Central venous access devices (CVADs) are necessary for the delivery of intravenous (IV) therapies, which can be damaging to the inner layer (intima) of small peripheral veins (Al-Benna et al, 2013). Technological advances have resulted in the following main long-term CVADs in use: peripherally inserted central catheters (PICCs); non–cuffed central venous catheters; tunnelled (cuffed) central venous catheters (TCVCs), which are external devices, and totally implanted vascular access devices (TIVADs), which are implanted under the skin. Depending on the type of treatment being administered, patients can have these devices in place for between few months and many years.
Literature on the clinical advantages and disadvantages of CVADs is plentiful. However, it remains largely technically focused (Simonov et al, 2015; Bodenham, 2016; Voog et al, 2018). The literature on the experiences of patients living with a CVAD suggests that the devices are accepted, with the main attraction being a reduction of repeated painful cannulation (Yamada et al, 2010; Sharp et al, 2014; Alpenberg et al, 2015; Song and Oh, 2016; Parás-Bravo et al, 2018). It is acknowledged, however, that one of the main advantages of central venous access is to preserve the health of veins and prevent damage from vesicant and irritant medications. A recent doctoral study revealed that even when a device was inserted, it did not necessarily prevent challenging cannulation attempts.
With the aim of exploring the lived experience of patients with each of these devices, an interpretive phenomenological analysis (IPA) study was conducted (Kelly, 2017). This study found that even after the insertion of a long-term vascular access device, patients recalled vivid memories of pain, distress and anxiety experienced during the procedure of peripheral venous access. Once the device was inserted, patients got used to having a CVAD in situ, regardless of type. They largely forgot it was there, and the device became embodied as part of them. However, most patients experienced instances when doctors and nurses lacked the knowledge of how to use their device. Variations in practice and lack of competence of the health professionals left patients bewildered and dismayed. Clinician uncertainty resulted in peripheral veins being accessed once more, resulting in a ‘return to violation’ of cannulation (Kelly, 2017).
The findings from this study resonated with colleagues' experience at a number of conference presentations, including those held by the National Infusion and Vascular Access Society (NIVAS), World Congress for Vascular Access (WoCoVA), Association for Vascular Access (AVA), and the IV forum of the Infection Prevention Society (IPS). A survey was subsequently designed to further explore whether the findings were a global phenomenon affecting patients with different disease processes.
Aim
The aim of the study was to establish the transferability of the findings of the IPA study. The main objectives were to establish whether the following experiences were generalisable:
Methods
Participants
Participants were purposively sampled for their experience of CVADs. The use of specific inclusion/exclusion criteria ensured that patients were appropriately selected (Table 1). Participants were recruited from two closed Facebook groups. The first Facebook group, ‘PICC Line Club 2.0’, is recorded as having 1400 members. Although set up specifically for people with PICC lines, membership now covers people with a range of devices for various treatments. The second group, ‘IVs, Ports & PICCs & trades for PoTS’, records having 2000 members. This group was set up initially for members to trade (give away or sell) personal surplus IV products. Both groups are now used for general discussions and support for people with a range of devices and conditions. Although there are over 3000 members across the groups, many members were involved in both and some were no longer active.
| Inclusion criteria | Exclusion criteria |
|---|---|
| Adults aged 18 or over | Children under the age of 18 years |
| Currently has a PICC, TCVC or TIVAD in place | Inability to read the English language |
| Has had a PICC, TCVC or TIVAD in place within the past 3 months | Patients without the capacity to provide consent |
| Device in place for any type of treatment | |
| Patients with the capacity to provide consent |
PICC: peripherally inserted central catheter; TCVC: tunnelled central venous catheter; TIVAD: totally implanted vascular access device
Postural orthostatic tachycardia syndrome (PoTS) is a dysfunction of the autonomic nervous system that primarily affects heart rate and blood pressure. The abnormal increase in heart rate happens after sitting or standing up. Typically, the sufferer experiences dizziness, fainting and other symptoms (Low, 2014). Other members of the group have myalgic encephalomyelitis (chronic fatigue syndrome) (ME/CFS), fibromyalgia, Ehlers-Danlos syndrome (EDS) (a group of genetic connective tissue disorders) and medium-chain-acyl-CoA dehydrogenase (MCAD) deficiency. These syndromes are often treated with IV fluid administration, hence the requirement for long-term venous access.
