Family Caregivers

The present cross-sectional study was conducted in accordance with the Revised Standards for Quality Improvement Reporting Excellence (SQUIRE 2.0 - checklist) for the description of the results. The sample consisted of 341 persons who met the following inclusion criteria, aged 60 years or older; performed the role of caregiver of their elderly dependent family member living in the same household, and enrolled in one of the primary healthcare centers in the city of São Carlos, state of São Paulo, Brazil, located 235 km from the state capital. The exclusion criterion of the research was refusal by the participant to sign the Free and Informed Consent Form.
The degree of dependence of the elderly dependent on care was verified using the evaluation of the level of dependence for basic and instrumental activities of daily living analyzed by the Katz Index and Lawton and Brody’s Scale.
The data were collected by an oral interview, where carers with cognitive deficits were excluded with self-report. Therefore, interviewees who could understand and complete the data collection instruments were selected for the study.
The interview was conducted at the homes of the participants between April and November 2014 by students and health professionals who had undergone training for the administration of the following data collection instruments:
For the identification of an assessment tool that could serve as the standard reference, the following were also administered to the participants:
This study was conducted in accordance with all ethical precepts that govern research involving human subjects and received approval from the Human Research Ethics Committee of the Universidade Federal de São Carlos (certificate numbers: 416.467/2013 and 711.592/2014). All participants signed a statement of informed consent prior to the onset of the data collection process, and the care recipients that were completely dependent (13.5%) were consented by the legal guardian, who was predominantly represented by the caregiver.
The data were entered in a double-blinded dataset in MS Excel 2010. The SPSS program version 21.0 (IBM, Chicago, Illinois, USA) was used for the data analysis. The data presented adherence to normality, as verified by the Kolmogorov-Smirnov test, and therefore parametric statistical tests were run. Descriptive statistics were performed to describe the sample (Table 1). Internal consistency of the ZBI-12 was measured using Cronbach’s alpha, considering α > 0.8 to be indicative of very good to excellent internal consistency. Correlation coefficients were calculated for the item-item and item-score evaluations to determine the strength of the internal correlation of each item. Pearson’s correlation coefficients were calculated to analyze the strength of correlations between the ZBI-12 items and total GDS, PSS and L&B scale scores for the determination of the standard reference (Table 2). To suggest a cut-off point for the ZBI-12, the PSS scores were divided into quartiles and four groups created. For each group, the mean and standard-deviation of ZBI-12 were reported. The mean value on the ZBI-12 for the highest group was the suggested cut-off point (Table 3). One-way ANOVA with Tukey’s post hoc test was used for the comparison of mean ZBI-12 scores according to the PSS quartiles. A p-value ≤ 0.05 was considered indicative of statistical significance.

This project, and the original larger study from which data for men was drawn,
was approved by Flinders University Human Research Ethics Committee (No.
5129).
The study involved a secondary analysis of data collected by a national survey
(Kaine & Lawn,
2021) conducted by Lived Experience Australia (LEA), which is an
Australian national mental health consumer and carer advocacy organization
(https://www.livedexperienceaustralia.com.au/). The objective of
the survey was to gain a better understanding of Australian mental health
consumers’ and family carers’ experiences of engagement and disengagement with
mental health care services.
The anonymous survey was sent out electronically via SurveyMonkey to LEA’s email
list of more than 2,000 “friends,” with the survey link also distributed
voluntarily by other collaborative mental health consumer and carer advocacy
peaks and organizations at state and national level. The survey was open for 3
weeks and 535 individuals commenced the survey (404 identified as consumers and
131 identified as family carers). Participants could elect not to answer
questions and their consent to participant was provided electronically via the
online site through their commencement of the survey. While 404 consumers
commenced the survey, with a mean average completion rate of 99% for the eight
upfront demographic questions, fewer (n = 285) commenced
questions in the main section of the survey and went on to answer the 23
questions in that section, with a mean average completion rate of 84.3% (range =
63.2–100%). Within this larger sample, there were a total of 73 male consumers
who participated in the survey.
The survey contained 42 questions applicable for consumers, consisting of both
quantitative and qualitative questions (see Box 1). In all questions in the main
section of the survey, participants could provide detailed qualitative comments
to expand on their responses. Responses to Questions 35 to 42 were excluded from
this analysis as the nature of the questions was more focused on accessibility
to private mental health services. This article focuses on report of men’s
qualitative responses.

Participants were eligible to take part if they had a documented diagnosis of dementia of any severity, and an additional diagnosed long-term condition. This was defined as a health condition requiring ongoing support from primary care or significant elements of self-management. We used prevalence studies to identify common long-term conditions in people with dementia (Browne et al., 2017 (link); Public Health England, 2019 ). List of eligible conditions included, diabetes, asthma, Chronic Obstructive Pulmonary Disease (COPD), arthritis, stroke, and heart failure/disease. We included participants with dementia living in the community, including those who lacked capacity to consent to research. Abiding by the Mental Health Capacity Act of England and Wales (2005), the lead author assessed capacity of people with dementia. If the person with dementia lacked capacity to decide whether to take part, family carers were invited to act as personal consultee. People with dementia who had capacity were not required to have a family carer who provided regular support to participate in the study.
We included family carers providing regular support (at least weekly contact) for the person with dementia to manage their health-related activities. This included medication and appointment management and broader aspects of health such as exercise and nutrition. Health and social care professionals were deemed eligible if they were identified by participants with dementia and/or their family carers as supporting management of or providing care for long-term conditions. We used purposively sampling to ensure a diverse range of experience including type of long-term condition, stage of dementia, age, gender, ethnicity of the person living with dementia and extent of involvement of family members and health or social care professionals. We recruited participants via social media, previous dementia research studies, Join Dementia Research and six general practices supported by the National Institute for Health and Care Research, Clinical Research Network (North Thames) using letters of invitation or by direct approach by healthcare professionals. Health and social care professionals identified by people with dementia (and family carers) taking part in the study were invited to participate via email. Written informed consent was obtained from all participants.