The informal caregiver’s experience: caring for a cancer patient parent in times of crisis. A qualitative research
Abstract
The current study researches variability of experiencing caregiving, the positive and negative emotional impact on informal caregivers, as well as the importance of familial, socioeconomic and sociocultural factors in Greece. IPA, a subject-centered qualitative approach, was used to explore meaningful insights of three young women that were primary caregivers to their cancer patient parents. Participants expressed feeling lonely due to unmet needs by the institutions, lack of psychological support, strained family relationships and not enough support by their partners. Extended family members, friends and communities played a more positive role on the issue. Existential loneliness was also felt by all three participants. Witnessing cancer at the end of life, was reported as very traumatic, causing them high levels of distress, anxiety and other trauma related symptoms. Being empathic witnesses to their parent’s illness trajectory though, gave them a sense of meaning, feelings of connectedness, compassion, affection, humbleness and appreciation of life. Further research is needed to synthesize current literature dichotomies.
Introduction
While informal caregiving encompasses a significant portion of the population and occupies substantial periods of their lives, it remains largely underexplored in its intricacies and is often overlooked both in Greece and internationally. The present research aims to explore how young informal caregivers experience and make sense of caring for their cancer patient parent at the end-of-life. The importance of the familial and societal context of the caregiver and how lack of palliative care and other support strategies in Greece affects their quality of life and caregiver burden. In the first section, main findings in existing literature are described. In the second section, specific context and risk factors in Greece are outlined. Finally, specific informal caregiving challenges related to cancer at the end of life are presented, as they contribute to the particular experience of caring patients at this stage.
Literature Review
In the European Quality of Life Survey (EQLS, 2016), Greece leads all European countries in the percentage of individuals offering informal care regularly, with 34% of the population involved. This figure is twice the European average of 17%, highlighting the considerable importance of informal caregiving in Greece. Most of those informal caregivers are women at a stunning 63.5%, typically family members, outnumbering men in this role.
Informal caregiving (IC), refers to the unpaid and often non-professional assistance and support provided by family members or friends to individuals dealing with chronic illnesses, disabilities, or other conditions (Roth et al., 2015). These caregivers typically offer support in “activities of daily living” (ADLs) or “instrumental activities of daily living” (IADLs) (Edemekong et al., 2023). The caregiving is informal in the sense that it is not performed by trained or hired professionals but by family members who take on the role voluntarily to support their loved ones (Roth et al., 2015). Existing literature largely indicates that family caregiving is often a challenging role, adversely impacting the physical and emotional well-being of caregivers. With the rise in life expectancy and associated dependency, family caregivers will remain the primary source of care for many individuals across both developed and developing nations. Consequently, caregiver burden is expected to persist as a major public healthcare issue for the future, influencing millions of people’s quality of life globally (Del-Pino-Casado et al., 2021). According to a recent conceptualization of caregiver burden, it may be defined as “the level of multifaceted strain perceived by the caregiver from caring for a family member and/or loved one over time” (Liu et al., 2020).
While much caregiving research tends to emphasize negative outcomes, in a review study, Brown (2014) argues that an overall negative evaluation of informal caregiving is unjustified, when methodological and theoretical constructs are put into scrutiny. She posits that existing studies often overlook positive caregiver data, which, when considered, reveal improvements in caregiver well-being, health, and longevity. In a comprehensive survey involving individuals dedicating an average of more than 40 hours per week to care at the end-of-life, it was discovered that a significant majority expressed that providing assistance "enables me to appreciate life more" (69.4%), "makes me feel good about myself" (70.2%), and "makes me feel useful and needed" (76%) (Brown et al., 2014). When measures assessing positive affect and well-being are included in research, family members and loved ones are found to express significant satisfaction with their caregiver roles. Individuals may not feel distressed if they trust they will possess adequate resources to handle the situation. Informal caregiving, where family members or acquaintances willingly offer assistance to a person in need within their capabilities and with no new threats, may not align with the conceptual definition of a stressful situation (Roth et al., 2015). These propositions aligned with evolutionary theories of altruism, may affect research and theoretical frameworks, as well as caregiver evaluation, treatment, and policy making (Brown et al., 2014).
Informal Caregiving in Greece
The prolonged financial crisis that hit Greece since 2008 had a major negative impact on the Greek Health System. Along with the recent COVID-19 pandemic, they put both public and private healthcare in an enormous strain (Kondilis et al., 2013) (Panoutsopoulou, 2023). A study conducted by the Greek Ministry of Health in 2017 concerning palliative care on a national level, estimated that in 2019 there was a density of 47.6 doctors per 10,000 inhabitants with no shortage, but unfortunately a density of 49.1 nurses-midwives per 10,000 inhabitants with a shortage of 19.7 per 10,000 inhabitants (or 20,339 in absolute numbers). Given the workload of 13.8 patients per nurse in public hospitals, a significant portion of informal caregivers (58.1%) spent over 17 hours per day by their patient's bedside. The majority of them were married females in their late forties (Stavrianou et al., 2018).
According to the Atlas committee, about 60.000 patients are in terminal stage each year (a 37% of cancer), and 120.000 in total in need of palliative care services. Due to lack of proper legislation and insufficient infrastructure as well as limited in-home health care services, only 4% of the terminally ill is supported professionally, leaving caregiving in the shoulders of their families (Greek Ministry of Health, 2017).
