1 INTRODUCTION

Multiple chronic conditions (MCCs), which are defined as the co-occurrence of two or more chronic conditions within the same person (Smith et al., 2012), have increased dramatically over the past few decades, especially in people aged 65 years and older (Tinetti et al., 2019). In the US, about 27% of adults have MCCs (Boersma et al., 2020), and in Europe, about 37% of older people have at least two chronic conditions (Palladino et al., 2016). Compared with people affected by one chronic disease, people with MCCs experience greater mobility problems, lower performance of the usual activities of daily living, and increased pain, discomfort, and cognitive problems (Hopman et al., 2016). MCCs are associated with greater healthcare utilisation, worse self-reported health status and poorer health outcomes (Marengoni et al., 2011; Palladino et al., 2016).

To counteract the effects of their diseases, people with MCCs need to perform daily self-care behaviours (Alizadeh et al., 2014; Gallagher et al., 2011; Mohebi et al., 2018). In the context of chronic illness, self-care is aimed at maintaining stable health and managing illnesses (Riegel et al., 2012). Self-care has been shown to improve patient health outcomes, reduce symptoms, decrease hospital admissions and improve survival and health-related quality of life (Dickson et al., 2011; Lee et al., 2018; Ruppar et al., 2019; Sedlar et al., 2017). Although self-care is essential for patients with MCCs, it is difficult to perform because disease symptoms may overlap, medical regimes are complex, and patient's confidence in their ability to perform self-care is low because of comorbidities (Vellone et al., 2015). For this reason, chronically ill patients often need the help of an informal caregiver (hereinafter referred to as caregiver), generally a family member or close friend, to manage chronic diseases, especially when patients are older and the diseases are more severe (Martindale-Adams et al., 2016; Secinti et al., 2019). The help provided by caregivers to patients to manage their chronic conditions is called caregiver contribution (CC) to patients' self-care, and it consists of recommending care recipients to perform—or substituting for patients in performing—behaviours aimed at maintaining the chronic illnesses' stability and managing the illnesses' signs and symptoms (Pucciarelli et al., 2019).

1.1 Background

The recent COVID-19 pandemic, especially during 2020, has affected and caused the deaths of older people suffering from chronic illnesses (Fan et al., 2020; Liu et al., 2020), such as cardiovascular diseases, diabetes, chronic respiratory diseases, and cancer (World Health Organization, 2020a). Worldwide, to reduce the contagion risk of COVID-19 and prevent its spread, mandating restrictive measures, social distancing and quarantine have been recommended by health organisations (Centers for Disease Control & Prevention, 2020; World Health Organization, 2020b) when waiting for mass vaccinations. Among these restrictive measures, lockdowns, either partial or full—which entails the physical distancing and movement restrictions of people in a specific territory (World Health Organization, 2020a)—are currently considered the most effective, albeit the most drastic, prevention measure to control the pandemic (Lau et al., 2020). Although the restrictive measures have presented positive aspects, they have also led to negative consequences for MCC people's health: they disrupted MCC patients' usual self-care behaviours (e.g. altered dietary, sleep and physical activity habits), worsened their symptoms, affected disease treatment, limited access to the healthcare services and reduced the support provided by health care professionals (Kendzerska et al., 2021; Sacks et al., 2018).

In Italy, the first European country to be affected by COVID-19 in 2020 (Livingston & Bucher, 2020), nurses had less opportunity to care for patients with MCCs and support their caregivers through professional consultations and educational interventions, due to the suspension of outpatient visits, home care and non-urgent hospital admissions in order to allocate resources to COVID-19 patients, leading to negative consequences on MCC patients' health (Biagioli et al., 2020; Forde et al., 2021; Russo et al., 2021). Continuous interaction with nurses in all healthcare settings contributes to promote appropriate self-care behaviours in MCC patients and to educate caregivers to support patients in their self-care behaviours when needed, improving patients’ health outcomes (Bayliss et al., 2007; Clark, 2003). Few data are available regarding the effects of the COVID-19 pandemic on the self-care behaviours of patients with MCCs, and their experiences of self-care and the experiences of caregivers' contributions to patient self-care remain unexplored. To the best of our knowledge, no qualitative studies have investigated these experiences during the COVID-19 pandemic. Knowing such experiences could help nurses understand the self-care behaviours that were more easily carried out by MCC patients and caregivers despite the restrictive measures imposed by pandemic, the adjustments made to maintain self-care, and those self-care behaviours that were abandoned. Continuing to perform self-care behaviours despite the difficulties, for example, can indicate to what extent self-care behaviours have been internalised by patients and caregivers, their level of self-regulation, and how patients and caregivers manage together to get through difficult situations. Having this information could be relevant for nurses in developing healthcare services during and after the pandemic that can support the self-care of patients with MCCs and caregivers' contributions to patients' self-care.

