Factors Influencing the Quality of Life of the Primary Caregiver of a Palliative Patient: Narrative Review

Abstract

Introduction:

Quality of life is a difficult concept to understand and therefore difficult to evaluate. From the general definition to the individuality of the person, there are factors that positively or negatively influence quality of life.

Aim:

The aim is to identify the factors that influence the quality of life of primary caregivers of patients with progressive life-threatening illnesses.

Methodology:

PUBMED was searched to retrieve the relevant literature for our research questions used the following keywords: “Quality of life and caregiver or caretaker and palliative care or life threatening disease.” Only quantitative studies containing randomized trials were included using at least one caregiver's quality-of-life tool, not older than 10 years, written in English, and with subjects older than 18 years, who considered they were involved in the active care of a palliative patient.

Results:

A number of 687 articles were identified from which only 38 were analyzed in detail regarding the impact of different interventions over the quality-of-life of the caregiver. The factors that influence the quality-of-life can be distributed into four areas: social, psycho-emotional, financial, and physical. The disruption of daily routine, non-existential financial resources, multiple responsibilities and psychological tension are reduce the caregiver's quality-of-life. Family involvment, knowledge about disease and treatment, abilities to communicate patient and the team and optimistic atitude improve caregiver's quality-of-life.

Conclusions:

The quality of life of the caregiver be improved by social, and relaxation techniques, reduction of insecurity or anxiety. Furthermore, the caregiver's quality of increases through and adequate communication diagnosis, a proper conducted treatment and education over the care maneuvers.

Introduction

Apatient's primary caregiver is a person close to the patient who is actively involved in the patient's care without being paid.¹ This person is most often a family member, and depending on the patient's medical condition, studies have shown that it is usually the spouse² who cares for cancer patients, while those with dementia are typically cared for by the next generation such as adult children.³ The primary caregiver is often unprepared to manage patient's complex care needs, and while the care process can have positive outcomes like strengthening relationships, develop new skills,⁴ it can also have a negative impact on caregiver's quality of life.⁵

According to the WHO definition, quality of life is “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.”⁶ However, the quality of life is a complex and individualized concept. From a subjective point of view, quality of life can be defined by the persons' own values, habits, cultural aspects, spirituality, and self-expectations in general.⁷ On the other hand, different perspectives try to take a more objective stand and measure quality of life based on standardized items like changes in physical, emotional, social, and spiritual domain of life.⁷ Five essential aspects of quality of life are identified: normal life, satisfaction/happiness, achievement of personal goals, social utility, and natural ability to function.⁸

Quality of life is a difficult concept to understand and therefore difficult to evaluate. Positive factors that influence quality of life include maintaining work capacity, taking time to get rid of negative thoughts, family support and support from care team members, symptom control, and spiritual activities. Factors that negatively influence the quality of life are marginalization, rejection, stigmatization, poverty, and unemployment.⁹

The main barriers identified in improving the quality of life for cancer patients and their caregivers were as follows: 1.

Patients and physicians focus on disease, investigations, and treatment, and refer to palliative care only late in the disease trajectory or not at all.^10,11

Each individual (patient or caregiver) has a variety of problem-solving skills and coping with emotional challenges and care needs.¹²

Quality-of-life assessment tools are not routinely integrated into clinical practice or research.¹³

During the disease trajectory of a progressive illness, the patient's care needs are increasing, leading to an increased need for the caregiver's involvement. The impact of caregiving on the psychoemotional field is by far the most evaluated. Studies show that the caregivers experience the following: anxiety,^14,15 depression,^14–16 drowsiness and fatigue,^16,17 insomnia,¹⁶ and exhaustion,¹⁵ with a prevalence and in intensity that differs throughout the disease's trajectory. The period around the death of the loved one is the most emotionally demanding time of caregiving. Almost a quarter of the patients' caregivers had major depressive syndrome before patient's death and this percentage increased to 34.8% in the first 6 months after the death of the patient, with a decrease to 24.7% at 13 months after the event.¹⁸

From a physical point of view, caregivers often suffer from lack of energy,¹⁹ tiredness,¹⁹ and pain.^14,19,20 In the socioeconomic field, there are a number of increased responsibilities followed by reduced social life, and economic and financial burden.^14,21 However, the person involved in care is trying to adapt,²¹ but if the burden of care has decreased the caregiver's quality of life,²² it will also compromise the ability to provide quality care to the patient.²³

Aim of the Review

This narrative literature review aims at identifying the factors that influence the quality of life of primary caregivers of palliative care patients and to identify interventions that improve the caregiver's quality of life.

The review questions are as follows:

What are the interventions that can lead to an increased quality of life of the primary caregivers of palliative care patients?

What are the factors that influence the quality of life of the primary caregiver of a palliative care patient?

Methodology

PUBMED was searched to retrieve the relevant literature. The following keywords were used: “Quality of life and caregiver or caretaker and palliative care or life-threatening disease.”

A narrative review was chosen to offer a comprehensive analysis^24,25 of factors that can influence the quality of life of the palliative patient's caregiver. Although a narrative review has some limitations: the selection and evaluation biases are not known and it is not reproductible,²⁵ it was considered appropriate as a narrative review has more flexibility and provides more potential for individual insight than most quantitative review approaches. In our study, it provides consistent information on factors that are influencing the primary caregiver's life quality, it shows the impact of factors that can modify the life quality, and ultimately, it identifies the interventions that can improve caregivers' quality of life

For monitoring quality, in this review, we used the Scale for Assessment of Narrative Review (SANRA).²⁶ Two reviewers were involved.

Inclusion Criteria

Only randomized trials that tested interventions directed on improving quality of life of primary caregivers of palliative care patients were included. The studies selected had to use at least one caregiver's quality-of-life assessment tool, to be published in the last 10 years, to be written in English, and the caregivers to be adults older than 18 years ,involved in the active care of a family member who was a palliative care patient. Palliative care patients were considered patients with cancer or non-oncological diseases, who received palliative care in outpatient, home care, or inpatient setting (including hospice care).

We chose to retrieve only randomized control trials as studies to be included in the review because our aim was to make recommendations on interventions that could be used to improve caregivers' quality of life and this type of studies is considered gold standard research method having the following advantages: comparison of two groups, minimized bias, minimized confounding factors, statistical reliability, and internal validity.^27,28

Exclusion Criteria

We excluded studies using a qualitative methodology, observational or experimental studies that were not randomized clinical trial (RCT), articles that were presenting reviews or protocols of future RCT or presenting preliminary results of RCT, studies of caregivers of palliative care pediatric patients, articles written in a language other than English, articles older than 10 years or that did not refer to the subject of the review, studies that did not use a tool for assessing quality of life, and articles that did not have an intervention to change the quality of life.

