3.1. Design
The data in this study were collected by means of two questionnaires submitted to an online probability-based panel (3.2). The first questionnaire (T1), which measured QoL, burden of care and caregiving tasks, was sent to the panel on 1 November 2019. The second questionnaire (T2) measured QoL and was sent to the panel on 22 April 2020, five weeks after the introduction of social distancing measures in the Netherlands. The ‘intelligent lockdown’ in the Netherlands involved the closure of cultural and sports organizations, as well as schools and restaurants, although shops stayed open. Individuals were allowed to receive visitors in their homes and to go outside for exercise or walks [2].
3.2. Participants
Both questionnaires were sent to Panel Fryslân, an online probability-based panel hosted by the Frisian Institute of Social Research [21]. The reference population of Panel Fryslân consists of all inhabitants of the province aged 18 years or older. The sample frame for Panel Fryslân is the Personal Records Database (Basisregistratie Persoonsgegevens, BRP) of all Frisian municipalities, from which a simple random sample was drawn. The sampled individuals were recruited in (i) October/November 2016 and (ii) February/March 2019. Panel Fryslân currently includes approximately 6,000 inhabitants of Fryslân.
The first questionnaire (T1) was completed by 2,845 respondents (48% of the panel) and the second questionnaire (T2) was completed by 3,181 respondents (55% of the panel). In all, 2,397 respondents completed both questionnaires. During T1, the respondents were asked whether they had any relatives with MCN. A relative was defined as ‘someone who is close to you and with whom you have a personal connection (for example a partner, a parent/parent-in-law, a child, a sibling, a good friend or a neighbour with whom you have close contact’). People with MCN were defined as ‘people who are in need of support from professionals and/or their own networks and who are unable to function independently in daily life without such support’. The characteristics of the respondents are displayed in Table 1.
Most of the respondents were between the ages of 46 and 66 years (40%) and had completed higher education or training (51.6%), with 40.9% holding jobs or being self-employed and 47.6% being retired. The majority of the respondents were living with partners (81.4%), and 10% had children living at home. A small share of the respondents (3.7%) personally had MCN. Almost 30% of the respondents had at least one relative with MCN (29.1%). There were two significant differences between individuals who did and did not have relatives with MCN: in age and employment status. People who had relatives with MCN were less likely to be retired and more likely to be between 46 and 66 years of age.
3.3. Procedure
Before the first questionnaire was sent to the members of the panel, it was presented to and tested by two people who had experienced living with a relative with MCN. During a meeting, they had the opportunity to provide feedback on the questionnaire and, in consultation with the researcher, to adjust questions (or their formulation). The questionnaire was subsequently tested by eight people, including the three authors. After the testing phase, the panel members received an invitation link to the questionnaire, as well as up to two reminders. Panel members had three weeks to complete the questionnaire. At the end of both questionnaires, respondents had the opportunity to evaluate and comment on the questionnaire. The panel management team kept a close eye on these comments, responding to them as needed. The Ethics Committee of pedagogical and educational sciences of the University of Groningen evaluated and approved the study protocol and informed consent procedure (Ped 1920-S-002).
3.4. Data and Instruments
3.4.1. Quality of Life
The WHOQOL-BREF [4] was developed as part of the WHOQOL project, which was initiated in 1991. This questionnaire is a cross-culturally comparable QoL assessment instrument. The WHOQOL-BREF instrument comprises 26 items in four domains: physical health, psychological health, social relationships and environment. The WHOQOL-BREF is a shorter version of the original instrument that may be more convenient for use in large research studies or clinical practice.
In this study, we used 18 items of the WHOQOL-BREF. At T2, eight questions were omitted in order to enable respondents to complete the questionnaires without spending too much time on them. These questions concerned subjects that we did not expect to have changed during the relatively short period of the lockdown (e.g. ‘How happy are you with your bodily appearance?’ and ‘To what extent do you feel that physical pain prevents you from doing what you need to do?’). The four domains of the WHOQOL were nevertheless preserved. The questions are presented in Table 2.
As a measure of the internal consistency, Cronbach’s alpha scores ranged from .31 to .81. The lowest value (.31) was found for the social relationships scale, which was therefore excluded from further analysis. The alpha scores for the remaining three scales ranged from .73 to .81, which can be considered acceptable to good. The correlation coefficients (Pearson) between the three scales ranged from .55 to .68 (all significant at p < .01). The Cronbach’s alpha score for all 18 QoL items was .87.
3.4.2. Burden of care
An existing Dutch questionnaire [18,22] was used to determine the burden of care for relatives. This questionnaire consists of 15 items (see Table 3).
The number of items with positive responses (i.e. ‘yes’ or ‘agree/strongly agree’) provide an indication of the burden of care [18]. In addition to the perceived burden of care, respondents were asked to indicate the caregiving tasks that they perform. Analysis
The respondents were divided into two groups, based on whether they did or did not have relatives with MCN. The impact of the COVID-19 pandemic on the QoL of the two groups was assessed for total QoL, as well as for the three scales and the 18 items, using paired t-tests. An additional MANCOVA was conducted for the second research question (regarding the characteristics of the relatives with MCN), this time including only the respondents who had relatives with MCN. In the analyses, the dependent variable was the difference in scores for the three domains of QoL (physical health, mental health, environment). The independent variable was the living situation of the respondent and the person with MCN (both parties living together, each party living in a separate home or the person with MCN living in a care facility). The burden of care, caregiving tasks and age of the relative were added as control variables. When a significant relationship was found, a post-hoc Bonferroni analysis was performed to provide more insight into the precise relationship between living arrangements and the scores on the specific domain.