2 THE STUDY 2.1 Aim

The aim of the study was to explore the self-care experiences of patients with MCCs and the contributions of caregivers to patient self-care during the COVID-19 pandemic; in particular, we wanted to understand any changes in self-care behaviours and their impact on patients' health from the point of view of MCC patients and caregivers.

2.2 Design

A descriptive qualitative design was used (Sandelowski, 2010). This design can provide a rich description of experiences and events on which there is limited knowledge, eventually leading to using this information to orient clinical practice and health policy (Neergaard et al., 2009).

2.3 Participants

The patients and caregivers included in the present study were a subsample of an ongoing longitudinal study SODALITY—self-care of patient and caregiver dyads in MCCs: a longitudinal study—(De Maria et al., 2019) investigating the self-care of older MCC patient-and-caregiver dyads in Italy. Patients' inclusion criteria were being aged 65 years and over and having at least two chronic conditions. The exclusion criteria were the presence of a diagnosis of dementia and cancer, and refusal to provide consent. Caregivers to be included had to be over 18 years old and be identified by the patients as the main unpaid person, either inside or outside the family, providing most of the informal care. For the present study, we excluded patients and caregivers who were unable to sustain a telephone interview, for example, because of hearing or speech problems.

A maximum variation stratified purposive sampling was used to select patients and caregivers from the study dataset to represent a wide range of self-care performances. The patients were stratified into three groups on the basis of the scores obtained at baseline in the 20-item Self-care of Chronic Illness Inventory (SC-CII; Riegel et al., 2018), derived from the middle-range theory of self-care of chronic illness (Riegel et al., 2012), that consists of three scales measuring the self-care of patients in the three dimensions of self-care maintenance, monitoring and management, whose scores are standardised from 0 to 100. Patients with scores ≥ 70 in the three scales composing the SC-CII were classified as high self-care according to previous research (Riegel et al., 2009); patients with scores 51–69 were classified as moderate self-care, and patients with scores < 50 as low self-care. Due to the lack of research identifying the best cut-off point for moderate and low self-care, these scores were determined based on researchers' experience. Caregivers were selected considering the baseline SC-CII scores of the MCC patients.

2.4 Data collection

Data were collected from May 2020 to June 2020, which corresponded to the end of the first COVID-19 lockdown in Italy. Single individual semi-structured interviews were chosen to capture the unique experiences of each participant. The study was conducted by telephone to respect social distancing. Four trained research assistants, who were Master's degree nursing students whose collaboration in the study was part of their research training program, contacted by telephone eligible participants who were not known by them; they informed them fully about the study's aim. An appointment for the telephone interview was set with the subjects interested in participating at the most convenient time. After caregivers and patients had provided recorded verbal consent, participants' sociodemographic data were collected using a brief questionnaire developed by the investigators. All the participants consented to be audio-recorded during the interviews. To avoid reciprocal influence in reporting their experiences, the patient and his/her caregiver were interviewed separately by the same research assistant, who was trained not to reveal the experiences reported by the other member of the dyad. The preliminary contact with patients and caregivers and the interviews made by the same research assistant provided knowledge of the patient and caregiver context (i.e. patient's clinical conditions, cohabitation and family relationship) and established a trust relationship with the dyad (Farooq & De Villiers, 2017). Field notes were kept by the research assistant during the interview to report any relevant information related to the interview. Consistency in conducting the interviews among the four research assistants was ensured through training in conducting telephone interviews, continuous supervision and feedback by a senior researcher (MDM). An interview guide was developed by the research team (Table 1) based on the middle-range theory of self-care of chronic illness (Riegel et al., 2012), to elicit the self-care experiences of patients and the caregivers' contributions to self-care in the three dimensions of self-care posed by the theory: self-care maintenance, encompassing behaviours performed to keep chronic illnesses stable and preserve health; self-care monitoring, encompassing the process of watching for changes in signs and symptoms; and self-care management, encompassing responses to signs and symptoms when they occur. Since the main goal of the study was to discover changes in patients' self-care and caregivers' contributions to self-care behaviors during the lockdown, as highlighted in previous studies, the opening question for each self-care dimension was a direct request to report any behavioural modifications; the following questions then asked patients and caregivers to describe the self-care and contribution behaviours that they performed, to gain more information on changed as well as unchanged behaviours. Since the self-care maintenance dimension includes behaviours aimed at the prevention of diseases, we also included a question on the specific self-care behaviours performed to prevent COVID-19 contagion, since such prevention behaviours were particularly relevant during the study period and could affect self-care behaviours related to chronic diseases. The questions were pilot tested in the two first interviews and only minor changes were made to rephrase a few questions. The data were collected until data saturation was reached, demonstrated by no new data obtained from additional interviews (Kerr et al., 2010).