Data Extraction

The following parameters were recorded: number of caregivers as subjects, their relationship with the patient, type of pathology of the patient receiving palliative care, purpose of the study, tools used to assess quality of life, interventions applied, and results on quality of life (Table 1). The response to certain interventions, allowed us to identify the factors that can positively or negatively influence the quality of life of the caregivers of a palliative care patient.

Table 1.

Data Extraction

1. The author of study

2. Year

3. Number caregivers (sample)

4. The pathology of patient cared

5. The aim of study

6. Kinship of caregiver with their patient

7. The instrument used for assess the caregiver's quality of life

8. The intervention applied

9. The results statistically significant

10. The factors that exert a positive or negative influence on the caregiver's quality of life

Results

A number of 687 articles were identified, with 669 of them in English. After the analysis of the abstracts, articles not referring to the revision's subject, and qualitative studies or protocols were excluded, as well as abandoned or stopped studies. The PRISMA diagram shows the process of selecting the articles (Fig. 1).

FIG. 1.

PRISMA chart with selection process of relevant articles.

The details of the 38 studies included in the review are centralized in Table 2.

Table 2.

Articles Included in the Review

Author, year	Scope of study	Sample	Patients' pathology	Kinship of caregiver with their patients	Intervention	Life quality appraisal instruments	The results obtained on the caregiver
Orrell et al.⁴⁷ 2017	The impact of cognitive stimulation therapy on the quality of life of the caregiver	356	Dementia	Unspecified	Individual cognitive stimulation therapy	EuroQOL 5 SF-12	Reducing depression Increasing the quality of patient-caregiver relationships. Improving the quality of life of the caregiver
El-Jawahri et al.²⁹ 2017	The effect of early palliative care on caregivers' quality of life	275	Lung cancer Non-colorectal gastrointestinal cancer	Partner 66.7% Child 15.9% Parent 4.4% Sibling 8% Friend 2.2% Other 2.9%	Early application of integrated palliative care	MOS-SF36	Reducing the level of psychological stress of the caregiver by reducing depression. Increasing the quality of life compared to the general population not with statistical significance
Bilgin et al.³⁰ 2016	The effect of supportive home care measures on the quality of life of caregivers	72	Gastric cancer	Parent 2.9% Spouse 44.1% Sibling-child and other 52.9%	Home nursing care in patients during chemotherapy sessions	CQOLC	The overall quality of the caregiver has significantly improved in terms of psychological stress, disruption of daily life, and responsibility for care
Lapid et al.³¹ 2015	Assessing changes in quality of life after sessions that include physical therapy, coping, communication strategies, and mental education	131	Cancer	Unspecified	Education sessions addressed to multidisciplinary areas of quality of life (emotional, cognitive, physical, spiritual, and social)	CQOLC	Significant improvement in quality of life (total score) and in the spiritual field, energy, fatigue, and adaptation; Long-term improvement in the financial field by reducing concerns
Hi-Po Lau et al.⁷³ 2018	The interdependence between the dysfunctional attitude and the quality of life	173	Pulmonary cancer	Spouse 66.5% Child 19.7% Parents 5.8% Sibling 8.1%	Psychosocial support	CQOLC	The quality of life of the caregiver was negatively associated with the patient's dependence and positively associated with self-control
Dionne-Odom et al.³² 2015	Determining the difference between early and late onset of palliative care for caregivers	122	Advanced cancer	Spouse 78.7% Sibling 4.9% child 6.6% Parent 6.6% Other 1.6%	Early initiation of palliative care	CQOLC	Depression decreased significantly in those with early palliative care Quality of life increased, but statistically insignificantly
McDonald et al.³³ 2016	The impact of early palliative care on the quality of life of caregivers	151	Advanced lung, gastrointestinal genitourinary, breast, and gynecological cancer	Spouse 78.7% Child 14.9% Other 6.4%	Early palliative care	SF-36; CQOLC;	The quality of life has not changed
Demiris et al.³⁴ 2019	The impact on the quality of life and caregivers' anxiety of the problem-solving intervention and the comparison of effectiveness of this intervention between face-to-face or videoconference application	342	Cancer Dementia Other cardiovascular diseases	Child 51.2% Spouse 29.2% Other 19.8%	Problem-solving education in five steps: adopting a positive attitude, defining the problem, alternatives, preventing consequences, and finding solutions	CQOLI-R	Reducing anxiety Improving the quality of life in the social, financial and physical field Face-to-face intervention was more effective than video call
Belgacem et al.³⁵ 2013	The effectiveness of an educational program for caregivers	67	Hematological cancer	Spouse 61.5% Offspring 16.9% Sibling 9.2% Parent 9.2% Friend 3.1%	Education to improve patient feeding skills, care techniques, support, and symptom control	SF-36	Improving the quality of life in terms of physical, emotional, vitality, mental health, social functionality, and general health. In dynamics, physical and social functionality has increased significantly and pain has been reduced
Meyers et al.³⁶ 2011	Examining the effect of educational interventions on problem solving on the caregiver's quality of life	348	Solid tumors lymphoma	Spouse 70% Child 16% Parent 3% Unrelated 4% Other 5%	Education sessions on a problem-solving model	COHQOL	Quality of life decreased in both groups, but the decrease was much smaller in the group with educational intervention,
Kubo et al.³⁷ 2019	Evaluating the feasibility and effectiveness of the online platform on improving the mental health of the patient and caregiver	31	Cancer	Spouse 47.1% Child 23.5% Other 11.8% Friend 17.6%	Mental meditation exercises, basic techniques, breathing exercises, scanning the body with the mind, exercises for visualizing the body, or emptying the mind of emotions	CQOLC	Improving the quality of life and mental health
Charlesworth et al.⁴⁸ 2016	Evaluating moral support and reminder therapy on the quality of caregivers' lives	291	Dementia	Spouse 67%	Supportive intervention and recall therapy	SF-12 EQ-5D	No quality-of-life efficacy was observed
Lawler et al.⁶⁰ 2019	Evaluation of the efficiency and safety of physiotherapy assisted by family members	40	Multiple pathologies	Spouse 17.64% Child 70.58% Sibling 5.88% Other 23.52%	Physiotherapy intervention assisted by a previously trained caregiver	EQ-5D	No changes in the quality of life between the two groups were highlighted
Wadhwa et al.²² 2011	Assessing the quality of life and mental health of caregivers of outpatient cancer patients	191	Advanced lung, gastrointestinal genitourinary, breast, and gynecological cancer	Spouse 83.8% Child 11% Other 5.2%	Early palliative care in outpatients	CQOLCMOS-SF36	Good mental and physical health leads to a better quality of life. Female sex, changes at work, large number of hours spent in care, and the patient's poor emotional state lead to a poor quality of life
Washington et al.³⁸ 2018	Examining the feasibility of problem-solving therapy and its impact on quality of life	83	Cancer	Spouse 53% Child 26.5% Sibling 8.4% Parent 3.6% Friend 3.6% Other 4.8%	Problem-solving therapy to effectively deal with stressors	CQLI-R	Reported less anxiety There were no significant differences in depression and quality of life
Li et al.³⁹ 2019	The effect of health education interventions on the quality of life of caregivers and patients	67	Small cell lung cancer	Spouse 63.4% Child 32.4% Other 4.2%	Education sessions comprising physical therapy, communication strategies, coping, mental health education, spirituality, social needs, knowledge about nutrition, physical activities, and symptom control	CQOLC	Increasing the quality of life and psychological well-being
Kuo et al.⁴⁹ 2016	The trajectory of the disease in relation to the quality of life of caregivers of patients with dementia at home	63	Dementia	Spouse 28.7% Daughters 27.9% Daughters-in-law 27.1% Sons 16.3%	Collaborative involvement of the caregiver in the development of the plan and help for the caregiver to identify and reduce stimuli that would cause certain symptoms of dementia	SF-36	Quality of life has improved in the areas of pain, general health, social functioning, vitality, and mental health
