ORIGINAL ARTICLE
The use of information and communication technologies to support working carers of older people – a qualitative secondary analysis Stefan Andersson
RN, M.Sc.
Doctoral Student, School of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden
Lennart Magnusson
RN, PhD
Docent, School of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden
Elizabeth Hanson
RN, PhD
Professor, School of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden and Guest Docent, School of Nursing & Midwifery, University of Sheffield, Sheffield, S10 2LA, UK
Submitted for publication: 22 August 2014 Accepted for publication: 5 February 2015
Correspondence: Stefan Andersson School of Health and Caring Sciences Linnaeus University Kalmar Sweden Telephone: +46 480418023 E-mail: [email protected]
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ANDERSSON S., MAGNUSSON L. & HANSON E. (2016) The use of information and communication technologies to support working carers of older people – a qualitative secondary analysis. International Journal of Older People Nursing 11, 32–43. doi: 10.1111/opn.12087
Background. Family care support services have mainly focused on older spousal carers of older people and have largely overlooked working carers, whom combine paid work with informal/family care responsibilities. Recently, however, information and communication technology (ICT) systems have been identified as a potentially flexible way of supporting working carers. Aim. The aim of this study was to describe nursing and support staff’s experiences of using ICT for information, e-learning and support of working carers of older people. Design. The study employed a descriptive, qualitative approach conducting a qualitative secondary analysis of two original data sets. In total, seventeen professional staff members from two municipal family carer support units in Sweden that had implemented ICTs were interviewed using a semi-structured interview guide consisting of open-ended questions. Method. Two data sets were merged using latent qualitative content analysis. Findings. Secondary analysis produced three subthemes and an overall theme, a virtual road as a carriageway for the support of working carers, consisting of both enabling and hindering aspects in family support. This theme provides access points in both directions and is based on caring instruments that enable nursing staff’s support role. The staff’s sustainability and ability to support is influenced by caring opportunities and barriers. Conclusions. The findings suggest the ICTs to be flexible structures that provided nursing staff with a means and method to support working carers of older people. To overcome barriers to its use, measures to optimise support for working carers and the older person are needed. Implications for practice. The use of ICTs provides nurses with a means to offer support to working carers of older people and enables carers to be informed, to learn and to share their burdens with others when caring for an older family member.
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The use of ICT to support working carers of older people
Key words: information and communication technology, older people, support, working carer
What does this research add to existing knowledge in gerontology?
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The research increases the knowledge base regarding the use of ICT-based support for working carers of older people, a group that has not previously been highlighted in the empirical literature.
What are the implications of this new knowledge for nursing care with older people?
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The use of ICTs provides nurses with a means to offer support to working carers of older people. It enables carers to be informed, to learn and to share their burdens with others when caring for an older family member.
How could the findings be used to influence policy or practice or research or education?
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The findings are useful for decision makers at local, regional, national and EU levels to highlight the strengths associated with ICT-based support and to reach out to a group of carers that have previously been largely neglected, enabling them to combine paid work and care. The findings highlight key barriers in practice that need to be overcome to implement newer, innovative ICT-based services that make optimal use of finite resources. These services include the need for computer education/training and ongoing support for practitioners, older people and working carers so that they can optimise the use of readily available ICTs.
Introduction Informal family care is the major form of care and support for older dependent people in Europe and North America (Rodrigues et al., 2012). The emphasis on ‘ageing in place’, together with economic cutbacks, has placed greater demands on family carers (FCs) (e.g. children, relatives and friends) to provide help, care and support to older family members (ibid.; Mestheneos & Triantafillou, 2005;). Among family carers, © 2015 John Wiley & Sons Ltd
working carers (WCs) – most often carers in their mid-forties to early sixties – are increasingly recognised as an important target group for support due to the duality of roles (Hoffmann & Rodrigues, 2010) and the risk of burden and/or strain on their mental and physical well-being as a result of trying to balance paid work and informal care responsibilities (Nolan et al., 2003; Eldh & Carlsson, 2011). Over time, this situation may adversely affect the well-being of the older person (Wright & Leahey, 2005). Given the situation of WCs, there has been an emphasis on establishing services aimed at supporting their caregiving role (Hoffmann & Rodrigues, 2010). This emphasis has led to initiatives introducing information and communication technology (ICT) interventions as a means of support (Schmidt et al., 2011). ICT is an umbrella term for technical means to handle information and communication and consists of information technology (IT) as well as telephony, broadcast media, and all types of audio and video processing and transmission (European-agency.org). ICTs within family care for older people are purported to provide accessibility, flexibility and independence of time and space (Perkins & LaMartin, 2012) and are used in a broad range of applications to support FCs. E-care, e-health and telecare benefit FCs with means for communication with the care recipient (to access status and assistance planning); information and guidance on long-term care (information services and online consultation); peer support (for mutual assistance and information exchange); and e-learning and training on caregiving and information and training on using ICTs (to support/enhance care functions) (Carretero et al., 2012). ICT-based support networks are suggested as uniquely suited to provide low-cost, effective, convenient and individually tailored programs for FCs’ information and learning (Beauchamp et al., 2005; Magnusson et al., 2005). ICT interventions in family care support facilitate personal support, social integration and the coordination of care services to help support the quality of care of the older person and the carer’s own quality of life (Schmidt et al., 2011). Nonetheless, to the best of our knowledge, ICT-based services for the FCs of older people have mainly focused on older spousal carers. There is a dearth of research focusing on ICTs as a tool for supporting the WCs of older people (Andersson et al., 2013a,b). In addition, regardless of the benefits of ICTs there are, however, reports of ICTs not being used in practice. It is 33
Data analysis method Manifest content analysis
Manifest content analysis
Findings – Themes and categories Reaching out to carers To offer support WCs characteristics Technology and privacy challenges When to meet WCs the most Supporting relationships The ICT support system as a tool A complement in support A balancing act Anonymity Benefits and future use (to inform and administer)
A tool to support WCs To plan and organise Personal knowledge of WCs To reach out to WCs To be able to keep in touch Technological difficulties for staff A tool to support staff’s work To distribute knowledge A means for communication Support of families Flexibility in support
Data/sample/period of sampling An individual interview and a group interview with nine nursing and support staff. September 2012
Two group interviews with eight nursing and support staff. October 2012
Nursing and support staff’s experiences of using an Internet-based support network system (Gapet) to support the WCs of older people.
Nursing and support staff’s experiences of using an Internet-based support network system (Anh€ origst€ odsportalen) to support the WCs of older people.
Setting 1 (Andersson et al., 2013a)
Setting 2 (Andersson et al., 2013b)
Setting
Objective/study phenomenon
Table 1 An overview of the two initial project evaluation studies
Professional nursing and support staff Professional municipal family support ICT system provides: Web pages, Web portal, e-messages, video streaming and telephone services. Focus: information and learning, including lectures, films, radio shows, literature and news on topics related to being a WC. It includes closed social networks for peer-to-peer support within contexts such as dementia and stroke. ICT system enables nursing staff to initially establish communication networks with WCs and other staff. Professional nursing and support staff Professional municipal family support ICT system provides: Web pages, Web portal, e-messages and video streaming and telephone services. Focus: information and education, including lectures, films, radio shows, literature and news on topics related to being a WC. It provides a private portal for staff to plan and administer carer support in the municipality. WCs are able to access their personal space, which contains diaries, the older person’s life story journal, personal notes, respite care bookings and message features for communicating with staff.
Context
The use of ICT to support working carers of older people
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Data analysis method Manifest content analysis
Manifest content analysis
Findings – Themes and categories Reaching out to carers To offer support WCs characteristics Technology and privacy challenges When to meet WCs the most Supporting relationships The ICT support system as a tool A complement in support A balancing act Anonymity Benefits and future use (to inform and administer)
A tool to support WCs To plan and organise Personal knowledge of WCs To reach out to WCs To be able to keep in touch Technological difficulties for staff A tool to support staff’s work To distribute knowledge A means for communication Support of families Flexibility in support
Data/sample/period of sampling An individual interview and a group interview with nine nursing and support staff. September 2012
Two group interviews with eight nursing and support staff. October 2012
Nursing and support staff’s experiences of using an Internet-based support network system (Gapet) to support the WCs of older people.
