The increasing longevity within the population and the rapid growth in the number of persons who suffer from chronic conditions, together with the phenomena of pluripathology and the associated greater fragility and complexity, constitute an important focus of attention in the reforms of the health and social systems in the modern societies. [1
]. In Spain, it is estimated that there are almost 20 million people with chronic health problems for whose care three-quarters of the country’s health resources are allocated [4
In the 1990s, new organizational models of caring for chronicity and interventions began being proposed to provide an appropriate and proportional response to this phenomenon [5
]. Attention was placed on the wellbeing of the person and in promoting his or her active participation to maintain that wellbeing within the framework of integrated care [7
]. With this purpose in mind, the Instrument for the Assessment of Chronic Care Models (IEMAC-ARCHO) was designed in Spain in 2012.
] is an instrument for evaluating the new ways of organizing the response of health and social systems to the phenomenon of chronicity, designed and validated within the Spanish context. This instrument allowed the identification of gaps in our organizational model and in the interventions to address the needs of the most fragile and chronic persons and those of the persons who live with them [9
]. One of these gaps is the care for persons who care for others, normally, family members.
Within our surroundings, family caregivers take care of the daily needs of 75% of the persons older than 65 with pluripathology, fragility, and certain complexity, and this figure might be even higher [10
]. Their intervention is essential for meeting the needs of these people.
Family caregivers tend to be mostly women (around 84%), with an average age of 53, housekeepers (44%), lack their own income and, in most cases, are daughters or spouses of the person under their care. Around 60% have low levels of education (without any or only primary level studies) [10
]. The life of the caregiver, in most cases, revolves around the person in their care, and they quit jobs and live with the patient, fulfilling their role without any type of schedule [11
The amount of care that a person may require has been related with the repercussions upon the physical, emotional, social, and family health in their caregivers. Therefore, there is a need to personalize this assessment in terms of the experience, capacity and context of the caregiver [12
]. The burden that caregivers are subjected to can be related to the presence of endocrine, nutritional, and metabolic conditions, resulting largely from the social isolation, lack of free time, low quality of life, and even a deteriorating economic situation [13
]. To measure this burden, there are some scales, being the Zarit Scale, the most used [18
]. These scales measure the consequences of the caring experience, but do not evaluate the specific aspects that can improve their experience or alleviate their physical and emotional burden [20
Family caregivers do not usually have information about support resources, and doubts persist as to whether they receive sufficient attention and support from health and social institutions. This study’s objective was to design and validate a scale to measure the experience for family caregivers with the integrated care received by the persons in their care.
This study’s protocol was approved by the Ethics Committee of Clinical research at the San Juan de Alicante University General Hospital (18/303 on 5 February 2018). The new instrument for measuring the experience of caregivers is based on the Chronic Patient Experience Evaluation Instrument (IEXPAC) [22
]. The design of this new instrument included qualitative techniques to define the scope of this instrument, content validity, legibility, and face validity. The validation included quantitative techniques to determine metric properties of each element, consistency, reliability, and construct and empirical validity analysis.
Family caregivers dedicate a portion of their time to provide care for dependent persons that are unable to perform the Basic Activities of Daily Living (BADL), within their home and in the hospital, if needed. They are family members or persons from within their environment and not linked to a professional care service [23
]. Dependency was defined as the permanent status a person finds oneself in, which for reasons due to age, illness, or disability, and linked to a loss of physical, mental, intellectual, or sensory autonomy, requires significant assistance for carrying out the BADL [23
]. The Spanish Personal Autonomy and Dependent Care Law (39/2006) recognizes different degrees of dependency, providing some type of support, mainly financial, for the most serious situations.
2.1. Face, Legibility, and Content Validity
2.1.1. Professionals’ Views
A multiprofessional panel was formed that consisted of nine care professionals from the regional health services of Andalucía, Catalonia and the Basque Country with the following profiles: physicians, nursing, social workers, case managers, and integrated area managers. The purpose of this validation phase was to evaluate the relevance/appropriateness of the scale items, the ease of understanding its items (friendliness), and the usefulness of this measure of the caregiver’s experience for the organization and professional practice. The contributions were included in the final prototype.
