Thoracotomy surgery comprises a surgical incision of the chest wall, through the ribs, to operate on the lungs. This surgery is one of the most common and effective treatments for primary and metastatic lung cancer (Sun et al, 2018). In most cases, a thoracotomy is the first intervention that a patient undergoes when having treatment for lung cancer (Refai et al, 2018). From the pre-operative and postoperative stages in hospital through to the post-discharge period at home patients undergoing thoracotomy are usually accompanied by informal caregivers, who are often family members or other loved ones.
Illness and hospitalisation experiences are known to induce feelings of shock, anxiety and fear not only in the patient, but also in their loved ones (Mattila et al, 2014). The experience can cause changes in the life of the family members, and the experience that informal carers go through can have both a physical and psychosocial impact (Sun et al, 2018).
Background
Studies regarding caregivers have been carried out mainly in contexts where the caregiver plays a major role in the decision-making process due to the limited ability of the patient to decide independently. These contexts include paediatric care, care of patients with cognitive impairment such as patients with delirium and dementia, palliative care and patients in intensive care settings (Philibert et al, 2011; Mackie et al, 2019).
Limited studies have looked into the experience of the informal caregiver throughout thoracic surgery. A qualitative study (Mosher et al, 2013) into the experiences of 91 caregivers of patients with lung cancer, alongside a number of patients who had undergone lung surgery, revealed that 62% of caregivers showed negative emotional consequences, such as disrupted emotional wellbeing and an inability to cope with stress; 32% reported a decline in physical health. Furthermore, in a quasi-experimental study performed by Kim et al (2016) caregivers of patients who had undergone lung surgery reported greater levels of psychological distress compared with patients themselves. Sun et al (2017) subsequently suggested that it is important to consider and plan for the wellbeing of the caregivers of patients who have undergone a thoracotomy.
The Maltese family is known to comprise a closely knit group of individuals. Family members are given priority, and family members ‘remain united by ties of affection and obligation of care and support’ (Abela, 2016). The presence of the caregiver during the patient's hospital stay can provide a sense of reassurance to both the patient and their loved ones (Davis et al, 2014). The heightened need of the caregiver to receive continuous communication and information throughout the hospital experience is highlighted in the related literature (Segaric and Hall, 2015; Sun et al, 2017). Information-giving pertaining specifically to pain and pain management has been extensively studied. The evidence indicates that patients and caregivers appreciate and feel better prepared when pain and pain management are discussed prior to a surgical intervention (Grondin et al, 2014).
The literature also highlights the need for alleviating the anxiety of both the patient and the caregivers through appropriate preparation and continuous support by health professionals (Grondin et al, 2014; Schreuder et al, 2019). According to Grondin et al (2014), higher levels of anxiety in the caregiver are associated with reduced ability to support the patient, which could in turn contribute to higher levels of anxiety in both the caregiver and the patient. Involving the family in care is recognised as an opportunity to increase the family's and professionals' knowledge of how to care for the patient (Mackie et al, 2019). Since the caregivers are accustomed to the patient's usual behaviour and preferences, their knowledge can assist health professionals identify optimal approaches and plan the care of the patient (Mackie et al, 2019).
Information-sharing is one of the core-concepts in patient- and family-centred care approaches (Institute for Patient- and Family-Centered Care (IPFCC), 2017) and is widely associated with positive effects throughout a patient's illness and hospitalisation trajectory, and once the patient returns home (Ivarsson et al, 2011; Norlyk and Martinsen, 2013; Segaric and Hall, 2015; Mackie et al, 2019). Tailoring information to the needs of both the caregiver and the patient can further prepare and help them gain confidence in care (Mackie et al, 2019). Caregivers and patients gain skills and knowledge to manage a new reality when they are provided with the opportunity to learn through information-giving (Sun et al, 2017).
The study reported in this article explored informal caregivers' experiences during the period leading up to a patient's thoracotomy surgery at a local general hospital in Malta, during the postoperative phase in hospital and then at home following discharge. Specifically, and exclusively, the informal caregivers' personal reactions, needs and views about their experiences of being the caregiver in the patient's surgery trajectory were explored. Figure 1 shows the conceptual map of the study.
