Perceived Usefulness of New Technologies in Palliative Care Volunteering. Mix Methodology study with stakeholders.

doi:10.21203/rs.3.rs-4710634/v1

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Research Article

Perceived Usefulness of New Technologies in Palliative Care Volunteering. Mix Methodology study with stakeholders.

https://doi.org/10.21203/rs.3.rs-4710634/v1

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Background: During the COVID-19 pandemic it was not possible to offer face-to-face accompaniment to patients and families, so alternatives had to be sought to alleviate the stressful situations that patients and families were experiencing and for that reason starting to use the New technologies.

Objective: explore the perceived usefulness of New Technologies for volunteering of all the stakeholders. Also we analyse the relationship between the perceived usefulness and technological profile of the participants.

Design: Acceptability study with mixed methodology to analyse and identify the opinion. Transverse descriptive design for quantitative variables and a phenomenological approach for qualitative data describing and explaining the perceived usefulness of New Technologies.

Methods: Patients, relatives, professionals and volunteers from different settings were selected. We evaluated the degree of agreement with the use of New Technologies for volunteering, benefits, disadvantages and satisfaction with volunteering. For qualitative study, we use an open question format to further explore the perceived usefulness of use of New Technologies during Palliative Care volunteering and the technological profile was measured by TechPH.

Results: 402 people participated in this study. Sample was divided into 4 different profiles: patients, relatives, professionals and volunteers. About usefulness, 50% (25/50) of patients, 63.6% (28/45) of relatives, 77.8% (88/136) of professionals and 78.2% (129/171) of volunteers considered New Technologies to be beneficial for volunteering. Three themes about the perceived usefulness of New Technologies for volunteering in Palliative Care were addressed form the qualitative analysis: Difficulties in the use of New Technologies, Benefits and Training for volunteers.

Conclusions: All groups perceived the new technologies to be a useful tool for volunteers’ accompaniment. This perceived usefulness is higher for professionals however they are the group less implicate in this accompaniment. The perceived usefulness is lower in the patient group. They prefer a mix model using New Technologies as a complement of in-person accompaniment.

New Techonologies

volunteering

palliative care

technological profile

Palliative Care (PC) is characterised by a holistic care the person where its different dimensions areattended : physical, psychological, social and spiritual (1). For this, the care of a multidisciplinary team composed of professionals from medicine, nursing, psychology, social work, physiotherapy, occupational therapists, spiritual counsellors and volunteers is essential. While specialist PC team are central to the delivery of hospice and PC services, volunteers also contribute greatly to the provision of safe and high quality services worldwide (2).

Volunteers can support many different aspects of palliative and hospice care across all settings, including in-patient PC units, hospital and home PC teams, home nursing services and in the community (3, 4). The work of volunteers with specific training in PC is fundamental, as they accompany, support and carry out leisure activities with patients and relatives. When care is provided to the patient, the role of volunteer is usually on psychosocial support, including spiritual care, counselling and referrals to services (5, 6). Volunteers complement the professional care of patients, occupying a liminal space between professionals, family and patients (3, 7, 8). Numerous studies show that volunteering improves quality of life and emotional well-being (4, 8–13). There are even studies indicating that social support and having a larger network reduces mortality. In particular, Herbest-Damm and Kulik (14) found that patients who were visited in a hospice by volunteers had an average survival time of 80 days longer than those who were not visited by any volunteer, due to the increased emotional well-being of the visited patients and the decreased care overload of their relatives, who were thus able to care for and support them more satisfactorily. Furthermore, another study by Block et al. (15) also found that patients who benefit from the support of a volunteer have increased satisfaction with the service received and the organisation, which avoids complicated bereavements in the future for family members. Family members have to adapt their lives to new situation that occurs in the family nucleus, and which will alter it structurally and functionally, and may also cause certain difficulties in making professional and personal habits of different members caring for patient more flexible. Therefore, family also needs physical, emotional and instrumental care to offer them necessary support for these moments, and this also implies the support of volunteers. The role that volunteers play at the end of life also has benefits for caregivers, including respite care, emotional support, social support, practical assistance, and spiritual support if desired (11).

Therefore, a service that is so beneficial for patients and families in PC, who are facing such a complicated and painful moment as the end of life, it is important to have all the resources available to facilitate this process, and during the COVID-19 pandemic it was not possible to offer face-to-face accompaniment to patients and families (16), so alternatives had to be sought to alleviate as much as possible the stressful situations that patients and families were experiencing at the end of life, such as fear of contagion or even avoiding visits from professionals. In other cases, diagnoses have been delayed, resulting in overcrowding in the specialised PC teams. And unfortunately, many patients have died alone due to restrictions on hospital visits, aggravating the grief of many relatives who have not been able to accompany and say goodbye to their loved ones (17).

The use of NT (NT) in recent years has been spreading to the entire population and in all spheres of daily life, representing an advance because it facilitates access to resources, tools and knowledge immediately and instantaneously, even facilitating the development of skills and being able to explore new realities (18). In the area of health, all kinds of NT have been used, from the most commonly used in daily life (smartphones, tablets, computers) to the most advanced ones such as robots or genomic surgery devices to solve health problems and improve the quality of life of patients (19). The outbreak of the COVID-19 pandemic forced many areas that had not yet considered incorporating NTs to do so in order to alleviate some of these dramatic situations. For example, some initiatives were carried out by medical teams on a voluntary basis with the aim of being able to inform relatives of their loved one's condition and to be in contact with them virtually for a while (20) or some case studies evaluating the application of telehealth services in palliative home care during the pandemic (21–23). In the area of volunteering, studies that relate accompaniment and NT mainly address the challenges of bringing this type of device to the elderly population and the digital gap but from the perspective of a volunteer who performs administrative tasks or to better organise with colleagues and the volunteer department (24, 25) or how volunteers perceive it as another resource to improve their relationship with family members, never perceiving it as useful for accompanying the patient (26), but still entities are far from including such resources in their practice. Although previous bibliography refers to digital volunteering, it tends to be of a more administrative nature, so there are no studies that show digital accompaniment services.

