Psychometric Evaluation of the Caring Ability of the Family Caregivers of the Patients in Need of Palliative Care Scale (CAFCPNPCS): A Methodological Study

doi:10.21203/rs.3.rs-3796351/v1

Download PDF

Research Article

Psychometric Evaluation of the Caring Ability of the Family Caregivers of the Patients in Need of Palliative Care Scale (CAFCPNPCS): A Methodological Study

https://doi.org/10.21203/rs.3.rs-3796351/v1

This work is licensed under a CC BY 4.0 License

Journal Publication

published 30 Apr, 2024

Read the published version in Nursing Practice Today →

Version 1

posted

You are reading this latest preprint version

Background

Since family caregivers play an important role in providing care for the patients in need of palliative care, it is important to focus on and examine their care ability in fulfilling the expected roles. Therefore, this study was conducted with the aim of performing a psychometric evaluation of the Caring Ability of the Family Caregivers of the Patients in Need of Palliative Care Scale (CAFCPNPCS).

Methods

The present study is methodological research that evaluates the psychometric characteristics of the CAFCPNPCS by measuring face validity, content validity, construct validity (confirmatory factor analysis and divergent validity) and internal consistency in 412 family caregivers of the patients in need of palliative care, who were selected through convenient sampling. The data were analyzed using SPSS 24 and LISREL 8.8.

Results

According to the confirmatory factor analysis, the 5-factor model with 31 items was confirmed with the values RMSEA = 0.05, CFI = 0.95 and GFI = 0.88. The divergent validity was measured by estimation of correlation between the caring ability score with care burden score (which was measured by Zarit Burden Interview) of the family caregivers of the patients in need of palliative care. Cronbach's alpha (α) was reported to be 0.846 for the whole scale and 0.781–0.852 for other dimensions.

Conclusion

CAFCPNPCS is a valid and reliable tool that can evaluate the caring ability of the family caregivers of the patients in need of palliative care. Based on the results, it is recommended to utilize this scale to determine these caregivers’ ability in providing care and to examine the effectiveness of interventions with the aim of improving the dimensions of their caring ability.

palliative care

CAFCPCS

caring ability

caregivers

informal caregivers

Palliative care is an important part of integrated and people-centered healthcare services, which aims to improve the quality of life among terminally ill patients and their families through prevention, screening, early diagnosis, suffering and pain relief, and the assessment and treatment of physical, mental, spiritual and social issues [1]. It is estimated that more than 56.8 million people need palliative care every year, 25.7 million of whom are in the last year of their lives. 78 percent of the latter group live in low- and middle-income countries [2]. According to World Health Organization statistics, in EMRO region, under 1% of the patients in need of palliative care receive this type of care [3].

Due to the complicated symptoms and problems, these patients gradually become dependent on the family caregivers who are the main source of support. The diagnosis of an incurable disease and the resulting changes sometimes disrupts the family system and requires changes to include the patient’s medical care needs in the daily routine [4]. Although the onset of a chronic disease impacts the entire family, the responsibility of care provision usually rests with one family member, who is the primary caregiver [5]. Besides having to fulfill multiple roles, the main caregiver has to manage his/her mental concerns as well as the patient’s concerns during the course of the disease [6].

This care activity is often provided unexpected, without prior knowledge and preparation, which can negatively affect the quality of care and lead to a variety of physical, mental, social, spiritual, and financial challenges for caregivers, which usually remain unaddressed [5, 7, 8]. In addition, the burden of care, limited activities, fear, insecurity, loneliness, the prospect of the patient’s death, and the lack of emotional support will increase the risk of fatigue, vulnerability, and burnout among family caregivers [9]. Therefore, neglecting caregivers’ needs may lead to a low quality of life in them [6]. Based on the results of a systematic review, it leads to physical and mental challenges, the lack of adaptation to caregiving challenges, and an information gap [10]. Therefore, providing these complicated types of care demands family’s high knowledge and skills, and family caregivers’ sufficient information on the disease and how to provide care for the sick family member [11].

Care providers should empower and support family caregivers and help them acquire the necessary knowledge and skills in order to provide quality care [11]. The first step in providing support for this group of caregivers is awareness of their education and care needs in the form of a concept called caring ability [12]. Measuring and evaluating their skills, as part of this concept, determines the required educational program [13]. Caring ability is defined as the degree of applying care strategies while maintaining physical and mental health, care competence and preparedness, spiritual coherence and economic status appropriate for addressing patients’ care and treatment needs, so that care burnout and confusion is avoided if the caregiver has the ability to provide care [11].