A recent study by Goula et al., (2021) evaluated what patients expect and how they perceive Greek public health services. Results emphasized the importance of addressing patient expectations, highlighting key factors such as open communication, individualized attention, sensitivity, polite behaviour, a trusting atmosphere, and improved physical facilities. The findings, consistent with past surveys, underscored the human aspect quality gap as a critical area for improvement. To enhance healthcare services, hospital managers can systematically measure quality and develop policies accordingly. Additionally, health policymakers should view the health budget as a developmental tool, focusing on economic development and people's well-being through public dialogue.
Gender equality is a core element for informal caregiving. In Greece, women have made strides in education and workforce participation, with many pursuing higher education and professional careers (Gender Equality Index, 2022). However, traditional gender roles still influence aspects of their lives, especially in conservative or rural areas (Evason, 2019). The country’s deteriorating economy and exacerbated gender disparities, are making women more vulnerable to their consequences. Inequalities in all societal aspects and stereotypes, are risk factors for women, exposing them to gender discrimination and exploitation. The Gender Equality Index 2022 from the European Institution for Gender Equality reveals that Greece lags behind the EU average in gender equality, ranking last in the index. Prioritizing these issues on a government level is imperative, necessitating the implementation of measures to narrow gender gaps and cultivate an environment that upholds equality and protects women's rights. Recognizing that women's experiences differ from men's, is crucial to ensure their representation at the policy-making level (EIGE, 2022). In the 2023 elections though, a modest one fourth of parliament members were women.
One of the few relevant studies conducted in Greece (Govina et al., 2014) revealed that women, unmarried individuals, those already experiencing greater psychological distress, and caregivers tending to patients with poor performance status, severe symptoms, and higher anxiety levels, were among the Greek family caregivers reporting increased difficulty in caregiving duties. Additionally, more likely to report spending a substantial amount of time on caregiving tasks, were the unmarried caregivers, the younger individuals, those with young children, and those attending to patients with severe symptoms and suboptimal health outcomes. This quantitative survey concluded that further exploration is indeed necessary to better understand the factors that could anticipate the burden experienced by caregivers, particularly in response to the severe illnesses of their loved ones.
Gender remains a significant determinant of distress among both patients and caregivers, with females generally reporting higher levels of distress compared to males. Notably, female caregivers as opposed to male caregivers, typically dedicate more time to caregiving tasks, handle more complex care responsibilities, perceive less social support, and encounter additional non-cancer-related stressors on top of the challenges associated with cancer care (Northouse et al., 2012).
Cancer and end-of-life caregiving
Cancer stands as the second most prevalent cause of death on a global scale, contributing to 1 in 6 deaths, in the year 2018 (WHO). The latest estimates for EU Member States in 2022 reveal that approximately one out of every three men and one out of every four women are projected to receive a cancer diagnosis before turning 75 (European Cancer Information System, 2023). The global burden of cancer remains on the rise, factoring in population aging. Low- and middle-income countries in particular, where health systems often face challenges in coping with this burden, leaves a substantial portion of cancer patients worldwide lacking access to timely and high-quality diagnosis and treatment. Conversely, in countries with robust healthcare systems, the survival rates for various types of cancers are improving, attributed to accessible early detection, high-quality treatment, and effective survivorship care (WHO 2020).
McLeroy et al, (1988), presented a Social-Economical Model containing five risk factors for cancer ICs: intrapersonal, interpersonal, institutional, community, and policy factors.
The experience of informal caregiving to cancer patients with grim prognosis is examined in a recent systematic research (Chong, et al., 2021). Both quantitative and qualitative data of the caregiver’s experiences were examined and coded in three themes: caregiver burden, unmet needs and quality-of-life. Information concerning the burden experienced by caregivers was consolidated into a specific subtheme that focused on the challenges associated with managing symptoms. Unmet needs data was categorized into three subthemes: the need for enhanced clinical communication, the requirement for aid and updates tailored for caregivers, and the need for assistance in dealing with the complexities of the healthcare system. Statistics on quality-of-life reveal that more than one third of ICs of cancer patients experience notable anxiety and depression levels (Chong et al., 2021). Emotional distress is prominent in female ICs, reporting feelings of sadness, diminished wish for regular activities, disturbed sleeping patterns, or challenges in their relationships with partners or children (Kirk et al., 2022). Similar results were offered in a clinical review (Adelman et al., 2014) of caregiver burden cohort studies that examined risk factors like social status and demographics as well as the negative consequences of caregiver burden: it may result in depression, social isolation, financial strain, low educational attainment etc. Above all, the review stressed the importance of providing diagnostic and assessment strategies to physicians in order to recognize caregiver burden and act according to the specific context to provide support.
Patients with advanced cancer often experience significant distress, leading to increased burden on caregivers, with almost half of ICs experiencing one or more mental health conditions, with anxiety being the more prominent one (Rumpold et al, 2016). While some patients learn about their advanced cancer at diagnosis, many are progressing to this stage over time. ICs of patients with a short prognosis may experience intensified depressive symptoms. As the end nears, caregivers may report depressive symptoms surpassing clinical thresholds, linked to dysfunctional family dynamics, feeling deserted, external work-related demands, and patient symptom distress (Bahrami et al, 2023).
As patients approach the end of life, concerns arise about ICs' declining health due to reduced engagement in healthy behaviours. A study of ICs for patients with ovarian cancer at late-stage, revealed 42% of ICs had less exercise, 35% had heightened body mass, and 12% increased alcohol intake. Distressed ICs with heightened responsibilities, had worse health behavioural alterations. Despite being a primary prevention area, few interventions protect ICs’ own health (Given et al, 2012).