Taking advantage of the fact that in recent years we have been able to use NT as another tool that allows volunteers to carry out new activities and communicate more quickly, comfortably and efficiently with patients and relatives, we wanted to evaluate, prior to the implementation of a technological device for volunteers, what patients, relatives, volunteers and professionals think about its usefulness, positive and negative aspects. So the major aim of this study is to explore the perceived usefulness of NT for volunteering of all the stakeholders of this services. Also we analyse the relationship between the perceived usefulness and technological profile of the participants as NT are currently not used in volunteering. They are only used as a communication channel to contact volunteers but not in accompaniment, and optional ways are always taken into account in case someone is not skilled enough to handle them. It is important that this study takes into account all the participants in the study, volunteers and patients/families, as they are going to establish communication between them but also the professional as the volunteer is part of the team and they have to be facilitators of the implementation of a new service. A collaborative approach to learning-by-doing and drawing on the skills and opinions of all stakeholders is fundamental to implementation research (27).

This study is nested in a cluster clinical trials (ITV-Pal study) described in more detailed by Barnestein-Fonseca et al. (28). The ITV-PAL trial gained approval from the Malaga Provincial Ethical Committee (25/2/21). The global aim of this study was to implement and evaluate a volunteer training programme in the use of NT (specifically through smartphones and tablets) to support patients facing a life threatening illness and their relatives.

The reporting of this study conforms to the ASSESS tool (29).

Design

Acceptability Study with mixed methodology to analyse and identify the opinion of the people involved in a volunteer service(operational acceptability)(30). Transverse descriptive design for quantitative variables and a phenomenological approach was adopted for qualitative data describing and explaining the perceived usefulness of NT for volunteering from the perspective of those who have experienced it (patients, relatives, HCP and volunteers).

Setting

Hospital, hospices and PC home teams.

Participants

Patients living with a life-limiting or terminal illness and their relatives. These patients could be included in any of the hospice services, either in home care or hospitalized in the hospice, HCP involved in PC and PC volunteers. All of them to be over 18 years of age. More than a year of experience in a specialized PC team in the case of HCP.

Recruitment

Patients and relatives were recruited from data base from Volunteer Department of Cudeca Hospice. It was selected a list of putative participants who were receiving accompaniment of volunteers during the study. They were asked to participate by phone call and if they accepted an appointment was scheduled to explain in deep the aim of the study and to complete the interviews and the inform consent were signed.

All PC volunteers from Cudeca Hospice were invited to participate by volunteer’s coordinators by mailing list and they were asked to participate, if they accepted an appointment was scheduled to explain in deep the aim of the study and to complete the interviews and the inform consent were signed.

HCP were recruited from PC team across Spain using symposia or from Cudeca Hospice.

In all groups, a consecutive sampling methods were used when subjects accept the participation in the study. The recruitment ceased when it was determined that data collected were sufficient to address the aims of the study for all groups. In the case of qualitative approach, it was when the saturation of information was achieved.

Variables

For all groups, questions with likert scale (0–5) to establish the degree of agreement with the use of NT for volunteering, the usefulness, the benefits of the use, the disadvantages and the frequency of optimal use during volunteering. The battery of questions that have been passed to each of the groups are specified in annexes 1–4. Question with likert scale (0–5) to establish the degree of satisfaction with their experience with the volunteers (patients, relatives and HCP) or volunteering (volunteers). A gradation has been made for the analysis of the answers in which answers 1–2 are disagree, 3 neither agree nor disagree and 4–5 agree. Open questions about kind of benefits and disadvantages of the use of NT for PC volunteering that have been categorized during the analysis.

For qualitative study, we use the same questionnaire mentioned above with an open question format to further explore the perceived usefulness of the use of NT during PC volunteering. Also, the in deep interview schedule was generated based on previous literature and in accordance with the recommendations for Interpretative Phenomenological Analysis. The questions focused on their experience as a care volunteer, how they think their volunteering would be most useful (fully face-to-face, blended or exclusively digital) and what circumstances, advantages and benefits of including NT in volunteering and difficulties. They were also asked about the training needed to carry out digital accompaniment and activities they feel able to carry out with the devices.

The technological profile was measured by TechPH troughs two factor technology enthusiasm and technology anxiety (31) in all groups. The instrument consists of six items in two factors measuring techEnthusiasm and techAnxiety as factors of technophilia. It based on existing validated instruments and that it is short and simple to make it usable for older people. TechPH index could be interpreted on a five-point response scale, ranging from 1 (fully disagree) to 5 (fully agree), where the higher the index indicates a higher level of technophilia.

Independent variables as age, gender was measured in all groups. For patients and relatives was measured the educational level and the current living situation. For HCP was measured the speciality and the time worked on it. Also the experience with volunteering for patients, relatives and HCP. For volunteers the time of collaboration with the entity was measured.

