None listed
Conditions
Brief summary
This project seeks to address critical gaps in knowledge about supportive cancer care for patients and whanau using a kaupapa Maori model of care. The research involves three distinct phases (Aims 1-3), of a cancer support whanau programme within the three Maori health provider (MHP) organisations who are the co-investigators (CIs) on this study. Aim 1 - To develop a Maori cancer support whanau programme including a framework of sustainability as a core component. The cancer support whanau programme will be tailored to the working context of each Maori provider setting and the types/range of cancer services available to them. We will use Gruen et al’s (2008) integrated approach for health programme planning as a guiding framework for development of the programme incorporating the key features of sustainability, for exploring the data generated from the study (interviews with key informants, whanau participants and document review) and then its contribution to the evaluation and subsequent refinement of the programme. Aim 2 - To implement a Maori cancer support whanau programme. A Maori cancer support whanau programme means incorporating tikanga, karakia, manaakitanga, pono, tika and aroha. These principles will be central to the way in which the training is carried out and will underpin the development and delivery of the programme itself. The whanau support programmes will run continuously over a one year period and participants will be invited onto the programme as they are identified by each MHP organisation. Aim 3 - To evaluate the effectiveness of a Maori cancer support whanau programme. After 1 year, a sample of whanau (10 from each case) from each of the programme sites will be interviewed to explore the challenges and benefits following implementation of the programme. Whanau will be asked how they came to attend the programme and how participation has affected their lives, as well as their families. Documents pertaining to the programme will also be examined. Host organisation factors will also be examined including the size of the MHP and distance to nearest cancer treatment centre, government responsiveness, policy and identified priorities for cancer care and cancer services. We will also review the programme in relation to aspects of ‘sustainability’, providing a platform for how to increase the likelihood of sustained effective programmes. Additionally, we will explore how knowledge of sustainability and its influences could contribute to research agendas more broadly in terms of the translation and dissemination of effective practices at a national level alongside informing policy more broadly in the cancer control area. The evidence gathered from all of the study phases, development, implementation and evaluation, will contribute to refinement of the initial framework and development of a ‘final’ version of the whanau support programme.
Interventions
(1) To develop a Maori cancer support whanau programme including a framework of sustainability as a core component. This includes designing the materials and activities, and additionally interviewing key informants to inform the programme sustainability component. Key informants will be experts who have extensive experience in the area of research, policy, management level, and/or cancer service provision across the primary, secondary and palliative care cancer interface. The interviews will f
(1) To develop a Maori cancer support whanau programme including a framework of sustainability as a core component. This includes designing the materials and activities, and additionally interviewing key informants to inform the programme sustainability component. Key informants will be experts who have extensive experience in the area of research, policy, management level, and/or cancer service provision across the primary, secondary and palliative care cancer interface. The interviews will focus on positive features of cancer support programmes and the types of organisational processes (including community, workforce and policy environments) that are consistent with a sustainable Maori cancer support whanau programme. (2) To implement a Maori cancer support whanau programme. The programme sessions are delivered in groups. The six key areas to be covered in the programme include: knowledge of cancer; treatment; oncology services; support options; confidence building; coping and planning for the future. The facilitators will be from the communities of each of the cases. The programmes will run continuously over a one year period and participants will be invited onto the programme as they are identified by each MHP organisation. Groups will be run once/fortnight (once/month over winter). TThe duration of each session is not yet known and will vary depending on the needs and preferences of the group, however it is likely that each session will involve an hour of information sharing and another hour of whakawhanaungatanga (connection) and hakare (eating together). The locations of the support groups are yet to be finalised, but are likely to be at local marae or other community meeting places where whanau will feel comfortable. (3) To evaluate the effectiveness of a Maori cancer support whanau programme. This phase involves interviews with whanau who have taken part in the programme. Informed consent will be obtained before interviews take place. Interviews will be held at locations where whanau are comfortable such as their homes or marae. They will be undertaken face to face with a trained researcher from the study team. Programme documents will also be examined including panui, information kits and any other material generated from the programme,
Sponsors
Massey University
Study design
Allocation
Non-randomised trial
Intervention model
Single group
Primary purpose
Educational / counselling / training
Eligibility
Sex/Gender
All
Age
16 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Key inclusion criteria are key informants working in community cancer care and health policy, and programme participants are whanau who are experiencing the cancer journey.
Exclusion criteria
Whanau who have no experience of cancer and have not attended the programme will not be eligible to participate.
Outcome results
None listed