**3.4. Ethical considerations**

Impact Research NZ has a code of ethics that is in line with the Association of Social Science Researcher (ASSR) standards and requires that work is carried out with professionalism, integrity, good judgement, and in a way that contributes positively.

The researchers were experienced in conducting sensitive enquiry with vulnerable people. The researchers acknowledged that some people living with dementia and their families/ caregivers have experienced distress and care was taken to not inadvertently cause harm or distress in any way to those taking part.

Due to the variable capabilities of some people living with dementia, clients were informed that the telephone interview and questionnaire could be completed by the client living with dementia, the client's primary caregiver/family, or a combination of both. All interviews were recorded and transcribed.

Participants were informed both verbally and in writing about the purpose of the research, the names of the researchers/agency conducting the research, and contact details of responsible persons for questions and/or complaints. An explanation of what involvement entailed, their right not to participate and to withdraw their consent, their access to the information they gave, and to receive a summary of the research results, was provided. Informed consent was gained from all participants prior to data collection and their right to cease the interview at any time was reiterated at the commencement. All interviews were recorded and transcribed.

Care has been taken to preserve the anonymity of participants by removing any identifiable information and ensuring that information is not linked to any individual participants or organisations. Researchers have adhered to the 'duty of confidentiality', which means that no identifying information from participants has been shared with other parties. Any third parties who may be given access to research data (the transcriber) was asked to sign a confidentiality agreement.

All hard copy data was kept in locked storage at Impact Research NZ premises and was only be accessible to Impact Research NZ researchers. All electronic data, including any digital recordings of interviews, were password protected and only accessible to Impact Research NZ researchers. All data is kept for at least 3 years following the completion of the project and then destroyed.

#### **3.5. Analysis**

The range of data collection methods used allowed for triangulation of the common themes across the data set. A thematic pattern analysis was performed on the qualitative data from telephone and face-to-face interviews, focus group interviews, and responses to open-ended questionnaire questions. This process involved reading the transcripts and comments to establish keywords and emerging themes, and repeat readings to check and refine established themes. Themes are then organised into broad categories and selected quotes from respondents' accounts are used to illustrate the themes. Care is taken to de-identify individual quotes to protect participant anonymity. Analysis of the data using constant comparison between cases provides a distillation of

participants' experiential knowledge. Augmenting the interpretation of these findings is a critical commentary drawn from the research literature relating to the features of effective home support

MoH – Needs Assessment and Service Coordination Agency.

services for people living with dementia and their families/caregivers.

**Table 1.** Summary of participants numbers, selection criteria and data collection methods.

**Participants Number of** 

Enliven clients diagnosed with dementia and their family/ caregivers

Enliven home support staff

Enliven managers

Key stakeholders **participants identified**

**Number of participants**

30 22 • Clients with early onset

15 10 Enliven Area Managers were

7 7 General Manager Enliven

11 11 Community services – Age

dementia through to moderate dementia. Clients new to the Enliven service and clients who had been receiving Enliven services

asked to nominate 15 Enliven staff – team leaders and home support staff – to participate in focus group interviews

Enliven Area Managers

Concern, Senior Line, Alzheimers Auckland. DHB services – Gerontology services (×2), Assessment services, Mental Health Services for Older People, Dementia Services Project, Access Network, Community

Geriatric Services.

for some time. • Clients situated in city, town and rural settings. • Clients from various ethnicities such as Māori, Pacific, European and Asian.

**Participant selection criteria Data collection methods**

Effective Restorative Home Support for Older People Living with Dementia and Their Caregivers:…

**All interviews were semi-structured**

Paper-based questionnaire covered: demographics age, ethnicity, sex, geographic location, length of time since dementia diagnosis, length of time with home-support. Additionally, 10 closed questions using a five point Likert scale covered: the care plan, aspects of service delivery, and suggestions for improvements.

Staff focus groups held in two city locations: Auckland and Hamilton. The interviews covered their views on the provision of restorative care, what works well, challenges, training, data collection and reporting, how the

Face-to-face interview 40–60 minutes covered the strategic direction of

Telephone interviews of 40–60 minutes duration covering implementation, strategic overview, the factors that make up effective restorative, issues of culturally appropriate care, staff recruitment and retention, training, funding issues, quality measures for home support, and potential future

Telephone interviews or face-to-face

Stakeholder interviews explored a range of home support issues including how best to meet the current needs of people living with dementia and their families through home support, best practice in provision of home support, the need for essential/specialist staff training; and the projected future needs of this client group. All interviews were

recorded and transcribed

service could be improved.

restorative care

service developments

interviews

Telephone interviews elicited information on how well the service is being received and what could be

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155

improved.

being appropriate and would provide the researchers with sufficient data to answer the over-

Impact Research NZ has a code of ethics that is in line with the Association of Social Science Researcher (ASSR) standards and requires that work is carried out with professionalism,

The researchers were experienced in conducting sensitive enquiry with vulnerable people. The researchers acknowledged that some people living with dementia and their families/ caregivers have experienced distress and care was taken to not inadvertently cause harm or

