TY - JOUR
AU - Bartlett,, Gillian
AB - Abstract Background. Informal or family caregivers are important contributors to health and health care and require support to sustain their role and address particular challenges. An experience-based health website may be an accessible, effective way to offer caregivers peer support and ultimately better equip them to care for themselves and their loved ones. Objectives. This study investigated how caregivers access and use information on the Internet about caregiving and their perspectives on the design and features of a new personal health experiences (PHEx) website. Methods. This was a qualitative descriptive study that involved three focus groups of caregivers for a total of 16 participants in a university-affiliated hospital in Quebec. Thematic analysis was used with transcriptions of recorded sessions. Results. With respect to how participants accessed and used health information, three themes emerged: searching for and choosing health websites, empowerment through the use of online health information, and concerns about health information on the Internet. In terms of their views on a health experiences website, the two main themes were: factors important for first impressions and perceived needs and expectations. Conclusion. Caregivers accessed and chose health information in a similar manner to other people but still offered additional insights regarding online health information retrieval, usage, and other perspectives, which will be helpful for future web-based initiatives that aim to provide support to caregivers. Caregivers, health informatics, patient participation, primary care, qualitative research, quality of life. Introduction Patient and family engagement in health and health care is increasingly recognized by health care professionals, health system leaders and researchers as an important determinant of health service delivery and quality (1). Furthermore, engagement of patients and families and clinicians is at the core of efforts to promote shared decision-making. One of the most accessible, cost-effective means of patient/family engagement in their own and others’ care is via the use of the Internet to obtain health information (2). There is a growing body of evidence linking accurate and relevant information on the Internet to improved health knowledge, better health behaviours and outcomes and improved physician–patient communication (3,4), although important gaps remain in the reliability and evidence base of online health information. Because people increasingly turn to the Internet as a primary source of health information (5), understanding how people access the Internet for seeking and using health information is crucial to the development of websites that will attract and retain targeted end users (6). Previous studies have explored access and use of online or eHealth information, yet little research exists regarding caregivers’ use and perception of these resources. The purpose of this study was to explore family caregivers’ approaches to seeking online health information and preferences regarding the functionality and presentation of content on a website. Informal caregivers are family members, friends or volunteers responsible for the unpaid care of a mentally or physically ill, frail or disabled family member, friend or other individual. Caregiver support will become increasingly important as Canada’s population ages and home care and long-term care facilities become overburdened (7). Several studies have highlighted their integral role in the health care system and the necessity to provide support for caregivers (8). The demands of caregiving can be rewarding but also challenging and may result in caregiver distress, negative health outcomes and an inability for caregivers to continue in their role (7). Effective support for caregivers could reduce negative feelings such as loneliness, isolation and a lack of support. This may improve the caregiver’s overall quality of life and subsequently improve their quality of care, ultimately allowing them to maintain their caregiving role. While a variety of services exist for caregiver support, these services are often not easily accessible or sufficiently available to meet caregiver needs (8). eHealth tools have the potential to fill this gap in a feasible, cost-effective and sustainable manner. There is good evidence that others’ experiences of health and illness are highly valued by people seeking health information on the Internet, and rigorous qualitative research that presents a range of experiences (beyond single testimonials or blogs) may help people make better health care choices, alert them to potential health issues, and reduce feelings of loneliness and isolation (9). Researchers from the University of Oxford developed an evidence-based website www.healthtalk.org where others can see, hear and read about people’s experiences in the UK with illnesses and health conditions (10). The summaries are illustrated with audio, video and text clips of people’s experiences with over 90 types of health- and illness-related conditions. Following the success of this initiative, the health experiences research team at