None listed
Conditions
Brief summary
Long term neurological conditions result in great personal, whanau/family and societal burdens associated with long term neurological conditions; which evidence tells us, can be achieved by improving two-way communication, by equipping people living with a neurological condition (PLWNC) and their whanau/families with skills that allow them to do as much as possible for themselves, and by better coordinating the provision of care over a lifespan. This study aims to develop and implement a workable solution, the “living well toolkit", to meet these three health needs. This application relates to phase II of the study, where we intend to further develop and refine the toolkit based on the findings from Phase I, and existing knowledge gained from former research. In this phase, we will also pilot the toolkit with six to nine consenting participants, recruited from the primary recruitment localities or Non-Governmental Organisations (NGO's) identified in Phase I. We will purposefully select participants who are transitioning from in-patient hospital care to Primary Health Care or in-patient rehabilitation, or from rehabilitation to community services. Where discharge timeframes are predictable we will introduce the toolkit approximately two weeks before planned discharge. Information concerning the utility of the toolkit will be obtained through semi-structured interviews with the individual participants and their whanau/family, one week after they start using the toolkit and at 3 months follow-up. Data on the usability of the toolkit will also be obtained by asking participants to nominate 1 or 2 current health professionals/carers willing to participate in a 15 -20 minute phone interview at three months follow-up. Health providers who were involved with the introduction of the toolkit at discharge/transition, will also be invited to share their experience in a one-off locality based focus group.
Interventions
This trial is a pilot study where 6 to 9 consenting participants will be introduced to a toolkit, 2 weeks prior to their discharge home or transition into another service. The introduction will be through one of the participating health professionals involved in that person's care who will have attended an information and education session on the purpose of the toolkit and how to use the toolkit. It is then anticipated that the health professional will introduce this to one of their clients who
This trial is a pilot study where 6 to 9 consenting participants will be introduced to a toolkit, 2 weeks prior to their discharge home or transition into another service. The introduction will be through one of the participating health professionals involved in that person's care who will have attended an information and education session on the purpose of the toolkit and how to use the toolkit. It is then anticipated that the health professional will introduce this to one of their clients who fits the inclusion criteria. This toolkit can be in paper form or an electronic data file that will allow the participant (person living with a neurological condition) to record important information and exchange this with other service providers, that will give them the skills and resources to take charge of their condition and to live well with this condition, and that will assist with the continuum of care over a lifespan. The participant (person living with a neurological condition) will be able to choose which toolkit suits them best, either electronic or paper based. The content of the toolkit, electronic or paper, will be identical; only the media of delivery and format will be different. The toolkit is currently under construction. The Participants (people living with neurological conditions) and consenting family members/carers or support staff, and health professional involved in the introduction of the toolkit will be asked to provide feedback on the usability and value of the toolkit approximately 1 week after implementation and at 3 months follow up. This will happen by means of a semi-structured focus group (for health professionals), face to face interviews (for people living with a neurological condition and their family) or a short phone interview (carers or support staff). An implementation coordinator will monitor the adherence to the intervention.
Sponsors
AUT University
Study design
Allocation
Non-randomised trial
Intervention model
Single group
Primary purpose
Educational / counselling / training
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
We have 3 participant groups: 1) people living with a long-term neurological condition - at the point where they are close to discharge or transitioning into another service - older than 18 years ( adults able to consent) 2)nominated family/ carers/ support staff, older than 18 years and able to consent, and being a significant other or support person involved in the care of the person living with a neurological condition 3) health care providers such as nurses, physio's, OT's, SLT', social workers, key workers etc. involved in the care of people living with a neurological condition.
Exclusion criteria
not able to give consent not 18 years of age not having a long-term neurological condition (patient participants) not having the cognitive capacity to express their thoughts on the experience of using the toolkit (patient participants)
Outcome results
None listed