Understanding Family Caregivers’ Needs to Support Relatives with Advanced Disease at Home: An Ethnographic Study in Rural Portugal

to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014-16 using serial participant observations (n=33) and in-depth interviews (n=11). Thematic content analysis was used to analyse the data. Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Our findings enhance understanding which are optimally met when together a collaborative approach time. educational

70 [1]. In the European Union it has been estimated that the proportion of people aged over 65 would increase from 17% in 2005 to 30% in 2050 [2], with consistent patterns in Portugal [3]. In addition, in most of the European countries the percentage of home deaths has increased [4]. Care for people at home is often provided by family and friends [5]. Therefore, it is important to understand family caregivers' roles when they act within the home environment [6].
In 2015, the World Health Organization argued that families must become progressively involved as care partners of their relative [7]. At the same time however, the ageing population means family caregivers will themselves increasingly become recipients of care [8]. Healthcare professionals face the challenge of supporting and improving families' ability to care for people with chronic advanced disease [9]. Furthermore, professionals should help family caregivers to understand and assess their own needs as an important element of this process [10,11]. Accordingly, family caregivers should be empowered to help reduce the risk of burnout [12].
Studies related to family caregivers identify a considerable level of need [13]. Home-based education can provide an opportunity for family caregivers to learn, develop specific knowledge and attitudes within a closed environment [14]. Successful education can support the development of family caregiver skills and positive attitudes towards caring for a relative in the home [15]. However, most of the time, home care is provided by community nurses without training in palliative care, particularly in rural areas away from tertiary centres [16].
Most studies in this field are in countries with high ranking palliative care metrics [17] and gaps remain around the role and needs of family caregivers in rural community settings [18]. This paper reports on the first phase of a study entitled "Family Caregivers of People with Advance and Progressive Disease at Home: Contributions to a Model of Supervision", developed to support community nurse decision-making in [19].

Aim
To explore family caregivers' experiences when caring for a relative with advanced progressive disease at home, and to identify their perceived met and unmet needs, and understand care provided over time.

Study Design
An ethnographic study was conducted using qualitative data extracted from continuous observations and interviews with family caregivers on their experience of care. This methodology allows a contextual and reflexive approach to understand meanings, beliefs and feelings. The setting was operationalized where the social action occurred and it was essential to understand the perceptions, family caregivers' approaches and performance. This method was deemed most appropriate due to its suitability to examine complex practices in real-life settings in which the researcher has little control, such as care provided at home [20].

Participants and settings
The study was conducted in a rural area in the north of Portugal, where the palliative care and community services are under-developed. We recruited family caregivers of people with advanced progressive disease who were being cared for at home. Sampling was achieved through referrals from community doctors and nurses. A family caregiver was defined as "a person responsible for the prevention and treatment of family members' illness or disability" [21]. Participants were considered eligible if they were adult, the person they cared for was over 65 years of age and dependent in at least one dimension of self-care, and they provided most of their care, without any financial payment.

Data collection Barthel scale
The Barthel scale was initially used to characterise dependence on the self-care of the person with advanced disease. This instrument evaluates: bowel and bladder control, personal hygiene, toilet use, feeding, transfer from bed to chair and vice versa, moving, dressing, going up and down stairs and bathing. Scoring is used to categorise the person as independent, dependent or totally dependent in self-care. This instrument was culturally validated and permission for use was obtained [22].

Participant observation
The Spradley methodology [20] was used for participant observations to provide an overview in their natural setting. Observations were taken in multiple areas of the home, including the bedroom, bathroom, living room and kitchen. The researcher observed family caregivers when physical care was being provided. Throughout this phase, data were also obtained using informal conversations in order to understand the context of care, health status of care recipient and interaction with participants', plus enquire about the expectations around the healthcare team, needs, and difficulties expressed during the caring process, and management of mood and emotions. An audio-record was used as a reflective diary to record the researcher's observations. In the field notes, self-observations, self-doubts and reflections about conversations with the family caregivers and their relatives were recorded. Additionally, the chronology of observations, tone and flow, plot and emotions has also been noticed. All observations took place between 2014 and 2016. Data collection continued until data saturation was reached [20, 23]. Observations were conducted over a period of nine months in each home and covered weekends, evenings, and bank holidays. In total, over 120 hours of observations took place.