Obviously, to investigate these abilities in the form of caring ability, it is necessary to have valid tools for the target population. Measuring the family caregivers’ caring ability can determine their strengths and weaknesses and help professional staff to plan more precisely in this regard [11, 14]. However, a suitable tool that can specifically measure the caring ability of family caregivers of patients in need of palliative care was not found. In 2020, Nemati et al. designed the Caring Ability of the Family Caregivers of the Patients with Cancer Scale (CAFCPCS) to measure the caring ability of family caregivers of patients with cancer in mixed methods research with an exploratory sequential approach. Since CAFCPCS is designed in accordance with the social and cultural characteristics of the family caregivers of the cancer patients in Iran and has acceptable psychometric properties, it seems that it can be used to examine the caring ability of the family caregivers of all patients in need of palliative care. The validation of this tool may lead to a better assessment of the caring ability of the family caregivers and identifying their strengths and weaknesses in the field of care provision which may help professional staff make more accurate plans for empowering the family to provide quality care at home. Therefore, this study was conducted with the aim of performing the psychometric assessment of the caring ability of the family caregivers of the patients in need of palliative care.

Study Design

The current study is methodological research that investigates the psychometric properties of CAFCPCS among the family caregivers of the patients in need of palliative care based on face and content validity, confirmatory factor analysis, divergent validity, internal consistency, and stability.

Study Settings and Participants

Data collection was done from March to July 2022. The sample consisted of the family caregivers of the patients in need of palliative care, including patients with cancer, heart failure, heart attack, and stroke, which are considered common conditions requiring palliative care according to the Global Atlas of Palliative Care [3]. These caregivers were selected through convenient sampling. The inclusion criteria consisted of providing care for a patient in need of palliative care who was over 18 years of age with a Palliative Performance Scale (PPPS) ≤ 40 and at least 6 months’ experience of providing direct patient care at home.

PPS is a tool designed to measure physical functional performance in palliative care patients. This tool evaluates five functional parameters including the namely degree of ambulation, the ability to do activities and extent of disease, the ability to do self-care, food and fluid intake, and the state of consciousness. There are 11 levels of PPS, ranging from 0 to 100% in 10 percent increments for measuring the scores. Any decrease by 10%, represents a relatively significant decrease in the physical functional performance. For example, a person with a score of 0 is passed away, and a score of 100% is completely ambulatory and healthy [15].

The exclusion criteria consisted of not fully completing the questionnaire and withdrawal from study.

Instruments

Data were collected through demographic variables questionnaire, CAFCPCS, and Zarit Burden Interview (ZBI).

Demographic variables include age, gender, marital status, level of education, occupation, income, relationship with patient, the length of care provision, and the patient’s condition.

CAFCPCS has been developed by Nemati et al. (2020) and consists of 31 items in 5 dimensions: effective role play (12 items), fatigue & surrender (8 items), trust (3 items), uncertainty (4 items) and caring ignorance (4 items), which are scored on a 5-point Likert scale ranging from completely agree (5), agree (4), no opinion (3), disagree (2), completely disagree (1). The total score of the instrument was 155 with a maximum score of 31. The Cronbach’s α is 0.93 for the whole scale and 0.705–0.933 for the dimensions. The internal consistency coefficient (ICC) of the instrument was 0.93 [11].

ZBI has been developed by Zarit et al. (1986) to determine the mental burden of disease and has 22 items on a 5-point Likert scale consisting of never (0), seldom (1), sometimes (2), most of the time (3), and always (4) [16]. The sum of the scores obtained by each caregiver will determine the disease burden [17]. This tool has been translated and validated in Iran, and the cut-off value for this questionnaire has been determined based on Iranian society standards. A score below 30 is classified as a mild disease burden, 31–60 as moderate, and 61–88 as severe. The minimum and maximum scores for each person are 0 and 88, respectively, where a higher score indicates more mental pressure and vice versa [17]. The Cronbach's alpha of the tool was calculated as 0.71 in the current study.

Study Processes

The research settings consisted of chronic disease clinics and the inpatient wards of the 3 selected referral hospitals. The family caregivers meeting the inclusion criteria were selected through convenience sampling to participate in the study. If they signed the written informed consent, they were given the demographic data questionnaire, the caring ability scale, and the burden scale.