Nursing and support staff’s experiences of using an Internet-based support network system (Anh€ origst€ odsportalen) to support the WCs of older people.
Setting 1 (Andersson et al., 2013a)
Setting 2 (Andersson et al., 2013b)
Setting
Objective/study phenomenon
Table 1 An overview of the two initial project evaluation studies
Professional nursing and support staff Professional municipal family support ICT system provides: Web pages, Web portal, e-messages, video streaming and telephone services. Focus: information and learning, including lectures, films, radio shows, literature and news on topics related to being a WC. It includes closed social networks for peer-to-peer support within contexts such as dementia and stroke. ICT system enables nursing staff to initially establish communication networks with WCs and other staff. Professional nursing and support staff Professional municipal family support ICT system provides: Web pages, Web portal, e-messages and video streaming and telephone services. Focus: information and education, including lectures, films, radio shows, literature and news on topics related to being a WC. It provides a private portal for staff to plan and administer carer support in the municipality. WCs are able to access their personal space, which contains diaries, the older person’s life story journal, personal notes, respite care bookings and message features for communicating with staff.
Context
The use of ICT to support working carers of older people
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care support and the use of ICTs in their work to support WCs. The sample included fifteen nursing staff, one occupational therapist and one recreational worker, all specially trained in family care support. There were sixteen women and one man aged between forty and sixty-two years. The median length of time spent working in healthcare and social care services varied from thirteen to forty years and in family care support between one and twelve years. Experience using ICTs in the participants’ work varied from six months to four years.
Data collection To facilitate collective sense making and to stimulate shared discussion, group interviews (inspired by a focus group methodology) were used to elicit data in both settings (Belzile € & Oberg, 2012). To avoid potential problems arising from a power relationship among participants, four participants were interviewed separately because they had a project management role that included the implementation of ICTs in their respective municipality. In total, three group interviews with eight, five and three participants and one individual interview were conducted by the first author and an interview assistant. The interviews took place at the participants’ work offices. Data collection was based on semistructured interview guides consisting of open-ended questions (Graneheim & Lundman, 2004). The guides covered major areas of interest, namely partnership working with FCs (Nolan et al., 2003), preparedness to care (Archbold et al., 1995), and information, communication, personal support and support coordination (Schmidt et al., 2011). Open-ended questions within each topic were intended to encourage participants to speak freely and recount their personal experiences about the use of ICTs in their work. Interviews were audiotaped, lasted between 70 and 110 minutes and were transcribed verbatim. Data from the group and individual interviews formed the basis for two initial evaluation reports (one for each Web-based support service) required by the external fund holder (Andersson et al., 2013a,b).
Data analysis As there were more similarities than differences regarding the study method and context between the two primary data sets (Table 1), it was feasible to subsequently perform a secondary qualitative analysis (Heaton, 2004, 2008). When conducting qualitative secondary analysis, it is suggested to use the same method as the original studies (Heaton, 2004, 2008) in order to remain close to the original contexts (Irwin, 36
2013). As data in the two evaluation reports (studies) (Andersson et al., 2013a,b) were analysed using content analysis, data sets were merged and analysed inductively using qualitative content analysis (Fig. 1) (Graneheim & Lundman, 2004; Lundman & Graneheim, 2009). This process allowed the two primary data sets to be worked together to identify a re-interpreted meaning and to reach a broader and deeper conceptual understanding of the two combined contexts into a new whole (Heaton, 2004, 2008). The process began with the first author re-reading the sets of transcripts and extracting and merging parts of the text concerning the study aim into a reduced unit of analysis. Each section of text was then sorted into meaning units and condensed into sentences (units) that were coded and then sorted and combined according to their meaning into subcategories. Based on their similarities and differences, they were then sorted into ten categories that were abstracted into three subthemes and an overarching theme (Graneheim & Lundman, 2004; Lundman & Graneheim, 2009). Rigour Several steps were taken to achieve trustworthiness. With regard to the dependability of the data, the same semistructured interview guide, with minor contextual changes, was used for all of the interviews (Graneheim & Lundman, 2004). Semi-structured interviews are acknowledged as appropriate for qualitative secondary analysis as they generate data that are more independent of the researcher (Irwin, 2013). Additionally, the primary analysis was performed by the same researcher whose contextual knowledge (Heaton, 2004; ibid.) made it feasible to conduct a secondary analysis of the initial analysed data sets. To remain attentive to the primary contexts, the wholeness of the secondary analysis was kept as contextually close as possible to the identifiers of the primary settings (e.g. support organisation and ICTs) (Major & Savin-Baden, 2011). To allow each context to resonate with the secondary analysis description findings, findings that resonated with dual contexts were universally presented, whereas those that resonated with single contexts were presented more specifically (ibid.; Irwin, 2013). For credibility, multiple coding (Oliver, 2011) was conducted, in which the categories and themes developed by the first author were questioned and discussed in comparison with the primary contexts during sessions with the second and third co-authors. To preserve cultural and linguistic nuances, the quotations were maintained in Swedish during the analysis process and were translated into English once the analysis process was complete. Final translations were then checked/ re-checked among the co-authors and a native English speaker with Swedish as a second language. For transparency, © 2015 John Wiley & Sons Ltd
The use of ICT to support working carers of older people
Figure 1 An overview of the secondary analysis process of two initial project evaluation studies.
an example of the data analysis is provided in Table 2, together with illustrative quotes from participants in the findings section (Graneheim & Lundman, 2004).
Ethical considerations The study was conducted in compliance with the ethical principles of the Declaration of Helsinki (World Medical Association, 2013) and the existing Swedish ethical review act concerning research that involves humans (SFS2003:460, 2003). The participants were informed that their participation was part of project evaluations and a research study with the object of publication. Further, they were informed about the voluntary nature of their participation; their right to withdraw at any time without repercussions regarding their work situation and that individual responses would be kept confidential. Approval to conduct the study was granted by the participating municipal authorities. All staff participants gave oral and written informed consent to participate in the study. © 2015 John Wiley & Sons Ltd
Findings The findings are presented as three subthemes which constitutes an overarching theme that can be described metaphorically as a virtual road as a carriageway for the support of WCs. This metaphor suggests a road with lanes to access support, which enables nursing and support staff to reach out to WCs in one direction and for WCs to enter and gain support in the other direction. The road is founded on enabling constituents of caring instruments to allow the family support unit and staff to administer and provide support. The staff’s sustainability and ability to support is influenced by caring opportunities and is affected by raised obstacles that hinder WCs ability to reach out and receive ICT-based support. We present the subthemes below.
ICT as a road for accessing support The family care support services were mainly based on WCs accessing support on their own initiative according to 37
S. Andersson et al. Table 2 Example of data analysis, from meaning units to subtheme Meaning units
Condensed meaning units
Categories
Subtheme
Participant: During this time it’s become a way for us to make contact with working carers. . . Then there are those who might not have liked it. Still, by then we’ve made contact and they’ve been able to receive other support. So, I can say that it’s been a way of getting hold of working carers. Participant: It’s very nice to be able to have an alternative support to offer carers. It’s nice to be able to say to carers that there’s a web system for you to use online, to talk to others in privacy if you want to. Participant: I think that the support is to be offered when there’s a need for it. Yes when the family carer reaches out for support. . .Then I believe that the ripple effect becomes stronger and it becomes more interesting for the carer. Participant:. . .there are many carers living at a distance that actually are in the system. Researcher: Are they interactive users of the system? Do they log on to the system? Participant: Absolutely. . .Absolutely, it doesn’t matter where they live. They have the access to enter from anywhere. . .
