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Citation: Guerra-Martín, M.D.; Casado-Espinosa, M.D.R.; Gavira-López, Y.; Holgado-Castro, C.; López-Latorre, I.; Borrallo-Riego, Á. Quality of Life in Caregivers of Cancer Patients: A Literature Review. Int. J. Environ. Res. Public Health 2023, 20, 1570. https://doi.org/10.3390/ ijerph20021570 Academic Editor: Paul B. Tchounwou Received: 21 December 2022 Revised: 11 January 2023 Accepted: 12 January 2023 Published: 15 January 2023 Copyright: © 2023 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/). International Journal of Environmental Research and Public Health Review Quality of Life in Caregivers of Cancer Patients: A Literature Review María Dolores Guerra-Martín1, María Del Rocío Casado-Espinosa 2, Yelena Gavira-López 2, Cristina Holgado-Castro 3, Inmaculada López-Latorre 4and Álvaro Borrallo-Riego 1,* 1Department of Nursing, Faculty of Nursing, Physiotherapy and Podiatry, University of Seville, 41009 Seville, Spain 2Faculty of Nursing, Physiotherapy and Podiatry, University of Seville, 41009 Seville, Spain 3Valme Hospital, Andalusian Health Service, 41014 Seville, Spain 4Quirónsalud Maternal and Child Hospital, 41013 Seville, Spain *Correspondence: [email protected] Abstract: (1) Background: Cancer constitutes one of the principal causes of morbi-mortality in the world and generates an important loss of patients’ self-sufficiency. People who are their caregivers usually become the main care providers, which impacts their quality of life; (2) Aim: Analyze the different problems (physical, emotional, social, and financial) faced by people who are caregivers of adults with cancer and describe the strategies required to improve their quality of life; (3) Method: A literature review was conducted on the following database: PubMed, Cinahl, PsycINFO, and Scopus. The following eligibility criteria were specified: (a) research studies of quantitative, qualitative, or mixed methods, (b) consistent with objective, and (c) published in the English language or Spanish during the last five years; (4) Results: 36 studies were selected from those found in the literature. Regarding the problems mentioned: eight studies described physical issues, 26 emotional effects, 10 social implications, and seven financial strains. Twenty-eight studies described strategies to improve the quality of life of caregivers; (5) Conclusions: Caregivers are usually women around the age of 50. Problems faced are mostly emotional in nature, followed by social, physical, and financial ones. In order to cope with this burden, there are some strategies that can be developed to help to build skills to manage both the disease and the impact derived from it, therefore improving their quality of life. Keywords: caregivers; neoplasms; nursing care; quality of life; social problems 1. Introduction Cancer is considered the disease of the 21st century, as it is a leading cause of mortality and morbidity in the world [ 1 ]. According to the WHO, cancer is one of the leading causes of death through disease and its cure is still unsolved despite the advances in diagnosis and treatment [ 2 ]. The International Agency for Research on Cancer estimated that in the year 2020, 18.1 million cases of cancer were diagnosed worldwide, and this number will increase in the following two decades, reaching 27 million [3]. Cancer, as other chronic diseases, has numerous sequelae and an important limitation of self-sufficiency, thus requiring support from other people, usually from their immediate circle. Those people are known as informal or non-professional carers. The role of these caregivers is key in aiding and supporting cancer patients, however, they may experience a significant burden at numerous levels, causing an impact in their quality of life [4,5]. According to different authors, there is an inverse correlation between burden and quality of life in the caregivers of patients with cancer [ 6 ]. At the same time, being the caregiver of a care-dependent person implies 86% risk of suffering anxiety, and 65% of suffering depression [7]. Int. J. Environ. Res. Public Health 2023,20, 1570. https://doi.org/10.3390/ijerph20021570 https://www.mdpi.com/journal/ijerph
Int. J. Environ. Res. Public Health 2023,20, 1570 2 of 23 Diverse studies have profiled non-professional caregivers, concluding that they are mostly women, aged 45 to 65, homemakers, and the daughter or spouse of the patient [ 8 , 9 ]. Besides, 39% of caregivers have no education and the average time devoted to provide care is 10.9 h per day [5]. Cancer causes devastation at physical, emotional, and social levels to people who suffer it and their families [ 10 ]. Epidemiologic data show that 40–50% of people diagnosed with cancer suffer from a high degree of physical and psychosocial pain along the whole oncological process, where 30% of patients asked for professional support. Family caregivers undergo an adaptation and acceptance process with regard to the disease, facing numerous tasks with high level of stress, which result in physical, emotional, social, and financial draining, therefore affecting their quality of life [11,12]. Given the significant exhaustion of informal caregivers, studies regarding their quality of life have gained importance in the last few years within the health sphere [ 13 ]. The concept quality of life is greatly influenced by the social context experienced by the individual and the relationship this person establishes with everything that surrounds her or him [ 14 ]. In this sense, the WHO has defined the term quality of life as the perception that each individual has of her/his own position in the cultural context and system of values she/he is experiencing, and this is closely related to this person’s goals, expectations, life standards, and concerns [15]. Different authors have described both dimensions and indicators embodied by the quality of life, as follows: 1. Physical well-being dimension, being its indicators health, nutrition, leisure, mobility, and the capacity to develop daily life basic activities. 2. Emotional dimension, comprising indicators, such as happiness, sense of security, spirituality, self-concept, and absence of stress or fear. 3. Social dimension, with indicators based on interpersonal relationships, such as family, friends, received support, social status, work environment, role in the community, etcetera. 