St. Mary’s Hospital in Montreal, Quebec, initiated the development of a Canadian version of this approach with results of the family caregiving module now posted on www.healthexperiences.ca. The development of the new website offered an opportunity to engage caregivers to explore expectations and views about the structure, design and content of the site. This study was undertaken to address the following questions (1): How do caregivers seek and use online health information (2)? What are caregivers’ perspectives, needs and expectations towards the structure, design and content of a website featuring personal health and illness experiences of caregivers? Methods This study utilized a qualitative descriptive design (11) with semi-structured focus groups conducted in 2012 at St. Mary’s Hospital in Montreal, Quebec. Participants were English-speaking caregivers over 18 years of age recruited from caregivers associations, professional and personal networks and the St. Mary’s Family Medicine Center. The aim of participant selection was to secure a variation sample for this topic (12), allowing recruitment of caregivers with a range of backgrounds, ages, levels of Internet use and caregiving experiences. The focus groups were structured as highly interactive sessions with a semi-structured set of questions and tasks, facilitated by a senior qualitative researcher with extensive experience in leading focus groups (SL), and supported by the researcher (TT). Prior to the sessions, participants completed consent forms and pre-session questionnaires to collect basic demographic information, occupation and Internet usage (outlined in Table 1) as well as caregiving experience. Participants represented a diverse array of caregiving experiences with people often having cared for more than one person (these 16 participants listed 23 care recipients—i.e. 9 mothers, 4 fathers, 1 spouse, 1 sibling, 1 friend and 7 ‘others’) and included a range of physical and cognitive health problems. Two participants indicated ‘caregiver’ as their occupation. Table 1. Participant characteristics Participant characteristic . % . n . Sex  Female 69 11  Male 31 5 Age  20–29 25 4  30–39 6 1  40–49 25 4  50–59 19 3  60+ 25 4 Marital status  Single 31 5  Married 50 8  Divorced 6 1  Unknown 13 2 Place of birth  Quebec 56 9  Other Canadian Province 31 5  Outside of Canada 13 2 Mother language  English 69 11  French 19 3  Other 13 2 Occupation  Student 25 4  Caregiver 13 2  Profession: health care 44 7  Profession: other 19 3 Hours of Internet use per day  0 6 1  1–2 19 3  2–5 50 8  6+ 25 4 Participant characteristic . % . n . Sex  Female 69 11  Male 31 5 Age  20–29 25 4  30–39 6 1  40–49 25 4  50–59 19 3  60+ 25 4 Marital status  Single 31 5  Married 50 8  Divorced 6 1  Unknown 13 2 Place of birth  Quebec 56 9  Other Canadian Province 31 5  Outside of Canada 13 2 Mother language  English 69 11  French 19 3  Other 13 2 Occupation  Student 25 4  Caregiver 13 2  Profession: health care 44 7  Profession: other 19 3 Hours of Internet use per day  0 6 1  1–2 19 3  2–5 50 8  6+ 25 4 Open in new tab Table 1. Participant characteristics Participant characteristic . % . n . Sex  Female 69 11  Male 31 5 Age  20–29 25 4  30–39 6 1  40–49 25 4  50–59 19 3  60+ 25 4 Marital status  Single 31 5  Married 50 8  Divorced 6 1  Unknown 13 2 Place of birth  Quebec 56 9  Other Canadian Province 31 5  Outside of Canada 13 2 Mother language  English 69 11  French 19 3  Other 13 2 Occupation  Student 25 4  Caregiver 13 2  Profession: health care 44 7  Profession: other 19 3 Hours of Internet use per day  0 6 1  1–2 19 3  2–5 50 8  6+ 25 4 Participant characteristic . % . n . Sex  Female 69 11  Male 31 5 Age  20–29 25 4  30–39 6 1  40–49 25 4  50–59 19 3  60+ 25 4 Marital status  Single 31 5  Married 50 8  Divorced 6 1  Unknown 13 2 Place of birth  Quebec 56 9  Other Canadian Province 31 5  Outside of Canada 13 2 Mother language  English 69 11  French 19 3  Other 13 2 Occupation  Student 25 4  Caregiver 13 2  Profession: health care 44 7  Profession: other 19 3 Hours of Internet use per day  0 6 1  1–2 19 3  2–5 50 8  6+ 25 4 Open in new tab Three focus groups lasting 60–120 minutes were conducted with 5–6 caregivers each, for a total of 16 participants. Discussion topics and protocol were based on a study by Thompson et al. (13) that provides a discrete set of recommendations for assessing web-based support resources and developing online health information initiatives. Scripts contained open-ended, neutral questions and facilitators confirmed participants’ ideas and summarized main ideas throughout the session (14). The sessions consisted of two parts (1): discussion about how participants sought and used health information online and (2) observation and subsequent discussion about the structure, design and content of four draft versions of the healthexperiences.ca website. Focus groups were audio recorded and transcribed. Transcripts were analyzed using inductive thematic analysis, which is a semantic-level method described by Braun and Clarke used to identify broad themes (15). Larger units of text were coded, rather than a ‘line-by-line’ approach, as this is thought to be more appropriate for