TABLE 1. Interview guide Questions for patient Questions for caregiver Self-care maintenance Caregiver contribution to self-care maintenance

Opening question:

How do you think the pandemic/lockdown has changed the way you have taken care of your health in general?

Opening question:

How do you think the pandemic/lockdown has changed the way you have contributed to your family member's health in general?

Can you describe what you have done to avoid contracting COVID-19 during this period? Can you describe what you have done to prevent your family member from getting sick from COVID-19?

Do you need to follow a special diet for the diseases you suffer from?

Can you describe what diet you have followed during this period?

Does your family member need to follow a special diet for the diseases she/he suffers from?

Can you describe what diet he/she has followed during the lockdown period?

Can you describe what you have done to stay physically active during this period? Can you describe what you have done to help your family member to be physically active during this period? Can you describe how you have taken care of your emotional wellbeing during this period? Can you describe how you have supported your family member to take care of his/her emotional wellbeing during this period? Can you describe how you have kept in touch with your family physician or specialists who follows you for your chronic diseases during this period? Can you describe how you maintain contact with your family member's physician or other specialists during lockdown? Can you describe how you have arranged to get your prescribed medicines during the lockdown?

Has your family member needed help to get their prescribed medicines during this period?

If yes,

Can you describe how you have helped her/him get the medicines?

Self-care monitoring Caregiver contribution to self-care monitoring

Opening question:

How has the way you monitor the symptoms of your chronic diseases changed during this period (provide examples according to the chronic diseases the patient suffers from: e.g., check for breathlessness, blood pressure, leg edema, blood sugar, breathing noises, weight gain, O2 saturation, fatigue, etc.)?

Opening question:

How has the way you monitor the occurrence of signs and symptoms of the chronic diseases in your family member changed (provide examples according to the patient's chronic diseases: e.g., check for breathlessness, leg edema, blood pressure, blood sugar, breathing noises, weight gain, O2 saturation, fatigue)?

Can you describe what you have done to check for symptoms and side effects of the medications you are taking during this period? Can you describe what you have done to check for symptoms and side effects of the medications your family member is taking during this period? Self-care management (only for symptomatic patients) Caregiver contribution to self-care management (only if the patient is symptomatic)

Introductory question:

Did you have any symptoms related to your chronic diseases or other health problems during the lockdown?

If yes, continue interview.

How do you think the way you have managed the signs and symptoms of your chronic diseases has changed during this period?

Introductory question:

Did your family member have any symptom related to his/her chronic diseases or other health problems during the lockdown?

If yes, continue interview.

How do you think the way you have managed the signs and symptoms of your family member's chronic diseases has changed during this period?

Can you describe what you have done to treat the symptoms you had during the lockdown? Can you describe what you did to treat symptoms your family member had during the lockdown?

Did you need to consult a physician during this period to solve a health problem?

If yes,

Can you describe the problem and what you did (e.g., contact by phone, by chat, by video call, in person)?

Did you need to consult a physician to solve a health problem of your family member?

If yes,

Can you describe the problem and what you did (e.g., contact by phone, by chat, by video call, in person)?

Did you have any health problems that required a visit to the ER?

Can you describe what happened?

Did your family member have any health problem that required a visit to ER?

Can you describe what happened?

What advice from health care personnel (physicians or nurses) did you follow the most during this period? What advice from health care personnel (physicians or nurses) regarding the health problems of your family member did you follow the most during this period?

Final question:

Is there anything else you would like to add about your self-care experience during lockdown?

Final question:

Is there anything else you would like to add about your experience of contributing to your family member's self-care during lockdown?

2.5 Ethical considerations

The current study was conducted following the ethical norms and standards reported in the Declaration of Helsinki (2013). The study was approved by the institutional review board of a regional healthcare system. Eligible patients were contacted by research assistants, informed about the study, and asked for their verbal consent to participate, which was audio-recorded. To ensure the anonymity of the participants, the digital audio recordings were deleted after transcribing the interviews, and there was no identifiable information in the transcriptions.