To reach out to family carers A contact surface for offering support
An access point for reaching out
ICT as a road for accessing support
To present a new arena of support
Access point for welcoming and letting in
To offer support to use if needed and at a time of choice
Lowering distance barriers towards carers at a distance Enable taking part
personal needs and preferences. To provide support, ICTs were described as a feasible means of creating and structuring virtual access points to provide visibility and to reach out to various groups of FCs. The systems provided contact points to facilitate reaching out to a previously inaccessible group of FCs, namely WCs, in their own physical surroundings. The fact that WCs were eager to try the ICTs was noted as a sign that previous unmet needs were now potentially being met. Working with Gapet has made clearer for us something that we
emotional threshold of seeking and receiving support. During the introductory process, some WCs expressed that they did not need support for themselves but simply wanted digital access to the service. In this sense, the ICTs were seen as a way to help preserve WCs’ sense of autonomy and to allow them to avoid presenting themselves as in need of support. Even when WCs did not find the ICTs useful, they enabled them to express their needs during the initial set-up period, which subsequently allowed them to be supported in other ways.
perhaps already knew deep down: that we have a group of people
There are those who might not have liked it. Still, by then, we’ve
who actually want more information and hadn’t realised that the
made contact, and they’ve been able to receive other support. So I can
support is for them too, not only for spouses or partners.
say that it’s been a way of getting hold of WCs.
The ICTs made it feasible to offer support independent of time and lowered barriers for FCs at a distance, which led to increasing numbers of contacts with WCs. Nevertheless, in the process of WCs accepting support, participants noted that there was a need to be aware of their personal views on support and technology. Support, in this regard, was described as a supportive way of working to create entrance points or inroads and to avoid establishing unnecessary obstacles in the future. The ICTs was seen as intimidating for some WCs. Information needed to be adjusted accordingly to make the digital threshold more accessible and the service more welcoming.
Although the ICTs were perceived as a means to lower thresholds and to facilitate access and reflect the WCs’ situation, they also addressed WCs’ need to seek shelter from being on physical display to others. This need was discussed by some WCs; they wished to remain private and to avoid revealing their caring situation to others for fear of stigma or for reasons of integrity and privacy. As some participants were also WCs, the option of anonymity and privacy was regarded as crucial to maintain separate roles.
Carers who are coming here for the first time are sometimes very sad
They don’t want to be in that register, they don’t want someone else to get into the system looking and learning that she’s here, who her family is. . .
and in crisis. I won’t ask if they want to join the portal at first. One waits until. . . I usually do it a bit later on.
ICT as a caring instrument in family care support
The display of ICTs also provided alternative access points that enabled participants to help some WCs over the
This subtheme reveals aspects of ICTs as ‘caring instruments’ that relates to administrative and communicative working
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The use of ICT to support working carers of older people
tools which helped facilitate caring, supportive and empowering activities by staff working within family care support. The ICTs provided effective and time-saving tools for managing contacts, and each system included different tools to organise and plan family care support services. These tools worked either directly, within the administering features of the ICT-based service itself, or indirectly, through follow-ups of WCs’ use of the service. Electronic messages (e-mails and SMS) tended to replace telephone calls and physical meetings, which enabled staff to plan more contacts within a shorter time frame. Subsequently, this usage ‘freed up’ time to focus on ‘one-to-one’ and group support for WCs with more pressing needs. It has meant that we don’t need to spend valuable time making personal contacts with working carers just to inform about support activities. . .. SMS alerts make us very time efficient. It has given us more time to actually support working carers during other activities.
The ICTs were described both as integrated with preventive care and support and sometimes as ‘a complement’ alongside standard care. In the long term, ICTs were valued as having the potential benefit of reaching out to WCs much earlier in their caring process to deliver preventive support to prevent a crisis situation. The ICTs allowed staff to inform WCs that they were available if needed and to deliver education and information via text and video Web links. However, in the short term, although the technology was viewed as a support tool, it was acknowledged as a complement; physical, ‘face-to-face’ meetings were often necessary in times of crisis or emergency. . . .when in crisis, the carer needs personal support. If you notice the situation beginning to rock, you have to meet that person.
The ICTs were used as caring instruments to reach out to WCs with a Swedish ‘smorgasbord’ of timely, knowledgebased information, which led to WCs’ self-learning and a greater understanding of their caring situation. Within the ‘peer-to-peer’ network-based ICT, WCs were also offered opportunities to exchange knowledge and experience with other WCs in a situation similar to their own. As a result, the participants were able to spend more energy on encouraging WCs to seek and gather knowledge themselves instead of simply informing them about things. It feels like one is contributing to encouraging them to be open to knowledge. One can never force them, but one can suggest and encourage.
The dissemination of self-support resources was described as leading some WCs to manage by themselves. Offering WCs the opportunity to enter a secure Web community to © 2015 John Wiley & Sons Ltd
share and receive support from others was seen as a means of helping WCs to gain control and autonomy over their caring situation. It was also acknowledged as a way of securing support when standard public support services were limited to weekday work hours. There were many times when I’ve had a talk to someone and sort of run out of ideas, like where should we go next. Then, I felt, walking out, that through Gapet, I’ve given them a possibility to search for and meet others in the same situation.
Traditional family care support services offered directly to WCs could, at times, be perceived as a threat by the older person, leading WCs to reject the support offered and causing isolation. With due respect for family dynamics, the ICTs were described as a valuable tool to keep channels of communication open by allowing support to be provided unobtrusively online. Sending this e-mail is unbelievably much better as an alternative. He can answer during her afternoon nap or something; she doesn’t need to know. In this case, their relationship is much more important, and one has to not disturb it too much.
When working within a family care support unit, participants acknowledged that the growing number of WCs made it increasingly difficult to maintain personal relationships with everyone. The ICTs enabled prompt access, which, in turn, led to more frequent contacts with WCs, either individually or collectively via electronic messages. Although the communication was digital, it was described as positive for the relationship in some ways. Where feasible, the use of personal digital cues, such as notes, was acknowledged as a potential way of facilitating communication with WCs. The cues made it easier to relate to each individual carer’s unique situation, which was recognised as an important component of their support work with WCs. We’re helped by looking at our written notes about who they are. . .. It gets more personal that way. . .. To be remembered means so much.
Obstacles hindering access to ICT support This subtheme reveals obstacles that relate to characteristics of the WCs, characteristics of the technology and its use and how the participants try to overcome these obstacles. In contrast to ICT as a carriageway for support, it was also described as a roadblock and a divider. Some WCs were described as enthusiastic, whereas others seemed more insecure. This situation was perceived as WCs sometimes simply not having the energy due to everything else they managed. For some WCs, the technical threshold was
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described as particularly difficult due to a lack of digital literacy skills. Supportive actions for education, training and showrooms to demonstrate and try new technologies were described as facilitating strategies. I’ve met a pretty large group, most often working women 50–55+,
and to avoid making them feeling grateful or guilty for their use or non-use of the ICTs. Those who are in the support system, they are there and have got to be able to have peace in that. . .. I would not want them to feel that they needed to feel grateful.
that have less experience with computers and aren’t at all accustomed to social media and who say, ‘No, no that’s not for me, Oh my goodness’. . ..
The participants identified barriers in communicating solely through text messages because some WCs questioned their own ability to put their thoughts into writing. Written words could also be misinterpreted. For sensitive matters, it was recognised that it may be necessary to communicate via telephone or ‘face to face’ in real time. Although it may not be feasible within ICTs, some participants viewed the use of video transfer for ‘face-to-face’ communication as a possible technical device to facilitate communication. One doesn’t talk about difficult and serious things in emails because it can be misinterpreted by the reader.