Method
Theoretical framework
The research study was guided by the patient- and family-centred care (PFCC) core-concepts of the IPFCC (2017).These include dignity and respect, information-sharing, participation and collaboration. The informal caregivers' reported experiences were interpreted in the context of the stress and coping theory of Lazarus and Folkman (1984). This theory has been used to guide research, which focuses on caregivers (MacKay and Pakenham, 2011; Oh, 2017).
Participant recruitment
The population chosen for the study were the caregivers of patients who had undergone a thoracotomy. An informal caregiver was identified as a person who had experienced and travelled through the entire trajectory of the patient's diagnosis, thoracotomy and discharge back to their home environment.
Ethics clearance was granted by the hospital where the study was conducted, as well as the University of Malta Research Ethics Committee. Intermediaries identified potential participants using a set of established criteria (see Figure 1). Contact details were gathered and the researcher contacted them 2 weeks after discharge, allowing the patient and their families enough time to settle down at home while not allowing much time for the participant's memory to start losing important details of their experience.
Recruitment followed convenience sampling, where participants are selected from the most readily available to participate in the study (Miles et al, 2014; Polit and Beck 2018). In this study, recruitment took place when the patient was to be discharged home. Interviews took place between October 2019 and January 2020, and the sample consisted of eight Maltese female caregivers.
Interviews
An interview schedule (Table 1) was compiled to gather demographic data and participants' experiences through open-ended questions based on a theoretical framework, previous literature related to the research question, expert advice from health professionals who had worked in the field of thoracic surgery for several years, and the researcher's own experience as a nurse in the field. The questions were piloted to estimate how long an interview would take, ensure that they were understood as intended and to provide an opportunity for the researcher to practise interview techniques, transcription and analysis. The face-to-face, one-to-one interviews were conducted with the caregivers of patients who had undergone a thoracotomy, with each lasting between 30 minutes and 1 hour.
Table 1. The interview schedule
| Interview question | Rationale behind the interview question |
|---|---|
| Demographic Information | The association between demographics and how the caregiver encounters the stress has been studied in the stress and coping theory and thus the researcher wanted to find out if in this particular scenario an association could be found |
| How involved do you find yourself in the care of named patient? | To see the involvement of the caregiver in the patient's care and to see if this factor affects how they cope when back home and any differences pre- and post-surgery |
| Are you finding any difficulties now that the patient is back home? | To look into any barriers the caregiver was experiencing with the patient back home, as well as factors that could help or hinder how the caregiver was experiencing this time with the patient |
| How did you learn about the patient's need for a thoracotomy?How was this taken by patient and yourself? | To look into how the caregiver experienced the diagnosis and the patient's need for surgery |
| What were you told regarding the patient's upcoming surgery?How were you involved when the procedure and hospital process was explained? | To explore communication and information giving with regard to the diagnosis and need for surgery, and how this affected both the patient and caregiver |
| How did you feel while waiting for the patient to return from theatre? | Although this aspect was not present in any of the studies reviewed, the authors' experience in the cardiothoracic unit indicated that this was an important point for the caregiver during the patient's hospitalisation. Thus, she found the need to look into the perceptions of the caregiver during this time |
| When the patient had returned from theatre was an in-depth explanation given about the procedure and what was the plan for the upcoming day? | To look into information and communication during this significant time in the caregiver's journey. This aspect was noted to be important throughout the studies reviewed (Ivarsson et al, 2011; Davis et al, 2014; Mackie et al, 2019; Sun et al, 2017) |
| How were the patient's pain levels immediately after surgery? Did they increase or decrease over the days they were in hospital? | To look into one of the aims of the research question, to find out whether the patient experienced pain and, if present, how it was managed. Furthermore, the perception of the caregiver would look into how, if pain was present, it affected them |
Did you have any concerns throughout the time the patient was in hospital?