descriptive studies (14). An inductive thematic analysis employs a process of coding the data that does not require the researcher to fit the data into a pre-existing framework or structure (15), but rather adopts a method of “staying close” to the data and identifying broad themes (14). Data were coded and analyzed by a single coder (TT), with supervision and support from a senior qualitative researcher (SL) who read transcripts independently and discussed analysis with the researcher; codes and results of analyses were also reviewed by other members of the research team throughout the analysis and revised when needed. Results A qualitative analysis of the transcripts noted five themes: the first three themes revealed how participants search for and use online health information, and the other two revealed participants’ perspectives about the structure, design and content of draft designs of the healthexperiences.ca website. For a full list of themes and subthemes and additional participant quotations refer to Tables 2 and 3. Table 2. Themes and subthemes relating to retrieval and usage of online health information PART 1: Retrieval and usage of online health information . Theme 1A: Searching for and choosing health information websites  1A-I: Web search and link assessment using general information portal   ‘I usually start at the top of the page, usually whatever Google says is best.’  IA-II: Assessing credibility and trustworthiness of a web page   ‘[Advertisements] turns me off..... better get a sponsor or a grant [to pay for development of the website].’  1A-III: Developing a long-term relationship with a trusted site   ‘Medscape. I use Medscape also both the one for lay people and the one for professionals.’  1A-IV: External influences   ‘Well I’m a poet so I go for the personal.’ Theme 1B: Empowerment through use of online health information  IB-I: Interactions with health care providers   ‘[If] I’ve forgotten to ask something I’ve gone to get a little more information about that.’  1B-II: Support for the caregiver in providing care   ‘I don’t know what to do just like well this weekend I suspect my mother has a bladder infection. She’s been with me 4 months. How do I get her tested, how do I get an antibiotic?’  1B-III: Self-care management   ‘I’m thinking eventually I should get a family doctor or something like that. So because I don’t I have no idea how to do that…I would do ‘how to get a family doctor in Quebec’ or something like that.’  1B-IV: Social connections and support   ‘If I was going through an experience I don’t think I would probably post it on my Facebook.’ Theme 1C: Concerns about health information on the Internet  IC-I: Uncertainty about quality of information   ‘If it’s a medical question it goes to one of the medical experts who then vets it and then answers to everybody.’  1C-II: Information overload   ‘Yeah I usually go like a specific question so if you like find the answer you stop.’  1C-III: Privacy and Confidentiality   ‘Yeah to me that speaks ‘is this private to me?’  1C-IV: Limitations to online health information   ‘…but the big point is the system is insufficient and there are gonna be gaps and there are gaps. Gaps are getting bigger and under the current administration they’re just cutting and cutting and cutting.’ PART 1: Retrieval and usage of online health information . Theme 1A: Searching for and choosing health information websites  1A-I: Web search and link assessment using general information portal   ‘I usually start at the top of the page, usually whatever Google says is best.’  IA-II: Assessing credibility and trustworthiness of a web page   ‘[Advertisements] turns me off..... better get a sponsor or a grant [to pay for development of the website].’  1A-III: Developing a long-term relationship with a trusted site   ‘Medscape. I use Medscape also both the one for lay people and the one for professionals.’  1A-IV: External influences   ‘Well I’m a poet so I go for the personal.’ Theme 1B: Empowerment through use of online health information  IB-I: Interactions with health care providers   ‘[If] I’ve forgotten to ask something I’ve gone to get a little more information about that.’  1B-II: Support for the caregiver in providing care   ‘I don’t know what to do just like well this weekend I suspect my mother has a bladder infection. She’s been with me 4 months. How do I get her tested, how do I get an antibiotic?’  1B-III: Self-care management   ‘I’m thinking eventually I should get a family doctor or something like that. So because I don’t I have no idea how to do that…I would do ‘how to get a family doctor in Quebec’ or something like that.’  1B-IV: Social connections and support   ‘If I was going through an experience I don’t think I would probably post it on my Facebook.’ Theme 1C: Concerns about health information on the Internet  IC-I: Uncertainty about quality of information   ‘If it’s a medical question it goes to one of the medical experts who then vets it and then answers to everybody.’  