4. Dimension of material well-being, including indicators related to the individual’s rights, socioeconomic status, safety, and employment [16–19]. In this respect, the objective of this review is focused on analyzing both problems and improvement strategies which are associated with the quality of life of people who are caregivers of adults with cancer. 2. Materials and Methods 2.1. Study Design and Search Strategy A literature review was conducted on PudMed, Cinahl, PsycINFO, and Scopus during the months of February and May 2022. The studies’ search strategy was defined by consensus between the authors in order to avoid bias for not including relevant studies [ 20 ], namely: [(“Quality of Life” OR “Social Problem”) AND Neoplasm AND (Caregivers OR “Nursing Care”)]. 2.2. Eligibility Criteria Eligibility criteria for studies were presented with the greatest transparency and clarity in order to control selection bias [ 21 ]. Those eligibility criteria were: (1) Research studies following a quantitative, qualitative, or mixed method. (2) Regarding the issues associated to people who provide care to adults with cancer. (3) People aged 18 or older. (4) Published in the English or Spanish language during the past five years (2017–2022). 2.3. Selection of Articles Studies were selected in four stages. The first of them consisted in the search and localization of studies on the database through the selected search strategy. The second stage comprised the elimination of duplicates. The third stage was devoted to titles, keywords, and abstracts reading of the selected studies, choosing those consistent with the review subject and according to the eligibility criteria. A fourth stage consisted of a critical reading of the full texts of the selected articles.
Int. J. Environ. Res. Public Health 2023,20, 1570 3 of 23 2.4. Data Analysis Evidence drawn from selected studies included: 1. Author/s and year. 2. Objective. 3. Country/Period of the study. 4. Type of study/Instrument/Sample. 5. Main findings. Data were collected in a table following the recommendations of author Del Pino et al. [ 20 ]. 3. Results 3.1. Description of the Studies Of the 1812 studies initially identified, 36 were selected as being consistent with the review objective and eligibility criteria (Figure 1). Int. J. Environ. Res. Public Health 2022, 19, x FOR PEER REVIEW 4 of 22 Figure 1. Selection of studies flowchart. 3.2. Study Outcome 3.2.1. Characteristics of the Sample of Caregivers of Adults with Cancer The total sample comprised 7663 people caregivers with an average age of 54.42 years. However, it must be highlighted that 10 studies did not describe average age [22– 31]. With regard to sex, 66.72% of caregivers were women. As for family bonds, 15 studies described these caregivers as being mostly spouses or daughters/sons of the patients with cancer, usually sharing the same home [22,23,25–28,30,32–39]. 3.2.2. Problems (Physical, Emotional, Social, and Financial) of People Who Are Caregivers of Adults with Cancer In relation to physical problems, eight studies [25,34,37,40–44] described that care work implies a greater risk for caregivers of suffering physical morbidity with considerable wear, which in fact increases as the care burden continues over time. It is also observable that physical and health problems are more frequent in female caregivers, and physical damage results in a worse quality of life perceived by caregivers. Figure 1. Selection of studies flowchart. With regard to their typology, 28 studies followed a quantitative research method. Twenty-two of them were descriptive, exploratory, or based on observation; four were randomized controlled trials; one was an experimental controlled trial; and one was a case–control study. In the remaining studies, seven followed a qualitative research method and one, a mixed method. Specific characteristics of these studies are detailed in Table 1.
Int. J. Environ. Res. Public Health 2023,20, 1570 4 of 23 3.2. Study Outcome 3.2.1. Characteristics of the Sample of Caregivers of Adults with Cancer The total sample comprised 7663 people caregivers with an average age of 54.42 years. However, it must be highlighted that 10 studies did not describe average age [ 22 – 31 ]. With regard to sex, 66.72% of caregivers were women. As for family bonds, 15 studies described these caregivers as being mostly spouses or daughters/sons of the patients with cancer, usually sharing the same home [22,23,25–28,30,32–39]. 3.2.2. Problems (Physical, Emotional, Social, and Financial) of People Who Are Caregivers of Adults with Cancer In relation to physical problems, eight studies [ 25 , 34 , 37 , 40 – 44 ] described that care work implies a greater risk for caregivers of suffering physical morbidity with considerable wear, which in fact increases as the care burden continues over time. It is also observable that physical and health problems are more frequent in female caregivers, and physical damage results in a worse quality of life perceived by caregivers. At an emotional level, 26 studies [ 22 , 23 , 25 – 30 , 33 – 36 , 38 , 40 – 52 ] alluded to the emotional and psychological problems suffered by caregivers, highlighting anxiety, depression, feelings of grief and distress, and high levels of stress. Therefore, showing that, the longer the care was needed over time, the greater the tension and emotional burden, resulting in worse quality of life. With regard to social aspects, 10 studies [ 24 , 25 , 27 , 31 , 32 , 41 , 49 , 53 – 55 ] described how the patients’ disease process has affected the social interaction of caregivers, who manifest a great difficulty in reconciling their role as caregivers and the development of other daily activities, highlighting the deterioration of working conditions. The studies conclude that less social support is related to worse quality of life. In the economic sphere, 10 studies [ 25 , 27 , 39 , 44 , 53 , 56 , 57 ] described the financial problems of people caregivers, resulting from the costs associated with the disease, the lack of financial support of other family members, or the difficulty of reconciling their role as caregivers with their work activity. The studies show that caregivers with higher income levels perceive a better quality of life. 3.2.3. Strategies to Improve the Quality of Life of Caregivers of Adults with Cancer Among