|
The patient- and family-centred care (PFCC) was one of the main concepts that guided this research. Thus, this question enabled the researcher to determine the participants' experience throughout this time and, if the health professionals caring for the patient applied any of the core concepts |
| Did you feel the visiting hours were sufficient for you to spend time with the patient and ask questions or raise any concerns? Was information provided voluntarily by staff or did you have to ask for details or explanations? | To investigate the involvement of the caregivers during this time. This was an important aspect identified from the studies reviewed (Segaric and Hall 2015; Mackie et al, 2019; Schreuder et al, 2019) and a core concept of PFCC |
| How did you find out that the patient was to be discharged?How was the discharge explained to you?Did you understand at the time what was being explained? Was there anything else you realised you should have asked at this time? | The literature reviewed highlighted the importance of appropriate discharge planning and how this further helped the caregiver cope once the patient was discharged home. The question intended to look into how this took place and the involvement of the caregiver throughout the process |
| What do you think helped you during this experience? | To look at what helped the caregiver to cope throughout the experience and could further look into coping strategies of the caregiver during this time |
| If you had to advise caregivers going through a similar experience what would you tell them? | To look further into how the caregiver experienced this time and identify the main factors of importance to the individual throughout |
| Would you like to add anything? | The question was added to ensure that all important aspects of the experience that the individual had gone through had been looked into—not all experiences are alike and the caregiver can use this time to add on important details |
All participants expressed a preference for the interviews to take place in their own homes. The principles of confidentiality were emphasised throughout the data collection process and written consent was obtained before the start of the interviews. Participants were also informed regarding their right to withdraw from the study at any time. Confidentiality of both participants and patients was maintained through the use of pseudonyms in all the reporting and documentation.
Data analysis
Interviews were audio-recorded and transcribed verbatim, and content analysis was carried out. Data analysis was performed within a few weeks after the interviews to allow the researcher to recall important details that could better assist in understanding the emerging data. The categories and subcategories evolved through an inductive process for each data set. An example of the process of refining the findings is illustrated in Table 2.
Table 2. Example of content analysis and the process of refining the data
| Carer | Meaning unit | Summary of theme | Code | Subcategory | Category |
|---|---|---|---|---|---|
| Gina | I was finding it very difficult to handle him on my own. Luckily, I had a helper and this was a great help to me. But basically, if I had been on my own it would have been very (emphasises word) difficult! | Difficulty in taking care of her husband. Unable to cope on her own and needing additional help | Difficulty at home | Pain and symptoms post discharge | The struggles post discharge |
The researcher was fluent in both English and Maltese, so interviews that took place in the Maltese language were transcribed in Maltese. In order to include the relevant responses in the analysis these were translated into English and verified by a professional linguist. Lincoln and Guba's (1985) pillars for assuring the trustworthiness of qualitative research were addressed through peer debriefing, member checking and direct quotes from the original interviews.
Findings
Participants' demographic details are shown in Table 3. Analysis of the interviews revealed five themes. These were shock, coping pathways, the longest hour, walking out of hospital and the struggles post discharge. The themes are outlined below, together with their relation to the 3Cs—cancer, coping and challenges—that emerged from the data analysis. Table 4 illustrates data excerpts referring to each of the 3Cs.