1C-II: Information overload   ‘Yeah I usually go like a specific question so if you like find the answer you stop.’  1C-III: Privacy and Confidentiality   ‘Yeah to me that speaks ‘is this private to me?’  1C-IV: Limitations to online health information   ‘…but the big point is the system is insufficient and there are gonna be gaps and there are gaps. Gaps are getting bigger and under the current administration they’re just cutting and cutting and cutting.’ Open in new tab Table 2. Themes and subthemes relating to retrieval and usage of online health information PART 1: Retrieval and usage of online health information . Theme 1A: Searching for and choosing health information websites  1A-I: Web search and link assessment using general information portal   ‘I usually start at the top of the page, usually whatever Google says is best.’  IA-II: Assessing credibility and trustworthiness of a web page   ‘[Advertisements] turns me off..... better get a sponsor or a grant [to pay for development of the website].’  1A-III: Developing a long-term relationship with a trusted site   ‘Medscape. I use Medscape also both the one for lay people and the one for professionals.’  1A-IV: External influences   ‘Well I’m a poet so I go for the personal.’ Theme 1B: Empowerment through use of online health information  IB-I: Interactions with health care providers   ‘[If] I’ve forgotten to ask something I’ve gone to get a little more information about that.’  1B-II: Support for the caregiver in providing care   ‘I don’t know what to do just like well this weekend I suspect my mother has a bladder infection. She’s been with me 4 months. How do I get her tested, how do I get an antibiotic?’  1B-III: Self-care management   ‘I’m thinking eventually I should get a family doctor or something like that. So because I don’t I have no idea how to do that…I would do ‘how to get a family doctor in Quebec’ or something like that.’  1B-IV: Social connections and support   ‘If I was going through an experience I don’t think I would probably post it on my Facebook.’ Theme 1C: Concerns about health information on the Internet  IC-I: Uncertainty about quality of information   ‘If it’s a medical question it goes to one of the medical experts who then vets it and then answers to everybody.’  1C-II: Information overload   ‘Yeah I usually go like a specific question so if you like find the answer you stop.’  1C-III: Privacy and Confidentiality   ‘Yeah to me that speaks ‘is this private to me?’  1C-IV: Limitations to online health information   ‘…but the big point is the system is insufficient and there are gonna be gaps and there are gaps. Gaps are getting bigger and under the current administration they’re just cutting and cutting and cutting.’ PART 1: Retrieval and usage of online health information . Theme 1A: Searching for and choosing health information websites  1A-I: Web search and link assessment using general information portal   ‘I usually start at the top of the page, usually whatever Google says is best.’  IA-II: Assessing credibility and trustworthiness of a web page   ‘[Advertisements] turns me off..... better get a sponsor or a grant [to pay for development of the website].’  1A-III: Developing a long-term relationship with a trusted site   ‘Medscape. I use Medscape also both the one for lay people and the one for professionals.’  1A-IV: External influences   ‘Well I’m a poet so I go for the personal.’ Theme 1B: Empowerment through use of online health information  IB-I: Interactions with health care providers   ‘[If] I’ve forgotten to ask something I’ve gone to get a little more information about that.’  1B-II: Support for the caregiver in providing care   ‘I don’t know what to do just like well this weekend I suspect my mother has a bladder infection. She’s been with me 4 months. How do I get her tested, how do I get an antibiotic?’  1B-III: Self-care management   ‘I’m thinking eventually I should get a family doctor or something like that. So because I don’t I have no idea how to do that…I would do ‘how to get a family doctor in Quebec’ or something like that.’  1B-IV: Social connections and support   ‘If I was going through an experience I don’t think I would probably post it on my Facebook.’ Theme 1C: Concerns about health information on the Internet  IC-I: Uncertainty about quality of information   ‘If it’s a medical question it goes to one of the medical experts who then vets it and then answers to everybody.’  1C-II: Information overload   ‘Yeah I usually go like a specific question so if you like find the answer you stop.’  1C-III: Privacy and Confidentiality   ‘Yeah to me that speaks ‘is this private to me?’  1C-IV: Limitations to online health information   ‘…but the big point is the system is insufficient and there are gonna be gaps and there are gaps. Gaps are getting bigger and under the current administration they’re just cutting and cutting and cutting.’ Open in new tab Table 3. Themes and subthemes relating to PHEx information PART 2: Personal health and illness experience information . Theme 2A: Factors important for first impressions  2A-I: Appealing and user-friendly layout and design   ‘I think it’s better to be able to see the whole page so I think the longitudinal, the landscape I think the landscape is better.’  2A-II: Appropriate use of relevant images   ‘And it’s not really about that. Caregiving is not about EKG’s… nor is experience [about EKG’s].’  