In depth interviews
To gain insight from family caregivers, ethnographic semi-structured interviews were conducted using opened questions, lasting 30-60 min each. Interviews were conducted by one researcher throughout in private. They aimed to create an open dialogue to clarify some points derived from observations, disperse any doubts, and explore in depth themes which were not covered during observations. Some themes were explored through the interview in the absence of the relative such as: when they achieved awareness of the process of becoming a caregiver; motivations and reasons to take care; personal strategies to adjust and cope to their relative's new needs, difficulties experienced, and any comments the caregiver wished to make. Interviews took place between during 2015. No paid caregivers or professionals involved in the care were presented during any of the observations or interviews.

Data analysis
Immediately after each observation and interview, the researcher transcribed verbatim audiorecorded data. Participant observations and interviews were analysed according to the six phases of thematic analysis offered by Braun and Clarke [24] and checked against the records to ensure accuracy [24]. Transcripts were read thoroughly numerous times to ensure the researcher had become familiar with the content [25]. It was not possible to obtain participant validations of written transcriptions due to the low levels of literacy in the study population.
In relation to the observations, firstly, we started to make general observations [20]. The first codification was made using thematic analysis [26]. Subsequently, focussed observations were conducted, related to the identification of small and large culturally sensitive themes. Subsequently, we tabulated these subthemes according to whether codes were obtained from observation, interviews or both. The coding process was applied to ensure validity and rigour and key themes were formed from a large number of examples within data [24]. After establishing key themes, codes under each key theme were reviewed and gathered into smaller themes. Interviews were also codified using thematic analysis [24]. Data analysis was supported by a qualitative analysis program -WebQDA [27].

Rigour
Each transcription was initially analysed by the lead author and reviewed by the second and third authors to verify the themes generated from the data collected. Research trustworthiness was ensured using four criteria: credibility, transferability, dependability and confirmability [28]. To obtain participants' most accurate responses, the researcher created a comfortable atmosphere to conduct observations and interviews. The researcher was a female doctoral student with sixteen years of experience as a nurse and five years as a researcher. The study was reported in a comprehensive and transparent way by the aid of the COREQ checklist (supplementary file).

Results
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.

Main findings
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)
She also knows all the side effects of the medication and the indications and restrictions related to taking these drugs. (Caregiver 5, Observation field note 1) 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.

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. In interviews, when the reason for not stimulating their relative to continue being independent in selfcare 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) 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. 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.

Unknown needs
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)
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.

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)

