Introduction

In many countries, family caregivers play an important role in caring for patients with advanced cancer [1, 2]. They have to thus face the psychological demands of care due to distress, but also physical demands such as housework, and basic medical care [2, 3]. Caregiving is generally unplanned and most caregivers must adapt their behaviour, modify their role and help according to the evolution of the disease, the health state and feelings of the patient [4].

To be able to support the patients, caregivers are obliged to build their own skills [5]. In the field of cancer, Schumacher et al. developed a conceptual framework of the family caregiving skill, taking for context the situation of patients treated with chemotherapy. The authors identified nine dimensions of caregiving (monitoring, interpreting, making decisions, taking actions, making adjustments, accessing resources, providing hands-on care, working together with the ill person and negotiating the health care system) and confirmed that caregivers had to be regarded as involved in a learning process during the disease trajectory [4]. In their work, the authors did not develop a grounded study. However, other authors consider that to become competent, individuals must draw on and mobilise an adequate combination of resources in a particular context [6,7,8]. These resources can be personal resources such as 1—theoretical, environmental and procedural knowledge; 2—operational, cognitive and relational know-how and 3—emotional and physiological resources. They can also be external resources such as the ability to mobilise a relational network, to manage time and finances, and “schemes” which can be compared to a mode of action and/or thought, or to a logic that is built on experience [7].

At the moment, to our knowledge, no studies have provided data on the skills developed by caregivers of patients with advanced cancer and the associated resources mobilised. Published studies either analyse the concept of the “sense of skills” [9, 10] or focus on specific skills [9,10,11], and when a larger analysis of skills was carried out, the question of resources was not identified [12]. Moreover, these studies focused on the whole population of caregivers and none concerned the field of oncology. Thus, it seems relevant to us to identify all the skills developed by caregivers and the type of resources required in caregiving. We chose to do it in a specific population of caregivers and patients with colon cancer. Indeed, family caregivers are generally considered as a whole and include partners and relatives. Nevertheless, partners have been shown to be the primary informal caregivers [13,14,15,16]. Focusing on colon cancer is important because of the increased incidence of this disease in western countries [13]. Compared with other digestive or non-digestive tumour locations, it is associated with a balanced sex ratio [14] and can last for several years with several lines of treatment associated with various side effects [15]. In this context, the aim of this work was to conduct a qualitative study among partners of patients with colon cancer to identify the resources mobilised and the skills they developed during the treatment of this disease.

Methods

Design

The study used a cross-sectional qualitative design based on individual interviews and a focus group. The aim of the interviews was to understand the impact of the disease on the everyday life of caregivers and to identify the types of resources they mobilised and the skills they developed. The aim of the focus group was to confirm findings from the interviews, but also to add new information thanks to the interactions between caregivers in similar situations.

Settings and recruitment

Interviews

Caregivers were recruited from patients treated in one of the three following hospitals of the Burgundy region (France): Dijon University Hospital, the Cancer Center and Chalon-sur-Saone Hospital. They were chosen because of their potential differences in terms of patients’ profiles. We included patients who were (1) able to understand written and spoken French, (2) had a diagnosis of stage 3 or 4 and had been treated in one of the three centres with adjuvant or first-line palliative chemotherapy and (3) agreed to his/her partner participating in the study. Patients were not included if (1) they had a previous history of cancer, (2) they were being treated for another cancer at the time of the study and (3) they had severe comorbidities or disease-generating disabilities. Partners were included if (1) they were able to understand written and spoken French, (2) they were living with the patient at home and (3) they agreed to participate in the study. Caregivers with comorbidities or disease-generating disabilities were not included because it could modify their perception of the caregiving work.

The study was presented to the patient/partner dyad by the clinician during a medical consultation. Eligible patients were those who had undergone their first-line chemotherapy. Our idea was to include “naive” caregivers to understand the changes generated by the disease and to identify the skills developed to cope with this new situation. After acceptance of the dyad, the partner was contacted by phone by the sociologist in order to fix the date and the place for the interview. Caregivers were purposely recruited to obtain various profiles in terms of age, gender, place of residence, socio-economic status and patient’s cancer stage and until no new participants were thought to bring new relevant information.