Effective interpersonal relationships within families, among patients, their ICs and healthcare providers, becomes crucial as patients near the end and caregiver burden intensifies. Cohesive families with less conflict report lower caregiver burden, potentially due to increased support from other family members. Better marital relationships in couples correlate with lower caregiver depression and reduced caregiving difficulties. Enhanced relationships with healthcare providers correlate with improved self-reported health outcomes and reduced feelings of abandonment. Despite the importance of maintaining family relationships, few interventions focus on strengthening these connections as a crucial aspect of care at the end of life (Sales et al, 1992).
Although informal caregiving involves such a vast part of the population for considerable periods of their lives, it remains largely understudied in its complexities and quite invisible in Greece and abroad. As shown above, being a family caregiver at the end-of-life, is a complex and multifaceted commitment, an experience that is more nuanced than statistical reports can detect, and at times with conflicting emotions for the caregiver. No qualitative research has been done in Greece about the topic to capture the sensibilities and repercussions of this experience as to better inform and enrich quantitative research. Turning this condition visible within the public sphere, may also help advocate for interventions in the healthcare system like palliative care, as well as mobilize community networks and family systems to improve informal care. The current study aims to vividly portray how each of these young women experienced the passing of their parent standing on their bedside, providing practical and emotional support till the end; how this experience influenced their own lives and personalities; and the importance of their families, friends, clinicians and health infrastructure as support system through this difficult time.
Research Question:
I. How participants make sense of caregiving and the emotional impact this experience had on their lives.
Method
Design
Semi-structured, one-to-one interviews were conducted to provide a balance between flexibility and structure. This approach allows participants to freely express their experiences while still ensuring that specific topics of interest are covered. The semi-structured format enables researchers to explore participants' narratives in-depth while also maintaining consistency across interviews, facilitating the analysis process.
Further, Interpretative Phenomenological Analysis (IPA) was employed. IPA is a method suitable for approaching complex and emotionally laden phenomena (Smith, Flowers & Larkin, 2021; Willig, 2013; 2022). Phenomenology is an approach that focuses on the study of conscious experience from the perspective of the individual subject. It seeks to understand the structures of subjective experience, including perception, thought, emotion, and consciousness, without imposing preconceived theories or assumptions (epoche). IPA is thus emphasizing the subjective experiences of individuals and the meaning they attribute to those experiences. On the other hand, IPA is interpretative as It acknowledges that reality is constructed through subjective interpretation and seeks to understand the essence of these interpretations (Pietkiewicz et al., 2012). IPA researchers are aiming for the quasi-unattainable goal to align with the subject’s perspective and try to interpret it in a meaningful way in order to reveal the participant’s unique world (Smith, Flowers & Larkin, 2021; Willig, 2013; 2022). This dynamic process is actively involving the researcher who formulates essential questions and is focusing on the particular before going into generalizations. This idiographic approach is illuminating each case to make sense and inform the interpretation of the next case, discovering by comparison or contrast which themes are important to better describe the individual’s psychological condition. Hence, IPA is a suitable qualitative research approach as it emphasizes depth over breadth and explores participants' experiences in rich detail, capturing the nuances and complexities of their lived experiences (Smith et al., 2021; Pietkiewicz et al., 2012).
Participants
IPA typically employs purposive sampling, selecting participants who have experienced a particular phenomenon of interest (Smith et al., 2022). In the current research, a small homogenous convenience sample was selected: three Greek women between the ages of 33 to 52 (27 to 51 when they acted as ICs), from relatively different socioeconomic backgrounds (Table 1). They all hold higher education degrees and reside in the capital of Greece, Athens. They shared the experience of acting as primary caregivers to their parents dying from cancer. The caregiving period extended to roughly one year and they were assisted in this commitment in different degrees by other persons. Patients received treatment in different premises, public or private hospitals and homebound treatment. The incidents took place during the last 5 years and at least a year prior to the interview to allow distance from the bereavement period. Their names were changed to protect their anonymity. Hospital and health professional names were omitted for confidentiality purposes.
Procedure
Ethical approval for the present study was obtained from the ICPS Research Ethics Committee concerning risk assessment, informed consent, research proposal outline, letter of information, semi-structured interview questions and participant debrief information (Appendices 1-7).
The interviews took place in household settings for the convenience, comfort and privacy of the interviewees. The participants were already informed about the research by a letter of information that was emailed to them a week prior to the interview (Appendix 5). They were also informed about their rights as participants and confidentiality protocols used (British Psychological Society, 2021). Due to the sensitive content of the survey, they were provided with information on cancer caregiver’s support organisations (i.e., the International Cooperation K.E.F.I.-O.A.C.) they could reach if they felt they needed psychological assistance after the completion of the interviews. After signing the informed consent form and initiating in a friendly conversation, the audio recording started on the researcher’s laptop. Special precautions were taken for safely storing the data collected. After the completion of the interviews, an email with debrief information was sent to the participants (Appendix 7).
One-hour semi-structured interviews in Greek served in data collection (Appendices 8-10). The interviewer adopted a phenomenological stance, encouraging participants to reflect on their experiences and articulate their subjective perspectives, particularly focusing on the emotional states they were experiencing while fulfilling their caregiving duties, as well as their current sentiments regarding their stories.