Data collection

For this study were used different ways for data collection depending on the group of participants and the propose of the data.

For all groups a survey with questions about the usefulness and acceptability of the use of NT for PC volunteering were used. This survey was carried out by a research team member for patients and relatives in person or by phone depending on the preferences of the participants. For volunteers and HCP, this survey was filled on-line.

Participant of all of groups were invited to in face-to-face semi-structured in deep interviews, in the case of patients and relatives, or focus groups with a semi-structured script for volunteers and HCP, to explore more in deep the perceived usefulness of NT for PC volunteering. The participant and researcher were present. The interviews were audio-recorded and transcribed verbatim. Field notes were made during and after interviews by at least two members of research team.

Analysis

Quantitative analysis. A descriptive statistical analysis was carried out for each of the study variables. The mean and standard deviations were calculated for the quantitative variables, while the absolute and relative frequencies were evaluated for the qualitative variables. For open questions of the survey a categorization of the answer was carried out to facilitate the interpretation of the results. Correlation of Pearson for quantitative variables and ANOVA for qualitative variables were performed for bivariate analysis for perceived usefulness and the rest of variables. A linear regression was performed for multivariate analysis with perceived usefulness as dependent variable and the statistically significant variables from bivariate analysis as modifiers (32).

Qualitative analysis. Thematic Analysis, with an iterative approach to coding and analysis. For example, what was said by one participant may inform or shed light on the words of another participant. Analysis will focus on the “substance of the interview” to interpret “meanings and perceptions created and shared during a conversation. Analysis of the data will explore the ideas, assumptions or concepts underpinning what participants are saying. Words or phrases will be coded at latent and semantic level to ‘label’ meaning identified by those words/phrases. ‘Themes’ will then be developed from these codes around a ‘central observation’ or concept to reflect patterns of shared meaning. For example, to capture “something important” about how these participants make sense of, and utilise, the NT within the context of end of life volunteering (33).

Analysis will be conducted within a constructionist paradigm, which asserts that meaning and experience are socially produced. Stages of analysis will be iterative and cyclical rather than linear and analysis may move back and forth between stages, following these steps: A) Familiarisation and immersion with the data: repeated reading of the interviews; B) Generation of initial codes: annotations of initial thoughts against items/categories of text; C) Creating themes from codes: The minor items/categories that have initially been identified from the text will then be interrogated to generate overall ‘themes’. Engaging with relevant published literature (theoretical perspectives and relevant research) should further enhance the evolving interpretation; D) Reviewing themes: ensure all collated extracts of text form a coherent pattern, reorganising and refining themes as required; E) Defining and naming themes: to define the ‘essence’ of what a theme is about.

402 people participated in this study. The sample was divided into 4 different profiles: patients, family members, HCP and volunteers. Table 1 shows the detailed socio-demographic data divided into each of the groups. The questionnaire was administered to:

50 patients, 32 (64%) were women, 14 (28%) lived alone and 23 (46%) with their partner, with a mean age of 71.58 years (CI95%, 68.44–74.72); 22 (44%) had primary education and 9 (18%) university studies.
45 relatives, 35 (77.8%) were women, 6 (13.3%) lived alone and 21 (46.7%) with their partner, with a mean age of 57.16 years (CI95%, 52.50-61.81); 8 (17.8%) had primary education and 20 (44.4%) university studies.
136 HCP, 108 (79.4%) were women, the mean age was 45.37 years (CI95%, 43.62–47.12) and a mean of 121.56 months (CI95%, 103.68-139.44) of experience in PC.
171 volunteers, 141 (82.5%) were women, 68 (39.8%) of them with higher education. The mean age was 59.02 years (CI95%, 56.91–61.14) and they had been collaborating with the organisation for an average of 53.51 months (CI95%, 44.01–63.01).

Table 1

Baseline socio-demographic data of participants
Variables	Patients	Relatives	HCP	Volunteers
Sample	50	45	136	171
Sex n (%) Female Male
	32 (64)	35 (77.8)	108 (79.4)	141 (82.5)
	18 (36)	10 (22.2)	28 (20.6)	30 (17.5)
Age (years) mean (CI95%)	71.58(68.44–74.72)	57.16(52.50-61.81)	45.37(43.62–47.12)	59.02(56.91–61.14)
Education n (%)
Secondary	22 (44)	8 (17.8)	N/A	25 (14.6)
Grammar	14 (28)	14 (31.13)	N/A	52 (30.4)
College	5 (10)	2 (4.4)	N/A	22 (12.9)
University	9 (18)	20 (44.4)	N/A	68 (39.8)
Other	-	-	N/A	-
Coexistence n (%)
Alone	14 (28)	6 (13.3)	N/A	N/A
Spouse	23 (46)	21 (46.7)	N/A	N/A
Spouse+	1 (2)	9 (20)	N/A	N/A
Children	10 (20)	8 (17.8)	N/A	N/A
Adult	9 (18)	5 (11.1)	N/A	N/A
Institution	1 (2)	3 (6.7)	N/A	N/A
Other	2 (4)	-	N/A	N/A
Length of time of experience months mean (CI95%)	N/A	N/A	121.56(103.68–139.4)	53.51(44.01–63.01)
HCP: Health Care Professionals; NA: Not applicable; CI95%: Confidence Interval 95%; Spouse: With spouse/partner; Spouse+: With spouse/partner and children < 18 years old; Children: With children > 18 years old; Adult: With other(s) adult(s); Institution: In an institution

Perceived usefulness of NT for volunteering

A summary of the most salient results is presented in Table 2.

