Ten family caregivers and ten relatives living with advanced progressive disease participated in the study (Table 1).
Family caregivers ranged from 46 to 78 years of age. Nine of the family caregivers were married female, and were cohabiting. All were caring for their relatives 24 hours per day and had done for periods ranging from 1 to 20 years. Five caregivers were siblings of the person living with advanced disease, two were daughter-in-law, and one each were sister, husband and niece. Nine were unemployed and providing care for their relative was the main reason caregivers aged under 65 years had not gained employment. All of them reported experiencing personal health changes over the years.
Recipients of care ranged from 72 to 93 years, eight were males and two females.
Eight had a high level of dependency in self-care according to the Barthel scale: four with 0 score, two with 2 and one 6. Seven had been bedbound for several years. The other two relatives had a moderate level of dependency, scoring 12 and 16 respectively. Only three of the family caregivers were certain that Alzheimer’s was the definitive diagnosis of their relative. The remaining four could not explain what type of dementia their relative had.
Five key overarching themes that were not mutually exclusive were identified by observations, interviews or both: (1) provision of care towards self-care dependence and prevention of complications; (2) perceived needs; (3) unknown needs; (4) caregivers’ own physical and emotional impairments; and (5) balancing limited time. Table 2 shows each theme and associated sub-themes.
Provision of care towards self-care and prevention of complications
Through the observations and interviews the maintenance of self-care of the recipient of care and the prevention of complications was the main and the most noticeable activity provided by family caregivers.
Assistance in Activities of Daily Living
Family caregivers were more aware of their role in maintaining self-care than in preventing complications. Data showed that almost all family caregivers assisted the person in activities of daily living ranging from bathing (9/10), grooming (9/10), feeding (8/10), toileting (9/10), medication management (10/10), socialisation (10/10), and help with medical procedures (10/10). The following extracts illustrate this theme.
She knows how to wash the person, takes care of their skin and hair, and dressing techniques. She is able to adjust the temperature of the water.
(Caregiver 1, Observation field note 3)
Transfers of the person to the wheelchair, sofa or bed (9/10) without any human or mechanical assistance were most often observed. During interviews caregivers expressed that they viewed asking another relative or healthcare provider for help as a weakness. Furthermore, most ignored potential aids which might support them in this role.
“He is too busy [son]. And I don’t need help. I always did it by myself [transfer to bed].” (Caregiver 2, Interview 1)
Promotion of independence in self-care was a sub-theme, identified in two family caregivers through observations and interviews, although seven relatives could have benefited from this care.
“And she helps too. [She wets the sponge and I put the soap on [FC]. I reinforce ‘Come on. You do what you can [talking to the relative]’. [FC tries to maintain the physical capacity of the person being cared for].” (Caregiver 3, Interview 1)
In interviews, when the reason for not stimulating their relative to continue being independent in self-care was discussed, family caregivers gave several reasons: had never thought about that, concerned that the other relatives or neighbours would think that they were neglecting the relative, or it was quicker for family carers to do it themselves than to wait for it to be done by the ill person.
“I went to give the lunch to my mum [She does not allow the mother to feed herself, although she has the capacity to do so].” (Caregiver 7, Interview 1)
Prevention of complications
Family caregivers were focused on preventing complications including aspiration, dehydration, constipation, pressure ulcers, moisture lesions and wandering. While the encouragement of self-care was evident, interviews around knowledge concerning the prevention of complications were very enlightening. For instance, the researcher needed to understand that the head of the bed was placed at an angle of thirty degrees when the family caregiver put the patient in bed.
“I position the bed so she doesn't choke ... you know, so the food goes better to the tummy.” (Caregiver 5, Interview 1)
PAD was seating in an arm chair, with an immobilizer in place and pillows surrounded her body to avoid a front fall. (Caregiver 1, Observation field note 1)
A final sub-theme addressed in the observation and interviews was the prevention of falls. All family caregivers were aware of the importance of falls prevention. However, not all had the physical capacity to prevent them. Some were old and had physical impairments of their own. All participants with dementia presented cognitive impairment, which increases the risk of fall. Through observations, only two family caregivers were seen to follow routines and use communication management to avoid further confusion. The only person able to walk (with support of a stick) caused an enormous amount of trouble as she was always trying to escape the home.
“I spend all day watching her. If I miss a minute, she disappears. One day, I took 2 hours to find her. I do not understand how. She walked almost 2 kilometres with her stick. And she is not able to help me do anything at home. […] I sometimes wish that she was bedbound.” (Caregiver 9, Interview 1)
Through observations it was evident that once the person cared for became more dependent on self- care the risk of complications increased. Family caregivers were not aware of this complexity, as they continued to support the person in their self-care in the same way they had done until that moment, without noticing the new needs.
Perceived needs were grouped into two sub-themes: knowledge and skills. Both sub-themes were approached in the interviews and informal conversations during the observations, mainly because the researcher felt that these themes were avoided in front of the dependent person. Interviews provided additional insight in relation to knowledge; family caregivers reported the need for a better understanding of the process of dying and disease progression; prevention of complications (pressure ulcers, aspiration etc.); medication and behaviour management; and how to access professional support.
