https://orcid.org/0000-0002-4533-0148
Abstract
Background
The strict isolation measures for the population imposed by the health authorities caused a prolonged disruption of informal social support networks. Both this new social situation and the decrease in accessibility to health care have generated new needs in people with severe mental illness (SMI) and their caregivers.
Objectives
This study provides insight into life experiences and health needs of a population with SMI during the first year of the COVID-19 pandemic in Spain.
Methods
Qualitative design using semi-structured dyadic interviews, conducted from January through December 2022. A purposive sampling of patients with SMI and their caregivers was carried out through key informants in rural and urban localities in southern Spain. Verbatims were identified and classified by triangulation after the evaluation of the interview transcripts. The codes were defined through content analysis using the NVivo software.
Results
Semi-structured dyadic interviews (21), identifying three main categories: 1. Social isolation: increased, causing greater personal vulnerability, exacerbation of psychiatric symptoms and exhaustion in caregivers. 2. Accessibility to Health Services: decreased with fewer face-to-face consultations, with difficulty in managing urgent situations and telephone attention in decompensated and disabled patients. 3. Continuity of healthcare: decreased with distrust in health professionals due to lack of communication between primary care and the hospital
Conclusion
COVID-19 confinement exacerbated loneliness and worse health self-perception in SMI people. Greater formal social support was required. GPs role is key to avoiding delays in appointments and lack of coordination between primary and specialised care.
KEY MESSAGES
Quality of life and medical care for SMI people got worse in controlled confinement during COVID-19 pandemic.
Caregiving burden and isolation were common, especially in rural areas and in populations at social risk.
SMI people requested an improvement in medical care accessibility, continuity, and more social resources.
Introduction
General population was significantly affected during the COVID-19 pandemic due to emotional, physical and behavioural challenges and inconveniences. Mandatory home confinement harmed the mental health of the population, causing a concomitant psychiatric epidemic [Citation1,Citation2]. Long-term psychiatric patients with pre-pandemic mental disorders have shown vulnerabilities and risk factors for the worsening of their mental health during the COVID-19 pandemic [Citation3]. Patients with serious mental illness (SMI) should have been targeted as a high-risk population for severe forms of COVID-19, because of increased COVID-19-related mortality and difficulties in family care [Citation4].
The fundamental principles and criteria governing the Spanish National Health System are public financing, universal coverage and free health care services at the time of use. General practitioners (GPs) in primary health care offer extensive accessibility and sufficient technical resources to deal with common health problems. Psychiatric specialist care includes specialised diagnosis, medical treatment and hospital care for the populations with SMI. Psychiatric care is provided to patients referred by their primary care (mandatory to be evaluated in the mental health unit) and offers medical appointments to review those populations with SMI. COVID-19 pandemic caused delays in patients seeking psychiatric care and GP appointments impoverishing the quality of their medical care [Citation5,Citation6].
Increased epidemiologic vigilance, better data sharing and training drills could help health systems be ready to respond to new infectious-disease outbreaks. Certainly, difficulties of the Spanish Public Health Service in caring for this population caused interruptions in their clinical follow-up and medical treatment during home confinement [Citation7]. However, mental health is also determined by a complex interplay of individual, social and structural stresses and vulnerabilities that should be considered for future pandemics. The SMI people and their caregiver’s experience with the delay in medical care or difficulty accessing specialised care, as well as greater social isolation, are not yet sufficiently known.
This study aimed to know how GPs could improve their medical care to SMI people during mandatory confinement periods in pandemics, as well as incorporate solutions to psychosocial and family needs as therapeutic resources. The results could facilitate a change to achieve more outstanding GP clinical leadership and to establish better communication with specialist care. The experiences, opinions and expectations of SMI people and their caregivers could offer an opportunity to identify possible risks and solutions to prevent the occurrence or to mitigate the impact of the current and future pandemic scenarios.
Methods
Design
A phenomenological qualitative approach to the population with SMI was designed to determine subjective experiences about self-health, illness perception and barriers to medical care during the COVID-19 pandemic in Spain. According to the Standards for Reporting Qualitative Research recommendations, the Qualitative Research Process Flow Chart is presented in .
Figure 1. Qualitative research Process Flow Chart.
Qualitative sampling plan
People with Severe Mental Illness (SMI) and their informal caregivers were recruited from January to July 2022 in Andalusia (the South of Spain) both in a rural area with villages of less than 1000 inhabitants and in an urban area with 30% of the population at risk of social exclusion.