Table 2

Main results of perceived usefulness in the participants
Variables	Patients	Relatives	HCP	Volunteers
Sample	50	45	136	171
Satisfaction with volunteering mean (CI95%)	8.70/10 (8.42–8.98)	7.60/10 (7.18–8.02)	8.02/10 (7.68–8.36)	8.96/10 (8.75–9.16)
Degree of agreement on the type of volunteering they prefer to use n (%)
On site	45 (90)	34 (84.1)	71 (52.2)	142 (86.1)
On site but with the support of NT	27 (54)	27 (61.4)	42 (30.9)	121 (74.2)
Some days face-to-face and others via video call	21 (42)	28 (63.6)	5 (3.7)	75 (45.7)
Phone or videocall except some ocassions	20 (40)	14 (31.8)	5 (3.7)	30 (24.5)
Phone or video call only	20 (40)	13 (29.5)	1 (0.7)
Utility of NT in volunteering n (%)
Agreed	25 (50)	28 (63.6)	88 (77.8)	129 (78.2)
Neither agree nor disagree	7 (14)	8 (18.2)	23 (20.3)	33 (20.3)
Disagree	18 (36)	8 (18.2)	2 (1.8)	107 (65.6)
Benefits n (%)
Agreed	23 (46)	28 (63.6)	92 (82.1)	129 (78.2)
Neither agree nor disagree	4 (8)	10 (22.7)	17 (27.8)	26 (15.8)
Disagree	23 (46)	6 (13.6)	3 (3.6)	10 (6)
Main Benefit n (%)
No benefits	13 (26)	4 (8.9)	N/A	11 (7.2)
Comfort	13 (26)	9 (20)	1 (1)	17 (11.1)
Support	12 (24)	17 (37.8)	23 (22.5)	15 (9.8)
Use NT ocassionally	8 (16)	3 (6.7)	6 (5.9)	10 (6.5)
Face to face is tired	2 (4)	N/A	1 (1)	1 (0.7)
Geographical dispersion	1 (2)	3 (6.7)	41 (40.2)	N/A
More availability	N/A	N/A	N/A	28 (18.3)
More knowledges due to pandemic	1 (2)	2 (4.4)	N/A	1 (0.7)
Another option	N/A	4 (8.9)	20 (19.6)	15 (9.8)
Support relatives	N/A	N/A	3 (2.9)	2 (1.3)
Coordination	N/A	N/A	7 (6.9)	23 (15)
Facilitating communication	N/A	N/A	N/A	23 (15)
Avoiding language barriers	N/A	N/A	N/A	1 (0.7)
Training	N/A	N/A	N/A	1 (0.7)
Disadvantages n (%)
Agreed	31 (62)	27 (61.4)	25 (22.5)	49 (29.7)
Neither agree nor disagree	6 (12)	9 (20.5)	44 (39.6)	54 (32.7)
Disagree	13 (26)	8 (18.1)	42 (37.8)	62 (37.6)
Main Disadvantages n (%)
None	9 (18)	4 (8.9)	1 (0.7)	34 (19.9)
Lack of human warth	20 (40)	15 (33.3)	16 (11.8)	29 (17)
Lack of comprehension	7 (14)	19 (42.2)	67 (49.3)	58 (33.9)
Physical impairment	9 (18)	5 (11.1)	3 (2.2)	12 (7)
Preference of face to face volunteering	5 (10)	N/A	9 (6.6)	1 (0.6)
Virtual accompaniment abuse	N/A	1 (2.2)	2 (1.5)	2 (1.2)
Reluctance to volunteer	N/A	N/A	3 (2.2)	8 (4.7)
HCP: Health Care Professionals; CI95%: Confidence Interval 95%; NA: Not applicable

The 88% of patients (44/50) rating their volunteering experience as very good, with an average score of 8.70/10 (CI95% 8.42–8.98). Regarding NT and volunteering, the 90% (45/50) preferred face to face volunteering and 54% (27/50) said that they could do some specific activity through NT but in a face to face accompaniment. More details are shown in the Fig. 1. About the usefulness, the 50% considered NT useful for volunteering benefits, the 36% (23/50 considered the NT as an advantage. The main benefits were greater comfort (26%) and support (24%). Another benefits were: use the NT occasionally (16%), the face to face is tired (4%) and this technological volunteering avoid the distance.

The 62% of patients considered that the use of NT during volunteering would be a disadvantage mainly due to the lack of human warmth (40%). In addition, the patients mentioned the lack of comprehension (14%), physical impairment (18%) or directly the preference of face to face volunteering (10%) as disadvantage for use of NT.

The 57.8% of relatives (26/45) reported their volunteering experience as very good, with an average score of 7.60/10 (CI95% 7.18–8.02). Regarding NT and volunteering, the 84.1% (34/45) preferred face to face volunteering and 61.4% (27/45) said that they could do some specific activity through NT but in a face to face accompaniment. More details are shown in the Fig. 1. About the usefulness, the 63.6% (28/45) considered NT useful for volunteering benefits, the 63.7% (28/45) considered the NT as an advantage. The main benefits were greater comfort (20%) and support (37.8%). Another benefits were: use the NT occasionally (6.7%) and this technological volunteering avoid the distance.

The 61.4% (27/45) of relatives considered that the use of NT during volunteering would be a disadvantage mainly due to the lack of human warmth (33.3%) and the lack of comprehension (42.2%). In addition, the relatives mentioned physical impairment (11.1%) as disadvantage for use of NT.