She knows that the urine becomes more concentrated with age. However, she does not know how much fluid she should give to avoid dehydration. She asks me [researcher] how much fluid she should give and what the signs and symptoms of dehydration are. (Caregiver 6, Observation field note 2)
Simultaneously, family caregivers talked about the need of skill improvement such as performing suction of oral secretions, how to apply different techniques to transfer the person to wheelchair or toilet seat, and how to provide care to prevent ankyloses, pressure ulcers and aspiration.
“Do you know that I need to do suction? […] It is not difficult to learn how to use the suction. They explained to my sister first. After that, the nurse came and explained it to me.” (Caregiver 7, Interview 1)
To identify the unmet family caregivers’ needs, the researcher compared the level of care needed by the person according to palliative care standards to the care provided by the family caregiver. This sub-theme was mainly identified through observations and clarified in interviews. During the study a set of complications that were not prevented was observed. Aspiration, ankylose, dehydration, constipation, moisture lesions, pressure ulcers and falls were not prevented in some instances. Through the interviews was possible to clarify that these family members ignored these complications or denied they were problematic.
PAD has high risk of aspiration and the top of bed was less than 30 degrees. However, FC did not do anything. FC did not allow the community nurse to explain how to prevent aspiration. This FC has been caring for more than 10 years and was very upset because the nurse provided an explanation.
(Caregiver 2, Observation field note 1)
Two other sub-themes were identified through observations and interviews. One was the lack of knowledge related to disease progression, warning signs and symptoms, medicines and side effects, exercise and diet and empowerment of self-care of their loved ones. Another sub-theme identified was how carers could access professional support. Five caregivers expressed ignorance of how to obtain health professional support (community nurse, doctors, social workers …), social support (day centres, nursing homes …) and community support. One caregiver called Emergency Medical Services when his wife was dying, because he did not know what was happening.
“I called to the INEM (ambulance service) that came and took her to the Emergency Medical Services.” (Caregiver 5, Interview 2)
Caregivers’ own physical and emotional impairments
Observations and interviews highlighted other aspects directly related to the family caregivers’ role and capacity to provide care. Some care was not provided due to caregivers’ own physical impairment. For example, support for self-care and prevention of complications were not delivered when the family caregiver experienced physical impairments. Five of the family caregivers had declining physical capacity were unable to provide physical care. As a consequence, and because they had no access to community or palliative care support, three of the people with advanced disease were entirely bedbound.
I asked FC about her tired face. She referred that she has had back pain from an old fracture, and that it took a lot of effort to reposition PAD in bed.
(Caregiver 1, Observation field note 4)
“Before she had been totally bedbound, I bathed her, changed her pad, so on. I was doing everything. But after my heart attack, I started to be weak too and talk to myself ‘No, it can’t be like that. I’m so tired.’. So, I started to care less.
(Caregiver 5, Interview 1)
Two family caregivers shared how their own emotional fragility and lack of relational interaction with their relative interfered with the quality of care provided. Both family caregivers had been followed up by a specialist in psychiatry. Their psychological and emotional state not only interfered with their ability to care but also with their own overall health.
I went to the psychologist. [...] I went to the psychologist and he told me to stop all the medicine. I just stopped sleeping at night. [...] And then what he advised me to do was to go to a psychiatrist ... First, I still go to the general practitioner (GP) and then I go to the psychiatrist. (Caregiver 9, Interview 1)
Nevertheless, some of the family caregivers had their own self-care strategies, handcrafting hiking, reading, swimming, going to the hairdresser and watching television. During the observation period some family caregivers gave up their hobbies and free time as the person cared for became more dependent on personal care.
“I stopped going to the movies, having dinner out. I stopped doing what everyone else does. [...] anywhere I go, I am going to run [trembling voice]. I am experiencing stress for fear of something happening to my mum.”
(Caregiver 7, Interview 1)
Balancing limited time
Observations and interviews highlighted lack of time as having a direct impact on the type and quality of care provided. In addition to their caregivers’ roles, these family members were responsible for preparing meals, housekeeping, managing the family budget, raising animals, and cultivating crops for income. Family caregivers expressed that these activities lead to less time to themselves and, consequently, less time available to care for their relative. To compensate, they again reduced their leisure activities. Furthermore, in the interviews, other activities were identified that contribute further to the reduction of free time. All caregivers needed to take care of another family member, a father, a husband, grandchildren or a brother. The reason given for this extra care was because they were at home and ´had more free time’.
“In addition to taking care of her mother, she supports her daughter by helping to take care of her grandchildren almost every day”
(Caregiver 7, Observation field note 2)
Figure 1 depicts the main findings, where it is evident that an imbalance in any one of the factors would lead to reduced performance of family caregiver role, and increase the risk of complications for their relatives. This could result in overall decrease in their quality of life for both parties.