Informal Palliative Care at Home: A Focus Group Study Among Professionals Working in Palliative Care in Portugal
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Setting and Recruitment
2.3. Data Collection
2.4. Data Analysis
2.5. Trustworthiness
2.6. Ethics
3. Results
3.1. Sample Description
3.2. Overview of Findings
3.2.1. Theme 1: IC Needs and Motivations for Providing Care
- (a)
- The heterogeneity of the IC profile
FGD 1: We currently also have a population of very old caregivers, as is typical, but we also have many caregivers, wives, husbands, and young caregivers as well. The problem is that, in addition to taking care of the family, they also work to maintain the family structure.
FGD 2: The majority are older women, although in the last year the age range of our users has dropped considerably and we have noticed that we often have/continue to have women, but many of them are still actively working, which was not common, but the majority are older women with health problems, and physical limitations to care.
FGD 4: The type of caregivers and age range is very versatile, also because the ages and stages of the disease of the people we treat here are also very varied. We have very young people who are spouses, and very old people who are also the spouse, but they are two completely different types of spouses. (…). Typically, younger people have more knowledge while older people have physical limitations that sometimes prevent effective care.
FGD 3: It’s interesting. Both in wealthier social classes and in social classes that have nothing, it is impressive how they manage to even take care of themselves. I think it varies. In economic terms, we find everything. It’s not even possible to define a population. (…) Here in my city we have everything, like everywhere else in the world, right? There are very poor people, who don’t have money for basic needs, and there are people who live very well, and it’s different.
FGD 1: And our caregivers are characterized as being mostly wives or daughters.
FGD 3: No, it varies. When there is a more advanced age, it is the wife or husband who is taking care of the spouse, most of the time, the children accompany them.
FGD 3: Being a caregiver is demanding, it is not enough to know a lot, they need to assume care as a part of their own lives, with all the implications that this entails.
FGD 1: Many caregivers are at the limit of their abilities. They want to care but the role is very complex in terms of individual, family and social issues.
- (b)
- The complexity of illness trajectories
FGD 3: One of the points where informal caregivers have difficulty in adapting to their role has to do with the progression of the disease. Many patients arrive with their autonomy still preserved, in the vast majority, and therefore are able to carry out all their basic activities, and the informal caregiver begins by being more of a companion than a person actively helping with dependency. As the disease progresses, with the worsening of dependence, more and more work and dedication are required from the informal caregiver, and this is where the difficulties and doubts begin.
FGD 1: One of the concerns, especially in the last (imperceptible) ones, which I notice is mainly food. People consider the fact that the patient is not eating as a failure in the provision of care.
FGD 4: I would say it is food and hydration. It often causes confusion for caregivers, whether because they have a reduced appetite and are not eating enough, or because they are not drinking enough water, it causes more confusion for families, realizing that perhaps it no longer makes sense.
FGD 3: Food, which is basically the main focus of the family, is the fact that the family member does not eat the way they used to.
FGD 2: Questions regarding nutrition and hydration, it’s cultural and it’s important.
FGD 1: The food, here it is. I think the most important thing about diet is the natural evolution of a serious, progressive and irreversible disease. All areas, lack of strength, dependence, the ability to take care of oneself, decreased appetite, “if your family member eats less, it’s not because he doesn’t want to eat, it’s not because he wants to, it has to do with the natural progression of the disease, and it’s not because he’s eating less that he’s getting worse. […] but what I feel above all is this concern, and that they try to normalize with our culture of taking care of our diet. We are sick and we need a little soup to make us feel better, and especially these older people, who say, “if you are sick, I brought you a little soup to see if you feel better”.
FGD 1: At a very advanced stage in which the patient will be with us for a very short time, and therefore have more difficulty in this area of accepting the rapid progression of the situation (…) this issue of care until the end, the issue of dying at home, and sometimes it is this fear of death, (…) but sometimes it is very common for them to ask these questions of “if I die at night, what do I do?”, right? This fear.
FGD 4: There is fear of not being able to control the symptoms at home when they decompensate. Soon they are unable to respond to the needs of the palliative patient.
FGD 3: Often, the perception we have is that the caregiver feels a lot of doubts, above all, they always have a lot of doubts, they ask themselves a lot of questions, because the unknown ends up being just that, the progression of the disease ends up causing them a lot of discomfort and in that sense they always have a lot of doubts. (…) I think it’s anxiety and anguish. Sometimes even in small things, because they want to validate, deep down, if they are doing well. And what they are doing well, if it is good for the family. Above all, I realize this more. If they are doing everything or anything they can do.
FGD 1: He tells me he is going to die, he is suffering a lot or when he is in a more advanced stage “he is in great suffering, he has that noise”, and deep down it is the caregiver, no matter how much he explains it, it is the caregiver who is suffering.