The 73.5% of HCP (83/136) rating their experience with volunteers as part of the team and the support that volunteers offered to patients/relatives as very good, with an average score of 8.02/10 (CI95% 7.68–8.36). Regarding NT and volunteering, the 52.2% (71/136) of HCP would alternate between digital and face-to-face volunteering and 30.9% (42/136) said that they could do some specific activity through NT but in a face to face accompaniment. More details are shown in the Fig. 1. About the usefulness, the 77.8% (88/136) considered NT useful for volunteering benefits, the 61% (83/136) considered the NT as an advantage. The main benefits were avoiding geographical dispersion (30.1%) and support (16.9%). Another benefits were: use the NT occasionally (4.4%) and using as an another resource.

The 18.4% (25/136) of HCP considered that the use of NT during volunteering would be a disadvantage mainly due to the lack of human warmth (11.8%) and the lack of comprehension (49.3%). In addition, preferred a face to face volunteer (6.6%) and physical impediments to using the NT.

The 86% of volunteers (147/171) considered their volunteering experience as very good, with an average score of 8.96/10 (CI95% 8.75–9.16). Regarding NT and volunteering, the 86.1% (142/171) preferred face to face volunteering and 74.2% (121/171) said that they could do some specific activity through NT but in a face to face accompaniment. More details are shown in the Fig. 1. About the usefulness, the 78.2% (129/171) considered NT useful for volunteering benefits, the 81.5% (133/171) considered the NT as an advantage. The main benefits were greater comfort (11.1%) and more availability (18.3%). Another benefits were: support (9.8%) and another resource if they cannot go.

The 29.7% (49/171) of HCP considered that the use of NT during volunteering would be a disadvantage mainly due to the lack of human warmth (17%) and the lack of comprehension (33.9%). In addition, there is reluctance on the part of volunteers to use NT (4.7%) and physical impediments to using the NT (7%).

In order to obtain more detailed information about the perceived usefulness of NT in the different groups, in-depth interviews were conducted for patients and relatives, and focus groups were conducted for HCP and volunteers. In depth interviews were carried out with 10 patients, 7 of whom were women with an age range of 50–82 years. Most of these patients were admitted to an inpatient unit of a PC centre. Therefore, the interviews with these patients were conducted face-to-face. Those who were interviewed at home were interviewed by telephone. In the group of relatives, ten family members were interviewed, eight of whom were women and two men. Six of them had a spousal relationship with the patient. The other four relatives were children of the patients. Seven of the interviewees were over 65 years of age.

Two focus groups of professionals were held. In the first one, eight professionals from the following specialities took part: care coordination, supervision of the inpatient unit, psychology, physiotherapist, social work and nursing. Two months later and in order to reach saturation, a second focus group was held with the participation of five professionals from the specialities of: psychology, nursing, medicine and nursing assistant.

Two focus groups were carried out with volunteers. In both volunteer focus groups, 8 volunteers participated, 14 of whom were women and with an average time of collaboration of 5 years. All the volunteers collaborate in the care field, most of them being volunteers in the Hospitalisation Unit and one of them in Home Care, 8 of them combine their activity at both sites.

Three themes about the perceived usefulness of NT for volunteering in PC were addressed form the qualitative analysis of the four groups of stakeholders: Difficulties in the use of NT, Interpersonal relationship, Benefits, Usefulness and Training for volunteers.

THEME 1: Difficulties in the use of NT

The patients' relatives point out as a difficulty the physical or cognitive limitations that the patients might have due to their illness or age, although they also state that they could help them in case they could not manage on their own.

"Perhaps my husband would have had difficulty holding the device because his hands hurt, but nowadays there are brackets" (Relative. Women, 57 years old)

"In my mother's case, I would have handled them (refers NT), she was very limited, but the thing is to adapt to the user in question” (Relative. Women, 48 years old)

Volunteers mention that, in their experience, physical impairment can be an impediment in their virtual accompaniment. As well as loneliness, patients who find themselves without any social network will create a dependent relationship with the volunteer.

"A person with a recently cured trachea crying and choking is very difficult to listen to" (Volunteer 3, women, 8 years of experience)

"A relationship was created in which he called me outside the hours I called him, so it was very complicated to discern when it was a need and when it was dependence... It was very necessary for me to discern when to attend to him and when not to attend to him because it could create dependence" (Volunteer 3, women, 8 years of experience)

The volunteers also highlight as a difficulty other aspects such as the lack of closeness, affection, looks, silence and not having the support of non-verbal communication as when they accompanied in person. Likewise, the relationship with the family becomes more forced, it cannot be as natural, nor do they have the support of the environment to be able to bring up different topics of conversation with the patient.

"Keeping the conversation relaxed, respecting the silences when you enter a conversation and see the person sinking, never ending the conversation in a sad mood, always ending the conversation when the patient is in good state of mind, looking for the elements and tools so that the conversation does not end" (Volunteer 3, women, 6 years of experience)

"Something specific to communication through a screen, I can think now of light, backgrounds..." (Volunteer 2, women, 2 years of experience)

"How do you do when you talk to the patient's wife: you are together in the same room, you ask her how she is, you talk about him in front of the patient...?" (Volunteer 3, women, 7 years of experience)

"Telephone accompaniment apart from the fact that you lack fundamental data such as non-verbal language, such as shared silences, touching, glances, that which is lacking... silences, you can interpret what they are crying, thinking, and these are elements that are complicated" (Volunteer 3, women, 7 years of experience)

Professionals and patients themselves highlight the digital divide as a difficulty, with professionals highlighting it especially in rural areas where they see patients, and although they believe that the pandemic has helped to narrow the gap, it is still a reality.