Van der Lee et al.⁵⁰ 2015	Assessing the characteristics of the patient or caregiver that influence the burden and quality of life	148	Dementia	Spouse 15.3% Other 84.7%	Integrative Reactivation and Rehabilitation Program (daily home care)	EQ-5D	Negative correlation between caregiver quality of life and emotional stress and overall burden
Cuthbert et al.⁴⁰ 2018	Assessing the influence on the quality of life of an exercise program	77	Cancer	Spouse 79.2% Child 14.3% Other 6.5%	Aerobic exercise through a planned, structured, and repetitive physical program	SF-36	The physical domain of quality of life has not changed, but the mental component of quality of life has changed statistically significantly
Parker et al.⁶¹ 2017	The effect of interventions to increase the perception of caregivers on pain management, the effect on quality of life	446	Palliative patients	Child 48.1% Spouse 54.6%	Online meeting with the family to communicate about the disease and draw up a plan	CQOLI-R	There were no significant differences in quality of life
Malcarne et al.⁴¹ 2019	The effectiveness of problem-solving therapy on the quality of life of caregivers	78	Prostate cancer	Spouse 100%	Problem-solving therapy	SF-36	Improving problem-solving skills, which positively affect cancer stress and improve the physical and mental component of the caregiver's quality of life
Dockham et al.⁴² 2016	Implementing a FOCUS educational program and its efficiency on quality of life	34	Cancer	Spouse 91.9% Sibling 2.7% Friend 5.4%	FOCUS educational program that includes family involvement, optimistic attitude, effective coping, reducing uncertainty, symptom control	FACT-G	Increasing the quality of life in general as well as the physical, emotional. and functional component
Richards et al.⁵¹ 2018	The effect of visual arts on the quality of life of patients and caregivers	26	Dementia	Unspecified	The visual arts educational program includes hat decoration, collages, painting, ceramics, and photography	QOL-AD	Improving patient self-esteem and reducing caregiver burden by increasing patient and caregiver quality of life
Yu et al.⁶² 2016	The effect of a collaborative case management model on burden and quality of life	58	Fragile elderly	Child 50%	Implement a case management model to ensure integrated, coordinated, and continuous care	MOS-SF36	Significant decrease in perceived burden and significant increase in quality of life in terms of energy/vitality, social functioning, and general condition
Duggleby et al.⁵² 2018	Evaluating the effectiveness of an MT4C web program on the quality of life of caregivers, increasing hope and self-efficacy	199	Dementia Alzheimer			SF-12	An increase in hope was observed
Carrasco et al.⁵³ 2014	The efficiency of a psychoeducational program on reducing stress and increasing the quality of life	238	Dementia	Spouse 47.8% Child 47% Other 5.2%	The program included information on dementia, the acquisition of cognitive and communication skills, relaxation techniques, and emotion control	SF-12	There were no significant differences in burden and quality of life
Wittenberg-Lyles et al.⁶³ 2014	If the patient's care in pairs influences anxiety, depression, and quality of life	304	Elderly in hospice	Spouse 9.1% Child 54.6% Other 36.4%	A group of caregivers alone and a group of caregiver-patient pairs participated in the education sessions	CQLI-R	The quality of life of caregivers has been better in the emotional field by decreasing anxiety and depression The social domain of quality of life has not changed according to anxiety and depression The physical and financial domain has fluctuated according to depression
Shaw et al.⁴³ 2016	Efficiency of a telephone intervention program to improve the caregiver's psychosocial status	160	Advanced gastrointestinal cancer	Spouse 73% Child 17% Parent 3% Sibling 2% Friend 5%	Standardized assessment of caregiver and patient needs, maintaining intrafamily relationships, information on emotional and physical care, and self-care	SF-12	The quality of life of the caregiver in the physical and mental field has a low score in both groups, but in the group with the intervention, it is slightly higher, but not statistically significant. Statistical significance was the perceived family support and had fewer financial concerns. Statistically significant number of emergency presentations and unplanned hospitalizations
Kuo et al.⁵⁴ 2012	The effect of a home care training program to increase the quality of life	129	Dementia	Spouse 28.7% Daughters 27.9% Daughters-in-law 27.1% Son 16.3%	The educational program helps the caregiver identify the patient's stressors and provide suggestions for changing the environment and the daily schedule to reduce them	MOS-SF36	Quality of life has been statistically improved in the area of physical pain, limiting the role due to emotional problems, vitality, and mental health. Lower risk of depression. Caregivers have been better prepared for care and have adopted a good behavior management strategy and greater satisfaction with their actions
Northouse et al.⁴⁴ 2013	The efficiency of a short or extended program of education on the quality of life of the caregiver (long program, 6 sessions, and the short one, 3 sessions)	302	Breast, lung, colorectal, and prostate cancer	Spouse 74%	FOCUS—family involvement, optimistic attitude, coping efficiency, uncertainty reduction, and control	FACT-G	Improving the quality of life has increased statistically significantly in the emotional and social fields
Brijoux et al.⁵⁵ 2016	Assess whether families receiving support increase their quality of life	63	Dementia	Spouse 64.7% Parent and parent-in-law 41% Brother/sister 2.6% Other 2.6%	Knowledge about dementia, aspects of care and solutions to care problems, organization of support networks, self-reflection about the role, and attitude as a caregiver	SF-12	Improving the quality of life in the field of mental health
Laakkonen et al.⁵⁶ 2016	The effect of self-management of rehabilitation care on caregivers of patients with dementia	136	Dementia	Spouse 100%	Psychosocial rehabilitation that develops the capacity for self-management of the situation through the ability to solve problems and self-efficiency	RAND-36	The physical component of quality of life has been statistically significantly improved
Nipp et al.⁴⁵ 2016	Assessment of factors associated with caregivers' anxiety and depression based on early timing of palliative care	275	Cancer	Spouse 66.2% Child 18.5% Friend 4.4% Sibling 4.4% Parent 2.2% Non-cohabitating relationship 0.7% Other 3.3% Missing 0.4%	Early palliative care compared to the basic care group	MOS-SF36	Significantly more anxiety and a reduced emotional quality of life were reported
Torkamani et al.⁵⁷ 2014	Evaluates the influence of telemedicine in the care of patients with dementia	60	Dementia	Unspecified	The online platform ALADDIN had information about monitoring patients, and about their own mental assessment and their own burden in relation to care	EuroQOLQOLS	Reducing burden and stress by improving the quality of life
Chien et al.⁵⁸ 2010	Evaluates the influence of telemedicine in the care of patients with dementia	92	Dementia	Child 39.1% Spouse 27.2% Sibling 19.6%	Program that provides information about illness, prognosis, treatment, and care, developing relationships with close relatives, friends, venting emotions, information about self-care and motivation, establishing community resources	WHOQOL-BRIEF	Improving the quality of life increases significantly and reduces the burden
Xiu et al.⁴⁶ 2019	The effect of culturally compatible psychosocial interventions on the quality of life of the caregiver	157	Lung cancer	Unspecified	CBT; I-BMS	CQOLC	Both interventions have led to a significant increase in quality of life
Chan et al.⁵⁹ 2016	The effect of a program to improve psychosocial support on caregiver anxiety and quality of life	29	IRC	Spouse 52% Sibling 45% Others 4%	Improving psychosocial support Palliative care education in advanced chronic kidney disease Information on family needs	McGill QOL	Anxiety and burden decreased significantly; however, quality of life did not change significantly
Demiris et al.⁶⁴ 2012	Effectiveness of a therapy program by solving comparative problems face to face or by videoconference	126	Hospice patients	Unspecified	Educational problem-solving program	CQLI-R	Quality of life has increased in both groups, showing that this intervention is no longer ineffective in the online environment