FGD 2: Essentially, I think it starts with a great difficulty in managing emotions, particularly in managing ambivalence and the feeling that you will be able to take care of someone and the feeling of helplessness in the face of what could or is happening or could happen in the future.
FGD 1: We were talking about emotional issues, I think that caregivers make a great effort to represent and inhibit what they feel, and there is a need to express these emotions, there is also a need to take care of themselves and often they do not have much of this perception. We are the ones who have it and it is not easy to pass this on to them.
FGD 2: I have several caregivers who go to the appointment and say: “my husband is the one who is sick, but my life is the one that has stopped”. They may even be people with children and grandchildren, and they feel loneliness and hide in a shell. This is also a part of the profile, because those who are true caregivers, in the true sense of the word, and who care, first think about the other person and then think about how they are going to resolve this issue. (…) Therefore, caring for others is only possible if we are also the best we can be. There is often resistance on the part of caregivers to accept our help. In terms of adaptive strategies, we also try to promote and raise awareness among caregivers about emotional self-care, so that people understand how to maintain it as well.
FGD 1: Stress management, because sometimes there are multiple competing stresses. There could be some exercises, the tool could be a resource. There is a lot about self-care materials, very simple things, or we even leave it to people to see if they have in fact been paying attention to these areas.
- (c)
- Care as a sense of duty
FGD 1: Those who really want to care, who really want to be present at that moment, find a way to be present (…).
FGD 4: The caregivers want to care, to make this sacrifice, which for them is not really a sacrifice. It is as if it were a moral obligation, as a family, to do so.
FGD 4: We forget that the whole day, the whole night, in which this caregiver is normally alone, having to take care of the patient.
FGD 2: Therefore, there ends up being a lot of this additional overload on that single caregiver.
FGD 1: We have several caregivers who have to provide for their families, because usually, in the case of daughters, they already have another family with children, grandchildren. They have to continue to provide for their families and at the same time be there for their sick parents.
FGD 4: People try to do the best they can and feel that they cannot meet their needs. On the other hand, they want to keep their family members at home too and they have this difficulty in being able to meet their needs and then they live in a dilemma, right? Between seeking institutionalization, or hospitalization, or whatever, to be able to receive better care, versus having it at home, which was a place they would like.
3.2.2. Theme 2: Perceived Barriers to Good-Quality Palliative Home Care
- (a)
- Limited access and late referral to specialized PC
FGD 2: We are aware that there are many patients with palliative care needs who are not being followed by palliative care teams. There is a lot of hidden suffering, from all those who need us but who cannot access us.
FGD 4: People often come here with patients with terminal illnesses who have no idea what is going on. The diagnosis was made a long time ago and the prognosis has been reserved for a long time. People are in a terminal phase, and their families are not made aware of this. They are told that they have cancer, they are told that they will undergo treatment, they are never told that this cancer is not reversible, they are never told what that means.
FGD 4: And I think that some answers are missing here so that caregivers also feel more capable of having their family members at home.
FGD 3: For caregivers, after they start to experience all the team’s actions and support, one of the things they always say is, “It’s a shame that this isn’t... how do I do it on the weekend, how do I do it at night”, and if you were also available it would be different, and there are times when we realize that (...) They need to feel safe and know that there is someone on the other side who will answer them. For example, on the weekend.
FGD 4: We provide support, we manage, having telephone lines that are open from 9 am to 6 pm. However, those who work in palliative care know that the worst times are at night, and at night is when we have fewer resources. Therefore, we have to stop this phase of voluntarism of staying late to work, and we seriously need to invest in the formalization of this continuous support.
FGD 3: We lack community teams because we could have patients being cared for at home, and with the possibility of dying at home. These teams would be able to support families over a longer period of time. We often see the anguish of family members who have to deal with a patient who is dying at home in their final days, and the support we can provide is only over the phone. We often feel like going home to help. That’s where we have to act…
- (b)
- Lack of social responses
FGD 2: When we talk about places in shelters for caregivers to rest, there are still very few places.
FGD 3: As the disease progresses, support is needed in terms of walkers, wheelchairs, bath chairs and articulated beds that allow them to stay at home with them caring for them. One of the most complex things is the moment when they need an articulated bed and we know it is necessary, but not everyone has the financial capacity to make this acquisition. As we have family members who donate some support materials, we end up taking out loans, but they do not meet our needs.
FGD 1: Locally, we have health centers and local associations that have technical assistance banks that lend equipment and support products, this helps with this immediate need.
FGD 1: Social security vacancies (state support system) are bureaucratic processes, which limits the response capacity. They end up being an unviable alternative, it ends up being like that.
FGD 2: The system is extremely bureaucratic. When the responses arrive, the patients have already died.