the strategies described, 10 studies [ 28 , 29 , 31 , 32 , 36 , 39 , 41 , 50 , 54 , 57 ] emphasized the need of enhancing social support by means of reinforcing the support networks and facilitating access to support groups and associations. Thirteen studies [ 23 , 24 , 27 , 30 , 32 , 35 , 37 , 38 , 45 – 47 , 49 , 54 ] indicated the need of developing coping strategies to improve the management and control of both the situation and the emotional strain, and also to help increase training in caregivers, thus improving their self-efficacy while reducing the emotional impact. One study [ 53 ] included the completion of breathing exercises and counseling sessions to reduce emotional strain. One study [ 34 ] suggested exercising practice to improve the perceived health levels on the part of caregivers. One study [ 39 ] pointed out the need of providing financial support to caregivers in order to improve their well-being. Four studies [ 22 , 24 , 44 , 48 ] highlighted the need of training properly health professionals on existential and spiritual distress management, as well as the need to identify groups at risk and reassigning tasks among all family members. One study [ 26 ] described that health professionals require cultural awareness in order to properly meet the needs of caregivers.
Int. J. Environ. Res. Public Health 2023,20, 1570 5 of 23 Table 1. Characteristics of the selected studies. Author/s and Year Objective Country/Period Type of Study/Instrument/Sample Main Findings Arias-Rojas et al., 2022 [32] To adapt and validate a LatAm-Spanish version of the QOLLTI-F scale applied to family caregivers of patients in palliative care. Colombia/May to November 2019 Quantitative study (descriptive) Instrument: QOLLTI-F. Sample: 208 caregivers (44 men and 164 women, average age: 49.67 years) Deterioration of social interaction, medical care, and meaning of life. Caregivers are mostly women, daughters, or spouses/partners. They showed low quality of life, being the emotional dimension the most affected, with a significant increase in anxiety and depression levels. Strategy: Consider essential to detect exhaustion in the role of caregiver. Social support is required, besides developing strategies which allow a better management and control of the situation. This coping mechanism must be also addressed to reduce emotional impact. Benites et al., 2022 [22] Understand the spiritual and existential experiences of family caregivers of patients with advanced cancer facing end of life in Brazil. Brazil/June 2018–March 2019 Qualitative study through interviews Sample: 16 caregivers (3 men and 13 women, average age: non-described) Family caregivers experienced existential and spiritual distress in the form of guilt, emotional repression, and loneliness when facing end of life. Strategy: It is required to provide training to health professional on the management of existential and spiritual distress of caregivers. Sadigh et al., 2022 [56] (1) Validate the instrument Comprehensive Score for Financial Toxicity (COST) modified in non-professional caregivers of patients with cancer, (2) Identify factors associated with financial toxicity both in patients and caregivers, and (3) Evaluate the impact of financial toxicity in specific aspects of both patients and caregivers. USA/January– September 2019 Quantitative study (observational cross-sectional) Instrument: questionnaire COST for non-professional caregivers, FACT-G, CarGOQoL, Brief-POMS, and MCSDS. Sample: 100 caregivers (45 men and 55 women, average age: 56.6 years) Caregiving generates financial toxicity for caregivers due to costs growth and income loss. This financial toxicity may be even increase when care provision extends over time and the burden on the caregiver is greater. Increase of financial toxicity of caregiver correlates with higher care non-adherence in patients, increased lifestyle-altering behaviors, and low quality of life.
Int. J. Environ. Res. Public Health 2023,20, 1570 6 of 23 Table 1. Cont. Author/s and Year Objective Country/Period Type of Study/Instrument/Sample Main Findings Kassir et al., 2021 [36] Evaluate if psychosocial distress among caregivers of patients with head and neck cancer is associated with a difference in how caregivers and their patients perceive patients’ quality of life. USA/August 2019–April 2020 Quantitative study (cross-sectional) Instrument: UWQOL, PHQ-8, and GAD-7 Sample: 47 caregivers (14 men and 33 women, average age: 62.6 years) Caregivers were predominantly women and spouses or partners of the patient, with a dedication to care exceeding nine hours/week. Most caregivers had spent more than one year providing care. Caregivers perceived their quality of life in a more negative way than patients with cancer, showing considerably greater levels of distress. Strategy: Facilitate meetings between patients and caregivers which allowed them to express their thoughts and feelings about the disease process and thus share how their own well-being was affected. Lim et al., 2021 [40] Examine the lifestyle of caregivers of family members with cancer, particularly the meaning of leisure and focusing on their difficulties and the role of leisure. South Korea/Period: Non-described Qualitative study through interviews. Sample: −10 caregivers (1 man and 9 women, average age: 44.7 years) Caregivers showed high levels of stress and both psychological and physical conflicts, resulting in poor quality of life. Caregivers described that leisure was necessary and could improve their quality of life; however, indicated feeling of guilt when engaging in personal activities. Nayak and George, 2021 [53] Determine the effectiveness of multicomponent intervention on quality of life of family caregivers of cancer patients. India/November 2016–February 2019 Quantitative study (case and control) Instrument: QOLLTI-F. Sample: 200 family caregivers (78 men and 122 women, average age: 41 years) Non-professional caregivers had to face financial problems due to the disease condition of their loved one. Lack of financial support received from other family members influenced their low quality of life. Likewise, caregivers faced difficulties in their work life and family relations. Strategy: Yoga breathing exercises, counselling and training conducted by yoga therapists. The program resulted effective in improving the quality of life of caregivers.