SMI patients suffer from a psychotic disorder (), including the presence of positive and negative symptoms or a distorted perception of reality (due to a severely disturbed relationship pattern, contextually inappropriate behaviour or severely inappropriate affectivity). They should have had at least 2 years of disease evolution and/or functional deterioration in the last six months. Caregivers had to be relatives who shared the same household without receiving a salary for their care. All organic psychosis, patients living in closed institutions, itinerant populations or people cared for only by formal caregivers were excluded.
Table 1. Severe mental health illness diagnostic categories (ICD-10) included in the qualitative study.
Two general practitioners carried out patient selection from an urban and rural area. They chose, based on their clinical knowledge of the patients and their family situation, some couples (SMI patients and family caregivers) who had shared the COVID-19 pandemic experience. In the second step, a female non-health professional invited the chosen people by telephone for a face-to-face first contact, to know both homogeneity criteria (living in the same household) and heterogeneity criteria (sex, diagnosis, patient disability, caregiving burden and family function). She administered different questionnaires to find out the characteristics of each couple ():
Table 2. Main interviews characteristics (interviewer profiles and average duration) according to the heterogeneity criteria and depending on urban or rural environments.
The WHODAS 2.0 questionnaire is a generic assessment instrument that can measure health and disability at the population level or in specific groups [Citation8], such as people with a range of different mental conditions. The questionnaire shows theoretical underpinnings, good psychometric properties and is easy to use. The significative disability cut-off score was ten or more points.
The Zarit Burden Interview (Short version) is a caregiver self-report measure, showing the level of multifaceted strain the caregiver perceives from caring for a family member over time [Citation9]. Caregiving burden is suspected with a score equal to or greater than 17.
The Apgar family questionnaire on family function is valid and reliable in Spanish people [Citation10]. Family dysfunction offers scores equal to or less than three.
Finally, according to the decision of the entire research team, the people to be interviewed were chosen and they were called to participate in a videotaped interview.
Data collection
Semi-structured dyadic interviews were conducted with patient-caregiver couples from September to December 2022. A female non-health moderator, with experience in qualitative research and with no prior contact with participants conducted those interviews. The moderator used an unstructured questionnaire with open-ended questions (Box 1), based on previous studies by the research team in the same locations [Citation11]. Open questions facilitated interaction between participants, looking for a relaxed atmosphere and fluid communication. Moderator made field notes during interviews.
New topics not contained in the questionnaire (emergent themes), as insights derived from needs or experiences of research participants, were promoted and included. Interviews were video recorded and subsequently transcribed, identifying each participant by the heterogeneity criteria (age, sex, place of origin, patient or caregiver, and type of mental illness). Written documents with verbatim transcriptions were uploaded into NVivo software for qualitative analysis.
Data analysis
Verbatim transcriptions were utilised to conduct a systematic conventional qualitative content analysis, with consensus among all researchers. Themes were compared within and across participant roles and sites. Words, sentences, and paragraphs related to content were analysed as meaning units and classified into codes. Codes were then compared based on their similarities and differences to select main themes and their subthemes (). Codes focused on the overarching content of the interview. Researchers reached a consensus to ensure convergence of information. Nvivo software was employed for data analysis and management. Thematic saturation was achieved after the interviews, thus additional recruitment was deemed unnecessary.
Table 3. Themes, subthemes and codes obtained through content analysis.
AP, JR and CN designed the patient recruitment and interview model based on their knowledge of the study population and previous qualitative research studies experience. BR had previous experience in conducting and transcribing clinical interviews. All the interviews were read in full by the entire research team (JR, AP, CN and BR), who independently subjected them to preliminary coding using triangulation. NVivo software was used by BR. In subsequent meetings, the coding was refined and the final designation of the definitive topics was agreed upon. An official translator was hired to translate the Spanish expressions into colloquial English language with content as close as possible to the original speech.
Results
Twenty-one semi-structured dyadic interviews were conducted (, ) with 19 min (± SD 7.2) (range 6–33 min) as average length. Participants had a mean age of 58.8 years (±SD 13.1), 62% (13 of 21) were female, 33% (7 of 21) had a significative disability and 24% (5 of 21) perceived family dysfunction. The included diagnostic categories were schizophrenia (8 of 21), bipolar disorder (7 of 21) and major depression (6 of 21). The caregivers had a mean age of 52.9 years (± SD 16.9), 47% (10 of 21) were female, and all were first-degree relatives (10 spouses, 7 children, 3 siblings and 1 mother). 62% (13 of 21) showed a caregiving burden and 33% (7 of 21) perceived family dysfunction.