CBT, cognitive behavioral therapy; COHQOL, City of Hope Quality of Life; CQLI-R, Caregiver Quality-of-Life Index-Revised; CQOLC, Caregiver Quality-of-Life Index-Cancer Scale; CQOLI-R, Caregiver Quality-of-Life Index-Revised; FACT-G, Functional Assessment of Cancer Therapy-General; I-BMS, integrative body-mind-spirit intervention; McGill QOL, McGill Quality of Life; MOS-SF36, Medical Outcomes Study 36-item Short Form Health Survey; SF-36, Medical Outcomes Study 36-item Short Form Health Survey; QOLS, Quality-of-Life Scale; WHOQOL-BRIEF, World Health Organisation Quality of Life Measure-Brief Version.

In 19 studies (50% of the total), patients receiving care had an advanced oncological disease^22,29–46; in 12 studies (31.57%), the patients had different forms of dementia,^47–58 in 1 study (2.63%) they suffered from chronic renal disease,⁵⁹ and 6 studies (15.78%) included patients with multiple pathologies receiving palliative care at home or in a hospice.^34,60–64

In the selected studies, eight instruments were used to assess the caregiver's quality of life with a different number of items (minimum six items in Euro Quality of Life-5D and maximum 36 items in Medical Outcomes Study-SF36) (Table 3). All these instruments assess aspects of physical health, physical functionality, mental health, and psychoemotional status of the subject.^65–68 Some tools like Caregiver Quality of Life for Cancer (CQOLC), Functional Assessment of Cancer Therapy-General (FACT-G), Quality of Life in Alzheimer Disease (QOL-AD), World Health Organisation Quality of Life Measure-Brief Version (WHOQOL-BRIEF) and McGill Quality of Life (McGill QOL) evaluate the social, financial, relationship, and environmental aspects. The instruments with a larger number of items offer a detailed assessment of various dimensions, but are difficult to use in everyday practice.

Table 3.

Instruments Used for Measuring Quality of Life

The instrument, the abbreviation	Author, Year	No item	Dimensions of quality of life
EQ-5D	EuroQOL Group 2009⁶⁵	6	Mobility, self-care, usual activities, pain/discomfort, and anxiety/depression.
MOS-SF36	RAND Health CareHays & Shapiro, 1992⁶⁶	36	Limitations in physical activities because of health problems, limitations in social activities because of physical or emotional problems, limitations in usual role activities because of physical health problems, bodily pain, general mental health, limitations in usual role activities because of emotional problems, vitality (energy and fatigue), general health perceptions
SF-12	Hays, Spritzer, Reise, 2020⁶⁷	12	Physical and mental health
CQOLC	Weitzner 1999⁶⁸	35	Physical, social, emotional, and financial aspects of well-being, and functioning
FACT-G	Cella, 1987⁶⁹	27	Physical, social, emotional, and functional well-being.
QOL-AD	Longsdon 2002⁷⁰	13	Physical health, energy, emotional status, day living conditions, memory, family, marriage, friends, self as a whole, the ability to do various things, money, life as a whole
WHOQOL-BRIEF	WHOQOL Group 1994⁷¹	26	Physical health, psychological status, social relationships, environment
McGillQOL	Cohen 1995⁷²	17	Physical symptoms, psychological symptoms, outlook on life, and meaningful existence

CQOLC, Caregiver Quality of Life Index—Cancer Scale; EQ-5D, Euro Quality of Life-5D; MOS-SF36, Medical Outcomes Study-SF 36; QOL-AD, Quality of Life in Alzheimer Disease.

The sample size in the selected studies was variable, with less than 50 subjects in 5 articles (13.15%), 51–200 subjects in 23 articles (60.52%), and over 200 subjects in 10 studies (26.31%). Concerning kinship caregivers of cancer patients are represented by their life partner in two-thirds to three-quarters of cases,^{22,32,33,35,36,39–45,65} and dementia adult children or son/daughter-in-law represent the majority, with few exceptions.

Concerning the impact of interventions on caregiver's quality of life in four articles^33,48,59,60 (10.52%), the quality of life did not change at all, and in five^{29,32,38,53,61} (13.15%) of them, the quality of life improved, but without statistical significance. In the remaining 29 of the evaluated studies (76.31%) certain interventions resulted in significantly improving the quality of life of caregivers either globally or in one or more areas.

The interventions that had the most positive impact on caregiver's quality of life were education sessions addressed to improve patient feeding,³⁵ nursing technique lessons,³⁵ certain ways to control symptoms and side effects^35,42,58 about aspects of social assistance,³⁵ and sessions that identified patient's stressors and provided suggestions for changing the environment.⁵⁴ These had a statistically significant effect not only on the quality of life in general (p = 0.002)⁴² but also on certain aspects of quality of life such as the physical area (p = 0.01),^35,42 in the emotional domain ([p = 0.006]³⁵ and [p = 0.004]⁴² and [p < 0.013]⁵⁴), and social aspects ([p = 0.001]³⁵ and [p = 0.003]⁴²).