2.6 Data analysis

All interviews were transcribed verbatim and anonymised. The transcripts were then imported in Atlas.ti version 8 for Windows. The middle-range theory of self-care in chronic illness, with the three dimensions of self-care maintenance, monitoring and management (Riegel et al., 2012), was used as the theoretical framework to inform the analysis. The analysis was team-based (FF, MDM, ML, MM and DA) and performed by doctoral and Master's level nurse researchers with experience in conducting qualitative research (MM and ML) and self-care research (MM, ML, MDM, FF and DA). Two researchers were male (FF and DA). Three researchers had academic positions, two were research fellows and one was a doctoral student. The research assistants were not involved in the analysis since they were not trained in qualitative data analysis. We followed the principles of thematic analysis, which requires familiarisation with the data by reading the transcripts multiple times, generates initial codes, searches for patterns of meaning among cases, and reviews and defines themes (Braun & Clarke, 2006). Two researchers (FF and MM) independently generated codes, and derived subthemes and themes first from the patient transcripts and next from the caregiver transcripts; afterwards, the transcripts of each dyad were analysed together and the initial codes, subthemes and themes were reviewed when needed. This strategy of data analysis enabled researchers to capture the participants' experiences both individually and within a dyad. The codes, the relationships between subthemes and themes, and the findings in caregivers and patients were considered and discussed in multiple meetings with the broader team for interpretation and implications for practice. The use of a team to analyse the data enabled team members to reduce researcher bias and gain a deeper interpretation of the data.

2.7 Rigor

The study was reported following the Consolidated Criteria for Reporting Qualitative studies checklist (Tong et al., 2007; see File S1). Criteria for credibility, transferability, dependability and confirmability were considered to ensure trustworthiness (Lincoln & Guba, 1985). Credibility was established by prolonged data engagement, independent data analysis, peer debriefing to compare ideas, examine interpretations and recognise personal values and preconceptions of the researchers who were all nurses expert in research on self-care of chronic illness. For confirmability and dependability, an audit trail was kept during the whole research process that was supervised by two members of the team not directly involved in data analysis to ensure that the findings were supported by data. Due to the difficulties in reaching recruited patients and caregivers by telephone in the months following the interview, transcripts were not returned to participants. Transferability was ensured by providing details regarding the study participants, the context where the research was performed, and a thick and rich description of the research process and findings (Nowell et al., 2017).

3 FINDINGS 3.1 Participant characteristics

A total of 26 patient-and-caregiver dyads (n = 52 subjects) agreed to participate. Out of these, 11 subjects (one caregiver and 10 patients) were not interviewed due to conflicting commitments, worsening of health problems, hearing problems not previously communicated, and difficulties in interview rescheduling. Therefore, 41 participants (16 patients and 25 caregivers) were interviewed by telephone while they were at their homes. The sample was sufficient to reach data saturation in patients and caregivers (see File S2). The patients were mainly female (62.5%), with a mean age of 76.25 years (SD 7.30), low level of education (68.7%), living in an urban environment (37.5%) and without mobility impairment (75%). They reported a mean of 3 (SD 1.41) chronic diseases, mostly represented by diabetes mellitus (75%). The caregivers were mainly female (76%) and children of the patients (72%), with a mean age of 45.76 years (SD 13.37), a high level of education (72%) and living with the chronically ill patient (56%; Table 2). The participants lived mainly in Southern and Central Italy (24% and 64%, respectively). The average duration of the telephone interviews was 20 min.

TABLE 2. Sociodemographic and clinical characteristics of the patients with multiple chronic conditions and caregivers (N = 41). Patient (n = 16) Caregiver (n = 25) Mean (SD) Mean (SD) Age 76.25 (7.30) 45.76 (13.37) Patient's number of chronic diseases 3.00 (1.41) n (%) n (%) Sex Male 10 (62.5) 6 (24.0) Female 6 (37.5) 19 (76.0) Level of education (years) 0–8 years 11 (68.7) 7 (28.0) ≥9 years 5 (31.3) 18 (72.0) Employment status Employment 0 20 (80.0) Unemployment/retired 16 (100) 5 (20.0) Living area Central Italy 10 (62.4) 16 (64.0) Southern Italy 6 (37.5) 9 (24.0) Context Urban 6 (37.5) 12 (48.0) Rural 10 (62.5) 13 (52.0) Caregiver's relationship with patient Child 18 (72.0) Spouse 3 (12.0) Other 4 (16.0) Co-residence Yes 10 (62.5) 14 (56.0) No 6 (37.5) 11 (44.0) Availability of outdoor spaces (i.e., garden) Yes 16 (100) No 0 Patient mobility before COVID-19 pandemic Non limited 12 (75.0) Limited 4 (25.0) Patient recourse to emergency department during lockdown Yes – 1 (4.0) No 16 (100) 24 (96.0) Patient chronic diseases Diabetes 12 (75.0) Heart failure 3 (18.0) Chronic obstructive pulmonary disease 2 (12.5) SC-CII Low self-care (scores ≤ 50) 4 (25.0) Moderate self-care (scores 51–69) 6 (37.5) High self-care (scores ≥ 70) 6 (37.5) Abbreviations: SC-CII, Self-care of Chronic Illness Inventory; SD, standard deviation.