Int. J. Environ. Res. Public Health 2023,20, 1570 7 of 23 Table 1. Cont. Author/s and Year Objective Country/Period Type of Study/Instrument/Sample Main Findings Abbasi et al., 2020 [57] Determine the relation between care burden and quality of life of caregivers of patients with cancer in a referral hospital in Iran. Iran/2018 Quantitative study (cross-sectional) Instrument: SF-36, Caregiver Burden Inventory. Sample: 154 family caregivers (46 men and 108 women, average age: 41.30 years) Increase of care burden resulted in a significant decrease of quality of life of caregivers. Besides, it was found that married caregivers had better quality of life than single ones, and caregivers with mid-high incomes reported a higher quality of life in comparison with those having a lower income. Strategy: It is recommended to reinforce and expand the support networks for caregivers of patients with cancer. Facilitate access to self-help associations. El-Jawahri et al., 2020 [45] Evaluate viability and preliminary efficacy of multimodal psychosocial intervention for family caregivers of patients undergoing hematopoietic stem cell transplantation designed to improve quality of life, burden, mood, and self-efficacy of caregivers. USA/December 2017–April 2019 Randomized controlled trial Instrument: CarGOQOL, CRA, HADS, CASE-T, and MOCS. Sample: 100 caregivers (28 men and 72 women, average age: 61 years) Caregivers of patients experience psychological problems (depression and anxiety) and has an overload of care throughout the care process. Strategy: Psychosocial multimodal conducted by a team of oncologists and psychologists. Caregivers who were randomized to the intervention group reported better quality of life, less overload, less anxiety and depression symptoms, more self-efficacy and coping skills when compared to the control group. Halkett et al., 2020 [35] Explore the lived experienced by caregivers of patients diagnosed with head and neck cancer. Australia/November 2018–June 2019 Qualitative study through interviews. Sample: 20 caregivers (1 man and 19 women, average age: 56 years) Caregivers showed high levels of distress processed without the support of their partners or families, with the aim of minimizing patient’s distress. Silent suffering reveals the importance of communication and sharing to mitigate distress levels. Strategy: Offer training to caregivers on the disease management, fostering communication and support to reduce anxiety and distress levels. This would help to face changes in lifestyle resulting from their role as caregivers.
Int. J. Environ. Res. Public Health 2023,20, 1570 8 of 23 Table 1. Cont. Author/s and Year Objective Country/Period Type of Study/Instrument/Sample Main Findings Pereira et al., 2020 [46] Assess the relation between sociodemographic, clinical, and psychological variables with quality of life and the moderating role of caregivers’ age and the caregiving duration in caregivers of patients with multiple myeloma. Portugal/Period: Non-described Quantitative study (cross-sectional) Instrument: HADS, SSSS, CarGOQoL, CAMI, BIS, and SF-SUNS. Sample: 118 caregivers (45 men and 73 women, average age: 58.67 years) Study shows that family caregivers are mostly women, patients’ spouses, or elder daughters. The burden in caregivers has been associated with high levels of stress and fatigue due to concern, insecurity, and social isolation. Besides, most caregivers possess no skills which guarantee their own well-being. Strategies: Develop coping strategies through psychological intervention programs. These strategies have been associated with a better attitude of the caregiver, which would help to lessen the emotional impact of caregivers and improve their quality of life. Reblin et al., 2020 [41] (1) Describe communication quality between patients with cancer and their spouse caregivers through observation methods, and (2) evaluate the association between communication patient-caregiver and psychological and physical health. USA/Period: Non-described Quantitative study (prospective observational) Instrument: HADS and PSS. Sample: 81 caregivers (23 men and 58 women, average age: 64.95 years) Communication difficulties in partner carers of patients with cancer causes discomfort in the latter, as well as emotional and physical health issues in both. Strategy: provide caregivers opportunities to express their concerns and communicate their emotional needs outside their relationships, and thus improve their well-being. Facilitate the access to support groups, reducing the possible logistic barriers that may prevent caregivers to attend. Titler et al., 2020 [47] Assess participants’ acceptability of the FOCUS program, a psychoeducational intervention, delivered to multiple patient–caregiver dyads in a small-group format. USA/Period: Non-described Mixed study Instrument: FOCUS Satisfaction Instrument. Sample: 36 caregivers (16 men and 20 women, average age: 55.9 years) The lack of communication between patient and caregiver generates depression, anxiety, and distress issues. Strategy: Psychoeducational conducted by nurses. Participants felt the benefits of being able to speak their mind about their concerns and listen to other people’s thoughts, as well as the openness and ease of talking to other couples in similar situations.