Ethical considerations
The changing nature of technology and recent use of social media in healthcare research can raise ethical issues (Turculet, 2014). The dramatic growth of social media such as Twitter and Facebook are being used more frequently by patients and health professionals to disseminate information as well as for research purposes (McKee, 2013). Moreover, through the use of social media, patients with similar conditions can act as mutual support for each other. Despite the public nature of social media, concerns about privacy and anonymity remain the same as with traditional research and therefore ethical rigour was ensured.
Ethical approval was sought and granted from the Edinburgh Napier University School of Health and Social Care Ethics Committee in January 2019 (SHSC18011). Permission was also granted by the administrators of each Facebook group. Following ethical approval, an introductory post was uploaded to each Facebook site. The post contained information on the study aims, objectives and purpose. If they met the inclusion criteria, group members were invited to participate in the study. If they chose to participate, they were directed to a link that took them to a patient information sheet. To reassure participants, a link to a privacy notice was provided. Members were advised that there was no obligation to complete the survey. Those who decided to continue were directed to a consent form. Once participants had agreed to the consent statements they began the survey by clicking a link to the Novi database.
NOVI database
This system is hosted by Edinburgh Napier University. The database is accessible only by the principal investigator and is double password protected—both the system and the virtual private network needed to access the software requires a password. Therefore, all data collected was securely stored. No personal data was collected and therefore it was unlikely that anyone could be identified by their responses.
Questionnaire
The questionnaire was devised by the lead author using the themes that had been elicited from the doctoral study (Kelly, 2017). It consisted of drop-down menus for all questions plus the option of free text, where appropriate. The first questions collected demographical information, then asked about the device the respondent was living with. The main questions related to the objectives of the study (Kelly, 2017). The survey was available on the Facebook sites for 1 month, with reminders posted weekly.
Results
Seventy-four people responded to the survey. All but two were female, with one male and one not declaring gender. The majority were 21 to 40 years old, with 55% having had their device for more than 6 months (Figure 1). The majority had a totally implanted port (Table 2); most respondents were from the US (n=62), with the remainder from the Netherlands (n=2), Canada (n=1), England (n=3), UK (n=3), Spain (n=1), Norway (n=1) and New Zealand (n=1). To maintain anonymity, only country (US or non-US) and age range are reported when citing respondents.
| Peripherally inserted central catheter (PICC) | 19 |
| Totally implanted port (port, portacath, implanted port) | 45 |
| Tunnelled catheter (Hickman type, Broviac type) | 10 |
Question 1
Patients in my PhD study held vivid memories of painful, repeated and frequent access of their peripheral veins before they got their long-term vascular access device inserted. Is this something that you can relate to?
All except one responded to this question and only 6 people said ‘no’. Over 90% held vivid memories of painful, repeated and frequent access of their peripheral veins before their long-term vascular access device was inserted.
Thirty-two participants added detail to their responses and below is a sample:
‘Approximately 30 cannulas over a period of 3 weeks prior to PICC line insertion. Cannulas included in feet and knees when arm/hand veins were exhausted.’
‘I have post-traumatic stress disorder (PTSD) from this.’
‘Has caused medical PTSD.’
‘Doctors see you as a challenge when you say you have no veins. I've had needles stuck in my shins, my toes, my wrists and often hospital staff carry on trying long after I've said … “enough”’.
Question 2
Patients in my PhD study described times that nurses, or doctors were unable to use their device because they were unfamiliar with it. Is this something that has happened to you?