Focus group

Following the interviews, six different caregivers for patients treated either at the Dijon University hospital or at the Cancer Centre were recruited. The decision not to include the Chalon-sur-Saone Centre was justified by the fact that we had to spare caregivers from a long journey from their home to Dijon. Included caregivers were partners of patients who experienced several lines of chemotherapy. By including more experienced caregivers with a longer history of the disease, our goal was to obtain feedback from participants on the findings of the interview and to add new information given the assumption that caregiving work can be considered a learning process. The suggestion to participate to the focus group followed a procedure similar to the individual interviews.

For the interview and the focus group, ethical approval was obtained from the Person Protection Committee (CPP). In compliance with the French law, oral consent consisted of approval from each participant (patient and caregiver). No written consent was required as no biomedical intervention was performed.

Procedure

Interviews

One flexible, face-to-face semi-structured interview was conducted with each of the caregivers. The interview guide, which had not previously been tested, was prepared by a male doctoral student in sociology, managed by a female senior sociologist. Both had strong experience in the field of health and care. The interviews were conducted by the junior sociologist alone, in most cases at the caregiver’s home without the presence of the patient. Before each interview, data concerning the general health state of the patient at the time of the consultation (WHO Performance Status), the date of diagnosis and the tumour stage and data concerning the chemotherapy and the caregiver (occupation, academic level) were collected and provided to the sociologist to help him understand the context. Each interview was audio-recorded and lasted between 1 and 2 h. The sociologist also took notes during the interviews. Four main open-ended questions associated with relaunching questions were asked during the interview (Appendix 1). After the analysis of 20 interviews, it was decided that data saturation had been reached.

Focus group

A neutral but conformable place was found at the Faculty of Medicine of Dijon. The focus group was led by the senior sociologist. The junior sociologist took a back seat, took notes and, when necessary, asked additional questions and tested the consistency of the results from the verbatim transcripts of the interviews to be sure that the participants’ own meanings were represented and not curtailed by the sociologist’s knowledge. Because the focus group was video-recorded, a computer engineer was in charge of managing the camera. He was positioned in the back of the room and never changed his place during the discussion so that his presence went unnoticed. The aim of the video-recording was to facilitate the analysis of the discussions and allow the capture of nonverbal communication of the participants. The interview guide for the focus group centred on the resources and skills identified in the verbatim transcripts of the individual interviews (Appendix 2, Fig. 1). None of the caregivers knew either the junior or the senior sociologist before the focus group meeting. Before the start of the discussion, both researchers presented themselves and the objectives of the focus group. The only data the sociologists had concerning the caregivers were their name, gender, age, occupation, place of residence, cancer stage of their partner and date of the first treatment with chemotherapy.

Data analysis

Interviews

All interviews were transcribed in their entirety. They were subsequently coded using a thematic analysis. This type of analysis aims to identify and categorise the different themes occurring in the body of a text in a cross-sectional manner. Each theme was then considered as a meaningful independent unit of the discursive language. After a careful first reading of the text of each participant, the different themes that arose during the interview were recorded and classified as major themes and secondary themes. Two types of triangulation were used: first, multidisciplinary triangulation with the two sociologists and the public health researcher coordinating the study was performed with the aim to identify the types of resources and skills that caregivers employed in everyday life activities. Second, another triangulation was performed to allow analyses from the first triangulation to be checked by the participants of the focus group. Finally, four successive meetings were organised with the senior sociologist and two other researchers (the coordinator of the study and an epidemiologist, specialised in questions for quality of life questionnaire) to precisely formulate the items representing these resources and skills. Discussion lasted until consensus was reached concerning the choice of dimension and the meaning given to each word.

Focus group

The focus group interview was analysed by the research team to check the findings from the individual interviews. Two meetings were organised to complete and modify the list of items identified after the analysis of the transcripts of the interviews. No findings were modified but additional information was included.

