Phase I: Item generation and scale development
The set of preliminary items was based on observable behaviours of health professionals collected from qualitative studies about patients’ perceptions and the theoretical definitions generated from these studies. Expert judgement and posterior psychometric analyses determined the final composition of the questionnaire.
The proposed questionnaire was easy to apply. This is evidenced by the low rate [4%] of null questionnaires. On the other hand, the analysis of the Crawford and Martinez Huerta index carried out prior to the pilot study indicated that sufficient adjustments had been made to ensure the readability and comprehensibility of the proposed text [20].
Phase II: Validation and interpretation of [CuPDPH]"
The analysis of the items of our scale indicated a satisfactory discriminant capacity. All the items differentiated well between the subjects who obtained a high score and those who obtained a low score on the total questionnaire. Once again, there are no other similar validated existing scales, so this factor also favours our instrument.
The questionnaire presented an internal consistency evaluated through the Cronbach alpha coefficient of 0.76, which indicates that the items refer to a common construct. Given the characteristics of the questionnaire, it was not possible to establish its temporal stability.
In relation to factor analysis, the resulting structure is significant and coherent with the constitutive elements proposed in the definition and assumed in the theoretical approach: "the sum and interrelation of respect, intimacy, integrity, the maintenance of the identity of the person as an individual and recognition”. All the aspects add up, and the relationship among them further increases their meaning.
Some studies represent the concept of dignity of the hospitalized patient as the perceived balance between control and choice in the different aspects that make up dignity and that health professionals can encourage or limit [21,22]. Other studies indicate the influence that self-esteem, modified by the illness, has on the person’s perception of him- or herself [23]. These aspects complete the meaning of the proposed definition.
A detailed analysis of the factorial load structure [Table 2] allows us to appreciate the coherence of the grouping of items and to justify the labels assigned to the elements of the factorial solution.
In the factorial structure, the highest percentage of variance [23.90%] was explained by factor 1, which was called “privacy”. It is made up of six items whose meanings relate to respect for the individual’s privacy and includes physical aspects that refer to their body and space: “privacy when using the wedge”, “not exposing my body”.
Hospitalization implies a modification of personal spaces that allows professionals to enter intimate spaces that in any other context would be unacceptable [4]. This new space is mainly a room that in most cases is shared with a stranger 24 hours a day and in which all the activities of daily life take place: dining, hygiene, rest, treatment, and visits from doctors, nurses and friends. Staff enter and leave this space and sometimes do not promote the maintenance of this personal space by knocking on the door or indicating the entry [24].
The most intimate circle of personal space is the body, to which professionals also have access. Hospitalized patients understand that their bodies are accessed for necessary treatments; however, they feel humiliated when professionals do not close the curtains completely, do not access their bodies delicately or do not avoid total exposure [9,25].
This factor also includes intimacy in encounters with professionals, which is considered through statements such as “they looked me in the eyes” or “I was able to speak to staff privately”, representing social and emotional aspects of privacy.
It should be noted that the item “they looked me in the eyes” obtained a factorial weight of 0.48 in factor 5, “respect”. This result is not inconsistent because looking someone directly in the eyes can be considered an act of both intimacy and respect. In fact, this item established significant correlations with the items of factor 5.
Factor 2, “perception of integrity”, is composed of three items that were negatively constructed: “they show superiority”, “they treat me like an object”, and “I feel invisible”. The strong cohesiveness of the scores for these three items was evidenced by the non-inclusion of any other item and by extraordinarily low correlations with the rest of the items. Patients understand that it is the duty of professionals to preserve innate human dignity, to respect everyone equally without discrimination, and to treat patients as people with inherent value and not as objects [26,27]. One of the most negative experiences was being part of the doctors’ rounds [11] when the team does not present itself and patients feel that they are viewed more as an “organ” [object] than as a person [9,24].
Factor 3, labelled identity, perception of maintenance of and respect for, consists of two items: “I was called by my name” and “I did not feel discriminated against because of my condition, gender or illness”. During a hospital admission, options related to the patient’s daily routine are altered by the introduction of depersonalization elements [4]. As a result of the deterioration caused by the illness and, as Bayés [28] points out, the perception that one’s resources are inferior one’s capacities, suffering occurs.