All (n=74) responded to this question and 28 said ‘no’. Of those who responded ‘yes(n=46), 2 people said this had happened once, 17 between 2 and 5 times (including one participant who had said ‘no’ to the main question), and the majority (n=28) reported more than 6 times. Twenty-four participants also made further comments, for example:
‘… had to teach everyone who thought about touching my line-how to protect it.’
‘Out of 52 weeks last year my own home health nurses sent me to the ER 32 times because they were not trained properly.’
‘I've learnt how to take blood, change dressings and to administer drugs as staff blocked my line and didn't use aseptic technique. It was safer for me to learn.’
‘I've managed to get a port-trained nurse eventually but have sometimes had to wait unnecessarily especially in emergency department for pain relief, fluids and anti-emetics.’
Question 3
Patients in my PhD study reported having to have their peripheral veins accessed because doctors and nurses were unfamiliar with the device. Is this something that has happened to you?
All (n=74) responded to this question and 30 said ‘no’, with the majority (n=44) agreeing.
‘During general anaesthetic, the anaesthetist refused to use the PICC—instead cannulating in [a] very painful swollen hand.’
‘I preferred them to do a peripheral vein access because I was afraid they would do something wrong and I would get an infection.’
‘It is not that they are unfamiliar with it, they don't WANT to use it.’
‘Only twice has this happened because they wanted my blood cultured due to sepsis and couldn't wait. I demand they use my port for the most part.’
Discussion
Distress caused by peripheral cannulation
The results support the original doctoral finding that painful, repeated and frequent access of peripheral veins is experienced by patients with CVADs, both before and after having the device inserted. The results also align with some of the existing literature on the patient experience of living with a vascular access device (Ritchie et al, 2015; Song and Oh, 2016; Sharp, 2014; Källenius et al, 2016). In these studies, participants experienced episodes of repeated peripheral cannulation prior to having a long-term device, which they found distressing. For example, the patients in the study by Song and Oh (2016) described becoming tired and stressed with the repeated cannulation procedures, which were described as a significant cause of distress. In some case more than 10 attempts were reported before successful access was obtained (Sharp, 2014). Two participants in the present study described cannulation as traumatic, in suggesting they had PTSD. These powerful statements suggest that the patients have suffered very stressful, traumatic, frightening or distressing cannulation attempts.
As reported by Sharp (2014), there was repeated evidence of patients' wishes being ignored, with one describing clinicians carrying on and attempting cannulation ‘long after [the patient had said] “enough”’. According to Bond et al (2016) the reasons for this could be that the cannulation procedure is given low priority and the pain of cannulation is underestimated by health professionals (Bond et al, 2016). It is difficult to imagine any other context, outside health, where it would be deemed acceptable to continue causing considerable pain to someone despite them asking for it to stop. At best, this could be seen as an example of what Stratta et al (2016) termed ‘empathy erosion’. At worst, it is common assault. The authors suggest that health professionals should be honest with patients about the pain of the procedure of peripheral cannulation and encourage them to communicate during the process. It should be made acceptable for patients to voice their discomfort or distress and for them to be listened to.
The term difficult intravenous access (DIVA) has recently been used to describe patients with veins that are non-palpable and non-visible, resulting in challenging cannulation attempts (Yen et al, 2008; Riker et al, 2011; O'Neill, et al, 2012; Sou et al, 2017). Protocols have been developed to make the vascular access journeys of these patients easier and less traumatic (Carr et al, 2018; van Loon et al, 2016; Pagnutti et al, 2016). The availability of DIVA tools could reduce the preventable traumatic experiences seen in Sou et al's study (2017). In addition, there are many techniques available that would reduce the pain of cannulation. These include the use of topical or local anaesthesia, vein visualisation technology and ultrasound guidance (Kelly, 2013). At present it appears that these are not routinely used although they have been shown to improve cannulation success rates (Bahl et al, 2016).