2.1.2. Caregivers’ Views
A qualitative study was carried out (discussion group technique) with participation by a random selection of eight family caregivers. The participants individually assessed the items from the IEXPAC instrument (except for the item on accessibility to the clinical history by the Internet), and two items added to explore whether the professionals who regularly attended to the patient were also concerned about the family caregiver own health and wellbeing and the magnitude of the emotional burden of caring for another person. There were also two possible and alternative response scales (Always to Never versus Completely Agree to Completely Disagree). In all, 16 items were assessed in terms of their perceived usefulness for making a measurement that reliably reflected their assessment about whether they receive integrated care and their suitability for measuring their experience as caregivers. Additionally, a group discussion was held about possible unexplored areas. Finally, the degree of comprehension of the scale elements was assessed by asking about possible alternative wording. The comprehension of the elements was assessed on a scale from 1 to 5. The scale’s score was calculated by simply adding the score of each element.
A random sample of 288 subjects were invited to participate during the field study (sampling error 5%, level of significance of 95%). Subjects were family caregivers of patients receiving care at healthcare centers in Catalonia, Valencian Community and Basque Country (belonging to three regional health services).
2.1.4. Item Analysis
The ceiling and floor effects were analyzed for each item, the magnitude of its correlation with the total score (rejecting values less than 0.50), its impact on the consistency of the scale upon eliminating the item, and its factorial saturation.
2.1.5. Internal Consistency and Reliability
Cronbach’s alpha was calculated for the entire scale and for each of the isolated factors in the factor analysis. As a measure of reliability, the Kuder-Richardson formula (KR20) was used considering odd-even and split-half methods of the items.
2.1.6. Construct Validity
Factor analysis of principal components was carried out by subjecting the resulting matrix to rotation by the varimax procedure. Factorial saturations greater than 0.55 were considered acceptable.
2.1.7. Empirical Validity
The scale’s predictive ability was estimated by analysis of variance (ANOVA), considering the degree of recognized patient dependence as independent variable, and hypothesizing that as this level increased, the burden for the caregiver (related to a negative experience) also increased [24
2.1.8. Translation-Back Translation
The Caregiver Experience Instrument with 12 items in Spanish and four additional questions related to situations that are common to this population group (hospital admission, going to the emergency room, home care, and care by social services) was translated into English by bilingual individuals with more than 15 years of care experience. This version was translated to English, independently, by a native English speaker with experience in English-Spanish-English translation of health reports and papers. Both versions were compared by two investigators to resolve potential inconsistencies. In the compared versions, two levels were determined: total agreement (where all items from the Spanish version to English and then back to Spanish coincide), partial agreement (where most items and the meaning that is intended with the formulation of the item coincide), or no agreement (the majority of the items do not coincide and the meaning that is intended with the formulation of the item is different).
3.1. Instrument Design
In the group sessions to determine the face and content validity, nine professionals (5 women (55.5%) and eight family caregivers participated (average age, 67 years; 100% women, 16 years’ average experience as caregiver). In this sample, the patients cared for presented the following main health conditions: Alzheimer’s in 62% of the cases, mental illness in 37%, and COPD (Chronic Obstructive Pulmonary Disease) in 25%. The professionals determined the relevance of the questions (88.9%) and use of this scale in clinical practice (100%).
The areas explored by the set of scale items were thought to address relevant aspects of their experience as caregivers. A five-point Likert response scale (range from Never to Always) was assessed as being the simplest and most comprehensible (5, 62%) versus the Completely Agree to Completely Disagree scale (3, 37%). For 87%, the presentation format that would most facilitate being answered was with pencil and paper while 50% thought an Internet format would be best. Of the 16 questions, 10 obtained an average of 5 points in the measure of comprehension. The scores ranged between 4.3 and 5 points. Modifications to wording were proposed for two items to improve their comprehension.
3.2. Instrument Validation
In the field study, 235 caregivers responded (response rate of 81.6%), of which 186 (79.1%) were women. The average age of the person in their care was 83.9 years (SD 9.7) and mostly women (141, 60%). The caregivers’ average age was 60.6 years (SD 11.7) and the average time that they had cared for the person was 6.8 years. In most cases, the patient and caregiver lived together (163, 69.4%) (Table 1
The analysis of the scale items revealed variations of as many as 2.5 points in the scores (Table 2
). No items showed a floor or ceiling effect (more extreme values were identified in the “almost never” response option in the case of two items: They respect the lifestyle of the person I care for
and They ask me about and help me follow the treatment plan for the person in my care
, with less than 3% choosing this response option) that recommended their exclusion. The average scale score was 42.9 points (SD 10.1). The scale scores when eliminating their items one by one ranged between 38.6 (They are concerned about the wellbeing of the person in my care
) and 41.1 (They help me find information over the Internet
) points. Pearson’s correlation of each item with the total scale score was greater than 0.50 with the exception of the They help me find information over the Internet
item (0.27). The factorial saturations of the items on the resulting scale ranged from 0.53–0.82, except in the case of the They help me find information over the Internet
item, which was 0.12.