Table 3. Demographic details of the participant
| Carer | Sex | Relation to patient | Age range (years) | Lives with patient? | Employment status |
|---|---|---|---|---|---|
| Katie | Female | Wife | 60–69 | Yes | Housewife |
| Simone | Female | Partner | 60–69 | Yes | Housewife |
| Lina | Female | Wife | 50–59 | Yes | Employed |
| Michelle | Female | Daughter | 50–59 | No | Housewife |
| Gabriella | Female | Wife | 60–69 | Yes | Pre-retirement leave |
| Elaine | Female | Wife | 40–49 | Yes | Housewife |
| Gina | Female | Wife | 70–79 | Yes | Housewife |
| Lydia | Female | Mother | 60–69 | Yes | Employed |
Table 4. Interview results denoting the 3Cs
| Cancer |
|---|
| Lina: ‘The word cancer is too ugly. My husband started telling me, “Is it true I have that?” Because he calls it a worm. He's uncomfortable with the actual word. Even to tell people it's miserable.’Gabriella: ‘At first, we had a big shock, since he had already passed through a similar experience [referring to cancer years previously] and that is what you think, even if you've never passed through a similar experience, let alone if you have passed through it.’ |
| Coping |
| Katie: ‘It is difficult and the decisions made must be discussed with our children, between ourselves … Communication is everything. You are nothing on your own …’Lina: ‘At home, I wouldn't mention anything and I would keep everything to myself, so I wouldn't bother them and mostly so I wouldn't bother him [referring to her husband].’Elaine: ‘He [referring to her husband] doesn't show me how he is feeling, so he doesn't worry me … I'm not showing him how worried I am, so he doesn't feel … now it's in God's hands … He keeps things to himself, so that I won't worry. This makes me angry because I do want to know certain things.’Lina: ‘We took turns, it's true, even the children didn't leave. The family said many prayers and offered mass for his recovery. And then the telephone does not stop ringing.’Michelle: ‘… I found a lot of support from my family, and everyone calls and gives you courage.’Michelle: ‘They explained everything … I felt prepared, because when you are involved before the process starts … I feel uncomfortable annoying them. However, when I had a problem I would go and ask them and they always helped me.’Katie: ‘They came and explained everything from beforehand, so we were aware of what was to be expected … and that gives you courage. The nurses wouldn't spend that much time next to us, just the time that they would take his blood pressure …’ |
| Challenges |
| Lina: ‘When the day of the surgery arrived, I felt really drained … Until he returned from surgery it was a very bad time for me [cries] and you wait …’Some participants sought information by asking the staff on the ward who were, however, uninformed about what was going on in the operating theatreMichelle: ‘The wait seemed like it would never end. I was agitated and would enter the ward to speak with the nurses, and ask, “is she ready from theatre yet?” And they would tell me they didn't know. Although I knew she was in good hands, you never know what could go wrong.’Katie: ‘He's still getting short of breath, sometimes he'll be lying down and he wakes up suddenly, and he's unable to lie flat so he gets up, goes downstairs and starts walking … and I wake up with him, so that I know what is going on … he then becomes agitated, and started to experience panic attacks.’Michelle: ‘It's difficult. I still have children who live at home and it's difficult to go to visit her. After the operation it was very, very difficult for her, even to get up and out of bed, and so she couldn't manage on her own, so I used to visit and do a lot of the work myself. I found it difficult.’Elaine: ‘I am with him 24/7 even at night. I'm constantly worried about him. I wake up at night and ask him if he needs something, “Do you need that?” Before I used to do things for him because I am the type that is always focused on them [referring to her husband and son], but after the operation more so.’Gabriella: ‘After the operation the issue is that he can't drive, so I need to drive wherever we're going, I'm on leave off work at the moment. If I hadn't been, it would have been a problem since he still needs help at the moment.’ |
Shock
Participants referred to the shock they had felt on finding out their loved ones had or may have lung cancer. They related how one of the most frightening moments in the caregiver's journey is the moment when they first hear the word ‘cancer’ and how the diagnosis of cancer was emotionally taxing. All participants stated that the diagnosis was shocking because they perceived their loved ones to be healthy and the news shocked both the patient and the family.
‘You're taken aback. The whole family is shocked … and when they tell you it is cancer (emphasis on word) more so.’
Katie
Coping pathways
Several strategies were adopted by participants. Sharing the experience with other family members by accepting help and support was the most common strategy. When asked what had helped them throughout this journey, nearly all participants mentioned the support of their friends and family. Additionally, spirituality and religious beliefs also provided courage and security to both the patient and their loved ones as they experienced difficult times.