Content Validity and Cognitive Evaluation

To examine the content validity, CAFCPCS was given to 8 experts in the fields of palliative care and scale development to check the scale in terms of the appropriateness of the items used for the patients in need of palliative care. For cognitive evaluation, the researchers asked 10 family caregivers of the patients in need of palliative care who met the research criteria to complete the scale and comment on the understandability of the items and the time required to answer them.

Construct Validity

The construct validity was examined through two methods: performing Confirmatory Factor Analysis (CFA) and measuring divergent validity. CFA is a technique for structural equation modeling [18]. In order to determine the goodness-of-fit, the maximum likelihood estimation (MLE) was done. There are several fit indices to decide about the appropriateness of the model [19, 20]. To perform CFA, a number of at least 250 samples is necessary for an accurate data analysis. With this number of samples, the approximation test can be done with a power of 0.80 using the root mean square error of approximation (RMSEA) for a model with a degree of freedom of 100 in structural equation modeling [21]. In this study, the data of 412 samples were analyzed using LISREL V8.8 to determine whether the CAFCPCS items are valid indicators to examine the caring ability of family caregivers of patients in need of palliative care and the 5-factor model is approved to be used in this research population.

Considering that, according to the studies, high caring ability is associated with a low score of the burden of care [22, 23], the correlation coefficient between CAFCPCS scores and ZBI was calculated in order to evaluate the divergent validity.

Reliability

The internal consistency was investigated by calculating Cronbach’s alpha for the whole scale and each of the 5 dimensions.

Data Analysis

CFA-related data was analyzed through calculating the fit indices including CFI, GFI, and RMSEA using LISREL 8.8. all the data related to the reliability of scale such as Cronbach’s alpha and divergent validity coefficient were analyzed through SPSS 24.

A total of 412 questionnaires were evaluated and statistically analyzed in this study. According to the data, 34.7% of the caregivers were 20–30 years old and 72.3% were female, of which 41.5% had 1 to 3 years’ caregiving experience. Other demographic characteristics of the subjects are shown in Table 1.

Table 1

Demographic and characteristics of participants
Variables		Frequency	Percent
Age (year)	20–30	143	34.7
	31–40	109	26.5
	41–50	87	21.1
	51–60	53	12.9
	≥ 61	20	4.9
Gender	Female	298	72.3
Gender	Male	114	27.7
Marital status	Single	118	28.6
	Married	185	44.9
	Widow	72	17.5
	Divorced	23	5.6
	Deceased	14	3.4
Educational status	High school	66	16
	Diploma	152	36.9
	Academic	194	47
Job	Employed	145	35.2
	Unemployed	197	47.8
	Retired	42	10.02
	Out of service	28	6.8
Relationship with patient	Spouse	122	29.6
	Child	147	35.7
	Mother	50	12.1
	Father	81	19.7
	Other relatives	12	2.9
Times caring (year)	Less than 1	171	41.5
	1–3	142	34.5
	3–5	58	14.1
	5–10	21	5.1
	More than 10	20	4.9
Type of disease	Chronic heart failure	81	19.7
	Cancer	149	36.2
	MI	88	21.4
	Stroke	66	16
	Diabetes	6	1.5
	Dementia/ Alzheimer	3	0.7
	Multiple sclerosis (MS)	8	1.9
	Other	11	2.7

According to the participants, no changes were made to the items while examining the content validity and cognitive evaluation of the tool.

The results of the confirmatory factor analysis showed that according to the scores of goodness of fit indices, the model has a favorable fit (Table 2). As seen in Fig. 1, CFA results for the 5-factor model show that all dimensions have an acceptable correlation coefficient. Furthermore, based on the T-value test, all the relationships between dimensions and their items are significant and there is no heterogeneity (Fig. 2). Therefore, the desired model and its constituent concepts are acceptable according to the fit indices, where χ²/df < 2 (25), RMSEA˂ 0.08, CFI ≥ 0.90, GFI ≥ 0.90 (26), and NNFI ≥ 0.90 (27).

Table 2

The values of CFA fit indices for the 5-factor model with 31 items
Goodness of Fit Indices	Χ²	df	χ²/df	CFI	IFI	RMSEA	GFI	NFI	NNFI	RFI	SRMR
Goodness of Fit Indices	884.42	424	2.08	0.95	0.95	0.05	0.88	0.91	0.95	0.90	0.05

In order to investigate the divergent validity, the correlation between the caring ability score of the family caregivers of the patients in need of palliative care with the score of Zarit Burden Interview was determined as r=-0.451 (P < 0.001).