The participants were particularly positive towards the use of the ICTs, but they experienced technical challenges. For some, it was a process of obtaining sufficient knowledge about the tool to be comfortable with its use. A key issue raised within the context of introducing the ICTs to WCs and their further use in support was the way in which the participants themselves recognised and responded to their own needs for technical support. Some participants acknowledged that they were novice ICT users and had been ‘put on the spot’ by the WCs’ technical questions. A sense of technical confidence was described as crucial to feeling secure enough to support others. . . .of course, when you’re about to inform working carers about the system, you’re asked questions. Then, you’d like to be able to answer them, and it’s, well, a lot of knowledge is needed about the system. . .. It’s been quite an effort to feel secure and comfortable with the new task.
For some participants, offering ICT support was partly about providing WCs with a user login for the ICT. In doing so, information was collected about their situation. Because some WCs were reluctant or had difficulties expressing their need for support, this situation was described as an ethical balancing act. Although personal information was needed, it was often a question of not infringing on others’ integrity by prying for information. The ICTs were regarded as support in themselves in the flexibility they provided. Thus, questions about WCs’ use of the service were sometimes viewed as a question of privacy. It was also important to accept individual needs and preferences by not forcing WCs to use the ICTs 40
Discussion This study provides a deeper understanding of nursing staff’s support of WCs via the use of ICTs. In response to the posed research question in this study, the findings reveal benefits and opportunities as ICTs provided time-effective means for staff to administer and manage their support work. The findings indicate that ICTs can be used as a means to reach out and provide WCs with flexible and timely access to information, education and personal support. The findings also reveal that it is not merely a question of using ICTs to offer support; the ICTs also enabled staff to provide WCs with self-initiative and answers to questions about their situation and to show respect for the WCs’ need for privacy and self-identification as carers. In terms of drawbacks or challenges, nursing staff also juggled the task of offering ICTs to WCs and supporting the carers’ technical insecurities and feelings of reluctance whilst balancing their own personal views, technical fears and difficulties. Although the study design does not permit generalisations (Patton, 2002), the findings may be transferable to other contexts, ICT settings and support areas. Based on corroborating literature, the findings suggest outcome areas of clinical significance in terms of social significance, with implications for society and the supporting municipalities (e.g. impact on service utilisation), and social validity, with implications for nursing staff (Schulz et al., 2002). In terms of social significance, ICTs can be used as a timeefficient means to reach out to WCs and can provide a structure to coordinate care, support and information transfer (Schmidt et al., 2011). Digitalised mass information to proactively inform and guide WCs towards support enables a shift of focus to those with increased reactive needs for support. Because FCs often are prevented from accessing support services due to a lack of information (Lamura et al., 2008), these findings suggest important outcomes for municipalities and indicate promising future implications in this regard. In terms of social validity, the findings reflect a ‘push–pull’ relationship (Sandelowski, 1997) between technology and nurses’ support of WCs. The findings indicate several positive aspects of ICTs. ICT ‘pushes’ (helps) nurses to support WCs, particularly in providing a means for reaching out and
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The use of ICT to support working carers of older people
delivering online information and education. These findings correspond with the consensus that WCs are likely to benefit from enhanced knowledge about disease, the caregiving role and resources available to caregivers (Schulz et al., 2002; Beauchamp et al., 2005). In particular, the ICTs enabled nursing staff to reinforce the WCs’ competence by providing them with tools to gain insight into their caring situation and initiatives about how to act, two important aspects of partnership working (Nolan et al., 2003) and the promotion of preparedness to care (Archbold et al., 1995). In doing so, the staff could shift their focus from professionally telling the WCs ‘how it is’ to providing the WCs with keys to selflearning. In this way, the staff could promote the WCs as coexperts (Nolan et al., 2003). The provision of networks for peer-to-peer support provided WCs with a means of selflearning and allowed them to voice their experiences, which has previously been validated as an important area among FCs (Magnusson et al., 2005; McKechnie et al., 2014). Although these aspects were not measured, the flexibility and time efficiency they gained also provided the potential to offer interventions earlier in the caring process, which is a key factor when acknowledging the temporal needs of WCs (Nolan et al., 1996) and for achieving optimal impact of an intervention (Schulz, 2001). According to the findings, ICT-based support is dependent on several key conditions. If these conditions are not met, there is a risk of a ‘pull’ away from a desirable support outcome. Although ICT use can open up a carriageway of support, there are several aspects that may hinder family support and may negatively affect social significance and/or validity. The ethical and the technical insecurity, uncertainty and divisions among nursing staff indicate a negative impact on support; ICTs may redirect focus away from the WCs, running the risk of hindering their access to and utilisation of support. In this regard, the findings indicate a balance between the technologies per se, the skills and knowledge for their use, and the fusion within a family care support context (Barnard, 2007). A disruption in one part affects the other and may affect the outcome and utilisation of the intervention (Schulz et al., 2002; Magnusson & Hanson, 2012). This situation risks jeopardising the initial engaging steps to help WCs to understand why the goals of the intervention will be helpful to them and their relatives (Zarit & Leitsch, 2001). Because WCs’ attitudes towards technology, in combination with their perceived burden, may predispose them to the use of ICT interventions (Chiu & Eysenbach, 2011), these attitudes may also hinder the work of helping WCs overcome their own communicative and technical difficulties. Although nursing staff are providers of support, they are also gatekeepers for older people and their © 2015 John Wiley & Sons Ltd
WCs. Without staff advocating the use of ICTs, most WCs will not have access to these systems (Whitten & Mackert, 2005). Actions to support staff in technical and related ethical aspects are therefore important for the overall care and support of older people and their WCs (European Commission, 2010) as well as in specific ICT-based support interventions (Whitten & Mackert, 2005; Magnusson & Hanson, 2012).
Study limitations With regard to the transferability of the findings, one might argue that the secondary analysis of data sets based on two ICTs makes it difficult to demarcate a particular context. However, because the study was not an evaluation of a single ICT per se but rather aimed to gain insights and enable a broader understanding across two otherwise small data sets, it can also be argued that the secondary analysis allowed this aim to be fulfilled (Suri & Clarke, 2009). Additionally, according to Patton (2002), purposive sampling, including a variety of participants, contributes to a broader base of experiences and to a deeper understanding of the phenomenon. In our case, this sampling included a variety of nursing and affiliated staff implementing ICTs within two municipalities. As the participants also supported FCs with different circumstances to those of WCs of older people, such as older spousal carers and WCs of younger family members with disabilities, it may be difficult to filter out other perspectives that potentially affected the dependability of the data. However, it can be argued that this sampling increases the transferability to other carer contexts.
Conclusion The findings suggest that the ICTs provided a flexible structure that equipped the nursing staff with the means and methods to support the WCs of older people. Specifically, ICTs allowed nursing staff to help WCs more readily access support, reinforced WCs’ competence and provided information for insights into their situation and for strategies about how to act. To optimise support for the WCs of older people, barriers to the use of ICTs must be overcome. These barriers primarily include digital literacy skills for both staff and WCs that influence the transfer process. Further longitudinal studies with ICTs used over time are needed to explore the ways in which ICT-based support services can support WCs throughout their caring ‘career’. Questions need to be answered regarding for whom ICT-based support services are most appropriate, when they should be offered during the 41
S. Andersson et al.
caring trajectory, and how they can best be facilitated by nursing staff.
Implications for practice ICTs can be used as means for nursing and support practitioners to structure and to coordinate their support to carers. In particular, enabling them to reach out to working carers with flexible and timely access to information, education and personal support. ICTs provide nursing and support practitioners with the opportunity to offer an innovative form of support to working carers of older people that can help empower working carers to be informed, to learn and to share their burdens with others. To optimize support for working carers via the use of ICTs, services need to take measures to overcome barriers of use.
Acknowledgements We would like to thank all of the staff who participated in the interviews and Paul Svensson, facilitator/practitioner, Swedish Family Care Competence Centre, for his assistance during the interviews.
Funding statement This research was funded by the Swedish Institute of Assistive Technology within their Older People and Technology II programme (2010–2013).
Conflict of interest No conflict of interest has been declared by the author(s).
Contributions Study design: SA, EH, LM; data collection: SA; analysis: SA, EH, LM; manuscript preparation: SA, EH, LM.