Another common coping mechanism was ‘keeping all emotions bottled up’. The constant worrying about the situation, the surgery and the upcoming results led several participants to keep their thoughts and feelings suppressed. Besides being a coping mechanism, this was also adopted to protect their loved ones from additional stress and sadness. Not expressing one's feelings, however, led to irritability and distress, as well as feelings of worry and frustration.
The data revealed that when the caregiver and the patient were provided with essential information and adequate explanation regarding the importance of the upcoming surgery, they were able to understand how the surgery would help the overall health of the patient and thus coped better. The words of one participant capture the value of good communication and information-giving to enable coping:
‘I was happy in a way that this surgeon was doing it ‘cos he's a good surgeon … He was really happy with the surgeon because he talked to him so much and convinced him that he was going to be fine! … The way he talked to us convinced me that he [the patient] was in good hands.’
Gina
The longest hour
All participants recounted unpleasant experiences pertaining to the time they had to wait for their loved ones to return from surgery. Several participants expressed how they had felt that the ‘wait would never end’ and a loss of the concept of time. Family members described this waiting period as a time of anguish because they were left in the dark regarding what was occurring.
An additional period of stress was the time between the surgeon speaking to the families once the operation had been completed, and the wait for the patient to actually return to the ward from theatre. Although briefings from the surgeon offered reassurance that the worst had passed, it was not until the family members were able to see with their own eyes, to visit the patient and briefly speak to them that they experienced a sense of relief.
Walking out of hospital
A recurring topic that was noted within this theme was the need for support, information and reassurance. Most participants were disappointed by the lack of information given directly to them and confirmed that all information that reached them as caregivers was channelled through the patient. Participants said that, at times, they needed to pro-actively approach nurses to ask for advice or information, that information was not being provided to them unless they actively sought it themselves. Some participants explained that they did not wish to bother the ward staff since they always looked so busy. They also justified the lack of interaction between the staff and themselves (while the patient was still in hospital) by stating that ward rounds took place in the morning before visiting hours.
Some of the caregivers stated how pre-operative information had been provided in detail the day before surgery and how they were encouraged to take part in this information session. The lack of postoperative information and discharge preparation resulted in poor experiences and increased levels of distress.
A number of participants indicated that, although discharge advice had not been given directly to them, even on discharge, throughout the time that the patient was in hospital, bits of information and advice had been forthcoming. This can be viewed as a positive approach since it allows for a gradual transition and being provided with a lot of information at the last minute may mean that many important aspects are forgotten. However, the lack of standardisation in the information provided resulted in some participants receiving less information and others admitting that little to no information had been provided before the patient had left hospital.
The recollection of one carer's discharge experience captures the essence of the responses of participants overall.
‘They did not tell us anything at that time, the consultant went and discharged him … they told him to continue his breathing exercises and not to drive. They had told us these things in the pre-op and he knows that he cannot do certain things. That was all we were told.’
Lina
The struggles post-discharge
Participants identified pain, shortness of breath and persistent cough as being the issues of most concern after thoracotomy both in hospital and at home. These are common symptoms in patients who have undergone thoracic surgery (Poghosyan et al, 2013; Sun et al, 2018).
Several caregivers stated that the patient had been in pain when they returned home. The pain was more intense when patients coughed or sneezed. However, the patient had been discharged with pain relief medication only for mild to moderate pain. Additional pain relief was necessary for several of the patients and prescribed on request by a doctor about 1 week after the patient had been discharged.
Several participants explained that, due to the pain or shortness of breath, the patient was having trouble sleeping through the night. The greatest challenge for the caregivers was watching their loved one's experience certain symptoms over which they had no control, causing feelings of helplessness.
The new responsibility for the patient's recovery, coupled with inadequate resources, posed an immense challenge too and jeopardised the confidence of the caregiver in their ability to care for their loved ones. Participants shared how they watched constantly over their loved ones and made sure that they were available for them at all times. They took on certain activities that had previously been undertaken by the patient, such as heavy lifting, feeding their animals and looking after the garden. Several participants confessed to never leaving the house and staying awake at night so as not to miss being able to provide help, if needed. In essence, the participants' new role as a caregiver was one that was fraught with many types of challenges.