The internal consistency of all items in the original version of the tool was determined for a number of 412 samples. Cronbach's alpha was reported as α = 0.846 for the whole scale and α = 0.781–0.852 for other dimensions.

The increased number of the patients in need of palliative care has caused many issues in the health systems, which apparently may be partially addressed by using the capacity of family caregivers. Since the assessment of their caring ability is the first step to design empowerment programs, this study was conducted with the aim of the psychometric evaluation of the caring ability of the family caregivers of the patients in need of palliative care. Despite the fact that in the Iranian culture, taking care of sick people by family members is considered as a value [11], studies refer to caregivers’ lack of familiarity and preparedness to play the role of the caregiver, and the acquisition of care knowledge and skills as an unmet need among caregivers [24, 25]. Therefore, awareness of their ability to provide care can help care providers better plan care based on their needs [26]. According to Global Atlas of Palliative Care, in 20 types of diseases, patients need palliative care [3]. In the present study, these diseases were selected from among the most common diseases that lead to the burden of disease in Iran [27].

The original version of CAFCPCS, which was developed by Nemati et al. to assess the caring ability of the caregivers of the patients with cancer, with 31 items and 5 dimensions [11] was the closest most appropriate tool available to evaluate the caring ability of the family caregivers of the patients in need of palliative care, because the patients with cancer are one of the largest groups with the indications of palliative care. CFA was used to check the construct validity of the instrument. The purpose of CFA is to discover whether or not the research data confirms the theoretical model presented by the original tool [28]. According to the findings, the measured indicators are satisfactory, and the model shows a proper fit. This tool was validated in 2020 to investigate the caring ability of the mothers of the children with cancer. In the version for the mothers of the children with cancer, 29 items remained in 5 dimensions, after removing an item from the dimension effective role play (item 10) and another one from the dimension caring ignorance (item 29) [14].

The first dimension of CAFCPNPCS is effective role play with 12 items, expressing the appropriate performance of the family caregivers of the patients in need of palliative care including detecting and addressing the patient’s care needs, emotional control over the family in the crisis caused by the disease and its outcomes, the ability to make decisions and solve problems, encouraging the patient to participate in social activities and motivating the patient through psychological support [11]. This dimension focuses on empowering the family and preparing them to play an effective role in care. Considering that patients need palliative care mostly at the end of life, the limited resources in healthcare centers for long-term care at the end-of-life stages as well as the absence of such centers (hospice) in the country on the one hand [29] and the patients’ desire to receive care at home on the other hand [30], empowering family members to play an effective role in this regard has become very important [31]. Items such as “I am able to take care of my patient and solve his/her problems” and “I am aware of my patient's needs” indicate the caregiver’s ability to provide care.

Items such as “When there is a problem, I decide what needs to be done and do it.”, “I feel like I'm a good caregiver.”, and “I easily implement the trainings offered by professional caregivers while providing care for my patient and solving his/her problems” show family caregivers’ knowledge, skill, self-confidence, and capability regarding care provision and their need to receive training or advice from care providers in time of need. It is obvious that family caregiver’s playing an effective role in patient care requires physical, mental, social, and spiritual support to minimize the care burden and stress from the beginning of the care provision to the mourning period after the patient’s demise [32].

In the dimension fatigue and surrender, which represents the negative outcomes of care, 8 items of the original questionnaire were retained. This dimension has remained unchanged in CAFCPCS-mothers’ version [14]. Due to the patient’s stress and worry, this dimension covers a range of psychosocial and economic issues that can lead to fatigue and indifference in patient care [33]. The importance of this dimension in measuring care ability is that even if family caregivers have the necessary care knowledge and skills, they need full support from others in the care process. Failure to meet these needs will affect not only the caregivers, but also the entire care process. The pressure that caregivers experience as a result of the imbalance between care requirements and the available supportive resources to fulfill them [34] will cause a constant and increasing burden of care during the course of disease [35]. Therefore, the reactions related to the negative outcomes of care can be normal. In order to reduce these outcomes from an individual, mental, and social point of view, it seems necessary for other family members and the society to support family caregivers.