Int. J. Environ. Res. Public Health 2023,20, 1570 9 of 23 Table 1. Cont. Author/s and Year Objective Country/Period Type of Study/Instrument/Sample Main Findings Abdullah et al., 2019 [48] Examine quality of life in relation with health in caregivers of patients with gastrointestinal cancer in combination with sociodemographic factors and other related with caregiving. Malaysia/September 2017–February 2018 Quantitative study (cross-sectional) Instrument: CSI-M, MSPSS-M, and MCQOL. Sample: 323 family caregivers (103 men and 220 women, average age: 44.50 years) Caregiver’s sex, ethnicity, and strain, as well as duration of caregiving provision were significantly associated with their quality of life. There was an inverse relationship among caregiving strain, duration of caregiving, and caregiver’s quality of life. Strategy: Health professionals must be able to identify groups at-risk, offering them the resources needed to improve their quality of life, including psychological therapy and access to support groups. Baudry et al., 2019 [33] Identify the profiles of caregivers at higher risk of having at least one moderately or highly unmet supportive care need based on socio-demographic and clinical variables highlighted in the literature. France/18 months; year not further specified. Quantitative study (descriptive cross-sectional) Instrument: SCNS-P&C-F, and HADS. Sample: 364 caregivers (131 men and 233 women, average age: 58.05 years) The main problem of caregivers lies in the risk of suffering anxiety and depression depending of the type of cancer of the relative they provide care to. Likewise, caregivers show difficulty in controlling their emotional state. Strategy: Routine evaluation of anxiety and depression symptoms of caregivers to prevent risk of emotional overload. De Camargos et al., 2019 [23] Analyze and compare what oncologic patients, non-professional caregivers, and healthy population think could make them happy. Brazil/October 2015–October 2016 Qualitative study through interviews. Sample: 126 caregivers (28 men and 98 women, average age: non-described) Among problems or concerns suffered by caregivers, there is risk of depression, anxiety, and distress. Strategy: Develop psychoeducational and cognitive-behavioral strategies which help to improve the caregivers’ quality of life. These strategies should be addressed to cope with emotional overload derived from caregiving, among other concerns.
Int. J. Environ. Res. Public Health 2023,20, 1570 16 of 23 Table 1. Cont. Author/s and Year Objective Country/Period Type of Study/Instrument/Sample Main Findings Lee et al., 2017 [52] Explore the mood changes and quality of life in caregivers of patients with head and neck cancer and examine the prevalence and risk factors of depressive disorders among caregivers of patients suffering this type of cancer. Taiwan/February 2012–January 2013 Quantitative study (prospective) Instrument: SCID-CV, HADS, SF-36, and Family APGAR Index. Sample: 132 caregivers (30 men and 102 women, average age: 47.2 years) During the 6-month follow-up, depression and anxiety severity in caregivers decreased, which significantly improved their quality of life. After six months, most prevalent psychiatric disorders were depression-related, followed by alcohol abuse and primary insomnia. Study revealed that older ages, the use of hypnotic drugs, pre-existing depression, and lower mental component of SF-36 score at baseline were found to significantly predict depressive disorders in caregivers of patients with these types of cancer. Mollica et al., 2017 [30] Examine association between the receipt of medical/nursing skills training and the caregiver burden as well as the mediation of caregiving confidence on this relationship. USA/Period: non-described Quantitative study (cross-sectional) Instrument: ZBI (short version), 2 questions to measure receipt of medical/nursing skills and 1 question to measure the caregiver’s training. Sample: 641 caregivers (125 men and 516 women, average age: non-described) Caregivers reported moderate levels of burden. Lack of receipt of training was associated with greater levels of burden in their role as caregivers. Confidence partially mediated the relation between training and burden. Strategy: Authors highlighted the need of empirical studies which evaluate if training in medical/nursing skills for caregivers of patients with cancer may have an impact in the outcomes of caregivers over time. Senneseth et al., 2017 [31] (1) Measure the short-term effects of the Cancer-PEPSONE received social support, psychological distress, and quality of life of partners, and (2) explore social support received as a mediator of the intervention effects. Norway/ December 2013–June 2015 Open single-center randomized controlled trial. Instrument: CSS, MSPSS, GHQ-12, QOLS-N Sample: 35 caregivers (21 men and 14 women, average age: non-described) The control group referred a significant decrease in perceived social support. According to this study analysis, CPP may have indirect effects in the short term on the caregivers’ quality of life through social support received. Strategy: The intervention group received a 3-h session. Evaluation: Firstly, psychoeducative aspects analyzing challenges associated to the disease and social support. Then, individual needs of each family were analyzed, exploring the resources required for each case. BIS: Burden Interview Scale; Brief-POMS: Brief-Profile of Mood States; CAMI: Community Attitudes to Mental Illness; CarCOQol: Caregiver Oncology Quality of Life questionnaire; CASE-T: Cancer Self-Efficacy Scale-Transplant; CBS: Caregiver Burden Scale; CCI: Charlson Comorbidity Index; CES-D: Center of Epidemiological Studies of Depression Scale; CNAT-C: Comprehensive Needs Assessment Tool for Cancer Caregivers; CQLI-R: Caregiver Quality of Life Index-Revised; CQOLC: Caregiver Quality of Life Index-Cancer; CRA:
