A mixed-method approach was conducted. In a mixed-methods study, both qualitative and quantitative data are combined, which helps to provide a more complete picture than a standalone quantitative or qualitative study, integrating the benefits of both approaches (
). It requires a purposeful mixing of methods in the data collection, analysis and interpretation of the evidence, and is appropriate for answering research questions that neither quantitative nor qualitative methods could answer alone (
). Considering that in this research we were attempting to correlate the participants' perceptions regarding mental health with objective measurements, triangulation was considered the best design for this study. This involves combining several research methods to study one thing from different perspectives. They overlap each other somewhat, are complimentary at times and contrary at others. This approach provides a better understanding of the phenomenon under study and is particularly useful in behavioral, health and social sciences (
The participants of the study were family caregivers of people with mental disorders living in Valencia, Spain. The study was carried out in the Organisation for the integral health of people with mental disorders (the Spanish acronym is ASIEM), a non-governmental organisation founded in 1999 with >600 members, most of whom are people with a psychiatric diagnosis and their relatives. Its activities are aimed at the people affected by a mental disorder and their families.
The inclusion criteria were: being a family member and primary caregiver of a person with a mental disorder (if this responsibility was equally shared with another person, the two of them could take part in the study); being able to understand and express themselves in Spanish; being members of the organisation ASIEM or attending the organisation meetings and being willing to participate. Those with a cognitive impairment that prevented them from answering the interview questions were excluded.
The participants were recruited through convenience sampling. One of the authors (V.S.-M., female, RN, MHN, PhD, lecturer at the University of Valencia) contacted the aforementioned organisation and requested permission to introduce the study and recruit volunteers. She was invited to attend the first minutes of three ordinary meetings with different family caregivers who were members of the organisation (held in November and December 2019). Before the meetings started, she addressed the attendees to briefly introduce the research group, explain the purpose of the study and invite those interested in participating. She left a notebook in the room and went out, so the volunteers could provide their name and contact number for the research team to telephone them in order to arrange an interview. At the end of the meeting, the notebook was collected by a responsible person, who then returned it to the first author. This meant that the potential volunteers did not feel under pressure to take part in the study. The reasons for not participating were not explored at this point. Not all of those who volunteered to participate were interviewed, as data saturation was achieved. The research team thanked the volunteers who did not participate through a telephone call.
A total of 13 family caregivers were included in the study. The sample size was determined when data saturation was reached, i.e.
when the information obtained was repeated and did not provide new aspects (
Saunders et al., 2018
- Saunders B.
- Sim J.
- Kingstone T.
- Baker S.
- Waterfield J.
- Bartlam B.
- Burroughs H.
- Jinks C.
Saturation in qualitative research: Exploring its conceptualisation and operationalisation.
). In this study, data saturation was achieved with 12 interviews, and one more participant was interviewed to confirm this.
First, qualitative analysis was performed. The textual corpus was prepared for reading, and the recordings and the notes from the interviews literally transcribed. The interviews were transcribed by the same person who observed them. For the content analysis, the researchers (S.C., V.S.-M. and O.C.) pre-analysed the texts. The pre-analyses were performed through several readings of the primary documents, and the first list of topics was created. The quotations were then generated, highlighting the most relevant text segments, and coded. Relationships were then established, and code categories and themes were created to interpret the phenomenon being studied based on the informants' discourses. Finally, we verified that the transformed data matched the original ones.
The coding was carried out inductively and deductively. A priori
topics were defined when the conceptual framework was made, and other topics or codes emerged as the analysis was carried out (
Pope et al., 2000
- Pope C.
- Ziebland S.
- Mays N.
Qualitative research in health care. Analysing qualitative data.
). The content analysis included triangulation of the researchers to increase the rigour of the analyses and to avoid the potential bias caused by the expectations of the first author, and as such V.S.-M. and S.C. or O.C. analysed each interview. For the correct interpretation of data, the third researcher reviewed the transcription and participated in the decision when consensus was not achieved. Atlas.Ti (version 8) was used for the analysis of the qualitative data. This software is a tool for content and discourse analysis of qualitative data that facilitates management, organisation, and interpretation (
Soratto et al., 2020
- Soratto J.
- Pires D.
- Friese S.
Thematic content analysis using ATLAS.Ti software: Potentialities for research in health.
). The Consolidated Criteria for Reporting Qualitative Research (COREQ) were followed (Supplementary file 1) (
Tong et al., 2007
- Tong A.
- Sainsbury P.
- Craig J.
Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups.
The quantitative data collection started after each qualitative interview. First, a form including the family caregivers' sociodemographic and clinical data was completed, and several quantitative instruments were administered to the participants. These questionnaires measured the following variables: anxiety or depressive symptoms (Goldberg's Anxiety and Depression Scale) and sleep quality (Athens Insomnia Scale). Considering that the questionnaires might invite the participants to express some aspects not reflected in the interview, this part of the data collection was also registered.