The third dimension of CAFCPNPCS is trust with 3 items, which has remained unchanged compared to CAFCPCS. This dimension is a combination of spirituality and ability, and an item like “I believe that only God can help my patient” shows submission to divine destiny. This dimension is related to spirituality and finding meaning in life and indicates that one’s spiritual beliefs can have an impact on coping with crises and solving the related problems and help his/her grow [36]. Family caregivers use the meaning of life and trust in a higher power as a coping strategy to achieve goals, resolve conflicts, and adapt to the situation [37, 38]. They create a meaningful framework for the disease and the resulting suffering, which makes it easier for them to accept the existing condition. In the study conducted on the family caregivers of cancer patients in Iran, a wide range of challenges was observed, from spiritual crisis to spiritual cohesion among the caregivers of this group of patients. Spiritual crisis is associated with the feeling of disharmony, detachment, and loss of meaning and purpose in life, and spiritual coherence refers to a uniform framework, a whole that encompasses harmony, and the search for meaning [36]. In Iran, due to the prevalence of Iranian-Islamic culture, patients and their caregivers somehow try to protect themselves from stress, disasters, and diseases by having confidence in spiritual resources [39]. A crisis may challenge one’s religious beliefs and faith, or on the contrary, force him/her to use faith as a coping resource (46), leading to spiritual stabilization or “awakening” and coherence [40, 41].

The dimension uncertainty has 4 items. Things like worrying about the patient and waiting for bad news reflects this uncertainty. Uncertainty in illness scale [42] translated and validated by Sajjadi et al. [43] in Iran, includes concepts similar to this dimension, too. Uncertainty in disease includes “the patient or the family’s inability to determine the meaning of disease-related incidents when they are unable to process these events or cannot specifically predict the disease outcomes due to insufficient symptoms [43]. This is not simply the result of the complexity of the disease and its treatment; the lack of knowledge and not disclosing information about the disease [44] can limit involvement in decision-making and lead to “decision paralysis” [45, 46]. Since the lack of knowledge and awareness about the course and prognosis of the disease and care provision will cause uncertainty among caregivers, it is necessary for caregivers to gain knowledge and be empowered in this regard.

Caring ignorance with 4 items refers to the caregivers’ lack of awareness of the patient’s care needs and not addressing these needs due to insufficient care knowledge and skills, which is considered to be one of the factors affecting the quality of patient care [11]. The items “I don't know what to do in the next step of the treatment”, “I need to receive training and perceptible information to provide care for the patient”, “I don't have enough information on how to control the problems and the side effects of the patient’s treatment”, emphasize caregivers’ lack of information and skills regarding patient care. Meeting care needs depends on factors such as caregivers’ knowledge and skills. Therefore, in addition to examining the patient's care needs, professional caregivers should also guide the family in terms of access to proper and available resources and make a clear assessment of knowledge, skills, and the acceptance of caregiving role in the family.

In order to investigate the divergent validity, the correlation between the scores of CAFCPNPCS and ZBI was defined, which showed that with an increase in caring ability, the burden of care decreases. The results of the study by Coppetti et al et al (2019) showed that family caregivers’ caring ability increases when there is reduced care burden and stress [22]. In addition, the burden of care among dialysis patients has an inverse relationship with the ability to provide care and the quality of life [47]. In addition, Abbasi et al. (2011) reported a significant and negative correlation between the burden of care and the ability to perform personal activities, which is consistent with the findings of the present study [48]. One of the most important factors impacting the burden of care is the lack of knowledge, awareness, and necessary skills for patient care [49]. Therefore, by teaching the caregivers how to provide care for the patient at home and problem-oriented coping skills, they can be empowered to fulfill caregiving roles, and adapt to the responsibilities and changes in their lifestyle following the provision of care for the patient at home, resulting in reduced burden of care.

Reliability is the major concern while using a psychological test. Based on the results of the research, Cronbach's alpha was measured to be 0.78 for the whole tool, and 0.78–0.85 for its dimensions, which was acceptable. In the study of Khademi et al, Cronbach's alpha of CAFCPCS-mother’s version was reported to be 0.71, and in the study by Nemati et al, it was 0.93 [7, 36]. According to the results, the items of the scale are accurate, reliable, repeatable, and acceptable [50].

Study Limitations

Given that Iran is a vast country with different ethnicities and cultures, it should be noted that the cultural values of the society limit the generalization of the findings to the whole society. On the other hand, the patients in need of palliative care include a wide range of patients whose various needs may lead to differences in the dimensions of their family caregivers’ ability to provide care. Therefore, it is suggested to conduct a study in different groups in terms of the type of disease and the geographical region.