Int. J. Environ. Res. Public Health 2023,20, 1570 17 of 23 Caregiver Reaction Assessment; CSI-M: Caregiver Strain Index-Malay; CSS: Crisis Support Scale; DAS-7: 7-Item Dyadic Adjustment Scale; EQ-5D-3L: EuroQol five-dimension three-level; FACT-G: Functional Assessment of Cancer Therapy—General; FCCT: Family Caregiver Communication Tool; GAD-7: Generalized Anxiety Disorder-7; GHQ-12: The 12-Item General Health Questionnaire; HADS: The Hospital Anxiety and Depression Scale; HLCS-C: Health Literacy of Caregivers Scale—Cancer; IES-R: Impact of Event Scale—Revised; IPAQ: International-Physical-Activity-Questionnaire; ISEL: Interpersonal Support Evaluation List; KPS: Karnofsky Performance Scale; LCSS: Lung Cancer Symptom Scale; MCQOL: Malay Caregiver Quality of Life scale; MCSDS: Marlowe-Crowne Social Desirability; MHI-18: Mental Health Inventory-18; MOCS: Measure of Current Status; MOS: Mean Opinon Scale; MOS-SSS: Medical Outcomes Study Sleep Scale; MSPSS: Multidimensional Scale of Perceived Social Support; MSPSS-M: Malay Multidimensional Scale of Perceived Social Support; OARS-IADL: Older Americans Resources and Services Scale—Instrumental Activities of Daily Living; PHQ: Patient Health Questionnaire; PSQI: Pittsburgh Sleep Quality Index; PSS: Perceived Stress Scale; PST: Personnel Selection Test; QLQ-C30: Quality of Life Questionnaire-Cancer 30; QoL-FV: Quality of Life-Family Version; QOLLTI-F: Quality of Life in Life Threatening Illness-Family Carer version; QOLS-N: Norwegian version of the Quality of Life Scale; SCID-CV: Structured Clinical Interview for Disorders—Clinical Version; SCNS-P&C-F: Psychometric validation of the French version of the Supportive Care Needs Survey for Partners and Caregivers of cancer patients; SF-SUN: Short Form- Survivor Unmet Needs Survey; SF: Short Form; SSRS: The Columbia-Suicide Severity Rating Scale; SSSS: Social Support Satisfaction Scale; UWQOL: University of Washington Quality of Life questionnaire; WPAI:GH: Work Productivity and Activity Impairment Questionnaire: General Health; ZBI: Zarit Burden Interview.
Int. J. Environ. Res. Public Health 2023,20, 1570 18 of 23 4. Discussion 4.1. Characteristics of the Sample of Caregivers of Adults with Cancer The total sample was made up of 7663 caregivers, 66.72% were women. In this sense, most studies coincide in stating that there are more women caregivers of patients with cancer than men [ 22 – 27 , 29 , 30 , 32 – 57 ]. This data met the results obtained by other authors outside this review, such as Martínez et al. [ 58 ] who conducted research to define the burden of caregivers of patients with head and neck cancer, concluded that the profile consisted of 81% women. On the other hand, the study accomplished by Guijarro-Requena et al. [ 13 ], with the aim of improving the quality of life of caregivers through training initiatives, indicated as well a larger representation of women, reaching 91.9% of the sample. However, there were two studies that described a larger number of male caregivers with respect to women [28,31]. Regarding average age of caregivers of patients with cancer, most of the studies set the interval between ages 45–65 [ 32 – 38 , 40 , 41 , 43 – 52 , 54 – 56 ]. These results coincide with those described by other authors [ 59 , 60 ]. Notwithstanding, in the study by Peredo et al. [ 61 ] analyzing burnout syndrome, anxiety, and depression in caregivers of patients with cancer, 48.7% were among the age interval 20–40 years. In the study by Amador et al. [ 62 ] analyzing psycho-affective features and overburden levels in caregivers of oncologic patients, 48% were women aged 24–29 years. With respect to the familiar bond, the role of caregiver is undertaken by spouses or daughters/sons of people with cancer and usually share the same home [22,23,25–28,30,32–39] . These results are aligned with the conclusions described by other authors [5,8,58,63]. 4.2. Physical, Emotional, Social, and Financial Strain Suffered by Caregivers of Adults with Cancer Different review studies have revealed that care provision on the part of caregivers causes physical problems, increasing the risk of suffering physical morbidity the longer the care activity continues [ 25 , 34 , 37 , 40 – 44 ]. Authors outside this review described how the stressful factors related to care provision considerably affect the physical condition of caregivers, with this impact higher on male caregivers who are older and bearing a high demand of care [ 64 ]. Barrón and Alvarado [ 65 ] indicated that care provision, particularly if prolonged over time, may result in various physical conditions such as: fatigue, headaches, joint pain, dizziness, and worsening of sleep quality to trouble sleeping. Most of the studies [ 22 , 23 , 25 – 30 , 33 – 36 , 38 , 40 – 52 ] have referenced the emotional and psychological problems suffered by caregivers, describing feelings of distress, stress, high levels of anxiety, and even depression. Emotional strain was significantly higher when care provision extended over time. Results