Interviews were transcribed verbatim from the audio recordings and were then analysed using a systematic and iterative process. First author (CK) immersed herself in the data by reading and re-reading the transcripts, gaining a holistic understanding of the participants' experiences. Significant statements or phrases within the transcripts were underlined with notes taken on the right side of the page. They were also coded, aiming to capture the essence of the participants' experiences. Codes were grouped upon reflection, demonstrating similarities, juxtapositions and relationships. Selected parts from the interviews were translated into English with some minor adjustments done to make texts more accessible to the reader. Prominent emotional and situational patterns emerging from the data led to the selection of two major themes, with several subthemes in each one of them (Appendix 5). Those concepts were then interpreted in relation to existing literature and theoretical frameworks in order to explore meaningful insights and possible implications of the themes examined. Participant’s verbatim quotes illustrating key themes were incorporated into the analysis.
Researcher’s role
Due to CK’s personal experiences both as informal caregiver as well as cancer survivor herself, extra caution was taken to avoid personal assumptions, biases and preconceptions that might be influencing data interpretation. CK was constantly supported and advised by her supervisor to enhance credibility and trustworthiness of the findings. These reports aim to convey the invaluable experience of these caregivers.
Analysis
Two major themes were selected for analysis, “Loneliness” and “Witnessing” along with several subthemes (Appendix 10).
Loneliness
Loneliness is commonly defined as a subjective emotional state marked by distress, arising when individuals perceive a gap between their desired and actual social connections. It may involve feelings of isolation, emptiness, and a lack of connection with others, even when surrounded by people (Gray et al., 2019). Loneliness is not just about being physically alone but also about feeling disconnected and unsupported in social interactions (Perlman et al., 1981). It can have significant psychological and physical health implications if it persists over time (Heinrich et al., 2006).
While usually concern over loneliness is directed towards the elderly and adolescent, the emotional and physical repercussions on ICs of cancer patients, is prompting a growing literature on this issue (Gray et al., 2019). (CK) too found unanimous and persistent feelings of loneliness in this research. During the challenging time of caregiving that extended from 8 to 15 months, the interviewees had to leave their own lives, work, family, prioritizing the support of their parent. They reported feeling lonely on most occasions and contexts:
Nora: “I had no life... I was with my father 24/7…completely alone. I had pushed myself so much to stand on my own feet because if I didn't exist, there was no one.”
Jane felt disconnected: “I was like a visitor in the rest of my life, I mean, outside the hospital.”
Moreover, caregivers of cancer patients often experience anticipatory grief and bereavement. Following the death of their loved one, caregivers have reported heightened feelings of loneliness (Gray et al., 2019).
Anna: “The first few months I was very sad and very confused let's say, and I was
constantly running to doctors and trying to figure things out. When I realised
what was happening and what would happen and it somehow settled within me,
then I had the luxury to mourn. Because in essence I was mourning before she
died.”
Two of the cases took place during the pandemic. Social distancing is a common obligation for caregivers that support immunocompromised oncological patients. But the intensified hospital protocols during Covid-19, led to increased social isolation and loneliness (Kloecker et al., 2022). Nora explained:
“My father's cancer story happened during the pandemic...This created additional
difficulty in managing the situation; it wasn’t easy having people come to the
hospital to support.”
Unmet needs by the institutions
Loneliness could be seen as the inverse of social support. When individuals feel that their fundamental instrumental, psychological and social needs are not adequately addressed or supported by the institutions they are part of, such as schools, communities, or the health system in this case, individuals may feel vulnerable and lonely (Yanguas et al., 2018).
Nora experienced the inefficiency of the public healthcare system early on, when she called for an ambulance, while her 84year-old father was in delirium and bleeding at her home:
“The ambulance took eight hours to arrive because when I told them he was bleeding, I don't know how they assessed it...they told me on the phone that they had much more urgent cases involving accidents.”
A similar feeling of abandonment by the public healthcare system is expressed by Anna:
“While my mother had never been ill until she was 80, she had never burdened the system, she had paid numerous insurance contributions, when she really needed help, there was no support for her.”
Her mother suffered from pancreatic cancer and Anna along with the oncologist prepared the end-of-life planning, taking the difficult decision not to proceed to chemotherapy. Both mother and daughter spent most of the illness trajectory at home, but when the symptoms climaxed, Anna was faced with the terrible lack of palliative care services:
“People who don't need therapy but need care at the end of their lives...that's a huge void... A void and an economic burden for the family that has been burdened with the care of a sick person. I mean, even if there wasn't any facility, if there was just someone who knew how to take care of them and be there...”
She eventually had to take her dying parent at a private hospice: “if I didn't have that money, it would have been tragic to be alone with a dying person at home. Without any help.”
Jane’s father was hospitalized in a private unit, and although she reported positively on his medical treatment, she realized how cognitively and emotionally unprepared she was to respond to these circumstances. According to a recent review analysis (Walbaum et al., 2023), one third of family caregivers to oncological patients, feel emotionally unprepared and lonely:
“I'm angry with the educational system...nobody tells you anything...you're deep down on your own”.
Lack of psychological support
Loneliness can be exacerbated by a lack of psychological support. When individuals feel unsupported in managing their emotional well-being or navigating life's challenges, it can intensify feelings of isolation and disconnection (Gray et al., 2019). Nora although generally satisfied by the care doctors and nurses provided to her father at the public hospital, reported that there was no psychologist available, leaving her completely alone and unsupported:
“There was no psychologist to support the patients, and even more so to support
the caregivers...we were completely alone over there, I felt a huge loneliness.”