Implementing a case management model to ensure integrated, coordinated, and continuous patient care⁶² and a collaborative involvement of the caregiver in developing this plan⁴⁹ are interventions that have been proven effective by reducing the perceived burden (p = 0.03)⁶² and increasing the quality of life in terms of general health ([p = 0.049]⁶² and [p < 0.05]⁴⁹) of the caregiver, his vitality ([p = 0.049]⁶² and [p < 0.05]⁴⁹), social functioning ([p = 0.047]⁶² and [p < 0.001]⁴⁹), and mental health.⁴⁹

Providing information about diagnosis, prognosis, and treatment along with aspects of care leads to an improved quality of life,^55,57 especially in the field of caregiver's mental health (p = 0.047).⁵⁵ Education sessions that address the field of communication^{31,39,44,53,61} improve caregiver's quality of life by reducing concerns³¹ and increase psychological well-being.^39,44 These training interventions resulted in caregivers being better prepared for care responsibilities (p < 0.013) and adopting an improved problem management strategy (p < 0.01) with greater satisfaction.⁵⁴

One study showed that caregiver's quality of life was better regarding the emotional field when participating in caregiver-patient pairs in the education sessions compared to when they participated alone.⁶³

The use of telemedicine to deliver information for monitoring the patient and to assess the caregiver's burden and mental health led to decreased burden and an improved quality of life of the caregiver,⁵⁷ but without statistical significance.⁶²

The interventions directed at the caregiver, which have led to a significant increase in quality of life and mental health, are as follows: mental meditation exercises,³⁷ breathing exercises,³⁷ scanning the body with the mind,³⁷ exercises for visualizing the body or emptying the mind of emotions,³⁷ aerobic exercises through a planned structure and repetitive physical program,⁴⁰ the visual arts educational program (hat decoration, collages, painting, ceramics, and photography),⁵¹ cognitive behavioral therapy,⁴⁶ and integrative body-mind-spirit interventions.⁴⁶

Problem-solving education^34,36,38 is an effective intervention for improving quality of life in the social and financial field³⁴ and improving both physical^41,56 and mental components⁴¹ of caregiver's quality of life. A face-to-face education program is more effective than an online intervention.^34,56 Home nursing care for patients with chemotherapy has led to an increase in the quality of life for caregivers in terms of psychological strain and reduced daily life disruption and responsibilities of care.³⁰

The factors that influence the quality of life of the caregiver can be grouped into four areas: social, psychoemotional, financial, and physical. In each field, we identified factors with positive (Table 4) and negative influences (Table 5).

Table 4.

The Factors That Increase the Caregiver's Quality of Life

Domain	Caregivers of patients with cancer	Caregivers of patients with nonmalignant disease
Social factors	Family involvement^42,44Disease knowledge^39,43Education/training for patient care^30,35,36Information on drugs, side effects³⁰Family support³¹Education for the general well-being state⁴⁶Education for issue solving^34,36,41,64Care continuity—home nursing³⁰	Multidisciplinary support^59,62Disease knowledge^55–57Education/training for patient care^49,55,58Family support^56,57Education for issue solving^34,36,41,64Competency in tasks fulfilling⁵⁰Family lien⁵⁰
Financial factors	Financial support resources⁴³Resources efficient use^30,31Financial resources⁴³	Financial support resources^56,57,59Promoting information about community services⁵⁴
Psychological and emotional factors	Quality of patient-caregiver relation^41,43Abilities to communicate with the team³³Optimistic attitude^42,44Ability to efficiently cope^44,46Relaxing techniques^31,37,46Pleasant activities⁴⁶Communication skills³¹Self-control^43,65Patient mental state²²Caregiver mental state^22,39	Quality of patient-caregiver relation^47,61,63Abilities to communicate with the team^56,61Ability to efficiently cope^56,64Self-control⁵⁶Patient mental state⁵⁰
Physical factors	Pain management knowledge³⁹Symptoms management^42,44Nursing-type home interventions³⁰Patient physical condition²²Activity/physical exercise^39,40Caregiver health⁴³	Feeling of competency in tasks fulfilling⁵⁰Pain management knowledge⁶¹Caregiver health⁵⁰

Table 5.

The Factors That Decrease the Caregiver's Quality of Life

Domain	Caregivers of patients with cancer	Caregivers of patients with nonmalignant disease
Social factors	Disruption of daily routine^,22,30Great number of caregiving hours²²
Financial factors	Nonexistent financial resources⁴³
Psychological and emotional factors	Depression^46,65Anxiety^38,45,46,65Psychological tension³⁰Patient emotional state²²Caregiver mental state⁴⁴Uncertainty^42,44Negative thoughts⁴⁶	Depression^47,63Anxiety⁶³Patient emotional state⁵⁰Caregiver mental state⁵⁰
Physical factors	Caregiver multiple responsibilities³⁰Female²²Physical condition of the patient²²	Female gender⁶³Physical condition of the patient⁵⁰

The following physical factors may have positive influence on the caregiver's quality-of-life: knowledge about the patient's illness, symptom and pain control, nursing techniques and the ability to fulfil various tasks. It essential for the caregiver to maintain a healthy lifestyle mainly through physical exercise. Reducing the caregiver's quality of life is related to the following: multiple responsibilities, deterioration of patient's condition, and female gender.

Positive psychological factors are linked to the quality of patient-caregiver relation, the communication abilities with the care team, an optimistic attitude, abilities to cope and self-control, and engagement in relaxing techniques and pleasant activities. A good patient and caregiver mental state are a positive influence for the quality of life. Depression, anxiety, psychological strain, feelings of uncertainty, negative thoughts, and the deterioration of patient and caregiver's mental state are negative factors for the caregiver's quality of life.

Lack of financial resources negatively influences the quality of life, while receiving financial support has a positive impact.

Patient care leads to disruption of daily routine and spending numerous hours for caregiving. These are negative factors for the caregiver's quality of life. The quality of life of the caregiver is likely to be improved by the involvement of the family members and by support and education regarding home nursing delivered by a multidisciplinary care team.

Discussion

The perception on the quality of life is different from one individual to another, being correlated with personal values, culture, level of education, personality, and age. The person involved in the care of a patient with progressive life-threatening disease encounters a complex situation and has the task to meet the physical, psychoemotional, social, and spiritual needs of the patient,⁷⁴ often by neglecting his own person. In medical practice, the care burden of the primary caregiver of a palliative care patient is not evaluated, often leading to exhaustion, dissatisfaction with the fulfillment of responsibility, or uncertainty in the care process.⁷⁵ These lead to a reduction in self-esteem and ultimately to a reduced quality of life.⁷⁶

The psychoemotional changes as depression,^32,46,47,63 anxiety,^{38,45,46,63,73} and different physical and psychological conditions of the patient's caregiver^22,50 are factors that decrease the quality of life for both cancer and noncancer patients' caregivers. During the care process for a patient with cancer, changes appear fast, and the caregiver does not have enough time for self-adapting to the new situation. Some factors as disruption of daily routine,^22,30 multiple responsabilities,³⁰ uncertainty,^5,42 and negative thoughts⁴⁶ have an unfavorable influence on the caregiver's quality of life.