2A-III: Clear and informative introduction material   ‘I like the idea of the movie part because you could have like I just like the idea of something like that you know to click on and hear someone talk to you right away.’  2A-IV: Representations of authority and credibility   ‘The nice representation of the partners which is important but I think that’s everywhere but it should be prominent. Yeah partners and links yes so it tells you who are the affiliates and their credible bodies.’ Theme 2B: Perceived needs and expectations  2B-I: Relatable and relevant information   ‘I think any family member would find that offensive you know because part of what they’re feeling is you don’t know as a provider what it feels like to be in my shoes.’  2B-II: Practical tips and advice through experiential knowledge   ‘People that have actually been through it rather than just instructions on how you should handle things…’  2B-III: Combine factual and experiential-based information   ‘It’s just if you’re reading something you’re reading it with your own emotion whereas if you’re watching a video you’re listening to what they have to say with their emotion.’  2B-IV: Acknowledge varying literacy levels   ‘…for me it’s not as important but for others that it be in a simple language that people can understand.’  2B-V: Other suggested users of a PHEx website on caregiving   ‘No teaching at the medical school or nursing school level… But by case management absolutely I mean at that level I think it’s outstanding. The testimonials terrific I mean that’s the way we’re supposed to be teaching anyway. So for those teaching purposes it’s great.’ PART 2: Personal health and illness experience information . Theme 2A: Factors important for first impressions  2A-I: Appealing and user-friendly layout and design   ‘I think it’s better to be able to see the whole page so I think the longitudinal, the landscape I think the landscape is better.’  2A-II: Appropriate use of relevant images   ‘And it’s not really about that. Caregiving is not about EKG’s… nor is experience [about EKG’s].’  2A-III: Clear and informative introduction material   ‘I like the idea of the movie part because you could have like I just like the idea of something like that you know to click on and hear someone talk to you right away.’  2A-IV: Representations of authority and credibility   ‘The nice representation of the partners which is important but I think that’s everywhere but it should be prominent. Yeah partners and links yes so it tells you who are the affiliates and their credible bodies.’ Theme 2B: Perceived needs and expectations  2B-I: Relatable and relevant information   ‘I think any family member would find that offensive you know because part of what they’re feeling is you don’t know as a provider what it feels like to be in my shoes.’  2B-II: Practical tips and advice through experiential knowledge   ‘People that have actually been through it rather than just instructions on how you should handle things…’  2B-III: Combine factual and experiential-based information   ‘It’s just if you’re reading something you’re reading it with your own emotion whereas if you’re watching a video you’re listening to what they have to say with their emotion.’  2B-IV: Acknowledge varying literacy levels   ‘…for me it’s not as important but for others that it be in a simple language that people can understand.’  2B-V: Other suggested users of a PHEx website on caregiving   ‘No teaching at the medical school or nursing school level… But by case management absolutely I mean at that level I think it’s outstanding. The testimonials terrific I mean that’s the way we’re supposed to be teaching anyway. So for those teaching purposes it’s great.’ Open in new tab Table 3. Themes and subthemes relating to PHEx information PART 2: Personal health and illness experience information . Theme 2A: Factors important for first impressions  2A-I: Appealing and user-friendly layout and design   ‘I think it’s better to be able to see the whole page so I think the longitudinal, the landscape I think the landscape is better.’  2A-II: Appropriate use of relevant images   ‘And it’s not really about that. Caregiving is not about EKG’s… nor is experience [about EKG’s].’  2A-III: Clear and informative introduction material   ‘I like the idea of the movie part because you could have like I just like the idea of something like that you know to click on and hear someone talk to you right away.’  2A-IV: Representations of authority and credibility   ‘The nice representation of the partners which is important but I think that’s everywhere but it should be prominent. Yeah partners and links yes so it tells you who are the affiliates and their credible bodies.’ Theme 2B: Perceived needs and expectations  2B-I: Relatable and relevant information   ‘I think any family member would find that offensive you know because part of what they’re feeling is you don’t know as a provider what it feels like to be in my shoes.’  2B-II: Practical tips and advice through experiential knowledge   ‘People that have actually been through it rather than just instructions on how you should handle things…’  2B-III: Combine factual and experiential-based information   ‘It’s just if you’re reading something you’re reading it with your own emotion whereas if you’re watching a video you’re listening to what they have to say with their emotion.’  