obtained are in line with those mentioned by other authors [ 64 , 66 ]. Besides, the study conducted by Rosado et al. [ 67 ], aimed to evaluate the support needs and quality of life of caregivers of pediatric patients with cancer, described that emotional performance was the most damaged in the total score of quality of life index. Regarding social problems, review studies [ 24 , 25 , 27 , 31 , 32 , 41 , 49 , 53 – 55 ] described how social interactions of caregivers were affected to the point of finding it very difficult to reconcile their role of caregivers with the rest of activities, where deterioration of working conditions and lesser social event engagement were highlighted. Caregivers who declared having worse social support showed poorer quality of life indicators. These findings are aligned with other authors’ results, which also indicated deterioration of working conditions, and a decrease of free time to develop daily activities or taking time for themselves. Moreover, the lesser the social support is perceived on the part of the caregiver, the worse the consequences on her/his health, both physical and psychological [66,68]. Several review studies [ 25 , 27 , 39 , 44 , 53 , 56 , 57 ] mentioned the financial problems of caregivers, highlighting among the possible causes, the lack of financial support, the costs derived from the disease process itself, or the difficulty of developing their work activity. Caregivers who reported lower incomes showed worse quality of life indicators. Several authors outside the review reported that difficulties to reconcile the role of caregiver with work activities add multiple financial burdens to caregivers [ 66 ]. The study conducted by
Int. J. Environ. Res. Public Health 2023,20, 1570 19 of 23 Cortijo-Palacios et al. [ 69 ] carried out the Zarit Burden Interview in assessing caregiving burden, revealing high scores in low spending capacity and feelings of financial distress. 4.3. Strategies to Improve the Quality of Life of Caregivers of Adults with Cancer With respect to the strategies to improve the quality of life of caregivers, different studies have pointed out the need of promoting social support, facilitating the access to support networks [ 28 , 29 , 31 , 32 , 36 , 39 , 41 , 50 , 54 , 57 ]. Authors such as Martínez, Lorenzo, and Llantá[ 58 ] have indicated that in order to improve the quality of life of caregivers, both social and family support are key, as they not only allow to hand over some tasks and responsibilities, but they also provide emotional, spiritual, and material support. Review studies have described the need of implementing coping strategies to allow patients to improve the management of their own disease, while developing skills to reduce the emotional and physical impact [ 23 , 24 , 27 , 30 , 32 , 34 , 35 , 37 , 38 , 45 – 47 , 49 , 53 , 54 ]. These findings coincide with those published by other authors such as Pino et al. [ 70 ] who described the need of implementing coping strategies to protect the quality of life of caregivers and thus overcome cognitive, emotional, and behavioral demands faced by both caregiver and family environment. Besides, Pérez et al. [ 71 ] indicated that caregivers of patients with cancer who were able to develop coping strategies, managed to decrease the emotional impact and fatigue feeling. Review studies revealed the need of appraising the economic situation of caregivers [ 25 , 27 , 39 , 44 , 53 , 56 , 57 ]. Authors such as Carreño et al. [ 72 ] have also pointed out this need when facing the high economic burden imposed on caregivers, and that this is not only associated to medical services, but to the lack of labor productivity or even job loss. This financial burden is connected to higher levels of anxiety and distress suffered by caregivers. Authors of the review pointed out that in order to develop the strategies to aid caregivers, it is necessary to properly train health professionals, both in the management of emotional and physical strain, as in covering the spiritual needs and facilitate access to support networks. This requires health professionals to able to identify the most vulnerable groups while considering providing specific health care to all the family [ 22 , 24 , 44 , 48 ]. Moreover, in order to comply with all these needs, health professionals require cultural awareness to understand better the complex requirements of caregivers [ 26 ]. These results are aligned with the findings described by other authors [73]. 4.4. Limitations This review shows some limitations. Shortening the search strategy to the last five years made it impossible to recover all the information available on this subject, though a rigorous process was followed in order to obtain the latest scientific findings. Furthermore, the number of subjects in the sample vary from one study to another. On the other hand, the diversity of the research designs that were employed also limits interpretations. Another limitation is that no tool was used for study quality assessment. 5. Conclusions The vast majority of caregivers of adults with cancer are women around 50 years old, being most commonly spouses or daughters of the patient with whom they usually live. Caregiving generates physical, emotional, social, and financial problems, which cause a burden in caregivers that results in a decrease of their quality of life. To improve their quality of life, different strategies can be implemented: In relation to physical problems, it is recommended exercising practice to improve the perceived health levels on the part of caregivers. At the emotional level, it is recommended, on one hand, enhancing social support by means of reinforcing the support networks and facilitating access to support groups and associations; and, on the other hand, developing coping strategies which improve the management and control of both the situation and the emotional strain. Breathing exercises and counseling sessions to reduce emotional strain have also been