On the other hand, knowledge about disease,^{39,43,55–57} training for patient care^{30,35,36,49,55,58} and education for issue solving^{34,36,41,46,64} are factors that increase the quality of life for the individual involved in the care of both cancer and nononcological patient. When the caregivers are involved in the care of patients with cancer, the following factors increase their quality of life: family involvement,^42,44 care continuity-home nursing,³⁰ knowledge about drugs and their side effects,³⁰ and communication skills.³¹ The caregiver's mental state,^22,39 optimistic attitude,^42,44 relaxation techniques,^31,37,46 and pleasant activities⁴⁶ have a positive impact on the caregiver's quality of life in caring for the patient with cancer.

Multidisciplinary support from a care team appears to be an important factor in increasing the quality of life of the caregiver in the care of a patient with a nonmalignant disease.^59,62

The sense of competence in performing tasks is important for increasing the quality of life for the caregiver of the patient with dementia to sustain the multiple needs of the patient and to adapt the caregiver to the current situation.⁵⁰

The evaluated articles were randomized studies of interventions targeted to improve the quality of life of the caregiver. The interventions that proved beneficial fall in three categories:

Care coordination and home care support include psychosocial support,^59,65 supportive⁴⁸ and physiotherapy interventions,⁶⁰ measures to ensure continuity of care at home,³⁰ implementing a case management model to ensure integrated, coordinated, and continuous care,⁶² and knowledge about support organization's network.⁵⁵

Information and education interventions contain the following: patient feeding skills,^35,39 care techniques,^35,44 symptom control,^35,39,42 assessing patient's needs⁴³ and stressors,⁵⁴ physical therapy,³⁹ communication strategies,³⁹ mental health education,³⁹ maintaining intrafamily relationship,⁴³ information about illness, prognosis, treatment, side effects of treatment,⁵⁸ education addressed to multidisciplinary areas regarding quality of life,³¹ and educational programs for maintaining an optimistic attitude and reducing uncertainty.⁴²

Interventions targeting the caregiver's well-being: problem-solving educational,^{34,36,38,41,56,64} mental meditation exercise,³⁷ breathing exercise,³⁷ scanning the body with the mind,³⁷ exercises for visualizing the body or emptying the mind of emotions,³⁷ capacity to self-management,⁵⁶ aerobic exercises,⁴⁰ physical repetitive program,⁴⁰ the visual arts educational program,⁵¹ self-care venting emotions,⁵⁸ cognitive behavioral therapy, and integrative body-mind spirit.⁴⁶

There are a number of tools that can measure the quality of life, but along with them, a tool for measurement of the burden of care must be used to identify the most affected area. The most used tools were the short forms of Medical Outcomes Scale SF-36 or SF-12, which assessed quality of life in 17 studies (44.73%) and CQOLC in 15 studies (39.47%).

Factors that can lead to an increase in quality of life are especially those related to the ability of the professional care team to communicate information about the disease, treatment, side effects, and especially the co-optation of the caregiver in the process of developing the management plan and evaluating the patient. Blockage in communication increases the caregiver's uncertainty and anxiety. The quality of intrafamily relationships and the involvement of other family members lead to an increased quality of life for the caregiver. Relaxation time along with relaxation techniques will be able to change the condition of the caregiver, who will reflect on better care.

Strengths and Limitations of the Review

Randomized studies have been analyzed and many have provided useful information on effective interventions to change the quality of life of the caregiver and on the factors that can help in this regard.

Quality-of-life tools are difficult to apply in clinical practice due to the large number of items. Quality of life is a dimension that researchers address only in the background.

Conclusions

The quality of life and its components are difficult to identify and quantify for the patient and his caregiver.

The interventions that lead to improving caregiver's quality of life are divided in to three categories: most of them regard education sessions to assist the caregiver in its actions, some improve communication skills and family relationship, and some have a direct effect on the caregiver.

The interventions that lead to improving caregiver's quality of life fall into three categories. While most of them regard education sessions meant to assist the caregiver in its actions, some improve communication skills and family relationship or have a direct effect on the caregiver.

Communication of diagnosis, treatment, mastery of care maneuvers, relaxation techniques, reduction of insecurity, anxiety, and emotional and social support are factors that maintain or can improve the quality of life of the caregiver.

Footnotes

Authors' Contributions

All authors were engaged in the preparation of this review. R.S.P. selected the articles evaluated in this article and drafted the article. R.S.P. analyzed and interpreted data from articles included in the review. A.P. and D.M. revised critically the article. D.M. supervised the overall review. All authors read and approved the final article.

Acknowledgments

We are grateful to everyone who participated in writing this review: Prof Dr Daniela Mosoiu and SL Dr Aida Puia.

Ethical Approval

Ethical approval to conduct the review was obtained from the Transilvania University, Romania, lead on July 1, 2020.

Consent for Publication

The authors provided verbal consent to publish.

Funding Information

The research leading to these results received no funding.

Author Disclosure Statement

No competing financial interests exist.

References

Payne

: EAPC Task Force on Family Carers White Paper on improving support for family carers in palliative care: Part 2. Eur J Palliat Care, 2010; 17:286–290.

Northouse

, McCorkle

: Spouse caregivers of cancer patients. In Holland JC, Breitbart WS, Butow PN, Jacobsen PB, Loscalzo MJ, McCorkle R (eds): Psycho-oncology. Oxford University Press, 2015. pp. 567–573.

Supporting informal caregivers of people living with dementia. 2021. https://www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_informal_care.pdf (Last accessed October 22, 2021).

Connolly

, Milligan

: Knowledge and skills needed by informal carers to look after terminally ill patients at home. End Life J, 2014; 4:1–14.

Florea

, Puia

, Pop

: The family as recipient and provider of home care—A primary care perspective. In: Palliative Care. Stones J, Cascella M (eds). 2020. DOI: 10.5772/intechopen.91926

WHOQOL: Measuring Quality of Life. https://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/ (Last accessed May 18, 2021).

Cai

, Verze

, Bjerklund Johansen

: The quality of life definition: Where are we going. Uro J Urol, 2021; 1:14–22.

Thaniyath

: The quality of life of the patients under palliative care: The features of appropriate assessment tools and the impact of early integration of palliative care. In Palliative Care 2019. IntechOpen Chapter 2.

Jacoba

JJVR

, Johanna

, Corrien

: Quality of life from the perspective of the palliative care patient in a resource-poor community in South Africa. Palliat Support Care, 2013; 11:21–28.

10.