The total value of Cronbach’s alpha (for the 12 items) was 0.88. The scale consistency upon eliminating its items one by one ranged from 0.86–0.89 (Table 3
). The value of the KR20 coefficient for the division by halves was 0.91 considering odd-even items (Cronbach’s alpha for even items was 0.79 while for odd items it was 0.75) and 0.75 considering the first 6 items with respect to the set of the second six (Cronbach’s alpha for the first six items was 0.81 while for the next six it was 0.84).
Two factorial solutions were analyzed: the first with 12 items while the second had 11, and excluded They help me find information over the Internet due to its low factorial saturation. Both factorial solutions coincided in the extraction of two factors with similar structures and factor loadings.
The second factorial solution, with all the items with factor loadings greater than 0.60 explained 64.3% of the total variance (Table 4
) and permitted isolating two factors: attention for the patient (Factor 1) and attention for the caregiver (Factor 2). The first focused on the attention that the patient receives from the caregiver’s perspective whereas the second focused on the attention that the own caregiver receives. The internal consistency of both factors was greater than 0.80. The score for this version of the scale with 11 items was 41.1 (SD 9.7). Empirical validity values are presented in Table 5
3.3. Translation-Back Translation
The IEXPAC instruments was adapted to be used in English. The translation from English to Spanish yielded an acceptable level of agreement in both versions. All items were placed into the terms of partial agreement in their great majority (12) and total agreement (4) (Table 12
). Appendix A
includes both versions of this instrument.
The Caregivers Experience Instrument is a tool that combines acceptability, ease of comprehension, and perceived utility for caregivers. It has adequate internal consistency, reliability, and construct and empirical validity. The measurements that this instrument offers do not depend upon individual factors of either the patient or the caregiver, but rather upon the type, scope, and perceived results of the health and social interventions that they receive. Thus, it is a solid and valid instrument for periodically analyzing the experience of individuals who assume the role of caregiver in the home of a person who suffers one or more chronic conditions.
The instruments that have been developed so far for learning about the experience of caregivers have explored, fundamentally, the emotional burden that caring for a family member entails [25
]. They have identified affective disorders and insomnia as the most frequent consequences that result from continually caring for a family member over time [25
], or they have focused on aspects related to activation of the patient but not for the caregiving person [26
]. The Caregivers Experience Instrument, unlike other instruments, explores elements of integrated health and social care for both the patient and caregiver alike, which can facilitate the caregiving experience and therefore manage their burdens and improve their quality of life.
This measure can contribute to achieve integrated care by incorporating emotional, informational, and personal needs of caregivers. They usually do not receive sufficient attention to enable them to perform their functions alleviating unnecessary burdens. It can be a suitable instrument for research the provision of services, to learn of the situation of coordination of care and support for caregivers. Its reading has the potential to empower caregivers by providing them with key points in monitoring and care for both, the person in their care and themselves.
The introduction of new organizational models in caring for chronicity has taken place alongside the substitution of the traditional paradigm (“all for the patient, but without the patient”) for a different one based on respect for the person more in line with the aphorism of “nothing about me without me” [28
]. The metrics around the concept of experience of the person lead to an evaluation of aspects relevant for the redesign of structures, organizations, and procedures that the IEXPAC scale included in its evaluation scheme. For this reason, its validation and subsequent use in the evaluative frameworks of health and social systems that work in integrated care settings is fundamental. Likewise, these types of measures must be complemented with qualitative strategies and methodologies that reflect the voices of persons and caregivers to construct an adequate narrative of integrated care centered on the person and her caregiver. The results of this study justify that greater attention be paid toward family caregivers with a double objective: to care for their personal needs (affective and concerning knowledge for carrying out their work) and to modify care processes to include their vision of how providing care at health centers and within a patient’s home.
Limitations. Most of the subjects who responded to the scale were caring for a patient with a neurological disorder, but none were caring for a person with a mental disorder; neurological conditions, such as Alzheimer’s and dementia, represent the majority of patients who need caregivers since their level of autonomy becomes increasingly limited. Not all caregivers were aware of the degree of dependency of their family member, and this limits the size of this subgroup in the comparisons made. The data referring to the patient’s medication or to the amount of time that the caregiver has been carrying out this labor are estimated by the own caregiver.