The collected data is presented in three themes and eleven subthemes (), corresponding to the points of the interview script, the hypotheses generated, and the explanatory framework.
Theme 1. Social isolation
Theme 1 identified a generalised feeling of social isolation, characterised by a lack of formal support and an intense caregiving burden.
Sense of vulnerability.
Isolation exacerbated a sense of vulnerability and helplessness during the pandemic due to home confinement and restricted social interactions. In rural areas, this sense of isolation was increased by a more significant presence of social stigma and remoteness from cities, resulting in symptoms of anxiety and depression with worsening sleep and weight gain in patients and caregivers.
‘I'm scared to death with this COVID thing. I'm stuck at home all day. I don’t go out for walks. I spend all day locked up at home and I'm very stressed.’ (woman with bipolar disorder and disability, urban environment).
‘You have to travel for everything, at the moment you feel a bit lonely, my sisters are backing away and they don’t talk to me…’ (woman with depressive disorder and family dysfunction, rural environment).
‘It’s a feeling of being alone, facing extremely complicated situations. We find ourselves in a situation of helplessness, a very violent situation, we are ending up with anxiety and feeling frustrated’ (female caregiver with intense overload and family dysfunction, rural environment).
Caregiving burden.
Caregivers looked exhausted, especially in rural areas and when the patient has a degree of disability, having to provide continuous care and suffering physically and emotionally. Confinement has forced families to pay greater attention to the patient’s self-care by monitoring for new symptoms and taking special care to adhere to treatment.
‘He has had a very bad time and I have had a very bad time too and I am having a very bad time now, I cry a lot sometimes to see him like this, this is not his personality. With the pandemic, life has changed us, he was a very cheerful person and now he is not anymore.’ (female caregiver with intense overload, rural environment)
‘The pills are a challenge, a battle with the disease and wanting to get it out of there… it’s a battle you’ve won against life and the disease.’ (woman with bipolar disorder, urban environment)
Lack of formal social support.
Changes in home care to avoid COVID-19 infection were well accepted. However, in rural areas the medical care offered was less flexible and not adapted to new needs. The lack of understanding of the patient’s mental problem and its family repercussions has also been highlighted by caregivers. Likewise, there was a demand for structured social support in associations to provide information about the illness, to facilitate social contact and offer new and attractive activities. Formal social support provided by different organisations is more accessible to obtain in urban areas than rural areas. It has a financial cost that is difficult to bear and was utterly interrupted at the beginning of the pandemic.
‘The person who came to look after me wore a mask and had gel, she looked after me very well. They have been vaccinated by the company and there has been no problem at all.’ (man with schizophrenic disorder, urban environment).
‘They set the timetables, they don’t consult you. I think they could be a bit more flexible because I need a person to help me. They are people with a special problem that not everyone understands.’ (male caregiver with intense overload, rural environment).
‘I’m a member of an association, but I haven’t been going for many months because of the pandemic. But I don’t have any money, I haven’t paid my membership fee. It distracted me to go out and meet people and do activities such as music therapy.’ (woman with bipolar disorder, urban environment).
Theme 2. Health services accessibility
Theme 2 showed a high delay in medical attention. Besides, it was unknown where to go in emergencies. Telemedicine was not helpful for all patients.
Changes in healthcare.
The decrease in face-to-face consultations has limited accessibility to healthcare facilities and has increased delays in medical check-ups. Patients understood the risk of contagion, in fact they felt that they were a population more vulnerable to infection by COVID-19 but they were dissatisfied with the lower number of appointments with medical staff and the difficulty in contacting their healthcare professionals. The delay in healthcare has been highly criticised, especially the postponement of follow-up routine visits in Mental Health. Patients from rural areas reported a greater sense of lack of psychiatric care, with frequent and successive postponements of follow-up appointments and without being able to choose where to be attended.
‘When I wasn’t feeling well I tried to go to the healthcare centre as little as possible, because if I go a lot now with the Coronavirus I’ could catch what I don’t have.’ (man with a schizophrenic disorder, urban environment)
‘My doctor and my psychiatrist have not seen me in the last few months, I have only been attended by telephone. I am dissatisfied because they have not called me much and when I went to get my injection every three months, the psychiatrist was not there.’ (woman with bipolar disorder, urban environment)
‘They postponed several appointments, told me they would call me back to give me an appointment, and now we have been at it for two weeks and it’s the same thing again. Follow-up appointments don’t occur or aren’t on time. And we can’t go to another hospital, they won’t let us.’ (female caregiver with intense overload and family dysfunction, rural environment).