Results

Population

Between June 10, 2014 and June 1, 2015, 20 caregivers accepted to participate in the individual interviews. Those who refused did so because of the absence of time and difficulty to talk about the disease. Between January 1 and May 31, 2016, six caregivers accepted to participate in the focus group. The reasons for declining the invitation were as follows: concerns of privacy, distance to the hospital, planned holiday or surgical intervention. The characteristics of the patients and their caregivers are described in Table 1.

Table 1 Characteristics of caregivers and patients (interviews and focus group)
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Findings

Skills implemented by the partners

The results showed that the partners had adopted skills in the following domains of everyday life. In the domain of social relationships, they communicate, i.e., they express their thoughts and feelings. Communication can take verbal or nonverbal forms [16]: the partners could decide to speak about the disease and its treatment, but they could also adopt other attitudes such as not passing on information, or filtering information, or hiding or simplifying it. The partners could also choose to avoid speaking about or focus on certain subjects of everyday life or let the patient speak. We found all or part of these forms of communication with regard to close relatives and friends, acquaintances, colleagues and employers. With the healthcare professionals, the partners indicated that they themselves sometimes asked questions to the doctor who followed the patient, asking for explanations, or they could avoid asking questions. They could also encourage the patient to speak directly to the doctor or even let the patient manage communication with him without interfering at all.

In the domain of health, several skills were implemented: partners could let the patient carry out certain tasks (getting dressed or care-related tasks); they could help the patients do these tasks or do the tasks themselves or delegate the tasks to healthcare professionals who came to their home. Two other skills were also identified: the management of disease follow-up and treatment (e.g. preparation of medical treatments, going to the pharmacy) and ensuring the mental well-being of the patient (e.g. speaking to the patient about positive subjects, reassuring, trying to organise projects they could do together, providing encouragement to take part in activities together and protecting him/her from the hassle of everyday life).

In the domestic dimension, the partners declared that they had to manage new domestic tasks (e.g. administrative tasks, home organisation and meal preparation). In the organisational dimension, the interviews showed that the partners had to modify the organisation of their own professional and personal lives to devote a part of their time to the patient and to preserve their life as a couple. Moreover, although time was an important component, availability was also frequently mentioned by the partners because the illness was always on their mind. Finally, in the emotional and well-being dimension, the partners had to bring into play several skills, the first corresponding to coping with their emotions, by expressing them, by speaking about them or by hiding them. The interviews showed that the partners attempted to preserve their well-being by setting aside time for themselves, without the patient or the disease (time devoted to leisure activities, to rest, to their professional life).

The skills are summarised in Table 2 and illustrated by several transcripts from the individual interviews.

Table 2 Illustrations of the skills developed by partners from transcripts of the individual interviews and the focus group meetings
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Resources brought into play

Both the individual and focus group interviews showed that the skills implemented by the partners were “singular constructs” (i.e. the construction of skills is partner-dependent and highly linked to their life trajectory), dependant on if resources may have been missing and insufficient (Table 3). In addition, partners may have had these resources but not mobilised them.

Table 3 Potential, present or missing resources: illustration from the transcripts of individual interviews
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Personal resources included not only the partners’ theoretical knowledge of the disease and its treatment, and the information they had on the subject, but also the representations that they had of the disease, of their own emotions and of their couple. Other personal resources such as technical or practical know-how seemed to play an important role, but only to implement skills in the health and domestic dimensions. External resources included tangible elements such as the time available to the caregiver, the available financial resources or the existence of outside care services, and material means, as well as recourse to religion. The patients themselves, healthcare professionals and close friends and family were also important external resources the partner could count on if necessary. External resources also included more intangible elements, such as the experience and habits of the couple. These resources were mobilised in different ways depending on the dimension concerned. For example, for the domestic, health and organisational dimensions, tangible external resources were mobilised to a greater extent than was the case for the social relationship dimension. Finally, partners had to implement schemes allowing them to organise and structure their action in a given situation. The interviews showed that above all, they had to think about how to communicate depending on their level of understanding of information related to the disease and its treatment, to develop strategies on how to do things or how to get the patient to do things for the good of the patient and to improve their aptitude to anticipate and to project into the future.