The Anxiety and Depression Scale was presented by
Goldberg et al., 1988
- Goldberg D.
- Bridges K.
- Duncan-Jones P.
- Grayson D.
Detecting anxiety and depression in general medical settings.
as a screening instrument for adults and older adults, comprising up to 18 items. There are four screening questions for anxiety and four for depression. If there are two or more affirmative answers to the initial questions on the anxiety scale (one or more for the depression scale), five more questions need to be asked. The final score is the number of affirmative answers for each subscale. Individuals with anxiety scores of five or depression scores of two are considered to have a 50 % chance of clinically significant disturbance, and the probability rising sharply above those scores. This instrument was validated in Spanish by
Montón et al., 1993
- Montón C.
- Pérez Echeverría M.J.
- Campos R.
- García Campayo J.
- Lobo A.
Anxiety scales and Goldberg's depression: An efficient interview guide for the detection of psychologic distress.
, showing adequate sensitivity (83 %) and specificity (81.1 %), and with a 95 % positive predictive value.
The Athens Insomnia Scale is a self-report questionnaire used as a screening mechanism for sleep disturbances. The full scale is based on the International Classification of Diseases (ICD-10), with eight items and a score ranging from 0 to 24 (the cut-off point is six, and higher scores suggest a more severe problem). It was validated by Soldatos et al. in 2000 and validated in Spanish by Gómez-Benito et al. in 2011 with acceptable psychometric properties (Cronbach's alpha was 0.86).
The Zarit Caregiver Burden Scale (
Zarit et al., 1980
- Zarit S.H.
- Reever K.E.
- Bach-Peterson J.
Relatives of the impaired elderly: Correlates of feelings of burden.
) is a self-administered 22-item questionnaire with each item scored from 1 (“none”) to 5 (“nearly always”). The score may range from 22 to 110, representing 3 levels of burden: no burden (22–46), mild burden (47–55) and severe burden (56–110). This instrument was validated into Spanish in 1996 (
Martín-Carrasco et al., 1996
- Martín-Carrasco M.
- Salvadó I.
- Nadal-Álava S.
- Miji L.C.
- Rico J.M.
- Lanz P.
- et al.
Adaptación Para nuestro medio de la escala de sobrecarga del cuidador (Caregiver burden Interview) de zarit’.
The data from each psychometric scale (Goldberg's Scale, Athens Insomnia Scale and Zarit Caregiver Burden Scale) were quantified according to the published instructions of those scales, and the score was obtained for each caregiver. It means that for each caregiver we calculated the score of each scale reflecting the severity of anxiety, depressive, insomnia symptoms and caregiver burden. A higher score means a more severe symptomatology on all scales.
The research was approved by the Human Research Ethics Committee of the University of Valencia on September the 5th, 2019 (protocol number 1046761). Confidentiality of data was warranted. Permission for recording the interviews was gathered, and all the participants signed informed consent once they received all the needed information about the details of the study.
A total of 13 caregivers participated in the study, whose sociodemographic characteristics are described in Table 1
Table 1Sociodemographic characteristics of the participants.
The information obtained through the interviews was classified into two major themes: emotions and the perceived mental health of family caregivers. In the second theme, perceived mental health status, five categories were identified: anxiety, burden and exhaustion, needing psychological or psychiatric treatment, insomnia and suicidal thoughts.
The first central theme, emotions, was divided into five categories in which 15 codes were identified: irritability (two codes), painful emotions (four codes), pressure (three codes), emotions orientated towards coping (two codes) and positive emotions (four codes). The theme structure is described in Table 2
. In the table, the emotions referred, either in the past, in the present, or both, have been indicated.
Table 2Categories and codes identified through qualitative analysis for each participant in the past and present.
X: Emotions described as experienced in the past; P: Emotions expressed as experienced at present.
Two categories outlined the others in terms of frequency: pressure and emotions towards coping. More precisely, the most reported feelings among caregivers were pressure-nervousness, described in all the participants at a specific moment, resignation-acceptance, with 12 out of the 13 participants reporting feeling them, and fear with ten caregivers. Those were followed by uncertainty with eight participants.
Two codes were identified in this category: lack of control and tension. The participants referred them almost exclusively in the past, before their relative was adequately diagnosed or treated, did not take the prescribed drugs, or presented exacerbations of the disorder.
Several participants indicated that, in the past, they felt a lack of control of the situation with their emotions running high. This happened when they were not able to control their nerves and reacted without thinking:
C6: If someone is standing under lots of pressure, a moment arrives when they can explode like a balloon when it's pricked. That happens to me.