Due to the variable capabilities of some people living with dementia, clients were informed that the telephone interview and questionnaire could be completed by the client living with dementia, the client's primary caregiver/family, or a combination of both. All interviews were

Participants were informed both verbally and in writing about the purpose of the research, the names of the researchers/agency conducting the research, and contact details of responsible persons for questions and/or complaints. An explanation of what involvement entailed, their right not to participate and to withdraw their consent, their access to the information they gave, and to receive a summary of the research results, was provided. Informed consent was gained from all participants prior to data collection and their right to cease the interview at any time was reiterated at the commencement. All interviews were recorded and transcribed. Care has been taken to preserve the anonymity of participants by removing any identifiable information and ensuring that information is not linked to any individual participants or organisations. Researchers have adhered to the 'duty of confidentiality', which means that no identifying information from participants has been shared with other parties. Any third parties who may be given access to research data (the transcriber) was asked to sign a confi-

All hard copy data was kept in locked storage at Impact Research NZ premises and was only be accessible to Impact Research NZ researchers. All electronic data, including any digital recordings of interviews, were password protected and only accessible to Impact Research NZ researchers. All data is kept for at least 3 years following the completion of the project and then destroyed.

The range of data collection methods used allowed for triangulation of the common themes across the data set. A thematic pattern analysis was performed on the qualitative data from telephone and face-to-face interviews, focus group interviews, and responses to open-ended questionnaire questions. This process involved reading the transcripts and comments to establish keywords and emerging themes, and repeat readings to check and refine established themes. Themes are then organised into broad categories and selected quotes from respondents' accounts are used to illustrate the themes. Care is taken to de-identify individual quotes to protect participant anonymity. Analysis of the data using constant comparison between cases provides a distillation of

integrity, good judgement, and in a way that contributes positively.

arching research question.

154 Cognitive Disorders

**3.4. Ethical considerations**

recorded and transcribed.

dentiality agreement.

**3.5. Analysis**

distress in any way to those taking part.


**Table 1.** Summary of participants numbers, selection criteria and data collection methods.

participants' experiential knowledge. Augmenting the interpretation of these findings is a critical commentary drawn from the research literature relating to the features of effective home support services for people living with dementia and their families/caregivers.

Quantitative data gathered from the client questionnaires was entered into an Excel database for statistical analysis and used to generate descriptive tables and figures. Quality checks were undertaken to ensure the data was complete, free of distortions and ready for analysis. Data was then entered into our Excel database to generate descriptive statistics (**Table 1**).

important to them: their relationship with home support staff, the capability and professionalism of home support staff, the liaison/communication across home support staff (and Enliven), and the service care-plan developed with the service coordinator. Clients and caregivers wish to be treated with dignity, and to ensure that the client is viewed as a total person, e.g. someone who has had a full life, with rich experiences and capabilities. Clients and caregivers discussed the importance of home support staff liaising with one another (often through the client's log book), to ensure that all staff were kept updated of any developments in the client's life.

Effective Restorative Home Support for Older People Living with Dementia and Their Caregivers:…

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A number of clients, caregivers and key stakeholders also remarked on the importance of the client's service-plan having some flexibility built into it, so that support workers have opportunities to undertake alternative (appropriate) tasks for the client as required; a number also recommended that a small proportion of the client's home support time be specifically allocated for the client's/caregiver(s) discretion, to be used as they think most appropriate.

*Effective home support services for people living with dementia recognise that the primary caregiver(s) of a person living with dementia (often) require regular periods of respite if they are to sustain their role, and require consistent communication from support workers and other Enliven staff regarding their* 

Caregivers remarked that they strongly valued opportunities to have a period of time out from their loved one; as this provided them with an opportunity to undertake other necessary tasks, maintain relationships with family and friends, and to have some personal time. Similarly, key stakeholders and staff commented on the importance of the primary caregiver's role, commenting that many home support clients living with dementia were only able to remain living at home due to the commitment of their caregiver (along with the provision of various support services). An integrated dementia care service supporting people living with dementia to remain in their own homes needs to provide appropriate levels of support for clients and caregivers alike. Caregivers also reported on the importance of being regularly updated by home support staff (and other Enliven staff as appropriate) about their loved-one's day/experience and any other issues that may arise during the provision of home support services. For example, caregivers expressed a strong desire to be informed on how their loved one responded during the support worker's visit and for support staff to also communicate this information with each other (for the client's benefit).

*Effective home support services for people living with dementia recognise the cultural need of clients* 

The PSN Enliven geographical region covers a wide mix of culturally diverse populations. As a consequence, each of the regional managers has worked very hard to develop service and staff capacity to meet the particular cultural needs of their area. Service coordinators endeavour, when possible, to match support workers with clients of the same ethnicity. A client reported on the value of this approach when English was a second language. Key stakeholders also discussed the importance of developing culturally sensitive services that respect the

Factor 2: Caregiver needs.

*loved-one's experience/condition.*

Factor 3: Cultural issues.

*and their caregivers/families.*

ethnic needs of clients and their caregivers/families.