- (c)
- The wear and exhaustion of ICs
FGD 4: They arrive at a stage of exhaustion, because there were no answers that helped them. And often this is what we try to do in consultations, especially in the first consultations, to make them aware that there is a way to support them so that they do not reach a state of exhaustion that later prevents them from continuing to care for the child and from having their family member at home, which is their main desire.
FGD 3: As we were saying earlier, often when they arrive here, they have that feeling of helplessness, of frustration, because they think that no matter what they do, they will not be able to reverse the situation.
FGD 2: Caregivers are held hostage by care tasks and no longer have a social life. This leads to tiredness and exhaustion. But when they need help, or when patients have uncontrolled symptoms, they are very resistant to short-term hospitalizations, for example.
FGD 3: Whenever we identify the caregiver’s need for rest, we find that it is not an easy process for the caregiver to decide on hospitalization because they have a very strong connection with the patient because they are caring for them 24 h a day.
FGD 1: Because there are many interventions throughout the process that bring benefits, and there are many decisions that you make, such as, for example, taking away a medication that the neurologist prescribed three years ago and that was very important at the time, and we suspend that medication, it is a very simple intervention, suspending a medication that is not currently being useful and may even be harming the patient.
FGD 1: A very important aspect for families is: ‘and when he dies, what will it be like, who will come here? And if it’s at night?’, once again it is information that reduces the uncertainty, fear and exhaustion of caregivers.
FGD 3: With overload and exhaustion come the feelings of having failed, of having abandoned, of not having done everything. We must be careful to avoid prolonged mourning and the emergence of mental illness.
- (d)
- Low literacy in PC
FGD 1: In the past, there was no internet and not so much information. Now there is too much information, and sometimes the excess of information, and especially contradictory information, generates insecurity, instead of empowering and strengthening what the family or the person actually wants to do.
FGD 4: We increasingly find younger people who turn to smartphones very easily to find answers. However, this no longer happens with isolated caregivers, we have to have a different approach.
FGD 2: Technologies are good, but for older people it is very limiting. For example, in the simple issuance of an electronic prescription, they do not have the capacity, not even a cell phone, so they can access the code.
3.2.3. Theme 3: Perceived Enablers of Good-Quality Palliative Home Care
- (a)
- Formal and Informal support networks
FGD 4: The factor that makes us feel more at ease when we send someone back home is, in addition to this caregiver, knowing if he or she has family living nearby, neighbors who can provide support.
FGD 2: In more rural places, this still happens and people who live nearby are available to help each other. The neighbors will play this role. In large cities, there is disorientation given that there is no such available informal support network.
FGD 1: It is clear that formal resources are more common at the urban level, such as health centers, palliative care teams, and local associations. The same is not true in more rural and remote areas.
FGD 4: In the ULS (Local Health Unit), we all work in a network, which allows us to make the best use of resources. When we have patients who live far from our PC team, we try to work with community units to support caregivers with their difficulties, manage symptoms, and make therapeutic adjustments.
- (b)
- The quality of bonds with community teams in PC
FGD 1: In the monitoring processes, we have to develop adequate communication, make information available, and whether in person or remotely we try to listen and be assertive and this generates a feeling of security in the caregiver, that they are being understood.
FGD 3: Availability. We are available to support them. Even if they don’t need it, they know that they have someone available to help.
FGD 4: Above all, we try to emancipate them, empower them, that is, anticipate certain issues that at that time may not be a priority, but that in the future may become necessary.
FGD 2: It is a basic concern for us to develop practices that are preventive, whether in controlling symptoms, in the process of death and loss.
- (c)
- Respect for preferences and wishes
FGD 4: Normally, we question what the preferred place for care and death is, to better manage expectations.
FGD 2: Caregivers suffer because they are unable to achieve the goal of keeping their family member at home until they die. This is often the objective they have in mind.
FGD 3: Allowing the person to be cared for at home creates a greater connection with significant others and facilitates access to memories while respecting their wishes and desires. Not to mention that patients do not need to travel, which for a person confined to bed, having to be transported by ambulance causes discomfort. Caring at home with the support of a specialized team makes all the difference in terms of a better quality of life and preservation of dignity.
- (d)
- The systematization of the informal caregiver training process
FGD 1: There must be a well-designed, well-defined plan, in which the organizational methodologies include the training of caregivers. After identifying the informal caregiver, it is important to assess their conditions for assuming this role and to understand the entire family process in depth. The initial step is to explore whether the person wants to be an IC and whether there is an assumed role or not, or whether they want to assume it, and then, if it is assumed, what the person needs and what the family needs.
FGD 1: Whenever a patient changes service or team, it is essential to ensure continuity of care between health responses and social responses.