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The use of information and communication technologies to support working carers of older people – a qualitative secondary analysis Stefan Andersson
RN, M.Sc.
Doctoral Student, School of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden
Lennart Magnusson
RN, PhD
Docent, School of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden
Elizabeth Hanson
RN, PhD
Professor, School of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden and Guest Docent, School of Nursing & Midwifery, University of Sheffield, Sheffield, S10 2LA, UK
Submitted for publication: 22 August 2014 Accepted for publication: 5 February 2015
Correspondence: Stefan Andersson School of Health and Caring Sciences Linnaeus University Kalmar Sweden Telephone: +46 480418023 E-mail: [email protected]
32
ANDERSSON S., MAGNUSSON L. & HANSON E. (2016) The use of information and communication technologies to support working carers of older people – a qualitative secondary analysis. International Journal of Older People Nursing 11, 32–43. doi: 10.1111/opn.12087
Background. Family care support services have mainly focused on older spousal carers of older people and have largely overlooked working carers, whom combine paid work with informal/family care responsibilities. Recently, however, information and communication technology (ICT) systems have been identified as a potentially flexible way of supporting working carers. Aim. The aim of this study was to describe nursing and support staff’s experiences of using ICT for information, e-learning and support of working carers of older people. Design. The study employed a descriptive, qualitative approach conducting a qualitative secondary analysis of two original data sets. In total, seventeen professional staff members from two municipal family carer support units in Sweden that had implemented ICTs were interviewed using a semi-structured interview guide consisting of open-ended questions. Method. Two data sets were merged using latent qualitative content analysis. Findings. Secondary analysis produced three subthemes and an overall theme, a virtual road as a carriageway for the support of working carers, consisting of both enabling and hindering aspects in family support. This theme provides access points in both directions and is based on caring instruments that enable nursing staff’s support role. The staff’s sustainability and ability to support is influenced by caring opportunities and barriers. Conclusions. The findings suggest the ICTs to be flexible structures that provided nursing staff with a means and method to support working carers of older people. To overcome barriers to its use, measures to optimise support for working carers and the older person are needed. Implications for practice. The use of ICTs provides nurses with a means to offer support to working carers of older people and enables carers to be informed, to learn and to share their burdens with others when caring for an older family member.
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The use of ICT to support working carers of older people
Key words: information and communication technology, older people, support, working carer
What does this research add to existing knowledge in gerontology?
•
The research increases the knowledge base regarding the use of ICT-based support for working carers of older people, a group that has not previously been highlighted in the empirical literature.
What are the implications of this new knowledge for nursing care with older people?
•
The use of ICTs provides nurses with a means to offer support to working carers of older people. It enables carers to be informed, to learn and to share their burdens with others when caring for an older family member.
How could the findings be used to influence policy or practice or research or education?
•
•
The findings are useful for decision makers at local, regional, national and EU levels to highlight the strengths associated with ICT-based support and to reach out to a group of carers that have previously been largely neglected, enabling them to combine paid work and care. The findings highlight key barriers in practice that need to be overcome to implement newer, innovative ICT-based services that make optimal use of finite resources. These services include the need for computer education/training and ongoing support for practitioners, older people and working carers so that they can optimise the use of readily available ICTs.
Introduction Informal family care is the major form of care and support for older dependent people in Europe and North America (Rodrigues et al., 2012). The emphasis on ‘ageing in place’, together with economic cutbacks, has placed greater demands on family carers (FCs) (e.g. children, relatives and friends) to provide help, care and support to older family members (ibid.; Mestheneos & Triantafillou, 2005;). Among family carers, © 2015 John Wiley & Sons Ltd
working carers (WCs) – most often carers in their mid-forties to early sixties – are increasingly recognised as an important target group for support due to the duality of roles (Hoffmann & Rodrigues, 2010) and the risk of burden and/or strain on their mental and physical well-being as a result of trying to balance paid work and informal care responsibilities (Nolan et al., 2003; Eldh & Carlsson, 2011). Over time, this situation may adversely affect the well-being of the older person (Wright & Leahey, 2005). Given the situation of WCs, there has been an emphasis on establishing services aimed at supporting their caregiving role (Hoffmann & Rodrigues, 2010). This emphasis has led to initiatives introducing information and communication technology (ICT) interventions as a means of support (Schmidt et al., 2011). ICT is an umbrella term for technical means to handle information and communication and consists of information technology (IT) as well as telephony, broadcast media, and all types of audio and video processing and transmission (European-agency.org). ICTs within family care for older people are purported to provide accessibility, flexibility and independence of time and space (Perkins & LaMartin, 2012) and are used in a broad range of applications to support FCs. E-care, e-health and telecare benefit FCs with means for communication with the care recipient (to access status and assistance planning); information and guidance on long-term care (information services and online consultation); peer support (for mutual assistance and information exchange); and e-learning and training on caregiving and information and training on using ICTs (to support/enhance care functions) (Carretero et al., 2012). ICT-based support networks are suggested as uniquely suited to provide low-cost, effective, convenient and individually tailored programs for FCs’ information and learning (Beauchamp et al., 2005; Magnusson et al., 2005). ICT interventions in family care support facilitate personal support, social integration and the coordination of care services to help support the quality of care of the older person and the carer’s own quality of life (Schmidt et al., 2011). Nonetheless, to the best of our knowledge, ICT-based services for the FCs of older people have mainly focused on older spousal carers. There is a dearth of research focusing on ICTs as a tool for supporting the WCs of older people (Andersson et al., 2013a,b). In addition, regardless of the benefits of ICTs there are, however, reports of ICTs not being used in practice. It is 33
Data analysis method Manifest content analysis
Manifest content analysis
Findings – Themes and categories Reaching out to carers To offer support WCs characteristics Technology and privacy challenges When to meet WCs the most Supporting relationships The ICT support system as a tool A complement in support A balancing act Anonymity Benefits and future use (to inform and administer)
A tool to support WCs To plan and organise Personal knowledge of WCs To reach out to WCs To be able to keep in touch Technological difficulties for staff A tool to support staff’s work To distribute knowledge A means for communication Support of families Flexibility in support
Data/sample/period of sampling An individual interview and a group interview with nine nursing and support staff. September 2012
Two group interviews with eight nursing and support staff. October 2012
Nursing and support staff’s experiences of using an Internet-based support network system (Gapet) to support the WCs of older people.
Nursing and support staff’s experiences of using an Internet-based support network system (Anh€ origst€ odsportalen) to support the WCs of older people.
Setting 1 (Andersson et al., 2013a)
Setting 2 (Andersson et al., 2013b)
Setting
Objective/study phenomenon
Table 1 An overview of the two initial project evaluation studies
Professional nursing and support staff Professional municipal family support ICT system provides: Web pages, Web portal, e-messages, video streaming and telephone services. Focus: information and learning, including lectures, films, radio shows, literature and news on topics related to being a WC. It includes closed social networks for peer-to-peer support within contexts such as dementia and stroke. ICT system enables nursing staff to initially establish communication networks with WCs and other staff. Professional nursing and support staff Professional municipal family support ICT system provides: Web pages, Web portal, e-messages and video streaming and telephone services. Focus: information and education, including lectures, films, radio shows, literature and news on topics related to being a WC. It provides a private portal for staff to plan and administer carer support in the municipality. WCs are able to access their personal space, which contains diaries, the older person’s life story journal, personal notes, respite care bookings and message features for communicating with staff.
Context
The use of ICT to support working carers of older people
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Data analysis method Manifest content analysis
Manifest content analysis
Findings – Themes and categories Reaching out to carers To offer support WCs characteristics Technology and privacy challenges When to meet WCs the most Supporting relationships The ICT support system as a tool A complement in support A balancing act Anonymity Benefits and future use (to inform and administer)
A tool to support WCs To plan and organise Personal knowledge of WCs To reach out to WCs To be able to keep in touch Technological difficulties for staff A tool to support staff’s work To distribute knowledge A means for communication Support of families Flexibility in support
Data/sample/period of sampling An individual interview and a group interview with nine nursing and support staff. September 2012
Two group interviews with eight nursing and support staff. October 2012
Nursing and support staff’s experiences of using an Internet-based support network system (Gapet) to support the WCs of older people.