Telemedicine use.
To avoid contagion in healthcare centres, telephone consultations have been prioritised over face-to-face consultations. This change led to conflicting experiences. On the one hand, they understood the need to avoid contagion and the help they can receive with this type of care. On the other hand, it has forced the patient to select the reasons for consultation, shortening the contact time but lengthening the waiting time. Most of them did not know the time of the doctor call. Patients with depression and/or disability preferred face-to-face care because it was much more complete, allowing better human contact and a more accurate medical assessment.
‘They couldn’t see me in person, so on several occasions they have attended me by telephone and have done so, for as long as I needed. They took the doubts that I had or that arose in account, yes, they have attended me very well.’ (woman with bipolar disorder, urban environment).
‘I've missed the face-to-face consultations, because over the phone, I don’t have the time to explain and tell them all the things that are happening to me, so I only tell them the most serious things.’ (man with depressive disorder, urban environment).
‘There are certain things that can be solved with a phone call, but personal contact is vital for people with a mental illness. In the times we are living, they isolate themselves even more, these calls leave you with a feeling of emptiness.’
(exhausted male caregiver, rural environment).
Urgent situations.
The caregiver usually managed the need for an urgent consultation due to a decompensation. Sometimes it was solved with a phone call, especially in the city but there were families who preferred to consult private medicine, more common in the urban environment, seeking speed and continuity of care.
‘She had a very serious relapse and you call (mental health) and they respond. The next day or the same day the psychiatrist is seeing her. They have helped me with the doubts and attended me very well.’ (male caregiver, urban environment).
‘If you see that there is a sudden worsening, we don’t have access to anything, I don’t have anything. I will just call my private psychiatrist and that’s it.’ (female caregiver with intense overload, rural environment).
Theme 3: Continuity of healthcare
Theme 3 There was an excessive turnover of doctors that worsened the patient’s confidence in the professional. Primary Care-Hospital communication was minimal.
Turnover of healthcare professionals.
They requested to be attended always by the same professional. That was not happening during the pandemic, due to the high turnover of professionals in Primary Care Centres and Mental Health Teams.
‘A (mental health) nurse picks up the phone and then they pass me on from one nurse to another. It could be better if it would always be the same nurse and if they wouldn’t replace them so often.’ (woman with bipolar disorder, urban environment).
‘You already trust them and as soon as you get to know them, they leave the centre. They replace her (psychiatrist) and it’s no longer the same.’ (woman with bipolar disorder and disability, urban environment).
In the rural environments, that situation had already been occurring before the pandemic and worsened because of a continuous professional turnover, especially in general practice. In the discourse, there was a demand for a friendly and approachable professional who knows the patient’s history and psychosocial circumstances through prolonged and continuous care over time, ‘like the former village doctors.’ In general, they were asked to offer a genuine listening ear and to have biopsychosocial knowledge of the patient and their caregivers.
‘One day there is one (family) doctor, the next day there is another doctor, at least 15 different ones… It’s crazy! You have to start telling them everything from the beginning and often they don’t have any information about anything in the medical records.’ (man with schizophrenic disorder and dependent, rural environment).
‘To have a (family) doctor who keeps a record and knows what you have, not like now, with doctors coming and going. What I need is someone to visit him when he is not well, a person close to him to consult or to see the patient.’ (female caregiver with intense overload and family dysfunction, rural environment).
Primary-Specialised care communication.
They also perceived a complete lack of communication between GPs and psychiatrists, being the patients and caregivers the ones who have to provide information to both healthcare settings.
‘After we have seen the psychiatrist, we bring the report to the family doctor. Normally we are the ones to inform him.’ (female caregiver with intense overload, urban environment). ‘I see little continuity and coordination and little follow-up. They only do what they have prescribed him as a treatment and little more.’ (female carergiver with moderate overload, rural environment).
Trust in the health professionals.
Trust in healthcare professionals was based on proximity, approachability, and continuity of care. The changes in healthcare caused by the pandemic were tolerated only when the healthcare professional was known by the patient and there was a prior long-term monitoring. There was a unanimous request to be able to count on familiar professionals who provide friendly and respectful treatment and ensure confidentiality. On the other hand, there were many doubts about telephone care with different professionals attending to the same patient. That generates an inevitable rejection The psychiatrist played a central role in patient care, and patients asked for more time during consultations and not to delegate his functions to other professionals.