Discussion
This research aimed to explore the experience of family members caring for a relative with advanced progressive disease at home, and identify their care needs. Through the observations and interviews we have found that most of the care provided is related to maintenance of self-care and prevention of disease complications, which is consistent with previous studies [29]. Despite the challenges, they continued caring for relatives who meant losing their free time and physical capacity. These data reinforce that multiple factors influence the role of family caregivers: the degree of dependence of the person receiving care, the accessibility of equipment or additional support, the type of relationship between the caregiver and their relative [13,30,31].
The lack of continuity in health and social care provision appeared to be less coordinated when the caregivers need more support. There could be different reasons why services are not meeting family caregivers' needs, although the lack of knowledge of how to access service has previously been highlighted [32,33]. Improved education, support and understanding of disease progression, medication and symptoms management, warning signs, complications prevention and resources available may help to empower family caregivers' actions. The removal of these barriers may support family caregivers to feel more confident in providing care and avoiding complications, hospital admissions [15,34,35].
Nurses should reinforce to family caregivers the importance of asking for support from other relatives or neighbours [34,36]. Providing care at home is a highly demanding task both emotionally and physically [15]. For family caregivers who do not have the potential to provide appropriate care or to prevent complications, support might be provided [37). Practical training is essential to support family caregivers when seeking help [38]. Family caregivers need advice on how or when to provide care or what devices to use in their caregiving role. Nurses have the opportunity to explain or share information about the awareness of the risk of complications [39]. Healthcare professionals can also deliver training and supervision to increase caregivers' confidence, prevent complications and burnout [34,40]. Family nurses' knowledge and advocacy for policies and programs is also needed to support families, as these programs have a profound influence on them by moderating social determinants of health [41].
Family caregivers' consolidated knowledge and competences facilitate the interactions and partnerships with professionals to promote better care. This mutual sharing may improve the coordination of care [42]. However, it is also important to clarify the roles and adjust them to caregivers' individual resources to manage responsibilities in the process of caring.
Although some topics have been found in both observations and interviews, there were significant differences. Interviews allowed us to identify the perceived needs, which had not been possible with most observations. Furthermore, interviews reinforced some observations. For example, it was evident how lack of time can interfere with the quality of life of the family caregiver [43]. Moreover, family caregivers sometimes expressed their difficulties in managing their own emotions and feelings during the interview, which was difficult to identify through observations. However, initially, unmet needs and lack of knowledge were only identified by the observations and later clarified through interviews. This lack of awareness might explain why some family caregivers became irritable and hostile and blamed others for the difficulties they had been experiencing [44].
These behaviours can be explained by their perceived stress. A comprehensive, tailored psychosocial intervention with supervision, support and consultation would be crucial to family caregivers but should be adapted to cultural environment [45]. If psychoeducational and emotional support is required, community nurses are the best placed healthcare professionals to provide this kind of support [4]. Advice from professionals, counselling, small videos with demonstrations or educational modules can be provided on this basis and can reduce family caregivers' stress and anxiety [46].
Psychoeducational support is an important factor in the promotion of safety practices, skills and knowledge development. By empowering persons who use health and social care services through research, we can provide a course to influence change and improve the issues which concern people the most [47].
These findings have implications for clinical practice, policy and research. Nurses have an opportunity here to use the best evidence in their daily practice and increase the knowledge of their discipline [48]. Health care professionals have the duty to provide families with the best care, supplying, at the

Limitations
Despite valuable findings of this study, there are several limitations that need to be recognised. The findings only represent the perspectives of family caregivers and not the relatives' own perspective. It should be considered that all the data emerged from the same context of care. These findings only reflect participants from a rural area who lacked palliative care support. They may not be generalised or reflect the care provided by family caregivers elsewhere in Portugal or internationally. However, our findings were supported by previous studies, reinforcing their reliability and transferability.

Conclusions
This research provides a detailed understanding of family caregivers' needs when caring for a relative with advanced disease at home. It underscores the importance of family-focused care and the adoption of a family perspective. Patients and their families should be seen as equal partners in the process of decision making. Real needs are met only when professionals and family caregivers work as a team throughout the process of illness. As healthcare professionals, we must strive for a comprehensive assessment of the dyad -family caregivers and their relative. This process requires time and potentially repeated visits, but can provide key information to inform personalised care plans and improve the quality of care provided. This approach could be a means to change the way in which health and social care services deliver holistic and collaborative care.

Availability of data and materials
The data set used and/ or analysed during the current study are available from the corresponding author on reasonable request.

Author´s contributions
MJT, WA, MM contributed to made substantial contributions to conception and design, or acquisition of data, or analysis and interpretation of data. MJT, WA, NC were involved in drafting the manuscript or revising it critically for important intellectual content. All authors contributed to final approval of the version to be published. Each author should have participated sufficiently in the work to take public responsibility for appropriate portions of the content; agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Ethics approval and consent to participate
This study was submitted to the Ethics Committee for Health Northern Regional Health Administration affiliated to the Minister of Health and approval was obtained (T 82 Approval number). Participants were informed that participation was voluntary, with the right to withdraw from the study at any time without losing benefits or professional support. Written consent was obtained from all participants.
Family caregivers who consented to the observations were also invited to complete interview(s). All participants were provided with contact information for the researchers. To maintain total privacy and confidentiality for participants all personal information was deleted before transcription and representation of the data.

Consent for publication
Consent for publication of the (anonymized) collected data was obtained by means of written and/ or oral consent.