Nursing and support staff’s experiences of using an Internet-based support network system (Anh€ origst€ odsportalen) to support the WCs of older people.
Setting 1 (Andersson et al., 2013a)
Setting 2 (Andersson et al., 2013b)
Setting
Objective/study phenomenon
Table 1 An overview of the two initial project evaluation studies
Professional nursing and support staff Professional municipal family support ICT system provides: Web pages, Web portal, e-messages, video streaming and telephone services. Focus: information and learning, including lectures, films, radio shows, literature and news on topics related to being a WC. It includes closed social networks for peer-to-peer support within contexts such as dementia and stroke. ICT system enables nursing staff to initially establish communication networks with WCs and other staff. Professional nursing and support staff Professional municipal family support ICT system provides: Web pages, Web portal, e-messages and video streaming and telephone services. Focus: information and education, including lectures, films, radio shows, literature and news on topics related to being a WC. It provides a private portal for staff to plan and administer carer support in the municipality. WCs are able to access their personal space, which contains diaries, the older person’s life story journal, personal notes, respite care bookings and message features for communicating with staff.
Context
The use of ICT to support working carers of older people
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S. Andersson et al.
care support and the use of ICTs in their work to support WCs. The sample included fifteen nursing staff, one occupational therapist and one recreational worker, all specially trained in family care support. There were sixteen women and one man aged between forty and sixty-two years. The median length of time spent working in healthcare and social care services varied from thirteen to forty years and in family care support between one and twelve years. Experience using ICTs in the participants’ work varied from six months to four years.
Data collection To facilitate collective sense making and to stimulate shared discussion, group interviews (inspired by a focus group methodology) were used to elicit data in both settings (Belzile € & Oberg, 2012). To avoid potential problems arising from a power relationship among participants, four participants were interviewed separately because they had a project management role that included the implementation of ICTs in their respective municipality. In total, three group interviews with eight, five and three participants and one individual interview were conducted by the first author and an interview assistant. The interviews took place at the participants’ work offices. Data collection was based on semistructured interview guides consisting of open-ended questions (Graneheim & Lundman, 2004). The guides covered major areas of interest, namely partnership working with FCs (Nolan et al., 2003), preparedness to care (Archbold et al., 1995), and information, communication, personal support and support coordination (Schmidt et al., 2011). Open-ended questions within each topic were intended to encourage participants to speak freely and recount their personal experiences about the use of ICTs in their work. Interviews were audiotaped, lasted between 70 and 110 minutes and were transcribed verbatim. Data from the group and individual interviews formed the basis for two initial evaluation reports (one for each Web-based support service) required by the external fund holder (Andersson et al., 2013a,b).
Data analysis As there were more similarities than differences regarding the study method and context between the two primary data sets (Table 1), it was feasible to subsequently perform a secondary qualitative analysis (Heaton, 2004, 2008). When conducting qualitative secondary analysis, it is suggested to use the same method as the original studies (Heaton, 2004, 2008) in order to remain close to the original contexts (Irwin, 36
2013). As data in the two evaluation reports (studies) (Andersson et al., 2013a,b) were analysed using content analysis, data sets were merged and analysed inductively using qualitative content analysis (Fig. 1) (Graneheim & Lundman, 2004; Lundman & Graneheim, 2009). This process allowed the two primary data sets to be worked together to identify a re-interpreted meaning and to reach a broader and deeper conceptual understanding of the two combined contexts into a new whole (Heaton, 2004, 2008). The process began with the first author re-reading the sets of transcripts and extracting and merging parts of the text concerning the study aim into a reduced unit of analysis. Each section of text was then sorted into meaning units and condensed into sentences (units) that were coded and then sorted and combined according to their meaning into subcategories. Based on their similarities and differences, they were then sorted into ten categories that were abstracted into three subthemes and an overarching theme (Graneheim & Lundman, 2004; Lundman & Graneheim, 2009). Rigour Several steps were taken to achieve trustworthiness. With regard to the dependability of the data, the same semistructured interview guide, with minor contextual changes, was used for all of the interviews (Graneheim & Lundman, 2004). Semi-structured interviews are acknowledged as appropriate for qualitative secondary analysis as they generate data that are more independent of the researcher (Irwin, 2013). Additionally, the primary analysis was performed by the same researcher whose contextual knowledge (Heaton, 2004; ibid.) made it feasible to conduct a secondary analysis of the initial analysed data sets. To remain attentive to the primary contexts, the wholeness of the secondary analysis was kept as contextually close as possible to the identifiers of the primary settings (e.g. support organisation and ICTs) (Major & Savin-Baden, 2011). To allow each context to resonate with the secondary analysis description findings, findings that resonated with dual contexts were universally presented, whereas those that resonated with single contexts were presented more specifically (ibid.; Irwin, 2013). For credibility, multiple coding (Oliver, 2011) was conducted, in which the categories and themes developed by the first author were questioned and discussed in comparison with the primary contexts during sessions with the second and third co-authors. To preserve cultural and linguistic nuances, the quotations were maintained in Swedish during the analysis process and were translated into English once the analysis process was complete. Final translations were then checked/ re-checked among the co-authors and a native English speaker with Swedish as a second language. For transparency, © 2015 John Wiley & Sons Ltd
The use of ICT to support working carers of older people
Figure 1 An overview of the secondary analysis process of two initial project evaluation studies.
an example of the data analysis is provided in Table 2, together with illustrative quotes from participants in the findings section (Graneheim & Lundman, 2004).
Ethical considerations The study was conducted in compliance with the ethical principles of the Declaration of Helsinki (World Medical Association, 2013) and the existing Swedish ethical review act concerning research that involves humans (SFS2003:460, 2003). The participants were informed that their participation was part of project evaluations and a research study with the object of publication. Further, they were informed about the voluntary nature of their participation; their right to withdraw at any time without repercussions regarding their work situation and that individual responses would be kept confidential. Approval to conduct the study was granted by the participating municipal authorities. All staff participants gave oral and written informed consent to participate in the study. © 2015 John Wiley & Sons Ltd
Findings The findings are presented as three subthemes which constitutes an overarching theme that can be described metaphorically as a virtual road as a carriageway for the support of WCs. This metaphor suggests a road with lanes to access support, which enables nursing and support staff to reach out to WCs in one direction and for WCs to enter and gain support in the other direction. The road is founded on enabling constituents of caring instruments to allow the family support unit and staff to administer and provide support. The staff’s sustainability and ability to support is influenced by caring opportunities and is affected by raised obstacles that hinder WCs ability to reach out and receive ICT-based support. We present the subthemes below.
ICT as a road for accessing support The family care support services were mainly based on WCs accessing support on their own initiative according to 37
S. Andersson et al. Table 2 Example of data analysis, from meaning units to subtheme Meaning units
Condensed meaning units
Categories
Subtheme
Participant: During this time it’s become a way for us to make contact with working carers. . . Then there are those who might not have liked it. Still, by then we’ve made contact and they’ve been able to receive other support. So, I can say that it’s been a way of getting hold of working carers. Participant: It’s very nice to be able to have an alternative support to offer carers. It’s nice to be able to say to carers that there’s a web system for you to use online, to talk to others in privacy if you want to. Participant: I think that the support is to be offered when there’s a need for it. Yes when the family carer reaches out for support. . .Then I believe that the ripple effect becomes stronger and it becomes more interesting for the carer. Participant:. . .there are many carers living at a distance that actually are in the system. Researcher: Are they interactive users of the system? Do they log on to the system? Participant: Absolutely. . .Absolutely, it doesn’t matter where they live. They have the access to enter from anywhere. . .