2B-IV: Acknowledge varying literacy levels   ‘…for me it’s not as important but for others that it be in a simple language that people can understand.’  2B-V: Other suggested users of a PHEx website on caregiving   ‘No teaching at the medical school or nursing school level… But by case management absolutely I mean at that level I think it’s outstanding. The testimonials terrific I mean that’s the way we’re supposed to be teaching anyway. So for those teaching purposes it’s great.’ PART 2: Personal health and illness experience information . Theme 2A: Factors important for first impressions  2A-I: Appealing and user-friendly layout and design   ‘I think it’s better to be able to see the whole page so I think the longitudinal, the landscape I think the landscape is better.’  2A-II: Appropriate use of relevant images   ‘And it’s not really about that. Caregiving is not about EKG’s… nor is experience [about EKG’s].’  2A-III: Clear and informative introduction material   ‘I like the idea of the movie part because you could have like I just like the idea of something like that you know to click on and hear someone talk to you right away.’  2A-IV: Representations of authority and credibility   ‘The nice representation of the partners which is important but I think that’s everywhere but it should be prominent. Yeah partners and links yes so it tells you who are the affiliates and their credible bodies.’ Theme 2B: Perceived needs and expectations  2B-I: Relatable and relevant information   ‘I think any family member would find that offensive you know because part of what they’re feeling is you don’t know as a provider what it feels like to be in my shoes.’  2B-II: Practical tips and advice through experiential knowledge   ‘People that have actually been through it rather than just instructions on how you should handle things…’  2B-III: Combine factual and experiential-based information   ‘It’s just if you’re reading something you’re reading it with your own emotion whereas if you’re watching a video you’re listening to what they have to say with their emotion.’  2B-IV: Acknowledge varying literacy levels   ‘…for me it’s not as important but for others that it be in a simple language that people can understand.’  2B-V: Other suggested users of a PHEx website on caregiving   ‘No teaching at the medical school or nursing school level… But by case management absolutely I mean at that level I think it’s outstanding. The testimonials terrific I mean that’s the way we’re supposed to be teaching anyway. So for those teaching purposes it’s great.’ Open in new tab Part 1. Retrieval and use of online health information Theme 1A: searching for and choosing health information websites. Participants reported that they typically employ a consistent approach to find a website that they will trust and explore further. They begin their search for health information websites using a general information portal (i.e. the web search engine Google), where they type in a question or keyword and choose amongst websites based on factors such as the placement of the link on the page, the website URL and domain name itself, or after opening a website, the presence or absence of advertisements and other contextual aspects. Following this, they compare content between various sources, with most participants returning back to a known website that they recognize and have visited before: “I’m kind of going to go to sites that seem reliable and Mayo Clinic that kind of rings a bell. I’ve definitely been on it a few times and I’ll probably look at the first 1–2 websites that come up, but I always go back to Mayo Clinic. I trust it.” Participants also incorporate external influences, including personal background and preferences, as well as suggestions from family and friends, into their choice of which websites they will choose to trust and explore: “Well I’ll discuss things with my daughter. She’s a doctor of optometry…. she’ll tell us a website...” Theme 1B: empowerment through use of online health information. In terms of how and why participants use health information from the Internet, empowerment emerged as a major construct. The concept of empowerment is recognized as a key process that can help people assert control over factors that influence their health and well-being (16). Participants in the present study experienced empowerment by enhancing interactions with doctors or other health care professionals, through managing their own health, their care recipient’s health, and their role as a caregiver, as well as by developing social connections and receiving support online. “…so that when I got [to the doctor’s office] I could be more precise about what I wanted to ask. You know rather than sort of go in and expect her to give me all the answers, I researched it before I went.” “I was told that I had a plantar fasciitis and… Yeah so then I knew a little bit and then I Googled it, got more information so then when I went back for follow up I was able to speak to him at the