This study was conducted with the aim of psychometric evaluation of CAFCPNPCS. The desired scale contains 31 items and 5 dimensions and provides the opportunity to evaluate the care ability of the family caregivers of the patients in need of palliative care in the Iranian culture. Based on the results of the study, it is recommended to use this scale to determine the caring ability of the family caregivers of the patients in need of palliative care and the effective interventions, in order to improve each dimension of caring ability and, in turn, to enhance the caring ability itself. Since the purpose of providing palliative care is to improve the quality of life for the patient and the family, through measuring the care ability of the family caregivers of this group of patients, care providers will be able to identify the educational needs, to find out what needs to be improved, and to develop an appropriate care plan.

Ethics approval and consent to participate in the study

This study was confirmed by the Research Ethics Committee of the Cancer Research Center of Shahid Beheshti University of Medical Sciences under the code IR.SBMU.CRC.REC.1400.043. All methods were carried out in accordance with relevant guidelines and regulations. All experimental protocols were approved by Cancer Research Center of Shahid Beheshti University of Medical Sciences. After the code of ethics was approved, the researchers obtained the necessary permits for sampling and presented it to the selected related centers. Then the research objectives were explained to all the participants. Data confidentiality and privacy, and anonymous data analysis were observed in all the phases of the research.

Consent for publication

Not applicable.

Availability of data and materials

The data sets generated during the current study are not available for public reasons since they are based on the statements of nursing policymakers; however, they are available at the reasonable request of the author.

Competing interests

The authors declare that they have no competing interests.

Funding

No funding was received for this article.

Authors' contributions

Study design: HA, MR, ASHF; Data collection: MK, HA, FKH; Data analysis: ASD, MN, LKH; Study supervision: AS, HA, FKH; Manuscript writing: HA, MR, ASD. Critical revisions for important intellectual content: HA, MR, ASD, ASHF. All authors read and approved the final manuscript.

Acknowledgement

The authors would like to appreciate the Deputy of Research of Shahid Beheshti University of Medical Science for their support and thank all the Family Caregivers of the Patients in Need of Palliative Care participating in this study.

