-cycle.

In hopes of increasing good health outcomes, informal carers need support that would offload the exhausting and demanding nature of caring for family and community members.

Waugh et al. (2011) [1]

There is an expression of anger and frustration by participants because of the contemporary attitudes (uncaring) toward older people. Aboriginal Medical Services (AMS) are important because they make health care accessible and provide opportunities for Aboriginal people to socialize and connect to both each other and their culture. Groups are also identified as essential for developing friendships, making space for participants to share about their struggles and reduce social isolation. It is also identified that asking for help needs to be an empowering experience rather than something that leads to the development of a negative self-identity.