Health professional incompetence
Like the participants in the original study (Kelly, 2017), many respondents to the present study agreed that they had been bewildered by finding out that many doctors and nurses could not use their devices. Of those who stated that the professional could use them, a further proportion reported that they did not seem to use an aseptic technique, thereby putting participants at serious risk of infection. Patients with CVADs are often aware of the potential complications of catheter-related bloodstream infections (CRBSIs) and subsequently live with this fear during the time the device is in situ (Ritchie et al, 2015).
Ritchie et al, (2015) showed that patients took a ‘defensive stance’ when health professionals working with their devices appeared incompetent. This was done as an act of self-preservation, with patients fearing that their device might become infected because of the actions of the health professionals. Similar findings were discovered in a study by Alpenberg et al (2015). Patients in this study described feelings of insecurity and concern about potential complications resulting from the incompetence of staff caring for their devices. Mutti et al (2016) also highlighted the lack of competence in staff managing TIVADs.
For some patients this may have been the first time that trust in doctors and nurses was lost. Hall et al (2001: 615) characterised trust as ‘the optimistic acceptance of a vulnerable situation in which the trustor believes the trustee will care for their interest’. Rolfe (2014) added that trust is fundamental to doctor–patient relationships and Guffey and Yang (2012) showed that patients who trust their health professional experience greater satisfaction with their treatment.
Respondents in the present study experienced the opposite of this, which led many of them to take matters into their own hands. To prevent anyone else from touching their device they learnt to manage the device themselves. On the positive side, engendering personal accountability and ownership of health issues is entirely coherent with the current policy drive towards self-care and management (Calderwood, 2017). However, this agenda presumes partnership, collaboration and trust, not self-preservation born of necessity.
Recommendations for practice
To improve the experiences of patients with CVADs, care and maintenance training should be mandatory and introduced into nursing and medical staff education programmes. Vascular access care and maintenance training and education in the form of dedicated theoretical and practical workshops can improve the confidence and competence of staff (Kelly et al, 2015). This is further evidenced when coupled with an eLearning element (Hainey et al, 2017). It is acknowledged that not all health professionals may be able to maintain competence and therefore the development of dedicated vascular access champions for clinical areas could also be considered.
The introduction of vascular access specialist teams for both device insertion and maintenance could also improve the experiences of patients living with a CVAD (Carr et al, 2018). Herring (2017) suggests that healthcare facilities should consider setting up dedicated specialist vascular access teams to insert, maintain and care for VADs. This strategy could potentially increase patient safety and reduce CRBSIs. In fact, Johnson et al (2017) reported a decrease in expenses and increased efficiency, quality of care, patient satisfaction, and improved patient outcomes when specialist registered respiratory therapist and line teams where employed to maintain VADs.
Finally, empowering patients to self-care should be encouraged. According to Møller and Adamsen (2010), self-care of CVADs increases patients' independence and supports perceived self-efficiency and control.
Limitations
This was a small, self-selecting sample of participants. We had hoped for more responses, given that there were thousands of members on the online forums. However, of those who responded, the majority agreed with the findings of the original study. A related issue was that the majority of the respondents were from the US, a society known to be more litigious and therefore perhaps more likely to self-manage. However, although the non-US sample was smaller (n=21), again there was consistency of response.
Conclusion
Previous literature suggested that participants accept having a CVAD, with the main attraction being a reduction in repeated painful cannulations (Sharp et al, 2014; Alpenberg et al, 2015; Song and Oh, 2016; Parás-Bravo et al, 2018). However, this study found the opposite to be the norm. Although patients accepted having such a device, it showed that painful, repeated attempts at cannulation persisted, despite possession of a device designed to help reduce it. It showed that the majority experienced a degree of health professional incompetence, which led many to take matters into their own hands to prevent device complications. The findings of this study support and strengthen the original findings (Kelly, 2017) which found that:
Therefore, this current study demonstrates consistency of experience across an international sample of patients living with CVADs.