Assessing the development of palliative care worldwide: a set of actionable indicators [https://www.who.int/publications/i/item/9789240033351]
Quality health services and palliative care: practical approaches and resources to support policy, strategy and practice [https://www.who.int/publications/i/item/9789240035164]
World Health Organization: Global Atlas of Palliative Care, 2nd Edition edn. London, UK 2020: Worldwide Hospice Palliative Care Alliance (WHPCA); 2020.
Costa TFd, Costa KNdFM, Martins KP, Fernandes MdGdM, Brito SdS: Sobrecarga en los cuidadores familiares de ancianos accidente cerebrovascular. Escola Anna Nery 2015, 19:350-355.
Landeiro MJL, Peres HHC, Martins T: Avaliação de necessidades informacionais dos cuidadores domiciliares. Revista de Enfermagem da UFSM 2015, 5(3):486-498.
Barlund AS, André B, Sand K, Brenne A-T: A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer. BMC Palliative Care 2021, 20(1):1-12.
Khademi F, Rassouli M, Mojen LK, Heidarzadeh M, Farahani AS, Borumandnia N: Caring power of mothers who have a child with cancer and its predictors. Iranian Journal of Pediatric Hematology & Oncology 2019.
Ullrich A, Marx G, Bergelt C, Benze G, Zhang Y, Wowretzko F, Heine J, Dickel L-M, Nauck F, Bokemeyer C: Supportive care needs and service use during palliative care in family caregivers of patients with advanced cancer: a prospective longitudinal study. Supportive Care in Cancer 2021, 29(3):1303-1315.
Tarberg AS, Kvangarsnes M, Hole T, Thronæs M, Madssen TS, Landstad BJ: Silent voices: Family caregivers' narratives of involvement in palliative care. Nursing open 2019, 6(4):1446-1454.
Bee PE, Barnes P, Luker KA: A systematic review of informal caregivers’ needs in providing home‐based end‐of‐life care to people with cancer. Journal of clinical nursing 2009, 18(10):1379-1393.
Nemati S, Rassouli M, Ilkhani M, Baghestani AR, Nemati M: Development and validation of ‘caring ability of family caregivers of patients with cancer scale (CAFCPCS)’. Scandinavian journal of caring sciences 2020, 34(4):899-908.
Given BA, Given CW, Sherwood PR: Family and caregiver needs over the course of the cancer trajectory. The journal of supportive oncology 2012, 10(2):57-64.
Gallagher-Thompson D, Coon DW: Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and aging 2007, 22(1):37.
Khademi F, Rassouli M, Heidarzadeh M: Psychometric Evaluation of the Caring Ability of Family Caregivers of Patients With Cancer Scale-Mothers' Version for the Mothers of Children With Cancer. Cancer Nursing 2020.
Anderson F, Downing GM, Hill J, Casorso L, Lerch N: Palliative Performance Scale (PPS): A New Tool. Journal of Palliative Care 1996, 12(1):5-11.
Zarit SH, Todd PA, Zarit JM: Subjective burden of husbands and wives as caregivers: a longitudinal study. The Gerontologist 1986, 26(3):260-266.
Navidian A, Pahlavanzadeh S, Yazdani M: The Effectiveness of Family Training on Family Caregivers of Inpatients with Mental Disorders. Iranian Journal of Psychiatry and Clinical Psychology 2010, 16(2):99-106.
Kline RB: Promise and pitfalls of structural equation modeling in gifted research. 2010.
Brown T: CFA with equality constraints, multiple groups, and mean structures Confirmatory factor analysis for applied research (pp. 236-319). In.: New York, NY: The Guilford Press; 2006.
Seo D-C, Torabi MR, Blair EH, Ellis NT: A cross-validation of safety climate scale using confirmatory factor analytic approach. Journal of safety research 2004, 35(4):427-445.
Boomsma A, Hoogland JJ: The robustness of LISREL modeling revisited. Structural equation models: Present and future A Festschrift in honor of Karl Jöreskog 2001, 2(3):139-168.
Coppetti LdC, Girardon-Perlini NMO, Andolhe R, Silva LMCd, Dapper SN, Noro E: Caring ability, burden, stress and coping of family caregivers of people in cancer treatment. Revista Brasileira de Enfermagem 2019, 72:1541-1546.
Sánchez Martínez RT, Molina Cardona EM, Gómez-Ortega OR: Intervenciones de enfermería para disminuir la sobrecarga en cuidadores: un estudio piloto. Revista Cuidarte 2016, 7(1):1171-1184.
Alvariza A, Häger-Tibell L, Holm M, Steineck G, Kreicbergs U: Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home–Study protocol for a web-based intervention. BMC palliative care 2020, 19:1-8.
Hudson P, Aranda S: The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients. BMJ Supportive & Palliative Care 2014, 4(3):231-237.
Nemati S, Rassouli M, Ilkhani M, Baghestani AR: Perceptions of family caregivers of cancer patients about the challenges of caregiving: a qualitative study. Scandinavian journal of caring sciences 2018, 32(1):309-316.
Peykari N, Hashemi H, Dinarvand R, Haji-Aghajani M, Malekzadeh R, Sadrolsadat A, Sayyari AA, Asadi-lari M, Delavari A, Farzadfar F et al: National action plan for non-communicable diseases prevention and control in Iran; a response to emerging epidemic. Journal of Diabetes & Metabolic Disorders 2017, 16(1):3.
Thompson B: Exploratory and confirmatory factor analysis: Understanding concepts and applications: American Psychological Association; 2004.