Ninety-six codes were extracted from the interviews of both patients and caregivers, and these codes were grouped into 20 subthemes. The subthemes were clustered into nine themes: four themes describing the self-care experiences of patients, four illustrating the experiences of CCs to patients' self-care, and one describing the effects of the pandemic on patients' health.

3.2 Self-care experiences of patients with multiple chronic diseases during the COVID-19 pandemic

From the interviews, three situations describe how the patients performed self-care during the first months of the COVID-19 pandemic: (1) patients remained unchanged in their self-care behaviours because such behaviours had become habitual and being at home did not change how they cared for themselves (e.g. monitoring the disease symptoms); (2) patients intensified self-care behaviours because of staying at home all day and so having more time to dedicate to themselves (e.g. increasing hobby activities) and (3) patients decreased self-care behaviours because of the confinement at home and increased stress and anxiety (e.g. reducing physical activity). Differences in patients' self-care experiences did not appear to be based on age, sex, type of chronic diseases and level of self-care (high, moderate and low). The self-care behaviours reported by chronically ill older patients were aimed at (1) preventing contagion from COVID-19; (2) maintaining health stability; (3) monitoring signs and symptoms and (4) managing symptoms of chronic diseases and acute events (Table 3).

TABLE 3. Self-care behaviors of patients with multiple chronic conditions and caregivers' contribution to patients' self-care during COVID-19 pandemic Themes (patient and caregiver) Subthemes (patient and caregiver) Codes (patient) Codes (caregiver)

Preventing contagion from COVID-19 (patient)

Contributions to COVID-19 prevention (caregiver)

COVID-19 prevention Adopting distancing measures Adopting isolation measures Adopting individual prevention measures Limiting going out Avoiding contacts with family members Avoiding contacts with caregivers Avoiding social contacts Avoiding visits to family members Avoiding visits by family members Adopting physical distancing measures from patient Adopting individual prevention measures in presence of patient Adopting environmental prevention measures Educating patient in the use of prevention measures Limiting visits to patient by other family members Changing domicile to prevent patient contagion Avoiding contact with cohabiting patient Avoiding patient visits to limit infection risk Replacing the patient in all activities outside home Limiting the patient's exits from home

Maintaining health stability (patient)

Contributions to maintaining patients' health stability (caregiver)

Nutrition Increasing nutritional control Maintaining prescribed diet Maintaining usual diet Increasing food income Reducing adherence to prescribed diet Increasing control over patient nutrition Maintaining control over patient nutrition Reducing control over patient nutrition Physical activity Maintaining physical activity outside home Maintaining physical activity at home Maintaining reduced physical activity Reducing physical activity Maintaining support in patient's physical activity Medical controls Maintaining home care Maintaining contact with specialist by phone Maintaining contact with family physician by phone Reducing blood tests Reducing specialist visits Maintaining contact with family physician by phone Maintaining relations with family physician Maintaining contact with specialist by phone Maintaining planned visits to specialist Organizing patient's blood control tests * Treatment adherence Using pharmacy home drug delivery Maintaining drug home management by health worker Maintaining adherence to pharmacotherapy Managing electronic drug prescription Organizing replacement in collecting drugs from pharmacy Maintaining support of another family member for therapy administration Maintaining support of paid personnel for drug management Maintaining personal support in therapy administration Maintaining prescription management and drug collection from pharmacy Emotional wellbeing Increasing hobby activities Maintaining psychological well-being Maintaining leisure activities at home Maintaining contact with family members by phone Maintaining contact with caregiver by phone Maintaining contact with patient by phone Recommending maintaining phone contact with family members Increasing visits Social relationships Maintaining relationships with friends over the phone

Monitoring signs and symptoms (patient)

Contributions to monitoring patient's signs and symptoms (caregiver)

Symptom monitoring Maintaining monitoring of drug side effects Maintaining monitoring of blood glucose Maintaining monitoring of hypertension Increasing monitoring Maintaining monitoring Maintaining monitoring through another family member/paid worker Monitoring health status by phone