The role of the Internet continues to expand in the healthcare sector. Patients, caregivers, and family members use the Internet to search for information related to their symptoms, diagnostic tests, and treatments.1,2 The Internet also provides opportunities for healthcare providers to communicate with patients.3–5 The Internet offers an opportunity to use technology to provide an inclusive environment between patients, caregivers, families, and healthcare providers. The Internet allows patients from all sociodemographics and geographical regions throughout the world to potentially connect, share stories, concerns, and offer support and advice. According to the US Census 2010, 80.2% of individuals have access to the Internet, with 70.2% of households having access to the Internet.6
Pulmonary hypertension (PH) is a devastating disease characterized by elevated mean pulmonary artery pressures, greater than 25 mm Hg, that leads to right heart failure.7 An estimated 20% of the US population has elevated pulmonary pressures indicative of PH that result in increased mortality.8 People with PH may experience dyspnea, fatigue, and peripheral edema.7 There are five PH classifcation groups (Table 1). Treatment regimens can be complex and costly. For example, treatments for PH group 1, also known as pulmonary arterial hypertension, include oxygen, diuretics, and anticoagulation along with calcium-channel blockers (eg, diltiazem), prostanoid analogs (eg, epoprostenol), endothelin receptor antagonists (eg, ambrisentan), and phosphodiesterase inhibitors (eg, sildenafil). Administration of prostanoid therapy may be inhaled or more commonly via continuous intravenous (IV) or subcutaneous (SC) infusions. The estimated annual cost for epoprostenol is $73 790,9 depending on individual dosages. Although insurance may cover costs, there may be a financial burden that affects people and their families.
There are no specific treatment regimens for PH group 2. Recommendations are to optimally treat the left heart disease. Recommendations of PH group 3 include long-term oxygen therapy and continuous positive airway pressure for those with PH due to obstructive sleep apnea.10 Treatment of PH group 4 includes lifelong anticoagulation therapy with vitamin K antagonists with a targeted international normalized ratio of 2.0 to 3.0. In PH group 5, there are disorders with unclear or multifactorial mechanisms; there are no specific treatment regimens for this group.7
Those with PH group 1 who use continuous IV or SC infusions may need assistance from their family members or caregivers with mixing the medications, changing catheter site dressings, and troubleshooting the pumps delivering the drug. For those using oxygen therapy, they may need assistance with managing the oxgyen therapy, including transporting the oxygen canisters. There is limited literature describing how caregivers are coping with caring for a family member with a chronic, life-threatening illness. In a study of 35 dyads of patients with PH group 1 and their caregivers, investigators found 14% (n = 5) of the caregivers were moderately to severely depressed.11 Caregivers were very involved with the care of those with PH, and they perceived their social support as low. People with PH and their caregivers may need more information on their disease and how to manage, but more research is needed to determine their concerns.
From an Internet, discussion board perspective, there is limited research on the needs and concerns of caregivers of patients with chronic illnesses or how they are using the Internet. A recent review found that caregivers were primarily using the Internet for information seeking or joining a support group.12 Table 2 contains a summary of studies included in the following literature review. One Norwegian study investigated how parents of children with a rare genetic disorder were using the Internet.13 Parents wanted to become knowledgeable about their child’s disease and how best to manage the condition. A study of an online support group found participants used the group to express encouragement, share personal experiences, and to discuss spiritual issues.14
An online support group for eating disorders found the primary function of the group was to encourage members and to provide information on diagnosis and treatment.15 Another study assessed concerns of patients and family members who have genetic disorders.16 They assessed concerns by analyzing messages posted on Web sites. There were three themes identified: medical concern, psychological concerns, and management concerns. Online support for cancer caregivers revealed three themes: hope, emotional rollercoaster, and physical, emotional, and psychological responses.17 The most common postings were statements of support and hope. Men caring for women with stroke found that they were dealing with role changes and the women’s depression.18 The caregivers fostered closer family relationships and reported being there for each other. Caregivers of people with Alzheimer’s disease used an Internet group to find and give information, share their experiences and opinions, and provide encouragement to others.19
Caregivers along with patients receive information from healthcare providers, but may seek information from other forums, including the Internet. There are noticeable gaps in the literature regarding the concerns of caregivers of people with PH. Only one study described depression and caregiver burden11; participants were not asked if they had other concerns or needs from healthcare providers. Therefore, the purpose of this study was to gain an understanding of how caregivers of people with PH are using an online discussion board. The chronicity and complex medical needs of people with PH warrant a holistic nursing approach combining the patient and caregiver concerns to adequately address their needs.