‘The psychiatrist is kind and a very good professional, she treats him very well. We feel very pleased with her, she also treated me for my depression.’ (Female caregiver with intense overload, urban environment).
The role of psychologists in mental health teams was positively appreciated, linked to communication with the attending psychiatrist and family support, as well as the other professionals, as long as coordination between them is evident. The GP was well valued for his closeness but a more active role in the follow-up and a link to mental health were requested. The role of nurses in primary healthcare was highlighted for its great approachability and proximity, especially in rural areas.
‘A psychologist attended us and the truth is that it was very good. I also know the social worker and the nurse, who then talk to the psychiatrist. All very good.’ (Female caregiver with intense overload, rural environment).
‘I went to see my (family) doctor, mainly to tell him to start my treatment or at times, I have told him something, that I am more tired. But he rarely had to do anything regarding my illness, as they see me in Mental Health…. It would be good if he would get in touch with the psychiatrist.’ (woman with bipolar disorder, urban environment).
Discussion
Main findings
The physical and social compulsory confinement avoided contagion but disrupted social relationships. The lack of continuity in psychiatric care and difficulties in contacting their GPs, due to a discontinuity in presencial medical care or problems maintaining a telephone conversation, increased the feeling of social isolation and caregiving burden. Patients did not see GPs as a valid reference to solve their mental health problems, mainly due to the poor relationship between primary and specialised care. Finally, people with SMI from rural areas and at risk of social exclusion indicated greater difficulties in accessing GPs care and lack of social support, worsening their self-perception about their illness.
Strengths and limitations
The main strength is to incorporate the vision of SMI patients and caregivers together, enriching the discourse’s content. The GPs’ accumulated knowledge of the study population and electronic medical records allowed the inclusion criteria to be adequately assessed. The results of the questionnaires administered in the initial interview helped to select the participants who could provide more information. The criteria for homogeneity and heterogeneity included a wide range of participants’ experiences with the phenomenon under study. All recruited people attended the interviews, which were carried out in primary health centres close to their homes. The number of interviews was increased (from 16 to 21) until data saturation has been achieved.
Otherwise, the main limitation was the possible lack of collaboration of the interviewees, with a duration shorter than usual in this type of qualitative techniques. Nevertheless, the interview average length was approximately 20 min and speech saturation was reached. Qualitative study limitations make it difficult to generalise the results to other settings with different cultural and socio-economic characteristics. However, qualitative methods are ideal for assessing this population’s social and health needs during pandemic period. Sampling was done purposively to achieve maximum variation in perspectives and experiences across geographic settings.
There has also been a deficit of participation in patients with disabilities, although caregivers’ comments are usually endorsed by the patients themselves. There may be a possible selection bias, not including all diagnostic categories of SMI, and a social desirability bias, ignoring the importance of decreased income during the pandemic and the presence of domestic violence.
Social isolation
Sense of vulnerability and lack of formal social support. That period of complete isolation caused an exacerbation of chronic psychopathology (2,3,5,13,14) and greater vulnerability in patients and caregivers [Citation12]. In Spanish rural areas, people perceive a lower possibility of having someone to whom they could communicate problems, relevant facts or conflictive situations that require understanding and help about their illness [Citation11,Citation13]. The cessation of work, educational and leisure activities further aggravated this situation in rural environments [Citation2,Citation14,Citation15].
Caregiving burden. The caregiving burden in families with a SMI patient is a common phenomenon, especially in villages and when the patient has a significant disability. Caregivers play a central role in family functioning. They promoted good family dynamics and increased resilience, while the feeling of social isolation was related to poor health perception and family dysfunction [Citation16]. All of this hinders the development of coping skills and leads to more significant experiential avoidance to manage health and social effects of the pandemic [Citation17,Citation18].
Health services accessibility
Changes in healthcare. Accessibility to healthcare during the pandemic has declined in the Spanish Public Health System, worsening previous communication difficulties and distrust in healthcare professionals [Citation6,Citation7]. Both delays in medical appointments and lack of knowledge on contacting their healthcare providers generated greater uncertainties, especially when urgent care is required. The healthcare was not proactive and increased the vulnerability of this social group. However, there are no prospective studies that reliably link delay in care with a worsening of psychiatric illness and greater difficulties in adherence to treatment [Citation1,Citation5,Citation19].
Telemedicine. The implementation of telephone consultation is a strategy that has attempted to increase access to healthcare and may offer beneficial clinical effects, particularly in treating mental health problems but can marginalise those who do not have access to technology and lack technological literacy [Citation20,Citation21].
