The literature on the experiences of patients living with a CVAD suggests that the devices are accepted by patients, 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). Despite these claims, 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 in 2017 by L.Kelly, A. Snowden, R.Patterson and K.Campbell. 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).

PARTICIPANTS

Participants were purposively sampled for their experience of CVADs. Participants were recruited from two closed Facebook groups ‘PICC Line Club 2.0’and ‘IVs, Ports & PICCs & trades for PoTS’.

ETHICAL CONSIDERATIONS

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.

INCLUSION / EXCLUSION CRITERIA

An inclusion / exclusion criterion was developed (Table One). If the participants met the criteria, they were invited to participate in the study.

ETHICAL CONSIDERATIONS

If they chose to participate, the participants were directed to a link which took them to a patient information sheet. Members were advised that there was no obligation to complete the survey. Those who decided to continue where firstly directed to a consent form. To reassure participants, a link to a privacy notice was provided. Once participants had agreed to the consent statements, they began the survey by clicking a link to the survey data base. Both the system and the virtual private network were password protected. No personal data was collected and therefore it was unlikely that anyone could have been identified by their responses to the questionnaires. The questionnaire was devised using the themes that had been elicited from the PhD study. The first questions collected demographical information, then asked about the device the respondent was living with. The remaining questions related to the objectives of the initial study.

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 One). The majority had a totally implanted port (Table Two), and 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 is reported when citing respondents.

QUESTIONS AND RESPONSES FROM PARTICIPANTS

Question One: Interviewed patients held vivid memories of painful, repeated and frequent access of their peripheral veins access device inserted. Is this something that you can relate to?

All except one responded to this question and only six people said no. Over 90% held vivid memories of painful, repeated and frequent access of their peripheral veins before they got their long-term vascular access device inserted. Thirty-two participants added detail to their responses and below are some 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.’ (Non-US, 40-51 years)
• ‘I have post-traumatic stress disorder (PTSD) from this.’ (US, 21-30 years)
• ‘Has caused medical PTSD.’ (US, 18-20 years)
• ‘Doctors see you as a challenge when you say you have no veins’(US, 18-20 years)
• ‘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” ’. (Non-US, 21-30 years)

Question Two: Interviewed patients 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 said yes (n=46) two people said this had happened once, 17 said between two and five times (including one participant who had said ‘no’ to the main question), and the majority (n=28) reported more than six times. Twenty-four participants also made further comments, for example:

• ‘…had to teach everyone who thought about touching my line-how to protect it. (US, 41-50 years)
• ‘Out of 52 weeks last year my own home health nurses sent me to the ER 32 times because they were not trained properly.’ (US, 31-40 years)
• ‘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.’(Non-US, 31-40 years)
• ‘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.’ Non-US, 41-50 years)

Question Three: Interviewed patients 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 very painful swollen hand.’(Non-US, 41-50 years)
• ‘I preferred them to do a peripheral vein access because I was afraid they would do something wrong and I would get an infection.’(US, 18-20 years)
• ‘It is not that they are unfamiliar with it, they don’t WANT to use it.’ (US, 31-40 years)
• ‘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.’ (Non-US, 41-50 years).

This study demonstrated that although patients accept having long term vascular access devices, 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 therefore support and strengthen the IPA study findings and demonstrate consistency of patients experience with CVADs across an international sample.

RECOMMENDATIONS FOR PRACTICE

To improve the patients experience 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).

REFERENCES

Alpenberg, S., Joelsson, G. and Rosengren, K. (2015) ‘Feeling Confident in Using PICC Lines: Patients’ Experiences of Living With a PICC Line During Chemotherapy Treatment’, Home Health Care Management and Practice, 27(3), pp. 119–125.

Kelly LJ. The experience of patients living with a vascular access device. British Journal of Nursing. 2017: 26 (19): S36. https://doi.org/10.12968/bjon.2017.26.19.S36

Kelly LJ, Green A, Hainey K. Implementing a new teaching and learning strategy for CVAD care. British Journal of Nursing. 2015: 24 (8): S4–S12. https://doi.org/10.12968/bjon.2015.24.Sup8.S4

Parás-Bravo P, Paz-Zulueta M, Santibañez M et al. Living with a peripherally inserted central catheter: the perspective of cancer outpatients—a qualitative study. Support Care Cancer. 2018: 26 (2):441–449. https://doi.org/10.1007/s00520-017-3815-4

Sharp R, Grech C, Fielder A, Mikocka-Walus A, Cummings M, Esterman A. The patient experience of a peripherally inserted central catheter (PICC): A qualitative descriptive study. Contemporary Nurse. 2014: 48 (1):26–35. https://doi.org/10.5172/conu.2014.48.1.26

Song C, Oh H. Burn patients’ experience of peripherally inserted central catheter insertion: analysis of focus group interviews from a South Korean burn center. Burns. 2016: 42 (7):1439–1444. https://doi.org/10.1016/j.burns.2016.04.006

Yamada R, Morita T, Yashiro E et al. Patient-reported usefulness of peripherally inserted central venous catheters in terminally ill cancer patients. J Pain Symptom Manage. 2010: 40 (1):60–66. https://doi.org/10.1016/j.jpainsymman.2009.11.327