Anna too, had no access to mental health services: “I really would have liked to have support from a psychologist, I really needed it”.
Psychological support was missing in the private hospital premises as well. As Jane contested:
“I hadn't even searched; I had no idea. Wouldn't they have informed us? Nothing, all on my own.”
Family ties
Loneliness can also be influenced by the quality of family relationships. Family, as one of the primary social units, plays a significant role in shaping an individual's sense of connection and belonging. When family relationships are strained, distant, or lacking in support and understanding, it can contribute to feelings of loneliness (Cacioppo et al., 2015). Nora had no siblings or relatives to turn to:
“As an only child and without any help from my mother's side because I lost her
over 20 years ago, I was called to face this essentially on my own.”
Life events such as the loss of a family member can disrupt family dynamics and contribute to feelings of loneliness, particularly if individuals experience a sense of loss or disconnection from their family unit. Although Anna has a brother she couldn’t count on, she found support from a member of her extended family:
"There is no one else, my mother lived alone...I have a brother who wasn't suitable to take care of her…I didn't talk to my cousin about how I feel but still, having someone to talk to about what will happen and what I will do next and all that, gives a lot of relief”.
Jane had two siblings that didn’t meet her expectations:
“With my siblings, I had enormous anger...instead of having all his children around him and standing up for him in difficult times, because ideally, I didn't want to be there either...I was thinking, if it were you Jane and you had to face death, would you want everyone to leave?”
She was very appreciative though of the fact that she was caring for her father in the company of her stepmother and aunt:
“Being a caregiver alone compared to being among three caregivers, it’s a big
deal. You don't feel alone. So yes, I will say that the most important thing was that
we were three caregivers and there was thus a kind of spontaneous support.”
A “good-enough” partner
Close, supportive relationships can buffer against loneliness. But according to Perlman et al. (1981), the dissatisfying quality of intimate relationships is correlated with experiencing loneliness. Jane felt her partner could not empathize enough with what she was going through at the time:
“My partner... I can't say he didn't support me at all, he just lost it at some point
towards the end... He was thinking more about himself instead of thinking about
me...He couldn't support me.”
In Nora’s case, she felt that her husband was unable to provide emotional and instrumental support even on a basic level, leaving her exhausted, frustrated and lonely. Nurturing here takes both a literal and a metaphorical sense:
“I got angry with my husband too, I could understand his inability to support me more practically because he had an autoimmune disease...but I would return home at night after spending all day at the hospital and find the fridge empty. Then I understood that the issue of empathy is a very difficult one...I mean, it's not easy for someone to really empathize with you.”
Effective communication between spouses is essential for fostering understanding, empathy, and emotional support. When communication is lacking, individuals may feel isolated and disconnected from their partner (Pereira et al., 2015). Anna didn’t express anger, accepting what her husband had to offer with an undertone of hopelessness:
“I could talk, the issue is how much he could understand. I had the support I have
with other issues…it's not that...the support increased…he was there, I knew
he was there...he took care of the child. I could tell him how I felt, but I couldn't
have any feedback. Everyone does what they can.”
Friendship, community ties and levels of loneliness
Loneliness and friendships have a complex relationship. On one hand, friendships can be a crucial source of support, companionship and belonging, helping to alleviate feelings of loneliness. Strong, meaningful friendships provide opportunities for emotional connection, shared experiences and mutual understanding, all of which are essential for combating loneliness (Cacioppo et al., 2015). Anna had her childhood friend that she could turn to:
“I had my friend Tina, all my life she's there when I need her”.
On the other hand, differences in expectations and needs within friendships can contribute to feelings of loneliness. Jane felt generally supported by her best friends, but not fully understood in this grim circumstance:
“I had my best friends who in difficult times have supported me very much[...]but even they, they can't experience it like one does.”
Loneliness is not solely determined by the number of friends a person has but by the quality of those relationships. Individuals may feel lonely even when surrounded by acquaintances if they lack deep, meaningful connections with others (Weiss, 1973). While Nora had some support from friends that were sporadically there for her “Luckily, there were some beloved friends who brought me food to the hospital sometimes”, she overall felt her friends didn’t meet her expectations. She was positively surprised though from the support she had from her broader community members. As she explained:
“There was also indifference from the friendly environment, I mean, there were let's say 6-7 people who were very close to me, there was a next circle of people who rushed to donate blood for my father…and I was amazed by people who I couldn't even imagine would help so promptly, but there were also people that…I felt were very close friends of mine, but they were absent. And with whom I was really, very angry.”
She also felt connected with people that were sharing the experience she was in at the hospital, insinuating a patients/carers community structured around illness:
“We became friends with the people there. We exchanged phone numbers...with some, we kept in contact. I mean, you come close. The illness brings you close.”
Existential loneliness
Existential loneliness refers to a profound sense of emptiness, disconnection or isolation that arises from an individual's contemplation of existential inquiries on the significance and purpose of life, their place in the world and the inevitability of their own mortality (Peplau et al., 1982). In Moustakas’s words “true loneliness stems from the reality of . . . facing life’s ultimate experiences (i.e. birth, death, change, tragedy) [and] can be a creative force” (Moustakas, 1961). In contrast to social loneliness, which stems from a deficit in social connections, existential loneliness is rooted in a deeper existential crisis. While it may negatively influence the caregiver, it is also likely to possess a positive dimension when meaning is attributed to the experience (Applebaum et al., 2016).