Discussion

Today, the important role played by informal caregivers, and notably partners of patients, in the healthcare system has been clearly established, whatever the medical specialty concerned [17]. In this context, the aim of this study was to identify in a pragmatic manner the skills developed by caregivers of patients treated for colon cancer and the associated mobilised resources.

There are relatively few data on the subject of skills and the associated resources. Most studies in oncology have investigated the objective and subjective burden perceived by caregivers [2, 18,19,20,21,22,23,24,25,26,27]. The few studies that have concerned the concept of skills were carried out in other medical fields [9,10,11,12, 28,29,30] and with no pre-established conceptual framework. These studies concerned either specific skills, such as communication [10], or skills related to the physical well-being of the patient with regard to nursing care or technical care [9, 11, 12]. The domains of emotion and social relationships [12] have also been identified. The results of our study, which did not aim to target any type of skill in particular, are in keeping with these studies. With regard to the concept, the study closest to ours was that done by Schumacher et al., above all because it concerned the therapeutic management of cancer. They distinguished between nine levels of skills: “monitoring, interpreting, making decisions, taking action, adjusting to changing needs, comforting with hands-on care (direct care), accessing resources, working with the ill person and negotiating the health care system” [4]. Our results spontaneously correspond to these levels, even though the dimension “negotiating the health care system” was rarely raised in our study.

However, our study brought to light a new dimension as we tackled the concept of resources that were mobilised to implement these skills and we identified Weberian ideal types [31]. Moreover, our study was conducted within the confines of a pre-established conceptual framework [7]. This was important as it allowed us to escape from a purely factual analysis. The fact that we conducted our study in the framework described by G Le Boterf explains why the definition given by Schmacher et al. of skills, such as the “ability to engage effectively and smoothly” in the nine processes, could be challenged [4].

We could criticise the fact to have studied the only context of colon cancer. But the sex ratio in this disease allowing us to include caregivers of both sexes and the relatively long life expectancy of patients place the partner in a process of skill acquisition, which is not possible for some other cancers.

Several limits need to be pointed out. In this study, patients from different care centres were included to take into account various profiles of patients and partners. However, in the focus group, there was a bias because there was only one male partner. One could also criticise the fact that caregivers of patients with a more advanced stage of cancer were included in the focus group. However, even at this stage, caregivers are still in a learning process, thus confirming once again the idea that the caregiver function necessarily changes to adapt to an evolving situation as shown by Schumacher et al. [4].

The major difficulty associated with this study was our ability to take into account elements of information, often tacit, in the discourse of the partners. We think that, despite the long list of concrete, tangible and observable skills we identified, the emotional dimension was transversal and implicated in all of the dimensions: the partners expressed their worries and their emotions (such as being afraid to leave the patient alone, fear of the disease, of death, of absence, the fear of making a mistake, the fact of not wanting to continue, of thinking about something else, of denying themselves things). Moreover, certain resources could not be captured directly, such as the story of the couple, which is a resource in itself and implicit in the different items. It gives the partner a specific place in the familial and social organisation and a role potentially different compared to other caregivers.

The partners thus let the patient do various things, because they knew that he/she could do it. This resource could not be captured because the study concerned partners whose relationship with the patient was the normal relationship of a couple.

A skill consists in the mobilisation of a set of various resources depending on the complexity of the task to accomplish. However, the skill is always implemented in different situations, meaning that it involves a process either of adaptation or of transfer from one situation of life to another. This process of adaptation takes time. This study was not able to follow the process for each particular partner because the interviews were conducted at a given moment and not repeated over time. Repeating interviews over time would have allowed us to show the adaptation and learning processes necessary for the construction of skills.

Conclusion

There are no models of caregiving. This study promotes the skills and resources mobilised by the partners to help the patients treated for a cancer. These results have to be considered as the first step of a more ambitious study aiming at constructing a questionnaire which could be used to identify vulnerable partners and could be generalised to other cancer locations. Indeed, the identification of the skills and associated resources could allow healthcare professionals better identify and understand the difficulties met by partners in taking care of patients. This could enable them to offer appropriate support to help the caregivers.