3.2.1. Caregiving Is a Female Role

This theme emerged from the characteristics of the almost exclusively female sample and the interviewers’ and observers’ field notes (FNs).

From the point of view of responsibility, in most of the interviews analyzed, it was possible to distinguish a recurring pattern in which, in the presence of a sick family member, it was “the woman who tended to take on more responsibility for her relative” (FN 1a) and who was “defined by the family as the main caregiver” (FN 4).

This research showed that “women assumed the majority of caring responsibilities” (FN 3), “reflecting traditional gender roles in which women were more likely to perform domestic and caring tasks” (FN 2a). This theme was presented in the following two sub-themes:

Women caregivers of older relatives “frequently suffered from social isolation” (FN 2b), as their constant dedication to caring reduced their time available for social and recreational activities. This aspect led “many of them to feel lonely and unsupported, with a negative impact on their mental well-being and quality of life” (FN 3). In addition, “pro-longed caregiving could have serious consequences for women’s physical health” (FN 1b). Chronic stress, combined with a lack of time to care for themselves, could increase the risk of developing depression, anxiety, and physical problems such as chronic pain or cardiovascular disorders. “These factors combined accentuated the emotional and physical burden women bear as caregivers.” (FN 5a).

(ii) 

Professional and Economic Consequences of Female Caregiving

Women who were primary caregivers for family members with chronic illnesses experienced “a significant economic impact as they often reduced paid work hours” (FN 5b), took part-time jobs, or left the labor market, and “faced occupational penalties due to the need to balance work and caregiving” (FN 6), which limited career advancement opportunities and increased the risk of occupational stagnation.

3.2.2. The Caregivers Experience an ‘Indirect’ Illness

When a person with a chronic/oncological disease was present within a family unit, the whole family was affected and, in a certain sense, became “sick”. The elements that most affected the family carers’ experience were the time of illness, its duration, and its speed of progression. In this second theme, three sub-themes stood out:

Caregivers described the illness as a “journey” (15.19) which they set out on together, often marked by moments “of pain, despair and weariness” (3.6), but also by “acts of care, love, dedication” (8.10). In some cases, there was a constant emotional impact and sharing of emotions, so much so that the patient and caregiver experienced “the same fears, the same labors, the same apprehensions…” (9.37). The care narratives collected from the interviews revealed aspects that often remain in the shadows: “[I stayed by his side] right up to the end, and I could not bathe him anymore because it had become that I could not move him” (24.29).

(ii) 

The close link between sweet memories and some regrets

The speed of deterioration left people overwhelmed and disoriented, sometimes depriving the forming dyad (the patient and the caregiver) of meaningful experiences, which left a feeling of regret: “It was swift; we did not even have time to go for a ride to the beach anymore” (1.14). In other cases, the family member brought back a “sweet” memory of their last holiday: “The summer before I had taken him to the island of Giglio because the doctor had told me: It will be the last holiday he can take… moving around” (10.16).

(iii) 

Awareness of the caregiver

Family members also experienced their own path of awareness, first of all with regard to their loved one’s illness, but also with regard to its impact on daily life in terms of care and changes in family life. In some cases, change was interpreted as imposed (“it is difficult to accept the illness, especially having to change for this reason” (5.7)), and in others, resilience prevailed and the caregiver understood that the situation must be managed and that there was no need “to feel sorry for oneself or to despair” (11.10) and one had to move on.

3.2.3. The Family Changes

We found that the diagnosis of a chronic/oncological disease not only changed the life of the individual who fell ill but affected and changed the everyday life of the whole family, transforming the family’s identity. Three sub-themes were identified:

The impact of the illness on the family and the caregiver, in particular, was closely linked to the evolution of the illness. There was a practical and organizational impact (“there was a person to take care of” (5.8)) and spaces in the home were reorganized to “make room for the medical equipment” (8.10) needed to manage the sick person. The economic impact was also felt: “the nappies they give are not enough” (6.43) and “the care allowance, which is fine” (1.20) only covered one-third of the care costs. When the illness went on for a long time, significant emotional repercussions emerged in the caregiver, to the point where it manifested physical and emotional exhaustion of the family, well described in this quote:

“Both my daughter and I were exhausted. (…). There were times when I would bang my head against the cupboard, I would go into crisis, I could not understand him, I could not understand his needs anymore because he did not talk anymore” (1.31).

With the increase in care duration, in addition to the physical commitment, the role of support for the sick person and the other relatives became increasingly critical, with consequent significant emotional fatigue; as one interviewee said, they were tired of “putting and always having a smile on my face” (3.78).