FGD 2: For a patient who is at home 40 km from the PC team, (…) we resort to exchanging messages via WhatsApp and teleconsultation, and this greatly helps with the comfort of the patient and family.
FGD 4: Whether by telephone or in-person consultation, I think these end up being the most effective means and the ones they trust the most.
FGD 3: We see older people who have already mastered technologies and do things. So, I think they effectively learn to use WhatsApp, for example, to talk to their grandchildren. In other words, I think it is an added value that expands communication.
4. Discussion
4.1. Strengths and Limitations
4.2. Implications for Practice
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Xi, J.Y.; Liang, B.H.; Zhang, W.J.; Yan, B.; Dong, H.; Chen, Y.Y.; Lin, X.; Gu, J.; Hao, Y.T. Effects of population aging on quality of life and disease burden: A population-based study. Glob. Health Res. Policy 2025, 10, 2. [Google Scholar] [CrossRef]
- Maresova, P.; Javanmardi, E.; Barakovic, S.; Barakovic Husic, J.; Tomsone, S.; Krejcar, O.; Kuca, K. Consequences of chronic diseases and other limitations associated with old age—A scoping review. BMC Public Health 2019, 19, 1431. [Google Scholar] [CrossRef] [PubMed]
- Abu-Odah, H.; Molassiotis, A.; Liu, J. Challenges on the provision of palliative care for patients with cancer in low- and middle-income countries: A systematic review of reviews. BMC Palliat. Care 2020, 19, 55. [Google Scholar] [CrossRef] [PubMed]
- da Silva, M.M.; Telles, A.C.; Baixinho, C.L.; Sá, E.; Costa, A.; Henriques, M.A. Analyzing innovative policies and practices for palliative care in Portugal: A qualitative study. BMC Palliat. Care 2024, 23, 225. [Google Scholar] [CrossRef]
- Roberts, B.; Robertson, M.; Ojukwu, E.I.; Wu, D.S. Home Based Palliative Care: Known Benefits and Future Directions. Curr. Geriatr. Rep. 2021, 10, 141–147. [Google Scholar] [CrossRef] [PubMed]
- Bergqvist, J.; Ljunggren, G. The Impact of Integrated Home Palliative Care Services on Resource Use and Place of Death. J. Palliat. Med. 2020, 23, 67–73. [Google Scholar] [CrossRef]
- World Health Organization. Palliative Care. Available online: https://www.who.int/health-topics/palliative-care (accessed on 13 March 2025).
- World Health Organization. Assessing the Development of Palliative Care Worldwide: A Set of Actionable Indicators. Available online: https://www.who.int/publications/i/item/9789240033351 (accessed on 13 March 2025).
- Bakitas, M.A.; Elk, R.; Astin, M.; Ceronsky, L.; Clifford, K.N.; Dionne-Odom, J.N.; Emanuel, L.L.; Fink, R.M.; Kvale, E.; Levkoff, S.; et al. Systematic review of Palliative Care in the rural setting. Sage J. Cancer Control. Moffitt Cancer Cent. 2015, 22, 450–464. [Google Scholar] [CrossRef]
- Arias-Casais, N.; López-Fidalgo, J.; Garralda, E.; Pons, J.J.; Rhee, J.Y.; Lukas, R.; de Lima, L.; Centeno, C. Trends analysis of specialized palliative care services in 51 countries of the WHO European region in the last 14 years. Palliat. Med. 2020, 34, 1044–1056. [Google Scholar] [CrossRef]
- Marques, P.; Rêgo, F.; Nunes, R. Palliative Care in Portugal—From Intention to Reality, What Is Yet to Be Accomplished. Nurs. Rep. 2023, 13, 1477–1485. [Google Scholar] [CrossRef]
- Allen, J.; Woolford, M.; Livingston, P.M.; Lobchuk, M.; Muldowney, A.; Hutchinson, A.M. Informal carer support needs, facilitators and barriers in transitional care for older adults from hospital to home: A scoping review. J. Clin. Nurs. 2023, 32, 6773–6795. [Google Scholar] [CrossRef]
- Feliciano, D.R.; Reis-Pina, P. Enhancing End-of-Life Care With Home-Based Palliative Interventions: A Systematic Review. J. Pain Symptom Manag. 2024, 68, e356–e372. [Google Scholar] [CrossRef] [PubMed]