The experience of the eldest participant captures the gist of the experience described by everyone:
‘I was finding it very difficult to handle him on my own … I need to do other things round the house. I needed to shop, I needed to cook, feed him … the beginning was difficult, not that he is a difficult man but he was in pain, and he was coughing all night … Obviously, I'm not young so I spent 3 days not sleeping well.’
Gina
Discussion
Lazarus and Folkman's (1984) theory of stress and coping guided the understanding of how the caregivers experienced the 3Cs, cancer, coping and challenges. Table 5 shows how the stress and coping theory aided the study and analysis of the results in relation to the theory.
Table 5. The stress and coping theory and the results of the study in accordance to the theory
| What the theory proposes and the literature has suggested |
|---|
|
| What this study confirmed and added to knowledge |
|
A systematic review carried by Vrinten et al (2017) showed how the fear of cancer stemmed from a perspective that conceptualised it as an ‘unpredictable and indestructible enemy’. In turn, this fear may negatively affect emotional wellbeing, reduce quality of life and increase psychological distress for both the patient and their family (Sklenarova et al, 2015; Kim et al, 2016). The findings of this study resonate with the relevant literature. The theory of Lazarus and Folkman (1987) informs the way in which a (stressor) situation is interpreted and dealt with, and takes into account various factors, including an individual's characteristics, their values, beliefs and culture. This highlights the importance of communication between staff, patients and caregivers in view of exploring one's characteristics, values, beliefs and culture as a prerequisite to being able to address one's needs accordingly.
Being provided with sufficient information in an understandable manner helped build trust and reduced anxiety for both patients and caregivers in this study. The literature widely supports the notion that, when information is appropriately given to both the patient and caregiver, this has a favourable impact on the stress levels of both (Davis et al, 2014; Grondin et al, 2014; Segaric and Hall, 2015, Sun et al, 2017; Mackie et al, 2019). Furthermore, Lazarus and Folkman's (1984) theory acknowledges the association between lower stress levels, healthier coping mechanisms and adjusting better to managing living with the stressor. Against this backdrop, the importance of effective information-giving through optimal communication cannot be overemphasised. Tailoring information to patients' and family members' health literacy levels will help increase understanding and result in a more meaningful participation in care (Mackie et al, 2019).
A lack of information may cause the transition of care from the hospital to the home environment to be fragmented and may jeopardise the continuity of care, compromising the quality of care caregivers can provide when the patient returns home (Backman and Cho-Young, 2019; Mackie et al, 2019). These authors further noted how misinterpretation of any information provided can also lead to serious adverse events.
In this study, information was obtained by participants (the caregivers) from the patients, who were passing on information they had themselves received from health professionals. However, it is important to realise that factors such as pain and anxiety experienced by patients at certain times may result in a misunderstanding of what is being said to patients and caregivers by the health professionals (Ivarsson et al, 2011; Derry et al, 2019).
This study also showed that patients may feel protective towards their caregiver and, as a result, withhold certain information from their loved ones. These notes of caution accentuate the importance of communication between caregivers and health professionals within the constraints of patient confidentiality. Health professionals should encourage ongoing conversation while the patient is in hospital so the caregivers can learn more about what they may need to do at home and in turn ask for information about this.
Participants' recognition that having social support enabled them to manage stress throughout this period is congruent with the existing evidence identifying that social support as a predictor of coping (Nguyen et al, 2020). Social support has been associated with the enhanced physical, functional, emotional and social qualities of life of caregivers (Banik et al, 2017). These findings, therefore, call for further investment to extend the availability of both formal and informal social support on discharge. The efforts of health professionals may include guiding and encouraging caregivers to search, evaluate, select and gain access to existent social structures and resources.