same level and I was able then to cue in on pertinent questions. So when he gave me the time he says, ‘Hey you know what it is. So he looked at me differently because I knew what—I was at the same level as him.” “I find it’s nice to read [blogs], it’s always nice to see some context but I don’t necessarily like rely on them.” Theme 1C: concerns about health information on the Internet. Participants had general concerns with health websites that ultimately influence their interactions with web-based health information. Notably, the concerns that participants have with health websites go beyond simply being uncertain of the quality of the information presented online—they are also concerned with the notion of ‘information overload’, as well as privacy and confidentiality issues inherent on the Internet. Participants also expressed awareness of the limits of health websites in terms of improving health and the health care system. “So I’m very careful I don’t I know that when you go on the web the worst thing you can do is to just read everything that you see...” “... it makes me a little cautious because I don’t want to click somewhere and then wonder ‘do people know that I’m going to be on this website?’” Part 2: personal health and illness experience information Theme 2A: factors important for first impressions. Participants highlighted a variety of factors that were important for establishing their first impressions of a personal health experiences (PHEx) website. Participants often agreed on different elements of a PHEx website that would invariably attract or deter a person; however, there were many instances where participants did not reach a consensus regarding their favourite or ‘best’ website feature. However, it is apparent that different features of the layout and design, images, introduction material and representations of the authority and credibility of the website are all factors that influence their first impressions of a website. “That’s a tough one. Well I find that it’s very dark and it’s very it’s very negative and dramatic.” “And I went when I looked at it, I saw that very unhappy girl and that and it just turned me off immediately.” “…I like the [McGill University logo], the partners to see McGill, I like that.” Theme 2B: perceived needs and expectations. Participants expressed a desire for information that is relatable and relevant to their situation. They also want practical tips for providing care and taking care of themselves, successful methods of coping throughout the care trajectory as well as stories and experiences that they can relate to on an individual and personal level. Participants also stated the importance of information presented on a PHEx website being accessible to people with varying levels of health literacy, and they prefer to have experiential-based information combined with factual information. “Yeah, coping strategies because it’s a major, major issue and what the story what someone said around the table here [whose care recipient] got sick and didn’t know how you know where to go and how to deal with it I would think a lot of people have that experience as a caregiver….” “I think it would be—personally I would like to see the range of information both factual, patient testimonials if they are of experiences—so the hard and soft parts…” Conclusions While previous studies have explored how different populations interact with various sources and forms of online health information more generally, this study focused specifically on how informal caregivers seek, retrieve and use online health information, as well as their perspectives on the design and features of a new health experiences website. We found that caregivers resembled previously studied populations in terms of their methods of accessing and using web-based health information. As described by Briggs et al. (17), this involves two distinct processes (1): an initial heuristic-based judgment of a website followed by (2) a more thorough analytical evaluation that eventually led the participants to develop a long-term relationship with a trusted site. Our study confirms previous results that factors such as company affiliation, presence of advertisements and familiarity with the source have a significant impact on users’ impressions of a website (18). We interpreted participants’ descriptions of the meaning and significance ascribed to information gathered from the Internet as expressions of empowerment, as has been reported previously (16), which may point to the primary purpose of web-based health information. The concept of caregiver or patient empowerment has gained recognition as a key enabler for decision-making and asserting control over factors that influence health and well-being (16). We also note the important iterative dynamic between experience and comfort in retrieving and using health information on the Internet and empowerment through the use of such information. The role of the caregiver in this sense is a key factor in promoting shared decision-making with the health care team (involving the health care professional, caregiver and patient), and in the acknowledgement of patients’ voices and needs within the doctor–patient