Approval for the study was given by the university institutional review board prior to data collection.
Sample and Setting
The Pulmonary Hypertension Association hosts an online discussion board (http://www.phassociation.net/PHABoards). The site has sections for patients and caregivers to post their messages and read other messages and/or responses. The discussion board was created in 2002 and remains open for people to view postings, post messages, and/or interact with others on the discussion board. Viewing the discussion board does not require registration. If participants would like to post messages or respond to other postings, then they must register. A convenience sample was used over an 18-month period, from May 2010 through November 2011. All participants self-identified as a caregiver for a person with PH. Patient postings or friends of patients with PH were excluded from the current study.
All discussion board postings were copied and pasted verbatim from the Web site from May 1, 2010, through November 30, 2011. Each post was given a unique identifier. Although many used pseudonyms or nicknames on the discussion board, no identifiers, such as names or dates of birth, were collected. Sociodemographics were collected if available, age and gender of the person with PH, and the relationship of the caregiver to the person with PH (eg, mother, father, sibling, spouse). Clinical variables collected were medications and oxygen use and years since diagnosis.
Demographic data were analyzed using SPSS 20 (IBM, Armonk, NY). Thematic analysis was used to analyze the Internet posts.20 Thematic analysis allows researchers to search through the data to identify patterns. Patterns are linked together to identify emerging themes.20 The Internet postings were read and reread by the investigators to identify common themes, frequently used words or phrases, and new topics (S.L., A.M., and L.A.M.). Themes can be feelings, beliefs, thoughts, or attitudes conveyed by the respondent. These themes were then entered into NVIVO (QSR International, Perth, Australia, Burlington, MA), a qualitative data management package to develop major categories. The identified themes aimed to depict the essence of the data.21,22 The researchers worked systematically to contextualize the text and develop categories to determine meanings and relationships.23 The categories were synthesized into the major themes based on their meanings. The categories were confirmed by the researchers for consistency of coding and interpretation. This process allowed for checks and balances when analyzing the data and identifying themes.
In order to achieve the integrity of the study design, rigor was achieved through established methods involving credibility, dependability, conformability, and transferability. Credibility of the data was confirmed through analysis of an 18-month period, which showed repetition of the concerns of caregivers of people with PH. Dependability was demonstrated through the prolonged analysis of the data over time along with the archived Internet posts available on the discussion board for confirmation. Conformability of the data was achieved by three investigators independently analyzing the data and then confirming the coding among investigators. Confirmation of the findings was established by maintaining an audit trail. Any discrepancies were discussed and agreed upon by the investigators. Transferability of the data is limited to caregivers of people with PH who used the online discussion board. As treatments evolve and change and life expectancy increases, so may the concerns of caregivers of people with PH.
Internet posts over an 18-month period revealed a total of 98 caregivers posted on the online discussion board. Table 3 summarizes the characteristics of the patients that caregivers were referring to in their posts. For the available demographics, 60% of the patients were female with a mean age of 16 years. The average length of diagnosis was 5.3 (SD, 2.4) years. Table 4 shows the relationship of the caregivers to the patient; the majority were mothers (46%) of people with PH.
Four themes emerged: fear and frustration, questions and concerns, someone to listen, and moving on with life. These themes characterize how caregivers of people with PH were using the online discussion board.
Fear and Frustration
For the caregivers of those with PH, telling their story was cathartic. It was like a weight being lifted off their shoulders knowing that there were others who had similar stories. One husband spoke about his wife’s PH diagnosis, “…my wife is pregnant, and the report says evidence of PH. We both are in shock.” The sense of fear, helplessness, and unknowing was evident in his writing. He was searching for answers from others as to why this happened and what would be next.
A daughter of a patient with PH told the story of her mother’s journey to diagnosis, “she started getting tired a while ago, probably 6 or 7 years ago… her diagnosis ran from heart failure to pneumonia… finally she was told she had PH….” Again a sense of fear was evident in her response as well as frustration over the countless physician visits before her mother was finally diagnosed. The frustration echoes through many of the caregivers’ stories as they try to understand what took so long to diagnose their loved ones. They wonder if there are other caregivers out there having the same experiences.