To reach out to family carers A contact surface for offering support
An access point for reaching out
ICT as a road for accessing support
To present a new arena of support
Access point for welcoming and letting in
To offer support to use if needed and at a time of choice
Lowering distance barriers towards carers at a distance Enable taking part
personal needs and preferences. To provide support, ICTs were described as a feasible means of creating and structuring virtual access points to provide visibility and to reach out to various groups of FCs. The systems provided contact points to facilitate reaching out to a previously inaccessible group of FCs, namely WCs, in their own physical surroundings. The fact that WCs were eager to try the ICTs was noted as a sign that previous unmet needs were now potentially being met. Working with Gapet has made clearer for us something that we
emotional threshold of seeking and receiving support. During the introductory process, some WCs expressed that they did not need support for themselves but simply wanted digital access to the service. In this sense, the ICTs were seen as a way to help preserve WCs’ sense of autonomy and to allow them to avoid presenting themselves as in need of support. Even when WCs did not find the ICTs useful, they enabled them to express their needs during the initial set-up period, which subsequently allowed them to be supported in other ways.
perhaps already knew deep down: that we have a group of people
There are those who might not have liked it. Still, by then, we’ve
who actually want more information and hadn’t realised that the
made contact, and they’ve been able to receive other support. So I can
support is for them too, not only for spouses or partners.
say that it’s been a way of getting hold of WCs.
The ICTs made it feasible to offer support independent of time and lowered barriers for FCs at a distance, which led to increasing numbers of contacts with WCs. Nevertheless, in the process of WCs accepting support, participants noted that there was a need to be aware of their personal views on support and technology. Support, in this regard, was described as a supportive way of working to create entrance points or inroads and to avoid establishing unnecessary obstacles in the future. The ICTs was seen as intimidating for some WCs. Information needed to be adjusted accordingly to make the digital threshold more accessible and the service more welcoming.
Although the ICTs were perceived as a means to lower thresholds and to facilitate access and reflect the WCs’ situation, they also addressed WCs’ need to seek shelter from being on physical display to others. This need was discussed by some WCs; they wished to remain private and to avoid revealing their caring situation to others for fear of stigma or for reasons of integrity and privacy. As some participants were also WCs, the option of anonymity and privacy was regarded as crucial to maintain separate roles.
Carers who are coming here for the first time are sometimes very sad
They don’t want to be in that register, they don’t want someone else to get into the system looking and learning that she’s here, who her family is. . .
and in crisis. I won’t ask if they want to join the portal at first. One waits until. . . I usually do it a bit later on.
ICT as a caring instrument in family care support
The display of ICTs also provided alternative access points that enabled participants to help some WCs over the
This subtheme reveals aspects of ICTs as ‘caring instruments’ that relates to administrative and communicative working
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The use of ICT to support working carers of older people
tools which helped facilitate caring, supportive and empowering activities by staff working within family care support. The ICTs provided effective and time-saving tools for managing contacts, and each system included different tools to organise and plan family care support services. These tools worked either directly, within the administering features of the ICT-based service itself, or indirectly, through follow-ups of WCs’ use of the service. Electronic messages (e-mails and SMS) tended to replace telephone calls and physical meetings, which enabled staff to plan more contacts within a shorter time frame. Subsequently, this usage ‘freed up’ time to focus on ‘one-to-one’ and group support for WCs with more pressing needs. It has meant that we don’t need to spend valuable time making personal contacts with working carers just to inform about support activities. . .. SMS alerts make us very time efficient. It has given us more time to actually support working carers during other activities.
The ICTs were described both as integrated with preventive care and support and sometimes as ‘a complement’ alongside standard care. In the long term, ICTs were valued as having the potential benefit of reaching out to WCs much earlier in their caring process to deliver preventive support to prevent a crisis situation. The ICTs allowed staff to inform WCs that they were available if needed and to deliver education and information via text and video Web links. However, in the short term, although the technology was viewed as a support tool, it was acknowledged as a complement; physical, ‘face-to-face’ meetings were often necessary in times of crisis or emergency. . . .when in crisis, the carer needs personal support. If you notice the situation beginning to rock, you have to meet that person.
The ICTs were used as caring instruments to reach out to WCs with a Swedish ‘smorgasbord’ of timely, knowledgebased information, which led to WCs’ self-learning and a greater understanding of their caring situation. Within the ‘peer-to-peer’ network-based ICT, WCs were also offered opportunities to exchange knowledge and experience with other WCs in a situation similar to their own. As a result, the participants were able to spend more energy on encouraging WCs to seek and gather knowledge themselves instead of simply informing them about things. It feels like one is contributing to encouraging them to be open to knowledge. One can never force them, but one can suggest and encourage.
The dissemination of self-support resources was described as leading some WCs to manage by themselves. Offering WCs the opportunity to enter a secure Web community to © 2015 John Wiley & Sons Ltd
share and receive support from others was seen as a means of helping WCs to gain control and autonomy over their caring situation. It was also acknowledged as a way of securing support when standard public support services were limited to weekday work hours. There were many times when I’ve had a talk to someone and sort of run out of ideas, like where should we go next. Then, I felt, walking out, that through Gapet, I’ve given them a possibility to search for and meet others in the same situation.
Traditional family care support services offered directly to WCs could, at times, be perceived as a threat by the older person, leading WCs to reject the support offered and causing isolation. With due respect for family dynamics, the ICTs were described as a valuable tool to keep channels of communication open by allowing support to be provided unobtrusively online. Sending this e-mail is unbelievably much better as an alternative. He can answer during her afternoon nap or something; she doesn’t need to know. In this case, their relationship is much more important, and one has to not disturb it too much.
When working within a family care support unit, participants acknowledged that the growing number of WCs made it increasingly difficult to maintain personal relationships with everyone. The ICTs enabled prompt access, which, in turn, led to more frequent contacts with WCs, either individually or collectively via electronic messages. Although the communication was digital, it was described as positive for the relationship in some ways. Where feasible, the use of personal digital cues, such as notes, was acknowledged as a potential way of facilitating communication with WCs. The cues made it easier to relate to each individual carer’s unique situation, which was recognised as an important component of their support work with WCs. We’re helped by looking at our written notes about who they are. . .. It gets more personal that way. . .. To be remembered means so much.
Obstacles hindering access to ICT support This subtheme reveals obstacles that relate to characteristics of the WCs, characteristics of the technology and its use and how the participants try to overcome these obstacles. In contrast to ICT as a carriageway for support, it was also described as a roadblock and a divider. Some WCs were described as enthusiastic, whereas others seemed more insecure. This situation was perceived as WCs sometimes simply not having the energy due to everything else they managed. For some WCs, the technical threshold was
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S. Andersson et al.
described as particularly difficult due to a lack of digital literacy skills. Supportive actions for education, training and showrooms to demonstrate and try new technologies were described as facilitating strategies. I’ve met a pretty large group, most often working women 50–55+,
and to avoid making them feeling grateful or guilty for their use or non-use of the ICTs. Those who are in the support system, they are there and have got to be able to have peace in that. . .. I would not want them to feel that they needed to feel grateful.
that have less experience with computers and aren’t at all accustomed to social media and who say, ‘No, no that’s not for me, Oh my goodness’. . ..
The participants identified barriers in communicating solely through text messages because some WCs questioned their own ability to put their thoughts into writing. Written words could also be misinterpreted. For sensitive matters, it was recognised that it may be necessary to communicate via telephone or ‘face to face’ in real time. Although it may not be feasible within ICTs, some participants viewed the use of video transfer for ‘face-to-face’ communication as a possible technical device to facilitate communication. One doesn’t talk about difficult and serious things in emails because it can be misinterpreted by the reader.