relationship. Our results are in line with previous research with other populations that has shown that when making health decisions, people draw on numerous sources of information, which include their own and other’s experiences, as well as more “traditional” fact-based information (19). Exchanging knowledge and experiences, receiving and offering support and reassurance, and finding recognition are all empowering processes that have been shown to take place within online support or discussion groups (van Uden-Kraan et al. (9)). Participants also highlighted multiple factors that would be important for their first impression of a personal health and illness experience website for caregivers. These factors fit into various domains including layout and appearance, images, introduction material (e.g. text and videos) and representations of authority and credibility. Findings from this study contributed directly to the design of the healthexperiences.ca website and, more generally, inform the development of useful, relevant and attractive online evidence-based health information for caregivers. Developing more evidence-based insight into effective web design and web content is crucial to increase acceptability and use of health intervention websites, and although we focused on caregivers, it is possible that results from this study apply to the general population. Future research is warranted regarding effective health-related web content for the general population. These results also point to the need to invest in training for caregivers and patients to support their efforts in the search, selection, analysis and integration of evidence-based information on the web—to promote engagement and shared decision-making. Furthermore, these results have implications for health professionals in the consideration of caregivers’ needs in their practices. Participants in this study typically reported that they did not receive suggestions for online sources of health information from their health care teams, yet would welcome this possibility. In order to foster effective use of online health information, the doctor and caregiver or patient must develop an open and secure dialogue about health information websites. Strategies to raise awareness amongst health professionals about high-quality online health information based on rigorous research, user-friendly formats (including the presentation of research results in plain language) should be an important knowledge translation objective for teams developing such resources. The main limitations of this study are related to the small study sample and methodology. Generalizability is limited because participants in this study were not necessarily representative of the population of Canadian caregivers. Our resources and timeline were such that we were able to conduct three focus groups and the size of each group was deliberately small given the highly interactive format for the sessions. The sample contains an over predominance of health care workers, likely due to the use of professional and personal networking for recruitment. A large proportion of health care workers could be more comfortable and familiar with computers and health information on the Internet than the general population of caregivers. Also overrepresented in the sample were adults living in urban areas who may have better access to online health information than younger or very elderly people and/or people living in rural areas. Additionally, only a limited number of participants were male, and thus, the results may be influenced by a largely female perspective. We did however achieve variation to a certain extent with respect to age, background, caregiving experience and Internet usage within the overall sample which brought different perspectives and depth to the discussion and results. It is likely that additional research in the area could delineate differences between specific populations of caregivers. Finally, most research in this area has been short term or cross-sectional; however, caring for a family member or loved one over time is not a static process, but involves changes in activities, feelings and other processes (20). A longitudinal study that addresses how caregivers needs change over time, and how this might impact online health information seeking, utilization and perspectives, would be valuable future research in this area. Declaration Funding: this work was funded by St. Mary’s Hospital Foundation, a Canadian Institutes of Health Research Frederick Banting and Charles Best Graduate Scholarship and a College of Family Physicians of Canada Janus Research Grant (#235724). Ethical approval: received from the St. Mary’s Research Ethics Committee as an amendment to the original “St. Mary’s-McGill Health Experiences” study. Conflict of interest: none. 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TI - Engaging caregivers: exploring perspectives on web-based health information
JO - Family Practice
DO - 10.1093/fampra/cmw084
DA - 2017-08-01
UR - https://www.deepdyve.com/lp/oxford-university-press/engaging-caregivers-exploring-perspectives-on-web-based-health-EbL2VMTKv6
SP - 479
VL - 34
IS - 4
DP - DeepDyve
ER -