- Chess-Williams, L.M.; Broadbent, A.M.; Hattingh, L. Cross-sectional study to evaluate patients’ medication management with a new model of care: Incorporating a pharmacist into a community specialist palliative care telehealth service. BMC Palliat. Care 2024, 23, 172. [Google Scholar] [CrossRef] [PubMed]
- Radbruch, L.; de Lima, L.; Knaul, F.; Wenk, R.; Ali, Z.; Bhatnaghar, S.; Blanchard, C.; Bruera, E.; Buitrago, R.; Burla, C.; et al. Redefining Palliative Care-A New Consensus-Based Definition. J. Pain Symptom Manag. 2020, 60, 754–764. [Google Scholar] [CrossRef] [PubMed]
- Kraun, L.; De Vliegher, K.; Vandamme, M.; Holtzheimer, E.; Ellen, M.; van Achterberg, T. Older peoples’ and informal caregivers’ experiences, views, and needs in transitional care decision-making: A systematic review. Int. J. Nurs. Stud. 2022, 134, 104303. [Google Scholar] [CrossRef]
- Guo, P.; Pinto, C.; Edwards, B.; Pask, S.; Firth, A.; O’Brien, S.; Murtagh, F.E. Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study. Sage J.-Palliat. Med. 2022, 36, 124–134. [Google Scholar] [CrossRef]
- Morey, T.; Scott, M.; Saunders, S.; Varenbut, J.; Howard, M.; Tanuseputro, P.; Webber, C.; Killackey, T.; Wentlandt, K.; Zimmermann, C.; et al. Transitioning From Hospital to Palliative Care at Home: Patient and Caregiver Perceptions of Continuity of Care. J. Pain Symptom Manag. 2021, 62, 233–241. [Google Scholar] [CrossRef]
- Prado, E.; Marcon, S.; Kalinke, L.; da Silva, M.; Barreto, M.; Takemoto, A.; Birolim, M.; Laranjeira, C. Meanings and Experiences of End-of-Life Patients and Their Family Caregivers in Hospital-to-Home Transitions: A Constructivist Grounded Theory Study. Int. J. Environ. Res. Public Health 2022, 19, 12987. [Google Scholar] [CrossRef]
- Saunders, S.; Weiss, M.E.; Meaney, C.; Killackey, T.; Varenbut, J.; Lovrics, E.; Ernecoff, N.; Hsu, A.T.; Stern, M.; Mahtani, R.; et al. Examining the course of transitions from hospital to home-based palliative care: A mixed methods study. Palliat. Med. 2021, 35, 1590–1601. [Google Scholar] [CrossRef]
- Ongko, E.; Philip, J.; Zomerdijk, N. Perspectives in preparedness of family caregivers of patients with cancer providing end-of-life care in the home: A narrative review of qualitative studies. Palliat. Support. Care 2024, 22, 2125–2135. [Google Scholar] [CrossRef]
- Chan, C.K.; Vickers, T.; Barnard, A. Meaning Through Caregiving: A Qualitative Study of the Experiences of Informal Carers. Br. J. Soc. Work 2020, 50, 682–700. [Google Scholar] [CrossRef]
- Nikbakht-Nasrabadi, A.; Mardanian-Dehkordi, L.; Taleghani, F. Abandonment at the Transition from Hospital to Home: Family Caregivers’ Experiences. Ethiop. J. Health Sci. 2021, 31, 525–532. [Google Scholar] [CrossRef] [PubMed]
- Bhadelia, A.; Oldfield, L.E.; Cruz, J.L.; Singh, R.; Finkelstein, E.A. Identifying Core Domains to Assess the “Quality of Death”: A Scoping Review. J. Pain Symptom Manag. 2022, 63, e365–e386. [Google Scholar] [CrossRef]
- Hofmeister, M.; Memedovich, A.; Dowsett, L.E.; Sevick, L.; McCarron, T.; Spackman, E.; Stafinski, T.; Menon, D.; Noseworthy, T.; Clement, F. Palliative care in the home: A scoping review of study quality, primary outcomes, and thematic component analysis. BMC Palliat. Care 2018, 17, 41. [Google Scholar] [CrossRef]
- Pinto, S.; Lopes, S.; de Sousa, A.B.; Delalibera, M.; Gomes, B. Patient and Family Preferences About Place of End-of-Life Care and Death: An Umbrella Review. J. Pain Symptom Manag. 2024, 67, e439–e452. [Google Scholar] [CrossRef]
- Caetano, P.; Querido, A.; Laranjeira, C. Preparedness for Caregiving Role and Telehealth Use to Provide Informal Palliative Home Care in Portugal: A Qualitative Study. Healthcare 2024, 12, 1915. [Google Scholar] [CrossRef] [PubMed]
- World Health Organization. Quality Health Services and Palliative Care: Practical Approaches and Resources to Support Policy, Strategy and Practice. Available online: https://www.who.int/publications/i/item/9789240035164 (accessed on 13 March 2025).