Nora is highlighting both aspects that often coexist back-to-back, in her emotionally loaded words:
“I felt tremendous loneliness during this period of my father's illness, it was perhaps the hardest trial I've been through in my life, but also the greatest, harsh gift…you become human through these experiences”.
Jane described this experience as “brutal”, revealing to her an aspect of life she wasn’t aware of before:
"That's when I realized that life can be very beautiful, but it's also very harsh.
And it's not given freely, it's not about whether you're good or bad, or if they'll give
it to you because you' re kind or noble. That for me was a huge shock. To see
death, I saw death every day.”
Existential loneliness can be permanent is some cases, involving a sense of hopelessness (McKenna-Plumley et al., 2023). Anna had to re-orient her position in life after the passing of her mother, expressing a deep and lasting existential loneliness:
“When they die in your hands, you forget that you're sad and you have to call the funeral office, you have to fill out the papers, you have to bury them...And when all this is over, when the first days have passed…you have the condolences and all that…you're alone again…You are not someone’s child anymore”.
Witnessing
The concept of witnessing is particularly relevant in the context of trauma psychology, where individuals may be exposed to traumatic events either as victims or as witnesses. Vicarious witnessing of traumatic events can have profound psychological effects, including symptoms of post-traumatic stress disorder (PTSD), such as intrusive memories, avoidance behaviours, and heightened arousal (APA, DSM-5, 2023).
The extent of trauma's impact varies based on several factors influencing the eyewitness experience, including their proximity to the event, their reactions during the incident, and their relationship with the victims, the level of helplessness felt at the time, and exposure to subsequent consequences (SAMHSA, 2014).
Furthermore, witnessing (or empathic witnessing) can also refer to the act of bearing witness to someone else's experiences or emotions, providing validation, empathy, and support. In therapeutic contexts, the process of witnessing can be a crucial aspect of healing, as it allows individuals to share their stories, feel understood, and integrate their experiences into their sense of self and identity. However, empathic witnessing can also occur in everyday interactions, such as between friends, family members, or colleagues, when individuals offer empathic support and validation to one another during times of distress or difficulty (Glossary of Psychology, 2024).
Witnessing suffering
Because of the Public Health System crisis in Greece, the tragic decline of staff and services is likely to make public hospitals surroundings heavy to deal with. Nora described her witnessing of other patients suffering in what she called “prison like environment”, adding to her feelings of helplessness:
“The para-medical staff...to see people abandoned without relatives in hospitals,
abandoned not always intentionally by their relatives, we are talking about
people who are very poor and whose relatives may have been working and
couldn't be there, with no supportive family network and the patient being
alone...I considered it a terrible cruelty not to give water, not to feed the person
who was in a tragic condition.”
Being caregiver to a terminally ill cancer patient may be particularly traumatic because of the sudden deterioration of the patient.
Nora: “He was a person who had never been bedridden, a person who at 83 could take
care of himself and drive a car, and suddenly found himself in a bed, with his
hands tied because there were times when he would throw respirators... oxygen,
he would pull catheters, pull gastrostomies, and the doctors thought he should be
tied up, and you can understand how psychologically terrifying and heavy it was,
both for my father himself and for me seeing a person being tied up as if he were a
criminal and undergoing a kind of torture…Cancer is a harsher disease, you
witness the breakdown of the human body and human personality, there is a
decline that is shocking and you see this decline.”
Extended cancer treatment for end-stage patients in private hospital settings, may come at a cost for the patient and their caregivers. Dr. Gyawali suggests prioritizing endpoints like quality of life and overall survival in clinical trials for new drugs, as they are more meaningful to patients (Gyawali et al., 2022). Jane’s father was on trial medical treatment while there was little hope for positive outcomes. Jane stood by his bedside and recalls in despair this moment:
“I remember his eyes very vividly when they told him "Mr. P. we will perform a
second nasogastric intubation…in the pancreas "…He already had two bags. And I
remember his eyes rolling when the doctor entered the room and told him that…He
was like Christ… he was crucified like Christ”.
Anna also expressed profound sadness for the ending, laconically attesting: “the last moments were tragic”.
Professional caregivers like nurses, often report compassion fatigue (Walsh, 2009), but for family caregivers it is hard to keep distance even when the suffering they are witnessing is prolonged and unbearable. Jane felt impelled to go through this till the end:
“Who wants to be with a person who sees death every day and which you too see
it. No one wants to. But it's not possible, you can't leave.”
Her compassion made her identify with her father’s emotions “my sadness came from
what he might feel and think”.
Nora also reports repeated traumatizing by being present every day in the hospital expressing feelings of anxiety, pain and guilt:
“It's like being forced every day to go through a traumatic experience, to be
psychologically tortured, to be tied up psychologically and to be told every day
"now you will experience terrible emotions. Now you will die from your
psychological pain…To wish for my father to die…you really reach a point where
you say that because what you see is so painful. What really hurt me a lot and
traumatized me was the way my father died, it wasn't just the fact of death itself, it
was the tragedy of death from cancer.”
Anna’s mother survived more months than her physicians predicted, with no pain treatment needed, in her household. The impeding end and separation made Anna wanting to spend as much time as possible and be present by her side despite her own suffering:
“I couldn't say "oh let her die an hour earlier" because then it's so final. And you
say it's okay let me suffer, at least she's there and I see her.”