Another daughter of a patient from Europe talked about her father being diagnosed with PH 2 years previously. She was looking for others who had similar stories, as she stated “…we’re finding many people, and even the medical professionals know so little about it—it’s not like cancer that everyone’s heard of, and no one seems able to give us answers.” As caregivers connected with other caregivers and shared their stories and concerns, they were able to offer others help and guidance to alleviate some of their fears.
Questions and Concerns
Almost all of the caregivers on the discussion board voiced questions and concerns. Questions about medications and medication adverse effects were the most prevalent: “do you have stomach pain on epoprostenol?” Caregivers were trying to determine whether the adverse effects they were experiencing were truly adverse effects and not a sign of something worse, as this mother of a young child stated: “is this ‘hot’ feeling just adverse effects or could something be changing…?” A sense of camaraderie developed among the caregivers on the discussion board as they continued to seek answers.
Another major concern posed by many caregivers was about their loved ones’ diagnosis and prognosis. It was clear in their posts that many caregivers were confused about the diagnosis and almost uncertain as to whether to believe that their loved ones had a terminal illness: “is it a possibility that my child may grow out of it? If she is worsening, what other options do we have?” Others were concerned that their family members were receiving care from an appropriate provider and whether their physicians specialized in PH, as one husband stated about his wife: “Does my wife have the right doctor? …Not sure if he is a PH specialist….”
Someone to Listen
Many of the caregivers were seeking support and advice in the form of someone to listen to their story: “…I need some advice or maybe just an ear. I just don’t know what to do to help….” Caregivers spoke about their exasperation in trying to get answers to their questions from their healthcare providers: “I can’t seem to get answers from the doctors.” Some were dissatisfied with answers they received or were having difficulty believing the answers. They were looking to other caregivers to share their knowledge and advice and to somehow make it all feel better.
Others were clearly having difficulty accepting the truth about the diagnosis, and a sense of helplessness was palpable, as one mother stated: “…I am quietly going insane. I don’t understand how to handle this.” The outpouring of posts from other caregivers was truly heartfelt as many shared their stories and tried to comfort those in need. Spirituality was a sense of comfort for many of the caregivers as they offered prayers for loved ones and shared prayers with others: “PH symptoms are back with a vengeance… short of breath…. ICU’s a good place for him, I guess. Say a prayer.”
Moving on With Life
Moving on with life was a powerful theme heard through the caregiver posts as they used this strategy to focus on the positive and be supportive for their loved ones. Many tried to be optimistic and offer support for other caregivers who were just beginning their journey with PH. They expressed gratitude for the PH discussion board and how connecting with others helped them tremendously: “…I talk and think about… this Web site and how you all got me through (one of) the roughest times of our lives.”
Another caregiver who had lost his mother to PH revisited the site to speak about how many advances had been made over the years since his mother was diagnosed and wondered if anyone had talked with her: “My mother, sadly passed away from PH… I went to the hospital with her a lot. Now over 16 years later, I’m finding out that patients with primary PH (or now called idiopathic pulmonary arterial hypertension) are living longer and doing well, I can only wonder if any of you knew my mother, and if so, I pray that you are and will continue doing well!”
This is the first study to systematically analyze Internet postings of caregivers of people with PH on an online discussion board. This study provided a unique opportunity to investigate how caregivers used the discussion board. Four main themes were identified: fear and frustration, questions and concerns, someone to listen, and moving on with life. Pulmonary hypertension is a chronic illness that can produce severe symptoms such as shortness of breath and fatigue that can interfere with lives and cause disability.24–28 Patients may need assistance with activities of daily living and their treatment regimens. Because of the complexity of the disease, holistically, caregivers need to be considered when caring for those with PH. This study demonstrates that caregivers are concerned about their loved ones, have many questions about PH, and need support.
Fear and frustration were evident in many of the posts in this study. Gundersen13 found similar results in a study of parents using the Internet as a way to cope when confronted with a “major stressor life event.” He also noted frustration in the parents when they were confronted with the news of a child’s disorder. Those posting to the discussion board often voiced their frustration about not receiving answers or adequate explanations from their healthcare providers, although many would praise the care they were receiving and credited physicians with the improvement in their loved ones’ symptoms and longevity.
