The Measure of the Family Caregivers’ Experience

Objective: Design and validate a measure of the experience of family caregivers with the integrated care that receive the persons they care for. Methods: The new instrument for measuring the experience of caregivers is based on the Instrument to Evaluate the EXperience of PAtients with Chronic Diseases (acronym in Spanish: IEXPAC) scale instrument. With the qualitative technique of the discussion group, nine professionals and eight caregivers assessed the face validity of the instrument and they advised on issues to explore and the measuring scale to use. The instrument’s items were analyzed individually, as well as its consistency, reliability, and construct and empirical validity. Results: 235 caregivers responded, of which 186 (79%) were women. The average age of the persons under their care was 83.9 years (SD 9.7). The scale’s score when eliminating its items one by one ranged between 38.6 and 41.1. The factorial saturations of the items ranged between 0.53 and 0.82. Cronbach’s alpha (12 elements) was 0.88 and the Kuder-Richardson coefficient was 0.91. The factorial solution explained 64.3% of the total variance and allowed isolating two factors (with 11 items with saturations greater than 0.65): care for the patient, and care for the caregiver. The internal consistency of both factors was greater than 0.80. The scale’s score was 41.1 (SD 9.7). Conclusions: The Caregivers Experience Instrument combines acceptability, ease of comprehension, and perceived usefulness for the caregivers. It has adequate internal consistency, reliability, and construct and empirical validity.


Introduction
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 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.

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.

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.

Validation
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).

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.

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.

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.

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].

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).

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.

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.   The normative values of reference in the scale are shown in Tables 6-11.

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.

Discussion
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 [26,27]. 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][29][30]. 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.

Never
Almost Never Sometimes Almost Always Always

They respect the lifestyle of the person I care for
The healthcare professionals who care for the person in my care ask me about his/her needs, habits, and preferences to adapt his/her treatment and care plan.

They are coordinated to offer us good care
The healthcare professionals who care for the person in my care at the health center and those who care for him/her at the hospital talk to each other and coordinate to improve his/her wellbeing and quality of life and those of the family.

They help me become informed over the Internet
The healthcare professionals who care for the person in my care inform me about websites and Internet forums that I can trust to better understand his/her disease, its treatment, and the consequences it may have on his/her life.

I now know how to look after him/her better
With the support of the healthcare and social professionals caring for the person in my care, I feel I have more confidence in my ability to take care of him/her, manage his/her health problems, and approach his/her situation better.

They ask me about and help me follow the treatment plan of the person in my care
I review with the healthcare professionals who care for the person in my care the adherence to his/her treatment and care plan, and if I have questions, they answer them.
6. We agree on the most important objectives of his/her care to control his/her health problems better I have been able to discuss and agree with the healthcare professionals who care for the person in my care the most important health and social problems and how to manage them adequately to maintain his/her quality of life.

They ensure that he/she takes medications correctly
The healthcare professionals caring for the person in my care review with me how to administer medications and review with me if he/she is taking them correctly and how he/she is feeling.

They are concerned about the wellbeing of the person in my care
The healthcare and social care professionals who care for the person in my care are concerned about his/her quality of life and I feel they are committed to improving his/her wellbeing.

They are concerned about my health and wellbeing
The healthcare and social care professionals who care for the person in my care are concerned about my health and quality of life and I feel they are committed to my wellbeing.

They are concerned about my emotional and physical burdens
The healthcare and social care professionals who care for the person in my care are concerned about the emotional and physical burdens involved in being a caregiver and they inform me about how I can manage them.

They inform me about health and social resources that can help me
The healthcare and social care professionals who care for the person in my care inform me about the health and social resources available (in my neighborhood, town, or city) that I can use to improve the care I provide and to take better care of myself.

They encourage me to talk to other caregivers
The healthcare and social care professionals who care for the person in my care encourage me to participate in caregiver groups to share information and experiences on how to care for ourselves and improve our competence as caregivers.
If the person in your care has been hospitalized in the last 6 months and you were already caring for them, please respond to the following statement: 13 In the questions below, describe how often you experience these situations (mark the appropriate box with an X). It is important to focus your answers on a specific person with whom you have had significant experience as a caregiver in the last 6 months.
Only respond if you have been in that situation. Thank you for your cooperation.

Nunca Casi Nunca A Veces
Casi Siempre Siempre 1. Respetan el estilo de vida de la persona que cuido Los profesionales sanitarios que atienden a la persona que cuido me preguntan sobre sus necesidades, costumbres y preferencias, para adaptar su plan de cuidados y tratamiento.

Están coordinados para ofrecernos una buena atención
Los profesionales sanitarios que atienden a la persona que cuido en el centro de salud y los que la atienden en el hospital hablan entre ellos y se coordinan para mejorar su bienestar y su calidad de vida y los de la familia.

Me ayudan a informarme por Internet
Los profesionales sanitarios que atienden a la persona que cuido me informan sobre páginas web y foros de Internet de los que me puedo fiar para conocer mejor su enfermedad, el tratamiento y las consecuencias que pueden tener en su vida.

5.
Me preguntan y me ayudan a seguir el plan de tratamiento de la persona que cuido Reviso con los profesionales sanitarios que atienden a la persona que cuido el cumplimiento de su plan de cuidados y tratamiento y, si tengo dudas, me las aclaran.

Se preocupan por el bienestar de la persona que cuido
Los profesionales sanitarios y sociales que atienden a la persona que cuido se preocupan por su calidad de vida y los veo comprometidos para que mejore su bienestar.

Se preocupan por mi salud y bienestar
Los profesionales sanitarios y sociales que atienden a la persona que cuido se preocupan por mi salud y mi calidad de vida y los veo comprometidos con mi bienestar.
11. Me informan de recursos sanitarios y sociales que me pueden ayudar Los profesionales sanitarios y sociales que atienden a la persona que cuido me informan sobre los recursos sanitarios y sociales de que dispongo (en mi barrio, ciudad o pueblo) y que me pueden ayudar a cuidarla mejor y cuidarme yo/mejor.

Me animan a hablar con otras personas cuidadoras
Los profesionales sanitarios y sociales que atienden a la persona que cuido me animan a participar en grupos de personas cuidadoras para compartir información y experiencias sobre cómo cuidarnos y mejorar nuestra competencia como cuidadores.
Si la persona que usted cuida ha estado ingresada en el hospital en los últimos 6 meses y usted ya la estaba cuidando, por favor, responda a la siguiente pregunta: 13. Se preocupan por la persona que cuido al llegar a casa tras su hospitalización. Después de que le dieran el alta del hospital a la persona que cuido, nos han llamado o visitado en casa para ver cómo se encontraba, qué cuidados necesitaba y con qué dificultades me he encontrado para cuidarla correctamente.
Si la persona que usted cuida ha recibido atención sanitaria en su domicilio en los últimos 6 meses, por favor, responda a la siguiente pregunta: 15. Atienden bien a la persona que cuido en su domicilio Los profesionales que atienden a la persona que cuido en su casa tratan de solucionar sus problemas de salud de forma coordinada con los profesionales del centro de salud y del hospital.