Witnessing and trauma effects
Witnessing a traumatic event may cause individuals to question fundamental assumptions about existence. The traumatic experience can challenge or disrupt the person's core beliefs or life perspectives, such as those concerning safety, trust in others, fairness, life's purpose, or future aspirations (SAMHSA, 2014). Jane experienced her father’s passing as a disruptive life event that led her to a zero point:
“Caregivers, especially when you have to do with a person you love, who is yours
and you are the caregiver of this person, especially when he leaves this life, you
have a trauma. Period. You have seen death in front of you, the person you love
has gone, goodbye life... it's very hard to come out alive and face the world again.
From scratch.”
Nora reported typical trauma effects like hyperarousal and difficulty sleeping:
“I would go home and then I couldn't sleep because I had all the images of horror
in my head, all the things I had experienced with my father.”
Traumatic stress often elicits two emotional extremes: experiencing an overwhelming flood of emotions or feeling emotionally numb (SAMHSA, 2014). Anna explained how she felt:
“You can't be too emotional in this situation. Neither the one who's dying nor the one
taking care of them can. You couldn't live it dramatically every day because it was
too much time.”
Triggering is an important aspect of trauma, a stimulus that brings back traumatic memories:
Nora: “I have it as a trauma and the truth is that I often push away the thought of my
father, I do that because every time I think of him, and think of the scenes, I push
it away.”
Jane stated a similar reaction and shared how even a reminiscent memory can emotionally overwhelm her:
“I can't watch a movie that has this disease…when hospitals start, chemotherapy
and so on... whether it is about a young child…an old man or an old woman, I
can't handle it…whomever experiences it in the movie, it's the same… process
that hits that point and emotion, I mean it's like experiencing it again.”
Empathic witnessing
A critical clinical consideration in comprehending the effects of trauma is the significance that survivors attribute to the traumatic event. The survivor's individual cognitive interpretations of the experience, including their beliefs and assumptions, play a crucial role in how they process, respond to, cope with, and eventually recover from the trauma (SAMHSA, 2014).
While being a family caregiver is stressful physically and emotionally, relevant literature tends to dismiss the possible positive aspects of caring. In the current research, findings seem to point that “the medicine came from the poison”. A profound sense of altruism, feelings of compassion and affection between the dying parent and the caregiving child were expressed deepening their connection during that challenging period of time. All three participants reported no regret for taking upon the role of caregiver, despite witnessing so much pain. Anna recalled “the moment of love” she shared with her mother, that stays precious within her to this day:
"Anna, I never wanted you to see me in this condition," I don't know if I was
crying already, I tell her "mom, you know I love you, right?" and she says to me "I
love you very much too." I tell her " I love you, and as long as I'm here, you'll
never be alone, you should know that." And she says to me "I know"”.
Jane also recalled with tenderness a deeply humane and saddening scene with her father and the heartfelt connection she felt with him:
“While I was massaging his feet, he started to cry...I said to him, "Dad what's
wrong, don't worry everything will be fine." He stopped and didn't say anything.
After ten minutes he said to me, "I don't want to be misunderstood, it's not that I'm
afraid, but I'm moved by the amount of love you're showing me." And there I
collapsed, bending over his feet so he wouldn't see me, and I cried so much, silently.
It was something very intense, our gazes in the hospital without speaking...there was
complete communication and support with just a glance.”
Nora kept a diary in the hospital with her father’s words, she even documented that period by taking pictures till the end. She recalls their relationship “getting even stronger”:
“I played the roles of nurse, priest, and psychologist for my father. And truly, with
my father, we had discussions where I had to support him psychologically and
spiritually, meaning we talked about life after death...because we both believed in
that, and I also believed that somehow this thought had helped me a lot and it
helped him too…In the hospital it doesn't matter who you are, it doesn't matter how
educated you are, how rich you are, who you are, you must be humble. And
ultimately, we all must be humble in the face of illness, serious illness, and in the
face of death. In there, there is no distinction.”
Discussion
The aim of the present study was to explore how informal caregivers experienced and made sense of caregiving for their parents suffering from cancer. As the analysis of the first theme revealed, the participants reported feelings of abandonment from institutional inefficiencies that led them to financial, physical and emotional exhaustion. Access to much needed psychological support for patients and ICs, was impossible either because they were not informed by the hospital social services and related NGOs, or because it was practically non-existent.
Although participants reported having some support from their broader community members, they felt generally not understood and lonely during that period. They felt closer to people inside the hospital that were undergoing the same struggles. Friends were also relatively supportive, especially when friendships were long standing. Nora though, reported having almost no support from friends that she was counting on, deepening her feelings of loneliness, despair and anger.
Partners and spouses were also reported to provide little to no support both instrumentally and emotionally. ICs felt poorly understood and unsupported, lonely and sad and occasionally angry at their spouse. Siblings were not supportive in all three cases, either because they were incapable of doing so, or because they refrained from participating in the care of their parent, leaving ICs undertaking this difficult task alone. Familial support came mostly from extended family members alleviating some of the caregiving burden. Finally, the participants reported high levels of existential loneliness during and after the experience of caregiving. Re-evaluating relationships, the meaning of life and the limits of existence, came as painful realizations for the caregivers.