"The only requirement would be to level the population because not all the population does not have access to technology" (Social Worker, 1)

"Now I've done more video calls, Whatsapps with friends, family. Although every time I've had to do it, I've had to ask how to do it" (Patient. Women, 82 years old)

There are patients who say that they do not feel able to use NT.

"I don't understand it very well. Just Whatsapp, call and take pictures, nothing else" (Patient. Women, 77 years old)

Patients emphasised in their interviews that they preferred the interpersonal relationship that is created between the volunteer and the patient by having a person they feel close to but also indicated that they understood that in certain circumstances the use of NT was necessary.

"It is always nice to have someone looking out for you". (Patient. Women, 50 years old)

"I'm a face-to-face person, I'm not a video call person and so that has been a delay in the human relationship. But I understand the circumstances and if I had to do it that way, I would adapt” (Patient. Men, 66 years old)

THEME 2: Benefits of NT

Professionals and volunteers highlight the benefits of NT as the savings in travel time for the volunteer. And that, in addition, NT and the use of video calls can be a middle ground for the disadvantages of a fully telephonic relationship.

"There are volunteers who can leave their home once a week to go to a patient's home, but maybe if you give them the option that it can also be by video call, then maybe they get more involved because it allows them to organise themselves in a different way. I see it as positive" (Nurse, 2)

"I see two positive things with NT. One because before you could hear the voice and now you can see the face using NT with the pandemic. I'm in favour of that because right now you can't give yourself a hug, you can't give yourself a kiss. Now you can see yourself without the mask” (Nurse coordinator)

"It is much easier to take an hour out of your daily chores at home, than to take half an hour to go to the gentleman's house, be there for an hour and come back" (Volunteer 3, women, 7 years of experience)

Volunteers also noted as a benefit of accompaniment that they could have greater immediacy in attending to moments when the family member needed to talk to someone.

"This person, when they have a crisis, perhaps looking for knowledge, and even more so when there is already empathy, will look for you at any time. If they call you at 10 o'clock in the morning and you have not been able to attend to them or something happens, see how the patient accepts it. You have to be very clear that you have a certain number of hours and that is when you are available and they are fixed" (Volunteer 4, Men, 7 years of experience)

Patients also highlighted that for them, NT helped them to gain comfort when interacting with others.

"I think it's more comfortable. It's better for me that they call me and take care of me" (Patient. Women, 77 years old)

Relatives expressed that at least the first contacts should be face-to-face to build trust before moving on to digital accompaniment.

"I think that presence would help them to gain confidence. At the very least, the first one should have been face-to-face, knowing who to talk to and getting to know him" (Relative. Men, 46 years old)

The professionals pointed out that it was a good time for the incorporation of NT, especially when interpersonal relationships were not possible due to the pandemic.

"Right now I think the context is unbeatable. Right now, the lack of personal contact, the limitations of mobility and distance could make these tools make more sense and could be here to stay" (Nurse 1)

The relatives propose a variety of activities that can be carried out in digital volunteering. They included instrumental activities such as reading, sewing, games, social activities to laugh... Although they think of the role of the volunteer for the patient rather than for themselves. They do not see the usefulness of the service for them.

"My mother loved dancing, sewing, chatting. Any social activity where she could laugh, perfect" (Relative. Men, 46 years old)

"My mother really, I think she just needed to be able to talk to someone outside her family, even if she refused. Someone who would listen to her and she wouldn't feel guilty about telling them something sad about her last days" (Relative. Men, 46 years old)

The volunteers did point out that they saw the use of NT as necessary and useful and were excited to start such a project and continue their collaboration in these circumstances.

"The technology is here and that is going to stay. Once people learn, I think it's going to be a great invention" (Volunteer 4, Men, 7 years of experience)

"I think it is very necessary because society is asking for it because of the way things are going, because we can go much further virtually and we have to prepare for that” (Volunteer 4, Men, 7 years of experience)

THEME 3: Training of volunteers

The volunteers indicated that they were very excited to start this digital volunteering project but that they needed more training to be able to accompany as it was something new.

"Something specific to communication through a screen, I can think now of light, backgrounds..." (Volunteer 2, women, 2 years of experience)

"Because society is asking for it because of the way things are going, because we can go much further virtually and we have to prepare ourselves for it” (Volunteer 4, Men, 7 years of experience)

Relationship between the perceived usefulness and technological profile of the participants

Table 3 shows the scores of Tech-PH test and Fig. 2 shows the detailed percentage for each item of Tech-PH in four groups.

The perceived usefulness of the NT showed statistically significant relationship with age (r= -,276; p ≤ 0.001) the perceived usefulness decrease when the age increase; educational level (p = 0.016), the mean of perceived usefulness increase with the educational level; group of subjects (p ≤ 0.001) the mean of perceived usefulness is low in patients group; TechPH total score (r= ,303; p ≤ 0.001) and TechPHEnthusiam score (r= ,438; p ≤ 0.001), the perceived usefulness is directly correlated with the scores of Tech-PH and their correlation is moderate.