Some participants also manifested a feeling of irritation and tension:
C13: I did not realise our son was ill, and I thought he was being lazy. Our relationship went to the extremes of calling each other names and swearing at each other.
Four codes were classified as painful emotions: sorrow, hopelessness, feeling of guilt and loneliness.
The most common emotion within caregivers in this category was sorrow, which was felt not only in the past but also in the present:
C12: I'm sorry for everything that has happened… I think I'm getting over the grief. It was tough for me when we were told the diagnosis because I read, was well informed, and could recognise the symptoms.
The suffering was often accompanied by a feeling of guilt and remorse due to maintaining their everyday life, or for not realising the situation their relative was in earlier and therefore failing to react properly or accept the situation:
C13: His mother and I have sometimes blamed ourselves; there's something we must have done wrong.
C5: When I arrived home from work, I felt guilty for having been working […] My other son says I have guilt inside me.
Some participants also reported a feeling of hopelessness with the situation:
C1: I looked at the horizon and saw no end in sight.
One participant said that she felt lonely during the care process due to a lack of understanding of the situation by the rest of the family:
C11: My husband doesn't help with this. When he sees I am sad or nervous, the only thing he does is shout at me and blame me; he doesn't help at all. […] We have different views on care; he understands it differently, and doesn't help or support me.
C2: I have more brothers who live away and the truth is, they don't worry much about our family. I am the one who carries the burden.
This category included three codes named nervousness, fear and uncertainty-concern.
Nervousness was accompanied by a feeling of being unable to cope with the situation, and sometimes they mentioned a feeling of stress, tension or anxiety:
C11: For me, it's daily anxiety, worry, and inner suffering knowing my daughter is not well and lives independently. It's a constant struggle. I've accepted it. I live with it. But no matter how much my therapist insists I have to live my life, I can't because she is my life.
Most participants felt fear for several reasons. For instance, some reported that they were afraid to leave their relative alone at home, even momentarily. Others felt afraid of their family member's reactions, especially when the situation was uncontrolled due to a lack of adherence to the drug treatment:
C2: I've been terrified because I don't know how far this could go.
C12: All this time, I've experienced so much stress. I suffered so much for my son; I thought he would let himself die.
Several caregivers felt an important degree of uncertainty and concern about the future. They felt worried about what the situation of their loved ones would be after they died or if they were unable to care for them.
C9: I worry that my daughter will have nothing to live on when I go.
Emotions orientated towards coping
Two emotions were considered in this category as they were perceived as essential steps towards acceptance or coping: incredulity and resignation.
Seven caregivers indicated a feeling of skepticism since in the past, they had faced extremely difficult situations, and now they lacked confidence about the future, and preferred to wait and see how the person with the illness progressed.
C5: I'm very optimistic but very realistic. Realistic as I am, I know miracles don't exist. So yes, I do see things clearly, but I'm always suspicious. Is this going to be the same afterwards? I don't know. The thought doesn't torment me, but I'm wary of saying it: let's see what happens.
Resignation was one of the emotions felt by most participants. Caregivers considered that they had to accept the circumstances they were facing, and their role was to care for their loved ones.
C7: I don't mind looking after my son because I think it's my obligation as a mother to be with him and to look after him, just like my daughter. I see it as something I have to do, and I do it, but I would like him to be a healthy and happy young man. But that's my lot, and I have to take it all in my stride.
Positive emotions or experiences
This category included four codes, namely hope, peace, control-strength and satisfaction.
Several caregivers had a feeling of hope. They were optimistic as they thought that the situation would improve in the future.
C7: I expect him to work and have his own life, even if he needs some [medical] control.
C6: I'm optimistic. I mean, I think this is a horrible time, but it can be remedied. If we can remedy it, we have to try to remedy it.
Another feeling reported by caregivers was calm.
C8: I have succeeded in being quiet, calm and having peace of mind.
Another positive emotion that emerged from the interviews was satisfaction. The caregivers indicated that they felt satisfied when helping others, and especially their family:
C2: I feel satisfied when I help my family, my people, the ones around me… Those are values that my family instilled in me.
C8: It's enough to be well enough to help her, and I think how lucky I am not to be ill.
Moreover, some family caregivers expressed control of their emotions, like a sense of domain. Sometimes it meant the ability to look happy in front of the rest of the family:
C5: I think that controlling my feelings and my character helped me. I always had to work, and working made me strong and aware. […] I've always managed to get myself going, and it's been a driving force. I also try to be cheerful in front of others, with my children, grandchildren, and friends. I try to be happy in front of them.
In addition, they felt that their experiences gave them strength to cope with the situation:
C1: Our quality of life is lovely now. If another problem comes up, we are more prepared and we have another perspective for dealing with it.