Urgent situations. Caregivers are responsible for deciding when their family member needs urgent care, considering both clinical symptoms and psychosocial circumstances. There was a significant drop in the number of emergency services during the COVID-19 pandemic but suicidal ideation and death by suicide exhibited a growth trend during the COVID-19 pandemic [Citation22,Citation23]. In this sense, telemedicine is a possible and accepted approach for this population that would help address the urgent needs of patients, families and communities, especially in rural environments [Citation24].
Continuity of healthcare
Turnover of professionals. The non-continuous medical care provided by GPs and psychiatrists during the pandemic could be understood as a lack of commitment by the Health National System to the SMI population, especially in areas at risk of social exclusion and rural areas [Citation25,Citation26].
Interlevel communication. The psychiatrist is identified as the main health provider, who provided medical care not coordinated with the GP’s care. Accessibility and continuity in follow-up and communication with the hospital are demanded of the GP, acting as a liaison with the Mental Health services. A stepped integrative care model in the Health System could improve proactive medical care for the SMI population and it means focusing on preventative measures to improve physical and mental health and avoid social isolation [Citation27].
Trust in health professionals. Trust in the health care professional has been suggested to be the foundation for effective treatments and fundamental for patient-centred care. However, high health professional turnover, along with less accessible and no continuous medical care, caused a lack of confidence in general practitioners [Citation26].
Implications for research and practice
Useful results are offered as a starting point for recognising the healthcare needs and preferences of patients with SMI and their caregivers in any pandemic situation involving a social isolation. However, despite the COVID-19 pandemic, no significant changes have been developed in health policies to improve medical care for patients with SMI, so we are witnessing a demonstration of resilience by these patients and their families [Citation28,Citation29]. Coordination between Primary Health Care and Mental Health services is as important as the involvement of patients with SMI and their families in making decisions about their health to improve healthcare management in the face of similar future circumstances [Citation27]. It is not only about reducing waiting time until appointment or promoting continuity of medical care [Citation4], but also about incorporating life experiences and health needs of SMI patients and caregivers to promote their real inclusion and empowerment within the healthcare system, improving the social support [Citation14].
Conclusion
The greater feeling of loneliness in people with SMI and the more significant burden in care, the absence of an accessible referring doctor, and the delays and discontinuities in specialised care are the main negative experiences of people with SMI during the mandatory confinement by the COVID-19 pandemic. The actions to effectively confront a future pandemic situation include giving clear information to individuals with SMI about how to contact medical services, enhancing the role of the GP as a reference physician and establishing a collaborative model of specialist support between primary and specialised care. Likewise, a best formal social support is necessary to break the feeling of isolation and to strengthen the social support of SMI patients and caregivers. How long the sense of vulnerability and isolation will persist after the end of pandemic isolation measures as well as defining specific diagnostic categories of high risk remain for future research.
Ethical approval
This study received approval from the Ethics Committee of Andalusian Health Service (Jaén-Spain). Researchers observed ethical considerations by providing written information about the study’s objectives, obtaining informed consent, and ensuring anonymity while preserving video files. Videotape recordings were deleted per the ICC/ESOMAR International Code.
Box 1 Semi Structured Dyadic Interview Guide.
Social Experiences and Health Needs of Patients with Severe Mental Illness and their Caregivers during the first year of the COVID-19 pandemic in Spain
Greeting and Welcome:
Moderator introduction.
Communicative Agreement:
Presentation of the group of researchers and objectives of the interview.
Explanations about Interview setting, duration and confidentiality.
Signature of the informed consent by the interviewees.
In-depth discussion
Starter question:
“Our topic is < experiences and needs during mandatory confinement in the COVID-19 pandemic>. How have you lived the experience of confinement and what impact has it had on your health?”
Opening question. Allow interviewees to talk freely with each other.
Quality of care in each area of the health system (Primary Care, Emergency, Hospital).
Accessibility to health care.
Confidentiality and continuity of care.
Assessment of professionals (health and non-health).
Knowledge of Andalusian Health Service and user rights/duties
Necessary improvements in the organisation of care
Emerging topics (note to moderator: collect new topics that arise for subsequent interviews).
Interview closing
Brief summary of the contributions.
Thanks to the interviewees.
Acknowledgements
The authors gratefully acknowledge methodological and technical help from members of the Fundación para la investigación Biosanitaria de Andalucía Oriental – Alejandro Otero. Special thanks to Sofie Demets and Sofía Pérez-Martínez for their collaboration in the English translation.
Disclosure statement
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
Additional information
Funding
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