- Sítima, G.; Galhardo-Branco, C.; Reis-Pina, P. Equity of access to palliative care: A scoping review. Int. J. Equity Health 2024, 23, 248. [Google Scholar] [CrossRef] [PubMed]
- Tibell, L.H.; Årestedt, K.; Holm, M.; Wallin, V.; Steineck, G.; Hudson, P.; Kreicbergs, U.; Alvariza, A. Preparedness for caregiving and preparedness for death: Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care. Death Stud. 2024, 48, 407–416. [Google Scholar] [CrossRef] [PubMed]
- Gérain, P.; Zech, E. Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving. Front. Psychol. 2019, 10, 1748. [Google Scholar] [CrossRef]
- Szabo, S.; Lakzadeh, P.; Cline, S.; Palma Dos Reis, R.; Petrella, R. The clinical and economic burden among caregivers of patients with Alzheimer’s disease in Canada. Int. J. Geriatr. Psychiatry 2019, 34, 1677–1688. [Google Scholar] [CrossRef]
- Cejalvo, E.; Martí-Vilar, M.; Merino-Soto, C.; Aguirre-Morales, M.T. Caregiving Role and Psychosocial and Individual Factors: A Systematic Review. Healthcare 2021, 9, 1690. [Google Scholar] [CrossRef]
- Liu, H.; Lou, V.W.Q. Transitioning into spousal caregiving: Contribution of caregiving intensity and caregivers’ multiple chronic conditions to functional health. Age Ageing 2019, 48, 108–114. [Google Scholar] [CrossRef]
- Kirtania, M.; Katta, A. Essential Elements of Home-based Palliative Care Model: A Rapid Review. Indian J. Palliat. Care 2023, 29, 359–367. [Google Scholar] [CrossRef] [PubMed]
- Mertens, F.; Vanderstichelen, S.; Deveugele, M.; Deliens, L.; Pype, P. Family carers’ experiences regarding patient transfers between care settings in palliative care: An interview study. Ann. Palliat. Med. 2023, 12, 767–782. [Google Scholar] [CrossRef]
- Enguidanos, S.; Lomeli, S.; Kogan, A.C.; Rahman, A.; Lewis, N. Home-Based Palliative Care Team Perspectives on Challenges in Patient Referral and Enrollment. J. Pain Symptom Manag. 2022, 63, 665–672. [Google Scholar] [CrossRef] [PubMed]
- da Cruz, M.B.; Nunes, R. Palliative care and the Portuguese health system. Porto Biomed. J. 2016, 1, 72–76. [Google Scholar] [CrossRef]
- Malterud, K. Systematic text condensation: A strategy for qualitative analysis. Scand. J. Public Health 2012, 40, 795–805. [Google Scholar] [CrossRef] [PubMed]
- Albert, K.; Brundage, J.S.; Sweet, P.; Vandenberghe, F. Towards a critical realist epistemology? J. Theory Soc. Behav. 2020, 50, 357–372. [Google Scholar] [CrossRef]
- Doody, O.; Slevin, E.; Taggart, L. Focus group interviews in nursing research: Part 1. Br. J. Nurs. 2013, 22, 16–19. [Google Scholar] [CrossRef]
- Krueger, R.A.; Casey, M.A. Focus Groups: A Practical Guide for Applied Research, 5th ed.; Sage: Los Angeles, CA, USA, 2015. [Google Scholar]
- Tong, A.; Sainsbury, P.; Craig, J. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int. J. Qual. Health Care 2007, 19, 349–357. [Google Scholar] [CrossRef]
- Patton, M.Q. Qualitative Research and Evaluation Methods. In Integrating Theory and Practice, 4th ed.; Sage Publications Inc.: Los Angeles, CA, USA, 2015. [Google Scholar]
- Moser, A.; Korstjens, I. Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. Eur. J. Gen. Pract. 2018, 24, 9–18. [Google Scholar] [CrossRef]
- Doody, O.; Slevin, E.; Taggart, L. Preparing for and conducting focus groups in nursing research: Part 2. Br. J. Nurs. 2023, 22, 170–173. [Google Scholar] [CrossRef] [PubMed]
- Braun, V.; Clarke, V. Using thematic analysis in psychology. Qual. Res. Psychol. 2006, 3, 77–101. [Google Scholar] [CrossRef]
- Braun, V.; Clarke, V. Reflecting on reflexive thematic analysis. Qual. Res. Sport Exerc. Health 2019, 11, 589–597. [Google Scholar] [CrossRef]
- Byrne, D. A worked example of Braun and Clarke’s approach to reflexive thematic analysis. Qual. Quant. 2022, 56, 1391–1412. [Google Scholar] [CrossRef]
- Korstjens, I.; Moser, A. Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. Eur. J. Gen. Pract. 2018, 24, 120–124. [Google Scholar] [CrossRef]
- Barlund, A.S.; André, B.; Sand, K.; Brenne, A. A qualitative study of bereaved family caregivers: Feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer. BMC Palliat. Care 2021, 20, 7. [Google Scholar] [CrossRef]