Int. J. Environ. Res. Public Health 2023,20, 1570 20 of 23 described is this regard. In the economic sphere, it stands out the need to provide financial support to caregivers in order to improve their well-being. In order to implement these strategies, it is necessary to train health professionals. Author Contributions: Conceptualization, M.D.G.-M.; methodology, M.D.G.-M. and Á.B.-R.; formal analysis, M.D.R.C.-E., Y.G.-L., C.H.-C. and I.L.-L.; investigation, M.D.R.C.-E., Y.G.-L., C.H.-C. and I.L.-L.; data curation, M.D.R.C.-E., Y.G.-L., C.H.-C. and I.L.-L.; writing—original draft preparation, M.D.G.-M. and Á.B-R.; writing—review and editing, M.D.G.-M. and Á.B-R.; supervision, M.D.G.-M. All authors have read and agreed to the published version of the manuscript. Funding: This research received no external funding. Institutional Review Board Statement: Not applicable. Informed Consent Statement: Not applicable. Data Availability Statement: Not applicable. Conflicts of Interest: The authors declare no conflict of interest. References 1. National Cancer Institute. What Is Cancer? Available online: https://www.cancer.gov/about-cancer/understanding/what-is- cancer (accessed on 3 March 2022). 2. World Health Organization. Cancer. Available online: https://www.who.int/news-room/fact-sheets/detail/cancer (accessed on 3 March 2022). 3. Sociedad Espyearla de Oncología Médica. Las Cifras del Cáncer en Espala. Available online: https://seom.org/images/LAS_ CIFRAS_DEL_CANCER_EN_ESPANA_2022.pdf (accessed on 14 March 2022). 4. González, A.; Fonseca, M.; Valladares, A.M.; López, L.M. Factores moduladores de resiliencia y sobrecarga en cuidadores principales de pacientes oncológicos avanzados. Rev. Finlay 2017,7, 26–32. 5. Zambrano-Domínguez, E.M.; Guerra-Martín, M.D. Formación del cuidador informal: Relación con el tiempo de cuidado a personas dependientes mayores de 65 years. Aquichan 2012,12, 241–251. [CrossRef] 6. Arias-Rojas, M.; Carreño, S.; Sepúlveda, A.; Romero, I. Sobrecarga y calidad de vida de cuidadores de personas con cáncer en cuidados paliativos. Rev. Cuid. 2021,12, e1248. [CrossRef] 7. Domínguez, J.A. Ansiedad y depresión en cuidadores de pacientes dependientes. Med. Fam.-SEMERGEN 2012 ,38, 16–23. [CrossRef] 8. Instituto de Mayores y Servicios Sociales. Cuidados a las Personas Mayores en los Hogares Espyearles: El Entorno Familiar. Available online: http://envejecimiento.csic.es/documentos/documentos/imserso-cuidados-01.pdf (accessed on 27 February 2022). 9. Navarro, V. Perfil de los cuidadores informales y ámbito de actuación del trabajo social. Trab. Soc. Hoy 2016 ,77, 63–83. [CrossRef] 10. Cabrera, Y.; López, E.J.; López, E.; Arredondo, B. La psicología y la oncología: En una unidad imprescindible. Rev. Finlay 2017 ,7, 115–127. 11. Amador-Marín, B.; Guerra-Martín, M.D. Eficacia de las intervenciones no farmacológicas en la calidad de vida de las personas cuidadoras de pacientes con enfermedad de Alzheimer. Gac. Sanit. 2017,31, 154–160. [CrossRef] 12. Mesa, P.; Ramos, M.; Redolat, R. Cuidado de pacientes oncológicos: Una revisión sobre el impacto de la situación de estrés crónico y su relación con la personalidad del cuidador y otras variables moduladoras. Psicooncología2017,14, 93–106. [CrossRef] 13. Guijarro-Requena, M.D.; Marín-Campaña, M.N.; Pulido-Lozano, M.I.; Romero-Carmona, R.M.; Luque-Romero, L.G. Mejora de la calidad de vida en cuidadores informales de personas dependientes mediante talleres educacionales. Enferm. Glob. 2022 ,21, 59–73. [CrossRef] 14. Vinaccia, S.; Quiceno, J.M.; Fernández, H.; Contreras, F.; Bedoya, M.; Tobón, S.; Zapata, M. Calidad de vida, personalidad resistente y apoyo social percibido en pacientes con diagnóstico de cáncer pulmonar. Psicol. Salud 2005,15, 207–221. 15. The WHOQOL Group. The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization. Soc. Sci. Med. 1995,41, 1403–1409. [CrossRef] [PubMed] 16. Schalock, R.L.; Verdugo, M.A. Calidad de vida. In Discapacidad e Inclusión, 1st ed.; Alianza Editorial: Madrid, Spain, 2003. 17. Rogero-García, J. Distribución en España del cuidado formal e informal a las personas mayores de 65 y más years en situación de dependencia. Rev. Espyearla Salud Pública 2009,83, 393–405. [CrossRef] 18. Sala, E. La Calidad de vida de las Cuidadoras Informales: Bases para un Sistema de Valoración. Available online: https://www. seg-social.es/wps/wcm/connect/wss/c3f111db-d9a6-4ee8-adfd-cbd7f9a8e99c/F74_07.pdf?MOD=AJPERES (accessed on 8 March 2022). 19. Villatoro, K.; Sánchez, V. Calidad de vida y calidad de vida relacionada con la salud. In Atención al Tratamiento de las Enfermedades Crónicas Desde el Centro de Salud; Villatoro, K., Sánchez, V., Eds.; Universidad de Valencia: Valencia, Spain, 2012; pp. 29–46. 20. Del Pino, R.; Frías, A.; Palomino, P.A. La revisión sistemática cuantitativa en enfermería. Rev. Iberoam. Enferm. Comunitaria 2014 ,7, 24–39.
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