Our study revealed many caregivers had questions and concerns about their loved ones. They used the Internet as a source of information and an avenue to answer their questions. Kinnane and Milne12 found caregivers of people with cancer used the Internet primarily to solve problems, although they preferred to receive their medical information from healthcare providers. Our study found caregivers used the Internet to find answers to their questions. They frequently had questions about medications, especially adverse effects, procedures, symptoms of PH, medical procedures, and the trajectory of their loved ones’ disease. This was similar to the online support for eating disorders.15,29 Our themes were also similar to the findings in South Korea, where family members had medical concerns, psychosocial concerns, and management concerns.16 Our study revealed caregivers had medical concerns regarding treatment, symptoms, and adverse effects of medications. They also were seeking and giving support on the Web site.
Many used the PH discussion board as a place for someone to listen to them. Parents of children with PH in our study used the Internet as a way to cope. One mother described her experience as so horrific that she was going “insane” and did not know what to do. Some would provide support and prayer for others on the discussion board, whereas others would ask for prayer. This was similar to the online support group for hospice; the majority of interactions were for emotional support including encouragement with fewer who were seeking information.14
Another Internet Web site revealed caregivers of cancer patients posted messages of hope, yet they felt like they were on an emotional rollercoaster and were experiencing psychological distress.17 They just wanted someone to hear their stories. Our study found that caregivers were shocked by the PH diagnosis and scared for their loved ones. Some were fortunate to have loved ones who were doing well and responding to treatment and would periodically post updates. Several men posted on the discussion board regarding caring for their wives who had PH and that they were looking for answers to their questions. Similarly, another study found men who were caring for their wives after a stroke were experiencing depression and irritability,18 yet they felt like the Web site gave them the opportunity to become closer to their wives and other family members. A group of caregivers of people with Alzheimer’s disease used the Internet to share experiences and opinions. This was similar to our study, where caregivers shared their stories and asked others if they had similar experiences.
Moving on with life was another common theme we found. Those on the discussion board talked about staying positive and how the Web site supported them. One son returned to the discussion board years after his mother died to follow up and offer a message to those with PH. Another study showed social support offered by the Internet was associated with better psychological adjustment for recently bereaved individuals.30 The Internet offered a way to help them move on with their life after losing a loved one. Perhaps using the Internet for caregivers of those with PH also offers better adjustment after their loved one die. More research is needed to explore this.
In order to care for these patients holistically, it is important to incorporate the biopsychosociospiritual well-being of individuals and their families. The Internet provides an opportunity for caregivers to incorporate the Internet for information and interact with others who are going through the same experience. This study allowed us to see a glimpse of what these caregivers are experiencing and how nursing can potentially alleviate their concerns and provide better support for them. This study provides preliminary data; however, more research is needed to further elaborate on the needs and concerns of caregivers. Further research determining if there are differences in concerns of caregivers is needed; for example, are the concerns of a mother or father of a child with PH different than a husband whose wife has PH? With further research, the Internet and discussion board may be a prime intervention that can be widely employed to assist caregivers of people with PH to provide holistic care. The son who reached out 16 years after his mother’s death shows that caregivers are affected by PH long after their loved one dies. Follow-up with caregivers beyond their loved ones’ death may be important for their well-being.
There are several limitations to this study. Only those caregivers who have Internet access are able to read, post, and respond to the discussion board. There were several comments that caregivers had just “stumbled” upon the discussion board, making this site available to those who either find the site or are made aware that the site exists. The investigators did not engage those on the discussion board; they only observed the postings. Therefore, no clarification of the comments or more in-depth inquiry was performed. The sociodemographics are limited to those that were posted on the site; therefore, we have only that which the caregiver posted, and this limits the transferability of these results.
People with PH are living with a life-limiting, complex disease. Providing optimal care to these patients requires inclusion of the caregivers. Caregivers may be ill equipped to care for their loved one because of lack of knowledge or psychological stress. This is the first study investigating how caregivers of PH are using an online discussion board. Results from analyzing the online postings revealed four themes: fear and frustration, questions and concerns, someone to listen to, and moving on with life.
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