(ii) 

The transformation of roles

Most of the interviews highlighted the change in roles within the family. The illness required a reorganization of the family context. Sometimes, the illness has led to a reversal of roles; as one daughter stated: “I have become my mum’s mum” (9.27). These significant changes led to a considerable increase in caregivers’ responsibilities and in care-related stress. The need to be close to the sick person led to some caregivers moving “totally to live with mum” (5.18).

(iii) 

Relationships within the family

In the interviews analyzed, almost all families were united in caring for the sick person. People rallied around the patient and intensified their interpersonal relationships in order to cope with the difficult situation: “Things between us have changed in the sense that we have tightened up more, we have united to cope with the situation and to support dad (…)” (2.26). In some cases, the caregivers tended to enter a process whereby they did not have to ask anything of anyone and therefore tried to organize themselves to manage everything autonomously: “I’ve always had that thing of having to protect someone” (20.28). Family cohesion was demonstrated in the common choices made and in the improvement of communication within the family unit. Only in a few cases did the illness of a family member generate conflicts between family members.

3.2.4. Family Support Needs

The reorganization of the family structure led to interaction with different support systems outside the family context, including health, social, and friendship networks; extended families; and work and school environments. The theme of “support” emerged in most of the interviews, bringing out strengths and weaknesses among families, friends and professional figures. This theme was divided into two sub-themes:

Social support proved to be an essential glue for the families’ stability, which was undermined by the illness; friends “were always there” (3.68) and neighbors became so familiar that the sick person called them “sons and grandchildren” (17.33). Work support turned out to be a key element for greater balance in living closer to their loved ones during their illness for many interviewees, from “much easier shifts” (17.32) to “hourly flexibility, maximum freedom to manage me” (1.35). Associative support was also helpful, e.g., the “family and Alzheimer’s group, which provided staff ’to stay with them [the patients] free of charge’” (6.6).

(ii) 

Relations with professionals

In the various interviews, strengths and weaknesses in the relationships between the interviewed family members and health professionals emerged. The “closeness” of the health professionals to the family was felt, to the extent that participants said that “People who put themselves in the place of […] who are part of the family” (4.80). The healthcare team became a “point of reference” (13.20) and, by making the sick person feet good, indirectly, “it also makes the family feel good (…)” (2.51). When a strong relationship of trust was established, the family member felt “in a barrel of iron” (15.38), providing great reassurance.

There was no lack of relationship difficulties, understood as “coldness” in interpersonal relations (12.28), or doubtful recognition of the competence needed “to assist such a complex person” (1.23). An aspect eliciting very strong opinions was the direct communication of health professionals with patients about their condition; in several interventions, family members expressed the need for “delicacy” and “sensitivity” (18.17) on the part of health professionals, arguing the right to “hear first from a family member and then, with the right tact tell them…” (14.35) to determine whether or not the sick person was ready to listen.

Several interviewees reported how the psychological support of the family unit was incisive (“We all started a path together with a psychotherapist” (17.20)) for them to be able to process and face the new experience of illness.

3.2.5. Caregivers’ Resources

Interviewees described that caring for a family member with a chronic or progressive disease often involved having to sacrifice one’s physical, mental, and emotional well-being. Resources were also utilized, linked to the capacity for self-care, which became limited when there was a lack of self-care. Two sub-themes were identified in this theme:

Among the activities that family members undertook while caring for the sick person were sporting activities: “I used to take my volleyball bag and go” (20.45) and “My mother joined walking groups, and now you see her walking in the mountains” (17.48). These activities were undertaken to find an environment that would allow them “to unplug a bit mentally” (11.46).

There was an awareness that dedicating oneself to one’s family by sharing moments of leisure and relaxation was essential to preserve the well-being within one’s household: “You have to detach yourself from her for a moment because your family needs you because you need her mentally” (5.42).

In some cases, it was considered essential for the carer to be able to balance their well-being with the needs of the sick person: “You are close to him, lying down next to him… that is enough, even if you play with the tablet because it is true, I used to play with the tablet just not to think” (15.48) or “in the last period […] I used to do the crosswords because they helped me to take my mind off it totally…” (9.42).

(ii) 

Caregivers’ self-care and lack of self-care

During the course of their family member’s illness, a self-care-conscious approach helped support the caregivers’ resilience and adaptability in the face of difficulties. In other cases, caregivers recognized that “I just forgot about me” (24.34) and “it was not possible in those 13 years ever, even one weekend, even just going out one evening or half a day, one Sunday” (6.55). The ability to accompany a loved one on their journey was an act of profound respect and dedication that significantly transformed those who experienced it: “You annihilate yourself as a person because you dedicate yourself completely to the person in need. Always” (21.45). On such difficult journeys, caregivers experienced a reduced ability to take care of themselves.