In the literature, taking up the new caregiving role was found to be a challenging experience because it entailed disruption to the lives and living routines of caregivers, therefore finding ways of coping with this was crucial (Mackay and Pakenham, 2011). The literature repeatedly identifies this, as do the findings of this study. The disruption to life leads to feelings of frustration that may cause psychological distress, a decrease in social interactions, including participating in events, and may also affect family dynamics (Oh, 2017; Sun et al, 2018). The consequences of such disruption have been highlighted in this study, including frustration and agitation.
Despite their willingness and commitment to address the perceived ethical obligations to care for the patient, caregivers struggled to cope throughout the period investigated in this study, as they tried to find a balance between caring for the patient and living their own life day to day (Norlyk and Martinsen, 2013; Solomi and Casiday, 2017). This highlights the need for health professionals to assist caregivers by offering support and providing information. The avenues to address the amounts of, and need for, support and the way information is given, are not clear and consistent, because there will be variations in individual caregivers' abilities, needs and demands for coping with the challenging experience of caring for their loved one. Therefore, it is important to tailor information-giving and support to the individual needs of caregivers. Care plans need to be adjusted and fine-tuned by health professionals for individual caregivers in an effort to balance realistic efforts with optimal outcomes to avoid giving caregivers unreaslistic expectations.
Study limitations and future directions
The period to carry out the research study was limited to the duration of an academic programme of study the researcher was undertaking. This limitation may have jeopardised further or wider data collection and time to analyse the data. Since most of the caregivers were the patients' spouses, there is a possibility that the physical and emotional closeness may have given the caregivers a greater sense of responsibility towards them. Participants with young children and from a younger age group may have appraised the stressors identified in the study differently, expressed different needs and adopted different coping mechanisms. Extrapolating the findings to other populations should therefore be done with caution.
The education level and financial position of caregivers were not investigated in this study, which again is an aspect that could influence the experience and the way caregivers cope. It should also be noted that, bar one, all the patients were male and that all the caregivers were female. This may limit further the generalisability of the findings. Previous studies investigating similar research questions showed that this was a common issue, with the majority of caregivers being female (Ivarsson et al, 2011; Norlyk and Martinsen, 2013; Segaric and Hall, 2015; Sun et al, 2017; Mackie et al, 2019; Schreuder et al, 2019). Further research looking at the perspectives of a larger and more diverse sample is indicated.
Conclusion
This study outlined the experience of caregivers during a period their loved ones were undergoing a thoracotomy. In view of the findings—which suggest that informal carers struggle to cope with the post-discharge reality because they feel inadequately prepared, informed and equipped—the need for increased attention towards informal carers is indicated, to offer them information and support.
A gap in the health professionals' presence, communication, information-giving and post-discharge contact was identified. This needs to be addressed, to ensure that caregivers are better informed and empowered to participate in the care of their loved ones. The wellbeing of the caregiver can thus be enhanced, which could subsequently help the care and support of the patient concerned. Such an understanding of the pivotal role played by the informal caregiver could lead health professionals to consider issues, such as the health professional's presence, communication, information-giving and post-discharge contact to optimise the trajectory of the caregiver's and patient's thoracotomy experience. The revealed gap merits further research and investment in this regard.
KEY POINTS
- Nurses need to assess, identify, address and evaluate the needs of informal carers, in addition to the needs of patients
- Informal carers play an important role in the post-discharge experience of patients who undergo thoracotomy surgery, but struggle to cope because they feel inadequately prepared, informed and equipped
- Informal carers of patients who undergo thoracotomy operation experience feelings of fear and distress because of the association of the operation with a diagnosis of cancer
- Information and support for informal carers post discharge does not match the quality and quantity of care provided during the pre-operative period and during hospitalisation
- Further research into the experience of informal carers is indicated to enhance the experience for both informal carers and patients
CPD reflective questions
- Think about the patients in your care. Do they have informal carers? Which family members are their informal carer(s)?
- Consider your team and the wider hospital culture within which you work. Does the organisation's culture encourage you to take into account the needs of informal carer(s) and offer them information and support as standard?
- What resources are, or can be made, available to provide support and to inform informal carers adequately post discharge?