Table 3

Scores Tech-PH questionnaires
	Patients	Relatives	HCP	Volunteers
Total Score X̅ (CI 95%)	2.5(CI95%,2.26–2.79)	3.05(CI95%,2.75–3.36)	3.41(CI95%, 3.3–3.52)	3.17(CI95%, 3.05–3.29)
TechAxiety factor X̅ (CI 95%)	3.24 (CI95%, 3-3.49)	3.02 (CI95%, 2.7–3.31)	2.94(CI95%, 2.75–3.12)	3.09(CI95%, 2.91–3.28)
TechEnthusiasm factor X̅ (CI 95%)	2.3 (CI95%, 1.97–2.6)	3.13 (CI95%, 2.75–3.52)	3.77(CI95%, 3.6–3.9)	3.45(CI95%, 3.29–3.61)
HCP: Health Care Professionals; X̅: media; CI95%: Confidence Interval 95%

All groups perceived the NT as a useful tool for volunteers’ accompaniment. This perceived usefulness is higher for HCP however they are the group less implicate in this accompaniment. The perceived usefulness is lower in the patient group. They prefer a mix model using NT as a complement of the in person accompaniment. Maybe these finding would be due to the familiarization of these groups with the NT. While patients are older on average and less familiar with NT (34), professionals are younger and therefore tend to be more familiar with NT (35). For relatives and volunteers the use of NT is usefulness, but in the same way of patients only for some activities and always combined with the face to face volunteering.

According with the finding of use a mix model using NT and face to face volunteering, similar results were reported by Kong and Soon during the pandemic. The authors described a virtual volunteering in a hospice in Singapore through two retrospective case studies. These case studies showed that a therapeutic alliance can be effectively built via virtual platforms. Benefits of virtual volunteering include enabling continued service delivery and increased comfort for some patients as virtual interactions can be less intimidating as compared to interacting with an animal in real life. They concluded that virtual volunteering may be considered to complement face-to-face volunteering in end-of-life care as part of normal practice (36).

There is not much literature linking volunteering and NTs. We can find studies that relate retired health workers who have volunteered to provide care services, especially during the pandemic (37), and avoid the saturation of active health workers with good results for patients, but this is not comparable, as the profile of the volunteer cannot be that of a professional who replaces the work of another. Furthermore, although many palliative care volunteer organisations have implemented digital volunteering programmes during the pandemic, there is no evidence of the impact of these activities. Perhaps we may find more evidence in the near future when the results of these experiments start to be published.

Studies in other areas related to the health sector have highlighted that, during the pandemic, platforms such as Whatsapp, Zoom or Skype have been used to organise lunches with people with dementia (38), digital volunteers to accompany elderly people in the community (39) or music therapy sessions via telephone and even to share music via newsletters (40). These studies have concluded that volunteer interventions are useful in these programmes.

The study with digital volunteers for elderly people during pandemic showed significant decrease in the anxiety level of the participant after 8 weeks of follow-up with a weekly call-phone to talk and socialize (41). In our study, professionals and volunteers in the focus groups highlighted that a positive aspect of a digital volunteering service during pandemic times was that patients could see their faces without the use of masks, which would facilitate connection and provide a sense of normality decreasing the levels of anxiety created during isolation. This issue could be the same results for loneliness or isolation due to physical and/or architectural difficulties (42). It could also break down the lack of non-verbal communication that occurs in digital accompaniment, being a hybrid between face-to-face and purely technological accompaniment (36).

Another aspect in common between the volunteers of this study and the volunteers of our study is that they felt very motivated to adapt their previous volunteering and to be able to continue collaborating despite the circumstances (36). However, both groups of volunteers were uncomfortable, as they compared, especially at the beginning, the way they had done it in person with the digital accompaniment.

Further limitations highlighted in our study are that patients with some kind of limitation due to age or illness cannot benefit from this type of tools if they are reduced to exclusively digital accompaniment (36). This is in line with what patients are saying, our study shows that the rejection of the use of technologies for patients is only based on the perceived lack of usefulness for the volunteer's role, since in other aspects of their life the results indicate that they are not very technological, but they do not perceive them as a threat, only in the case of physical problems that prevent the use of NT do they perceive a real difficulty. This is logical because most of them face a prognosis in which their abilities will be diminished at some point.

Something that is common to all the groups we have explored and which is common in the literature consulted is the lack of human warmth in a digital volunteering service compared to face-to-face accompaniment; this is the greatest limitation they highlight, together with the lack of knowledge of the NTs that patients, but also their relatives, may have (36). However, they were also unanimous in pointing out positive aspects of the use of this type of volunteering, such as the reduction of distances between patient and volunteer, especially in rural areas where it is more difficult to find volunteers, and the convenience or increase in contacts when it comes to facilitating accompaniment. There are no studies on volunteering that have reached these conclusions, but in other areas such as telemedicine, the use of NTs has been found to be beneficial for accessing rural areas (43).

Another common theme is the training. Volunteers in PC need to be properly trained (44) so that they can play their role in providing social support in leisure and recreational activities, emotional and instrumental support to patients and their families during the end of life. Through the contact they establish, a close relationship develops as everyone becomes more comfortable with each other over time. Thus, the volunteer is a link between the HCP and the patient/family, building bridges of communication between them, offering care through "being present" and their time, which becomes a meaningful activity in their lives (3, 45). We founded that the training referred in our study is not directly related with the NT but to the management of the silences or non-verbal language that is lost when the accompaniment is not face to face. The study of Hutchison et al (46) reported similar results with the use of technology in home care PC, not with volunteers but with professionals, but the feeling is the same. Verbal communication often fails as a key element of dialog; tone of voice can be an aspect that makes people feel empathy and helpfulness. The use of humor, silence, interpretation of body language, eye contact and touch remain challenges for digital communication. For example, the use of silence might be misinterpreted by patients, relatives and volunteers as a technological problem.