- Robinson, C.A.; Bottorff, J.L.; McFee, E.; Bissell, L.J.; Fyles, G. Caring at home until death: Enabled determination. Support. Care Cancer 2017, 25, 1229–1236. [Google Scholar] [CrossRef] [PubMed]
- Salifu, Y.; Almack, K.; Caswell, G. ‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting. Palliat. Med. 2021, 35, 97–108. [Google Scholar] [CrossRef]
- Pope, N.D.; Radtke, H.L. Older women caring for others and needing care. J. Women Aging 2022, 34, 687–691. [Google Scholar] [CrossRef]
- Bijnsdorp, F.M.; Pasman, H.R.W.; Boot, C.R.L.; van Hooft, S.M.; van Staa, A.; Francke, A.L. Profiles of family caregivers of patients at the end of life at home: A Q-methodological study into family caregiver’ support needs. BMC Palliat. Care 2020, 19, 51. [Google Scholar] [CrossRef]
- Matthews, M.; McKeaveney, C.; Noble, H.; Reid, J. Exploring the unmet needs and experiences of informal caregivers of patients with end-stage kidney disease (ESKD) receiving haemodialysis—A qualitative study. PLoS ONE 2024, 19, e0302525. [Google Scholar] [CrossRef] [PubMed]
- Theißen, T.; Ullrich, A.; Oechsle, K.; Wikert, J.; Bokemeyer, C.; Schieferdecker, A. “Being an informal caregiver—Strengthening resources”: Mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care. BMC Palliat. Care 2024, 23, 95. [Google Scholar] [CrossRef]
- Hodge, G.; Kallis, G.; Oh, T.M.; Wheat, H.; Pearce, S. Exploring perceived barriers to palliative and end of life care provision in South-West England: Bringing together the perspectives of professionals, patients, and families. Front. Sociol. 2025, 9, 1488688. [Google Scholar] [CrossRef] [PubMed]
- Low, C.; Namasivayam, P.; Barnett, T. Co-designing Community Out-of-hours Palliative Care Services: A systematic literature search and review. Palliat. Med. 2023, 37, 40–60. [Google Scholar] [CrossRef]
- PDQ Supportive and Palliative Care Editorial Board. Informal Caregivers in Cancer: Roles, Burden, and Support (PDQ®): Health Professional Version. In PDQ Cancer Information Summaries; National Cancer Institute (US): Bethesda, MD, USA, 2024. [Google Scholar]
- Banadinović, M.; Vočanec, D.; Lovrenčić, I.L.; Lončarek, K.; Džakula, A. Role and perspectives of informal care: A qualitative study of informal caregivers in the Republic of Croatia. BMJ Open 2023, 13, e074454. [Google Scholar] [CrossRef] [PubMed]
- Mendes, P.N.; Figueiredo, M.L.F.; dos Santos, A.M.R.; Fernandes, M.A.; Fonseca, R.S.B. Sobrecargas física, emocional e social dos cuidadores informais de idosos. Acta Paul. Enferm. 2019, 32, 87–94. [Google Scholar] [CrossRef]
- Reblin, M.; Ketcher, D.; Vadaparampil, S.T. Care for the Cancer Caregiver: A Qualitative Study of Facilitators and Barriers to Caregiver Integration and Support. J. Cancer Educ. Off. J. Am. Assoc. Cancer Educ. 2022, 37, 1634–1640. [Google Scholar] [CrossRef] [PubMed]
- Seow, H.; Bainbridge, D. A Review of the Essential Components of Quality Palliative Care in the Home. J. Palliat. Med. 2018, 21, S37–S44. [Google Scholar] [CrossRef]
- Papadakos, J.; Ugas, M.; Quartey, N.K.; Papadakos, C.; Giuliani, M.E. Assessing the Comprehensive Training Needs of Informal Caregivers of Cancer Patients: A Qualitative Study. Curr. Oncol. 2023, 30, 3845–3858. [Google Scholar] [CrossRef]
- Septian, R.B.; Anita, A. How is Home-Based Palliative Care Implemented in Developed Countries? An Integrative Review. Home Health Care Manag. Pract. 2025. [Google Scholar] [CrossRef]
- Sathiananthan, M.K.; Crawford, G.B.; Eliott, J. Healthcare professionals’ perspectives of patient and family preferences of patient place of death: A qualitative study. BMC Palliat. Care 2021, 20, 147. [Google Scholar] [CrossRef] [PubMed]
- Klarare, A.; Rasmussen, B.H.; Fossum, B.; Hansson, J.; Fürst, C.J.; Hagelin, C.L. Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers’ experiences of specialist palliative home care teams. Eur. J. Cancer Care 2018, 27, e12948. [Google Scholar] [CrossRef] [PubMed]
- Ruiz-Junco, N.; Morrison, D.R. Empathy as care: The model of palliative medicine. Society 2019, 56, 158–165. [Google Scholar] [CrossRef]