Barasteh S, Parandeh A, Rassouli M, Zaboli R, Vahedian-Azimi A, Khaghanizadeh M: Integration of palliative care into the primary health care of iran: a document analysis. Middle East Journal of Cancer 2021, 12(2):292-300.
Fereidouni A, Salesi M, Rassouli M, Hosseinzadegan F, Javid M, Karami M, Elahikhah M, Barasteh S: Preferred place of death and end-of-life care for adult cancer patients in Iran: A cross-sectional study. Frontiers in Oncology 2022, 12.
Hashemlu L, Esmaeili R, Bahramnezhad F, Rohani C: The experiences of home care team members regarding the needs of family caregivers of heart failure patients in home health care services in Iran: A qualitative study. ARYA atherosclerosis 2022, 18(4):1-10.
Glajchen M: Family caregivers in palliative care and hospice: minimizing burden and maximizing support. Alexandria, VA: National Hospice and Palliative Care Organization Palliative Care Resource Series 2016.
Bevans M, Sternberg EM: Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. Jama 2012, 307(4):398-403.
Kim Y, Given BA: Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 2008, 112(S11):2556-2568.
Bijnsdorp FM, Onwuteaka-Philipsen BD, Boot CRL, van der Beek AJ, Pasman HRW: Caregiver’s burden at the end of life of their loved one: insights from a longitudinal qualitative study among working family caregivers. BMC Palliative Care 2022, 21(1):142.
Nemati S, Rassouli M, Baghestani AR: The spiritual challenges faced by family caregivers of patients with cancer: A qualitative study. Holistic nursing practice 2017, 31(2):110-117.
Lalani N, Duggleby W, Olson J: Spirituality among family caregivers in palliative care: an integrative literature review. Int J Palliat Nurs 2018, 24(2):80-91.
Rocha RCNP, Pereira ER, Silva RMCRA, Medeiros AYBBVd, Refrande SM, Refrande NA: Spiritual needs experienced by the patient's family caregiver under Oncology palliative care. Revista brasileira de enfermagem 2018, 71:2635-2642.
Zand, rafiei: Patients' Religious Care: A Neglected Need in Medical Education. Journal of Medical Education Development 2016, 8(20):50-58.
Lips‐Wiersma M: The influence of spiritual “meaning‐making” on career behavior. Journal of Management Development 2002, 21(7):497-520.
Weber SR, Pargament KI: The role of religion and spirituality in mental health. Current opinion in psychiatry 2014, 27(5):358-363.
Mishel MH: Uncertainty in illness. Image: The Journal of Nursing Scholarship 1988, 20(4):225-232.
Sajjadi M, Rassouli M, Abbaszadeh A, Majd HA, Zendehdel K: Psychometric properties of the Persian version of the Mishel's Uncertainty in Illness Scale in patients with cancer. European Journal of Oncology Nursing 2014, 18(1):52-57.
Sajjadi M, Rassouli M, Abbaszadeh A, Brant J, Majd HA: Lived experiences of “illness uncertainty” of Iranian cancer patients: A phenomenological hermeneutic study. Cancer nursing 2016, 39(4):E1-E9.
Oksavik JD, Solbjør M, Kirchhoff R, Sogstad MKR: Games of uncertainty: the participation of older patients with multimorbidity in care planning meetings–a qualitative study. BMC geriatrics 2021, 21(1):1-11.
Sellars M, Chung O, Nolte L, Tong A, Pond D, Fetherstonhaugh D, McInerney F, Sinclair C, Detering KM: Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies. Palliative medicine 2019, 33(3):274-290.
Jafari H, Ebrahimi A, Aghaei A, Khatony A: The relationship between care burden and quality of life in caregivers of hemodialysis patients. BMC nephrology 2018, 19(1):321.
Abbasi a, Asayesh h, Rhariati a, Hosseini sa, Rouhi g, Molaie e: The Burden on Cargivers from Hemodialysis Patients and Related Factors. Journal of Research Development in Nursing and Midwifery 2011, 8(1):26-33.
Sabzalipoor f, Fotoukian Z, Ahmadi h, Jannat Alipour Z: Factors related to the care burden in family caregivers of the elderly with chronic diseases - a review study. Journal of Caspian Health and Aging 2021, 6(1):29-52.
Shirinabadi Farahani A, Bussing A, Akbari ME, Ashrafizadeh H, Heidarzadeh M, Hatamipour K, Tabatabaee A, Ansari M, Karami M, Fallahi S et al: The Translation and Psychometric Evaluation of the Persian Version of Brief Multidimensional Life Satisfaction Scale for Iranian Patients with Cancer. Int J Cancer Manag 2021, 14(7):e113588.

No competing interests reported.

Download PDF

Journal Publication

published 30 Apr, 2024

Read the published version in Nursing Practice Today →

Version 1

posted

You are reading this latest preprint version

Psychometric Evaluation of the Caring Ability of the Family Caregivers of the Patients in Need of Palliative Care Scale (CAFCPNPCS): A Methodological Study

Status:

Journal Publication

Version 1

Abstract

Background

Methods

Results

Conclusion

Figures

Background

Methods

Study Design

Study Settings and Participants

Instruments

Study Processes

Content Validity and Cognitive Evaluation

Construct Validity

Reliability

Data Analysis

Results

Discussion

Study Limitations

Conclusion

Declarations

References

Additional Declarations

Status:

Journal Publication

Version 1