Families contribute to unique study

13 August 2013

Families in five North Island east coast communities will share their experiences about the end-of-life care of an older family member for a unique community study.

Over the next three years, families and whānau will offer their experiences about the care received by older family members at the end of life.

The purpose of the project is to build up community-based models of palliative and end of life care. As New Zealand, in line with the rest of the OECD, is experiencing a rapidly aging population, the results will have national implications.

The study recently received just over $1.1 million in funding from the Health Research Council NZ, enabling it to start this month.

“This is the first study we know of where older people have been asked to identify their priorities for end of life care and give the contact details for a family/whānau member to be interviewed after their death to determine the extent to which these were actually met””, says Professor Merryn Gott, the study’s principal investigator.

Professor Gott, from The University of Auckland’s School of Nursing, says the researchers will travel around the east coast communities, talking to the family/whānau of now deceased older family members who gave consent for the interviews to take place after their death.

They will work closely with community partners in the communities of Tauranga, Rotorua, Whakatane, Opotiki and Te Kaha.

The study, known as Te Pākeketanga, will include interviews with up to 60 Māori and non-Māori families/whānau. It is a sub-study of the LiLACS NZ longitudinal study, which is examining many aspects of aging for both Maori and Non-Maori over the age of 85 years.

LILACS NZ stands for ‘Life and Living in Advanced Age Cohort Study in NZ’ or ‘Te Puawaitanga o Nga Tapuwae Kia Ora Tonu’.

The study team includes project lead Dr Tess Moeke-Maxwell (Ngai Tai ki Tamaki and Ngati Pukeko) and Stella Black (Tuhoe) who will conduct the in-depth interviews with up to 30 Māori whānau in rural and urban east coast communities.  Dr Lisa Williams will work with Dr Moeke-Maxwell, interviewing up to 30 non-Māori participants from these areas.

“We will be asking them about the services that were available to support them to care for the older person in these five areas,” says Professor Gott.  “We’ll focus on working collaboratively with the participant’s whānau/family, using input from the whole family wherever possible.”

“It’s exciting that our team gets to work with different community organisations and NGOs, both Māori and non-Māori,” she says.  “They are the experts in their communities and the families they provide support  to are the holders of  knowledge about their family members’ end of life journey and care preferences .”

“In the wider context, our population is rapidly aging. This study helps to show us what the priorities for care are in these communities,” says Professor Gott.

Dr Moeke-Maxwell adds: “there’s a myth about large Māori families being around to look after their older people, but that’s often not the case anymore,” she says. “It’s also evident that people move around a lot and we will look at what’s happening with older people and their families, and how whānau respond to their needs given there are other pressures intervening for the carer.”

As this is a study related to the LILAC NZ study, there is already a group of older people (since passed on) who gave their consent for the interview to take place after death.  The process allows up to three people to be nominated as people they want to be interviewed, and these people can then identify other family members who can be consulted for the study.

“This gives us a more nuanced perspective of all the things that were going on for that kaumatua or older person,” says Dr Moeke-Maxwell.  “It allows whānau and families to have a retrospective or reflexive view on behalf of that older person who died.”

“The carers become the story-holders for that older person and because of that, they will probably be able to share what they have observed about what happened, and they will probably have a good perception of that older person’s end of life preferences, and could possibly comment on their own preferences and experiences as well,” she says.

The study is also unusual in giving the family a summary report of their interviews.   Whānau or families have the opportunity to add to, or change their information.

“It will be a reflection or celebration of that older person life and their journey through birth to advanced age and death,” Dr Moeke-Maxwell says. “It’s quite unique – giving something back to the participants like this; they will keep their taonga (treasured story); we hope it becomes a living memory and a reflection of the older person, their family and the journey they have shared.”

 

For more information contact:

Suzi Phillips Faculty of Medical and Health Sciences,Communications The University of Auckland. Email s.phillips@auckland.ac.nz

son-story
Researchers for the Te Pakeketanga End of Life carers study, are from left; Stella Black, Dr Tess Moeke-Maxwell, Dr Lisa Williams and Professor Merryn Gott from the School of Nursing