- Sarmento, V.P.; Gysels, M.; Higginson, I.J.; Gomes, B. Home palliative care works: But how? A meta-ethnography of the experiences of patients and family caregivers. BMJ Support. Palliat. Care 2017, 7, 390–403. [Google Scholar] [CrossRef] [PubMed]
- Matos, J.; Querido, A.; Laranjeira, C. Spiritual Care through the Lens of Portuguese Palliative Care Professionals: A Qualitative Thematic Analysis. Behav. Sci. 2024, 14, 134. [Google Scholar] [CrossRef]
- Wicaksono, R.B.; Muhaimin, A.; Willems, D.L.; Pols, J. Family Perspectives on Key Elements of Good Home Palliative Care in South and Southeast Asia: A Scoping Review. Home Health Care Manag. Pract. 2024, 36, 290–303. [Google Scholar] [CrossRef]
- Zarzycki, M.; Morrison, V. Getting back or giving back: Understanding caregiver motivations and willingness to provide informal care. Health Psychol. Behav. Med. 2021, 9, 636–661. [Google Scholar] [CrossRef]
- Vitorino, J.V.; Duarte, B.V.; Ali, A.M.; Laranjeira, C. Compassionate engagement of communities in support of palliative and end-of-life care: Challenges in post-pandemic era. Front. Med. 2024, 11, 1489299. [Google Scholar] [CrossRef]
- European Institute of Health and Sustainable Development. Health Workforce Demand and Supply: Portugal; EIHSD: Vilnius, Lithuania, 2022. [Google Scholar]
Analytic Phases | Description |
---|---|
| This phase involves a comprehensive analysis and evaluation of transcripts. |
| The codes are allocated to concepts pertinent to the research question. |
| The codes are classified, and themes emerge from the data. |
| At this stage, the themes are reviewed by the research team. |
| At this point, the researcher provides an exhaustive analysis of the thematic framework. The themes are identified, outlining a relationship among them. |
| The themes are developed and conveyed in a report format. |
FGD 1 | FGD 2 | FGD 3 | FGD 4 | ||
---|---|---|---|---|---|
Number of Participants | 12 | 8 | 7 | 7 | |
Age (Mean ± SD) | 42.3 (10.9) | 41.3 (9.53) | 45.3 (8.32) | 35.6 (6.49) | |
Sex | Female | 10 | 8 | 5 | 7 |
Male | 2 | 0 | 2 | 0 | |
Profession | Nurse | 6 | 6 | 5 | 5 |
Doctor | 2 | 1 | 2 | 1 | |
Social Worker | 1 | 0 | 0 | 1 | |
Psychologist | 3 | 1 | 0 | 0 | |
Advanced training in PC | 8 | 5 | 4 | 2 |
Main Themes | Subthemes |
---|---|
IC needs and motivations for providing care | (a) The heterogeneity of the IC profile |
(b) The complexity of illness trajectories | |
(c) Care as a sense of duty | |
Perceived barriers to good-quality palliative home care | (a) Limited access and late referral to specialized PC |
(b) A lack of social responses | |
(c) The wear and exhaustion of ICs | |
(d) Poor literacy in PC | |
Perceived enablers of good-quality palliative home care | (a) Formal and informal support networks |
(b) The quality of bonds with community teams in PC | |
(c) Respect for preferences and wishes | |
(d) The systematization of the IC training process |
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content. |
© 2025 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Marrazes, V.; Gonçalves, L.; Querido, A.; Laranjeira, C. Informal Palliative Care at Home: A Focus Group Study Among Professionals Working in Palliative Care in Portugal. Healthcare 2025, 13, 978. https://doi.org/10.3390/healthcare13090978
Marrazes V, Gonçalves L, Querido A, Laranjeira C. Informal Palliative Care at Home: A Focus Group Study Among Professionals Working in Palliative Care in Portugal. Healthcare. 2025; 13(9):978. https://doi.org/10.3390/healthcare13090978
Chicago/Turabian StyleMarrazes, Vanessa, Laura Gonçalves, Ana Querido, and Carlos Laranjeira. 2025. "Informal Palliative Care at Home: A Focus Group Study Among Professionals Working in Palliative Care in Portugal" Healthcare 13, no. 9: 978. https://doi.org/10.3390/healthcare13090978
APA StyleMarrazes, V., Gonçalves, L., Querido, A., & Laranjeira, C. (2025). Informal Palliative Care at Home: A Focus Group Study Among Professionals Working in Palliative Care in Portugal. Healthcare, 13(9), 978. https://doi.org/10.3390/healthcare13090978