The participants were particularly positive towards the use of the ICTs, but they experienced technical challenges. For some, it was a process of obtaining sufficient knowledge about the tool to be comfortable with its use. A key issue raised within the context of introducing the ICTs to WCs and their further use in support was the way in which the participants themselves recognised and responded to their own needs for technical support. Some participants acknowledged that they were novice ICT users and had been ‘put on the spot’ by the WCs’ technical questions. A sense of technical confidence was described as crucial to feeling secure enough to support others. . . .of course, when you’re about to inform working carers about the system, you’re asked questions. Then, you’d like to be able to answer them, and it’s, well, a lot of knowledge is needed about the system. . .. It’s been quite an effort to feel secure and comfortable with the new task.
For some participants, offering ICT support was partly about providing WCs with a user login for the ICT. In doing so, information was collected about their situation. Because some WCs were reluctant or had difficulties expressing their need for support, this situation was described as an ethical balancing act. Although personal information was needed, it was often a question of not infringing on others’ integrity by prying for information. The ICTs were regarded as support in themselves in the flexibility they provided. Thus, questions about WCs’ use of the service were sometimes viewed as a question of privacy. It was also important to accept individual needs and preferences by not forcing WCs to use the ICTs 40
Discussion This study provides a deeper understanding of nursing staff’s support of WCs via the use of ICTs. In response to the posed research question in this study, the findings reveal benefits and opportunities as ICTs provided time-effective means for staff to administer and manage their support work. The findings indicate that ICTs can be used as a means to reach out and provide WCs with flexible and timely access to information, education and personal support. The findings also reveal that it is not merely a question of using ICTs to offer support; the ICTs also enabled staff to provide WCs with self-initiative and answers to questions about their situation and to show respect for the WCs’ need for privacy and self-identification as carers. In terms of drawbacks or challenges, nursing staff also juggled the task of offering ICTs to WCs and supporting the carers’ technical insecurities and feelings of reluctance whilst balancing their own personal views, technical fears and difficulties. Although the study design does not permit generalisations (Patton, 2002), the findings may be transferable to other contexts, ICT settings and support areas. Based on corroborating literature, the findings suggest outcome areas of clinical significance in terms of social significance, with implications for society and the supporting municipalities (e.g. impact on service utilisation), and social validity, with implications for nursing staff (Schulz et al., 2002). In terms of social significance, ICTs can be used as a timeefficient means to reach out to WCs and can provide a structure to coordinate care, support and information transfer (Schmidt et al., 2011). Digitalised mass information to proactively inform and guide WCs towards support enables a shift of focus to those with increased reactive needs for support. Because FCs often are prevented from accessing support services due to a lack of information (Lamura et al., 2008), these findings suggest important outcomes for municipalities and indicate promising future implications in this regard. In terms of social validity, the findings reflect a ‘push–pull’ relationship (Sandelowski, 1997) between technology and nurses’ support of WCs. The findings indicate several positive aspects of ICTs. ICT ‘pushes’ (helps) nurses to support WCs, particularly in providing a means for reaching out and
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The use of ICT to support working carers of older people
delivering online information and education. These findings correspond with the consensus that WCs are likely to benefit from enhanced knowledge about disease, the caregiving role and resources available to caregivers (Schulz et al., 2002; Beauchamp et al., 2005). In particular, the ICTs enabled nursing staff to reinforce the WCs’ competence by providing them with tools to gain insight into their caring situation and initiatives about how to act, two important aspects of partnership working (Nolan et al., 2003) and the promotion of preparedness to care (Archbold et al., 1995). In doing so, the staff could shift their focus from professionally telling the WCs ‘how it is’ to providing the WCs with keys to selflearning. In this way, the staff could promote the WCs as coexperts (Nolan et al., 2003). The provision of networks for peer-to-peer support provided WCs with a means of selflearning and allowed them to voice their experiences, which has previously been validated as an important area among FCs (Magnusson et al., 2005; McKechnie et al., 2014). Although these aspects were not measured, the flexibility and time efficiency they gained also provided the potential to offer interventions earlier in the caring process, which is a key factor when acknowledging the temporal needs of WCs (Nolan et al., 1996) and for achieving optimal impact of an intervention (Schulz, 2001). According to the findings, ICT-based support is dependent on several key conditions. If these conditions are not met, there is a risk of a ‘pull’ away from a desirable support outcome. Although ICT use can open up a carriageway of support, there are several aspects that may hinder family support and may negatively affect social significance and/or validity. The ethical and the technical insecurity, uncertainty and divisions among nursing staff indicate a negative impact on support; ICTs may redirect focus away from the WCs, running the risk of hindering their access to and utilisation of support. In this regard, the findings indicate a balance between the technologies per se, the skills and knowledge for their use, and the fusion within a family care support context (Barnard, 2007). A disruption in one part affects the other and may affect the outcome and utilisation of the intervention (Schulz et al., 2002; Magnusson & Hanson, 2012). This situation risks jeopardising the initial engaging steps to help WCs to understand why the goals of the intervention will be helpful to them and their relatives (Zarit & Leitsch, 2001). Because WCs’ attitudes towards technology, in combination with their perceived burden, may predispose them to the use of ICT interventions (Chiu & Eysenbach, 2011), these attitudes may also hinder the work of helping WCs overcome their own communicative and technical difficulties. Although nursing staff are providers of support, they are also gatekeepers for older people and their © 2015 John Wiley & Sons Ltd
WCs. Without staff advocating the use of ICTs, most WCs will not have access to these systems (Whitten & Mackert, 2005). Actions to support staff in technical and related ethical aspects are therefore important for the overall care and support of older people and their WCs (European Commission, 2010) as well as in specific ICT-based support interventions (Whitten & Mackert, 2005; Magnusson & Hanson, 2012).
Study limitations With regard to the transferability of the findings, one might argue that the secondary analysis of data sets based on two ICTs makes it difficult to demarcate a particular context. However, because the study was not an evaluation of a single ICT per se but rather aimed to gain insights and enable a broader understanding across two otherwise small data sets, it can also be argued that the secondary analysis allowed this aim to be fulfilled (Suri & Clarke, 2009). Additionally, according to Patton (2002), purposive sampling, including a variety of participants, contributes to a broader base of experiences and to a deeper understanding of the phenomenon. In our case, this sampling included a variety of nursing and affiliated staff implementing ICTs within two municipalities. As the participants also supported FCs with different circumstances to those of WCs of older people, such as older spousal carers and WCs of younger family members with disabilities, it may be difficult to filter out other perspectives that potentially affected the dependability of the data. However, it can be argued that this sampling increases the transferability to other carer contexts.
Conclusion The findings suggest that the ICTs provided a flexible structure that equipped the nursing staff with the means and methods to support the WCs of older people. Specifically, ICTs allowed nursing staff to help WCs more readily access support, reinforced WCs’ competence and provided information for insights into their situation and for strategies about how to act. To optimise support for the WCs of older people, barriers to the use of ICTs must be overcome. These barriers primarily include digital literacy skills for both staff and WCs that influence the transfer process. Further longitudinal studies with ICTs used over time are needed to explore the ways in which ICT-based support services can support WCs throughout their caring ‘career’. Questions need to be answered regarding for whom ICT-based support services are most appropriate, when they should be offered during the 41
S. Andersson et al.
caring trajectory, and how they can best be facilitated by nursing staff.
Implications for practice ICTs can be used as means for nursing and support practitioners to structure and to coordinate their support to carers. In particular, enabling them to reach out to working carers with flexible and timely access to information, education and personal support. ICTs provide nursing and support practitioners with the opportunity to offer an innovative form of support to working carers of older people that can help empower working carers to be informed, to learn and to share their burdens with others. To optimize support for working carers via the use of ICTs, services need to take measures to overcome barriers of use.
Acknowledgements We would like to thank all of the staff who participated in the interviews and Paul Svensson, facilitator/practitioner, Swedish Family Care Competence Centre, for his assistance during the interviews.
Funding statement This research was funded by the Swedish Institute of Assistive Technology within their Older People and Technology II programme (2010–2013).
Conflict of interest No conflict of interest has been declared by the author(s).
Contributions Study design: SA, EH, LM; data collection: SA; analysis: SA, EH, LM; manuscript preparation: SA, EH, LM.
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