Earle

: Cancer survivorship research and guidelines: Maybe the cart should be beside the horse. J Clin Oncol, 2007; 25:3800–3801

11.

Freireich

, Kurzrock

: The role of investigational therapy in management of patients with advanced metastatic malignancy. J Clin Oncol, 2009; 27:304–306.

12.

, Malcarne

, Varni

, et al.: Problem-solving and distress in prostate cancer patients and their spousal caregivers. Support Care Cancer, 2005; 13:367–374.

13.

Lorenz

, Lynn

, Dy

, et al.: Quality measures for symptoms and advance care planning in cancer: A systemic review. J Clin Oncol, 2006; 24:4933–4938.

14.

Tsigaroppoulos

, Mazaris

, Chatzidarellis

, et al.: Problems faced by relatives caring for cancer patients at home. J Nurs Pract, 2009; 15:1–6.

15.

Ulrich

, Ascherfeld

, Marx

, et al.: Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care, 2017; 16:31.

16.

Kobayakawa

, Ogawa

, Konno

, et al.: Psychological and psychiatric symptoms of terminally ill patients with cancer and their family caregivers in the home-caresetting: A nation-wide survey from the perspective of bereaved family members in Japan. J Psychosom Res, 2017; 103:127–132.

17.

Seekatz

, Lukasczik

, Löhr

, et al.: Screening for symptom burden and supportive needs of patients with glioblastoma and brain metastases and their caregivers in relation to their use of specialized palliative care. Support Care Cancer, 2017; 25:2761–2770.

18.

Kim

, Kim

, et al.: Prevalence and predictors of major depressive disorder in bereaved caregivers at 6 and 13 months. Palliat Support Care, 2018:1–6.

19.

Oechsle

, Goerth

, Bokemeyer

, Mehnert

: Symptom burden in palliative care patients: Perspectives of patients, their family caregivers, and their attending physicians. Support Care Cancer, 2013; 21:1955–1962.

20.

Fitzsimons

, Doherty

, Murphy

, et al.: Inadequate communication exacerbates the support needs of current and bereaved caregiversin advanced heart failure and impedes shared decision-making. J Cardiovasc Nurs, 2019; 34:11–19.

21.

Weisser

, Bristowe

, Jackson

: Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews. Palliat Med, 2015; 29:737–745.

22.

Wadhwa

, Burman

, Swami

, et al.: Quality of life and mental health in caregiver of outpatients with advanced cancer. Psychooncology, 2013; 22:403–410.

23.

Northouse

, Mood

, Kershaw

, et al.: Quality of life of women with recurrent breast cancer and their family members. J Clin Oncol, 2002; 20:4050–4064.

24.

Green

, Johnson

, Adams

: Writing narrative literature reviews for peer-reviewed journals: Secrets of the trade. J Chiropr Med, 2006; 5:101–117.

25.

Ferrari

: Writing narrative style literature reviews. Med Writing 2015;24;230–235.

26.

Baethge

, Goldbeck-Wood

, Mertens

: SANRA-a scale for the quality assessment of narrative review articles. Res Integr Peer Rev, 2019; 4:5.

27.

Booth

, Tannock

: Randomised controlled trials and population-based observational research: Partners in the evolution of medical evidence. Br J Cancer, 2014; 110:551–555.

28.

, Sajobi

, Menon

, et al.: Registry-based randomized controlled trials-what are the advantages, challenges, and areas for future research?. J Clin Epidemiol, 2016; 8:16–24.

29.

El-Jawahri

, Greer

, Pirl

, et al.: Effects of early integrated palliative care on caregivers of patients with lung and gastrointestinal cancer: A randomized clinical trial. Oncologist, 2017; 22:1528–1534.

30.

Bilgin

, Gozum

: Effect of nursing care given at home on the quality of life of patients with stomac cancer and their family caregivers nursing care. Eur J Cancer Care (Engl), 2018; 27:e12567.

31.

Lapid

, Atherton

, Kung

, et al.: Cancer caregiver quality of life: Need for targeted intervention. Psychooncology, 2016; 25:1400–1407.

32.

Dionne-Odom

, Azuero

, Lyons

, et al.: Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III Randomized Controlled Trial. J Clin Oncol, 2015; 33:1446–1452.

33.

McDonald

, Swami

, Hannon

, et al.: Impact of early palliative care on caregivers of patients with advanced cancer: Cluster randomised trial. Ann Oncol, 2017; 28:163–168.

34.

Demiris

, Oliver

, Washington

, et al.: A problem-solving intervention for hospice family caregivers: A randomized clinical trial. J Am Geriatr Soc, 2019; 67:1345–1352.

35.

Belgacem

, Auclair

, Fedor

, et al.: A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: A randomised clinical trial. Eur J Oncol Nurs, 2013; 17:870–876.

36.

Meyers

, Carducci

, Loscalzo

, et al.: Effects of a problem-solving intervention (COPE) on quality of life for patients with advanced cancer on clinical trials and their caregivers: Simultaneous care educational intervention (SCEI): Linking palliation and clinical trials. J Palliat Med, 2011; 14:465–473.

37.

Kubo

, Kurtovich

, McGinnis

, et al.: A randomized controlled trial of mHealth mindfulness intervention for cancer patients and informal cancer caregivers: A feasibility study within an Integrated Health Care Delivery System. Integr Cancer Ther, 2019; 18:1534735419850634.

38.

Washington

, Demiris

, Parker Oliver

, et al.: Delivering problem-solving therapy to family caregivers of people with cancer: A feasibility study in outpatient palliative care. Psychooncology, 2018; 27:2494–2499.

39.

, Ling

, Zhanyu

: Effect of wellness education on quality of life of patients with non-small cell lung cancer treated with first-line icotinib and on their family caregivers. Integr Cancer Ther, 2019; 18:1534735419842373

40.

Cuthbert

, King-Shier

, Ruether

, et al.: The effects of exercise on physical and psychological outcomes in cancer caregivers: Results from the RECHARGE Randomized Controlled Trial. Ann Behav Med, 2018; 52:645–661.

41.

Malcarne

, Ko

, Roesch

, et al.: Efficacy of problem-solving therapy for spouses of men with prostate cancer: A randomized controlled trial. Psychooncology, 2019; 28:497–504.

42.

Dockham

, Schafenacker

, Yoon

, et al.: Implementation of a psychoeducational program for cancer survivors and family caregivers at a cancer support community affiliate: A pilot effectiveness study. Cancer Nurs, 2016; 39:169–180.

43.

Shaw

, Young

, Butow

, et al.: Improving psychosocial outcomes for caregivers of people with poor prognosis gastrointestinal cancers: A randomized controlled trial (Family Connect). Support Care Cancer, 2016; 24:585–595.

44.

Northouse

, Mood

, Schafenacker

, et al.: Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psychooncology, 2013; 22:555–563.

45.