The technological profile of the participants is very important to implement a program of digital volunteering. Overall in patients and volunteers, and in many cases for relatives, because most of them are older adult with a short experience with the technologies. In other hand, as we can see in this study the perceived usefulness of a digital program is related with the technophile of the participant. So it would be a good practise to determine the technological profile prior to use a digital program, volunteering or care, before the use of this kind of interventions. The test used in this study is simple and easy to use and it would be a good approach. However, more research is needed in this topics.

Despite the fact that age or educational level play a role in the perceived usefulness of using NT. The older adults quickly became familiarized with the technology (23) when they had previous experience with computers or other devices (47, 48) caregivers’ support (46) and explanations and training before using them (47, 49, 50). This studies not reported results for volunteers’ accompaniment but they reported results from PC care support by technological solutions with very similar concerns to those found in our study. In these studies, negative emotions decreased while positive emotions increased following the consultations because patients perceived that they were being totally heard and understood and that they were receiving appropriate emotional support through the technological approach to their care. Regardless of the difficulties that may be encountered with the use of NT for PC volunteering, in our study the feeling in all groups was the same.

One of the strengths of this study is that it is a fairly new area of study: There is not much previous literature, being this study the first to carry out the evaluation of the usefulness of this services taking into account all the stakeholders involved as first step for the implementation of NT in the standard volunteer service of PC. In many cases, some of these groups are not included and it is essential to be able to implement services that meet the needs of all.

In addition, the use of mixed methodology to measure the usefulness of NT for PC volunteering allow us to have a more complete vision of the possible problems and issues during the implementation.

On the other hand, we can also find some limitations in this study. A large part of the data extraction took place during the COVID pandemic, which was a time when there was a boom in this type of initiative. At that time, it was possible to see the usefulness of the service and, after the recovery of face-to-face volunteering, the latter option was preferred. However, we do not found differences between the group before and after pandemic situation, but the perceived usefulness of NT went from being one of the only possible ways to have the volunteer service to one more tool of the volunteer for accompaniment. So we believe that NTs should be used as another tool and adapted to the needs of patients, families and the whole team, including the volunteer.

Another limitation is that the interviews with patients are shorter than those with relatives, so maybe we were able to obtain less information from this first group. Although we believe that this is logical because the patients are more deteriorated due to the disease, while some of the relatives were already in the process of mourning, so that having carried out this interview for them meant being able to relate their experience and talk about the time of caring for their relative. It is worth noting that the patients completed all the interviews, even if they were more brief, and gave us a lot of very relevant information despite the vital moment in which they find themselves.

It would also be necessary to assess the knowledge that the groups have about the role of the volunteer. PC are offered by an interdisciplinary team of which the volunteer is also a part. The relationship between professionals and volunteers must be one of complementarity and willingness to work as a team. The volunteer does not develop a professional role but acts as a companion in leisure and free time activities, favouring a relationship of trust with patient and family and offering support from a provision of help organised by an entity, in other words, volunteers provide input based on psychosocial, spiritual, and practical support to the patients and their families, and can offer information and supplement what HCP or family caregivers can offer (11). In some of the in-depth interviews with patients and relatives, we have found on occasion that there may be confusion between the roles of the professional and the volunteer. Therefore, it may be that the scores on the usefulness of the service may be lower if they do not know what the service can offer them and how it can help them.

Although the use of the implementation of digital volunteering is seen as useful, the results also show that they prefer it to be done as a mixed model or that NT is one more tool to be offered, as it cannot replace face-to-face volunteering. It is also important that volunteer services must prepare their services and train volunteers so that they can gradually be incorporated into the reality of the programmes and the new tools that they can use for their volunteering. In the future, exceptional situations may arise again, such as the COVID-19 pandemics, which do not allow for face-to-face, or there may be patient and family profiles that gradually demand it. Furthermore, we believe that in the future, as the new, more technophile generations become older, enter PC programmes and take on a more prominent role in volunteering, it will be more common for them to feel comfortable using technological devices (44).

Ethics approval and consent to participate

Ethics approval for the ITV-Pal Programme project was granted by the Malaga Regional Research Ethics Committee (NCT04900103/25-05-2021).

Written consent has been collected from all participants to this study.

Consent for publication

All participants in this study gave written approval for the results of this study to be published anonymously.

Availability of data and materials

Not applicable

Competing interests

None declared.

Funding

This work was supported by 'la Caixa' Foundation (SR20-00841).

Author contributions

EV-M, PB-F have produced the final version of this article and it has been reviewed by the rest of them. EV-M and IR-T conducted the different qualitative interviews for the sample collection. MLM-R revised the protocol for its final version. All authors have read and approved the final version of the manuscript.

Acknowledgments

Not applicable

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No competing interests reported.

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Perceived Usefulness of New Technologies in Palliative Care Volunteering. Mix Methodology study with stakeholders.

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Abstract

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Introduction

Methodology

Design

Setting

Participants

Recruitment

Variables

Data collection

Analysis

Results

Perceived usefulness of NT for volunteering

THEME 1: Difficulties in the use of NT

THEME 2: Benefits of NT

THEME 3: Training of volunteers

Relationship between the perceived usefulness and technological profile of the participants

Discussion

Conclusion

Declarations

References

Additional Declarations

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