When a patient is hospitalized, they are labelled with an identification bracelet that they voluntarily accept in the name of safety. The patient goes from having a name to having a bed or room number [26]. In some centres, when the patient is admitted, they change into pyjamas or an institutional nightdress, which diminishes some of the identity individuals derive from the ornaments and clothing they choose [9,24], which often provides a senses of well-being and security. The horizontal position some patients must maintain and being prostrate in front of the verticality of the others, modifies the patient’s perception of his or her image [26]; this self-perception is modified again when the patient recovers verticality. All these factors, once again, contribute to the reality of having acquired the trademark characteristics of a patient.
Factor 4 is comprised of two items that refer to the provision of information to professionals and the clarity of information. It should be noted that the scores obtained for these two items were high, indicating satisfaction in this area.
The aspect of choice in this context also appears linked to the information the patient receives about what is happening and the related feelings of control and autonomy [22,26]. During hospitalization, patients need to be made aware of what is going to happen that day or in the future and to be informed before an activity, an examination, or a test is performed [12]. Not being allowed to communicate or verbalize their needs produces anguish and irritation [11], and these results are extrapolated to any clinical circumstance that occurs without communication.
Factor 5 consists of four items that address the patient’s perceptions of aspects of respect, such as efforts to maintain his or her image, the use of respectful language and tone by staff that does not infantilize the patient, or the use of affective expressions that are not appropriate for the time or place. Respect is fundamentally materialized in “being treated as people” [29].
Other items refer to professionals not always addressing patients, not respecting their individuality, calling them by name without their permission or using terms such as “loved” or “love”[12,24] and not treating them as adults [25].
The patients were extraordinarily sensitive to detecting non-verbal expressions of disregard for the ravages caused by the disease [11] or for their condition [26] on the faces of professionals.
Likewise, they perceived as violations the feeling of not being seen or heard, professionals being slow to respond, and professionals responding with indifference or with condescending or minimizing attitudes. Patients understand that in order to feel respected, it is essential for care professionals to spend time with them and to feel that there is someone who at a given moment will speak up on their behalf [11,25].
Factor 6 comprised three items: “privacy to discuss my situation with the staff”, “being allowed to express feelings and worries”, and “being asked with whom I wanted to share information”. The patients noted the capacity of professionals to intuit what they needed, sometimes without asking, and above all, they appreciated the constant presence [11] and the rapid response to their needs [21]. The patients were able to identify those professionals who, in their care, provided an “extra something” that not all professionals had and that increased the patient’s feeling of receiving good and dignified care [30].
As bodily functions and daily activities decrease, the sensation of loss of control, integrity, self-esteem and identity increases [9,31], at which time the behaviour of professionals is fundamental. Bayés [32] refers to how patients’ perception of time changes and how professionals should be sensitive to this circumstance in relation, for example, to waiting times or the time they dedicate to attending to the patient.
The analysis of the items shows that they contain principles and values. The answers delimit how the relationship between the professional and the patient should be. Therefore, we can say that the questionnaire can be examined in light of principles, virtues or care, in line with the proposal by Tschudin et al [33] that in care, it is not only possible but even necessary and beneficial to incorporate interpretations from different ethical sources.
The concept under study is presented as the sum and interrelation of different facets of respect in caring for human beings that makes us perceive the individual’s needs and concerns while imploring us to provide answers from a place of respect, responsibility and commitment to people and the profession.
Limitations
It should be considered that the items of the questionnaire were constructed based on a review of studies that reported the experiences of hospitalized patients and on a preliminary theoretical definition and review by experts, which added objectivity to the process.
The participants’ answers were subjective expressions of their values and attitudes in relation to the concept studied, but they were valid nonetheless.
The fact that the participants were recruited from only one institution constitutes a limitation to the generalization of the results presented. This fact encourages us to propose future studies in other care settings and different centers.