Nipp

, El-Jawahri

, Fishbein

, et al.: Factors associated with depression and anxiety symptoms in family caregivers of patients with incurable cancer. Ann Oncol, 2016; 27:1607–1612.

46.

Xiu

, Fung

, Lau

, et al.: Comparing dyadic cognitive behavioral therapy (CBT) with dyadic integrative body-mind-spirit intervention (I-BMS) for Chinese family caregivers of lung cancer patients: A randomized controlled trial. Support Care Cancer, 2020; 28:1523–1533.

47.

Orrell

, Yates

, Leung

, et al.: The impact of individual Cognitive Stimulation Therapy(iCST) on cognition, quality of life, and family relationships in dementia: A randomized controlled trial. PLoS Med 14:e10002269.

48.

Charlesworth

, Burnell

, Crellin

, et al.: Peer support and reminiscence therapy for people with dementia and their family carers: A factorial pragmatic randomised trial. J Neurol Neurosurg Psychiatry, 2016; 87:1218–1228.

49.

Kuo

, Huang

, Liang

, et al.: Trajectories of health-related quality of life among family caregivers of individuals with dementia: A home-based caregiver-training program matters. Geriatr Nurs, 2017; 38:124–132.

50.

Van der Lee

, Bakker

, Duivenvoorden

, Dröes

: Do determinants of burden and emotional distress in dementia caregivers change over time?. Aging Ment Health, 2017; 21:232–240.

51.

Richards

, Tietyen

, Jicha

, et al.: Visual Arts Education improves self-esteem for persons with dementia and reduces caregiver burden: A randomized controlled trial. Dementia (London), 2019; 18:3130–3142.

52.

Duggleby

, Ploeg

, McAiney

, et al.: Web-based intervention for family carers of persons with Dementia and Multiple Chronic Conditions (My Tools 4 Care): Pragmatic Randomized Controlled Trial. J Med Internet Res, 2018; 20:e10484.

53.

Martín-Carrasco

, Domínguez-Panchón

, González-Fraile

, et al.: Effectiveness of a psychoeducational intervention group program in the reduction of the burden experienced by caregivers of patients with dementia: The EDUCA-II randomized trial. Alzheimer Dis Assoc Disord, 2014; 28:79–87.

54.

Kuo

, Huang

, et al.: A home-based training program improves Taiwanese family caregivers' quality of life and decreases their risk for depression: A randomized controlled trial. Int J Geriatr Psychiatry, 2013; 28:504–513.

55.

Brijoux

, Kricheldorff C

H L

l M, Bonfico

: Supporting families living with dementia in rural areas. Dtsch Arztebl Int, 2016; 113:681–687.

56.

Laakkonen

, Kautiainen

, Hölttä E, et al.: Effects of self-management groups for people with dementia and their spouses—Randomized Controlled Trial. J Am Geriatr Soc, 2016; 64:752–760.

57.

Torkamani

, McDonald

, Saez Aguayo

, et al.: A randomized controlled pilot study to evaluate a technology platform for the assisted living of people with dementia and their carers. J Alzheimers Dis, 2014; 41:515–523.

58.

Chien

, Lee

: Randomized controlled trial of a dementia care programme for families of home-resided older people with dementia. J Adv Nurs, 2011; 67:774–787.

59.

Chan

, Yip

, Yap

, et al.: Enhanced psychosocial support for caregiver burden for patients with chronic kidney failure choosing not to be treated by dialysis or transplantation: A pilot randomized controlled trial. Am J Kidney Dis, 2016; 67:585–592.

60.

Lawler

, Shields

, Taylor

: Training family to assist with physiotherapy for older people transitioning from hospital to the community: A pilot randomized controlled trial. Clin Rehabil, 2019; 33:1625–1635.

61.

Parker Oliver

, Demiris

, Washington

, et al.: Hospice family caregiver involvement in care plan meetings: A mixed-methods randomized controlled trial. Am J Hosp Palliat Care, 2017; 34:849–859.

62.

: Effects of a Health and Social Collaborative Case Management Model on Health outcomes of family caregivers of frail older adults: Preliminary data from a Pilot Randomized Controlled Trial. J Am Geriatr Soc, 2016; 64:2144–2148.

63.

Wittenberg-Lyles

, Kruse

, Oliver

, et al.: Exploring the collective hospice caregiving experience. J Palliat Med, 2014; 17:50–55.

64.

Demiris

, Parker Oliver

, Wittenberg-Lyles

, et al.: A noninferiority trial of a problem-solving intervention for hospice caregivers: In person versus videophone. J Palliat Med, 2012; 15:653–660.

65.

Revicki

, Kawata

, Harnam

, et al.: Predicting EuroQol (EQ-5D) scores from the patient-reported outcomes measurement information system (PROMIS) global items and domain item banks in a United States sample. Qual Life Res, 2009; 18:783–791.

66.

Hays

, Shapiro

: An overview of generic health-related quality of life measures for HIV research. Qual Life Res, 1992; 1:91–97.

67.

Hays

, Spritzer

, Reise

: Using Item Response Theory to Identify Responders to Treatment: Example with the Patient—Reported Outcomes Measurement Information System (PROMIS) Physical Function Scale and Emotional Distress

Composite

. Psychometr.

68.

Weitzner

, Jakobsen

, Wagner

Jr et al.: The Caregiver Quality of Life Index-Cancer (CQOLC) scale: Development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res, 1999; 8:55–63.

69.

Cella DF, Tulsky DS, Gray G, et al.: The Functional Assessment of Cancer Therapy (FACT) scale: Development and validation of the ge 570–579.

70.

Longsdon

, Wood

: Business citizenship: From domestic to global level of analysis. Business ethics quartely, 2002; 12:155–158.

71.

WHOQOL Group. Development of the WHOQOL: Rationale and current status. International Journal of Mental Health, 1994; 23:24–25.

72.

Cohen

, Mount

, Strobel

, et al.: The McGill Quality of Life Questionnaire: A measure of quality of life appropriate for people with advenced disease. A preliminary study of validity and acceptability. Palliati Med, 1995; 9:207–219.

73.

Hi-Po Lau

, Wong

DFK

, Fung

, et al.: Facing death alone or together? Investigating the interdependence of death anxiety, dysfunctional attitudes and quality of life in patient-caregiver dyads confronting lung cancer. Psychooncology, 2018; 27:2045–2051.

74.

Mosher

, Given

, Ostroff

: Barriers to mental health service use among distressed family caregivers of lung cancer patients. Eur J Cancer Care (Engl), 2015; 24:50–59.

75.

Roche

: The hidden patient: Addressing the caregiver. Am J Med Sci, 2009; 337:199–204.

76.

Moreira

, Sousa

, Poveda

VdB

, Turrini

RNT

. Self-esteem of cancer patients' caregivers with reduced functional capacity. Esc Anna Nery, 2015; 19:316–322.