As the analysis of the second theme reflected, being a witness to the sudden deterioration of their dying parent was experienced as extremely traumatic by the ICs on the current survey. Highly pervasive medical interventions to treat metastatic cancer and the very nature of the disease, had extreme physical and mental repercussions for the patients and their caregiver’s quality of life. Participants reported symptoms of trauma effects, such as depression, anxiety, guilt, helplessness, hyperarousal and poor sleeping patterns, emotional numbness, triggering, disruption and avoidance. A somewhat more balanced experience was reported by one of the participants whose parent was treated at home for most of the illness trajectory.
Along with the struggles and suffering, being present and providing practical, emotional and spiritual support to their parents, was experienced as a deeply transformative experience by the caregivers. They reported feelings of compassion, love and affection, gratitude, pride, fulfilment, satisfaction and connectedness with their parent. This act of altruism or giving back what their parents had offered them when they were children, was felt as a deeply humane experience. Seeing their parents holding on to their dignity and reciprocating their loving feelings of deep attachment till the end, was appreciated as life’s harsh gift.
Strengths and limitations
Whilst quantitative research literature is very important in providing information about informal caregivers to cancer patients, addressing such a complex situation on a large scale though, with binary questionnaires and relevant methods, may lead to dichotomies in the outcomes. Either by stating that caregiving has only a negative impact on those acting, or by supporting positive outcomes in these studies, the reality of caregiving is much more nuanced. ICs may suffer from caregiving burden, physical and mental problems, their overall quality of life may be seriously compromised, and yet find meaning, purpose and positive feelings along with suffering. On the other hand, the present qualitative research proved efficient in approaching the human condition in its richness and provide a better understanding in order to seek for solutions to these really hard challenges. Such a multifaceted topic also demands multidisciplinary approaches to address a spectrum that expands from institutional and societal problems to interpersonal relationships and intrapersonal struggles. Personal feelings of utter loneliness may be elicited even by faceless institutions. Apart from active caregiving, witnessing such hard deaths may be particularly traumatizing, including visually traumatizing. Research should clarify such issues and propose novel coping and therapeutic strategies.
Time and length limitations for the present essay restricted the analysis to just a few themes, while the interviews offered an incredibly rich material. Further exploration is needed to capture in more depth what these informal caregivers experienced. Some limitations also involve the translation of certain idiomatic phrases (e.g. «να στέκονται σπαθί», as “standing up for”) and in general losing some nuances from the testimonies in Greek. Emotional charge of the author due to her personal experience as IC and cancer survivor proved also at times challenging in balancing and interpreting the interview material.
Future research
Incorporating multiple analytic strategies within the same context in future research on informal caregivers, would enhance and deepen our understanding, enriching our epistemological stance. The use of multiple analytic methods provides additional insight into different facets of the participant's narratives, thereby uncovering the complexity of their accounts more comprehensively. For instance, taking into consideration that “language is the means by which participants attempt to communicate their experiences” (Willig, 2013:94), future studies can explore not only the participant’s experiences, but also the way they talk about these experiences within a specific context.
Practical implications
New mRNA therapies are very promising in treating effectively or even preventing cancer (Qin et al., 2022), and science is advancing in all fronts shedding a ray of light in the lives of patients and their caregivers. Until then, the current estimates by health organizations on the growing number of cancer cases should alarm and inform policy makers and society at large. The findings of the present research work, may be a starting point to rethink the pivotal role of informal caregivers and take into consideration the vicissitudes they experience. Public health systems sustenance should become a priority. In Greece particularly, building a nationwide palliative care system is imperative. All efforts by stakeholders should align to advocate, legislate, finance, realize and populate palliative care organizations. Access to mental health providers should also become easier for patients and ICs, with better information and more psychologists available within hospitals and outside of them.
On a societal level, raising awareness on the reality of informal caregiving adversities and benefits, might make ICs feel more understood and integrated. Promoting informal communities to support ICs, might also provide considerable assistance. Early psychoeducational interventions in schools might break the social taboo of illness and death and provide context and coping strategies to individuals. Communication and cultural interventions might make this issue visible and more appreciated.
It is also crucial to underline the gender axis of caregiving and promote gender equality. Historically, caregiving roles were assigned to marginalized groups, with women being primarily responsible for essential caregiving tasks. Despite being central to human life, care is often undervalued. Joan Tronto (1993), a political theorist, argues that care is a viable political ideal in liberal, pluralistic, democratic contexts, and should be seen even beyond its psychological aspects. The absence of care from core values, reflects societal choices about what to honour.
Conclusions
Public Health system in Greece is strained, resulting in poor services and leaving a big part of caregiving on the shoulders of patient’s families. ICs to oncological patients have to spend enormous time and effort to support family members at the end-of-life with no palliative care system to assist them. Participants reported feeling lonely and isolated, with little to no support from institutions and society. As they explained, they experienced limited support by their families and partners, deepening their feelings of loneliness, emotional distress, anxiety and occasionally anger, along with intense existential loneliness. Friends, extended family members and communities were more supportive instrumentally and emotionally. Being present at the end of their parent’s life from cancer, was perceived as traumatizing and at the same time appreciated by ICs as a very humane and transformative experience, providing them with a sense of meaning and purpose, along with feelings of compassion, affection and connectedness. The current IPA study was able to depict how the experience of informal caregiving may be experienced as both negative and positive emotionally by the same individual for different reasons. Further qualitative research might help understand this complex condition, in order to provide better interventions in all levels to support informal caregivers.
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