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Learn more: PMC Disclaimer | PMC Copyright Notice J Adv Nurs . 2025 Aug 19;82(5):5348–5358. doi: 10.1111/jan.70146 Search in PMC Search in PubMed View in NLM Catalog Add to search ‘Living Well With a PICC at Home’: Co‐Design and Evaluation of a Peripherally Inserted Central Catheter (PICC) Booklet Rebecca Sharp Rebecca Sharp 1 Clinical and Health Sciences/Rosemary Bryant AO Research Centre, University of South Australia, Adelaide, Australia Find articles by Rebecca Sharp 1, ✉ , Qunyan Xu Qunyan Xu 2 Clinical and Health Sciences, University of South Australia, Adelaide, Australia Find articles by Qunyan Xu 2 , Robyn Pumpa Robyn Pumpa 3 Infectious Diseases Infusion Clinic, Royal Adelaide Hospital, Central Adelaide Local Health Network, Adelaide, Australia Find articles by Robyn Pumpa 3 , Nadia Corsini Nadia Corsini 1 Clinical and Health Sciences/Rosemary Bryant AO Research Centre, University of South Australia, Adelaide, Australia Find articles by Nadia Corsini 1 , Julie Marker Julie Marker 4 Cancer Voices South Australia, Adelaide, Australia Find articles by Julie Marker 4 , Jodie Altschwager Jodie Altschwager 5 Metropolitan Referral Unit, SA Health, Adelaide, Australia Find articles by Jodie Altschwager 5 , Alanna Ortmann Alanna Ortmann 5 Metropolitan Referral Unit, SA Health, Adelaide, Australia Find articles by Alanna Ortmann 5 , Lisa Turner Lisa Turner 6 Service Optimisation and Clinical Workflows, Silver Chain, Adelaide, Australia Find articles by Lisa Turner 6 , Lili Jin Lili Jin 7 PICC Insertion, South Australia Medical Imaging (SAMI)/Royal Adelaide Hospital, Central Adelaide Local Health Network, Adelaide, Australia Find articles by Lili Jin 7 , Amanda Ullman Amanda Ullman 8 The University of Queensland, School of Nursing and Midwifery/Children's Health Queensland, Brisbane, Australia Find articles by Amanda Ullman 8 , Adrian Esterman Adrian Esterman 9 Biostatistics and Epidemiology, University of South Australia, Allied Health & Human Performance, Adelaide, Australia Find articles by Adrian Esterman 9 Author information Article notes Copyright and License information 1 Clinical and Health Sciences/Rosemary Bryant AO Research Centre, University of South Australia, Adelaide, Australia 2 Clinical and Health Sciences, University of South Australia, Adelaide, Australia 3 Infectious Diseases Infusion Clinic, Royal Adelaide Hospital, Central Adelaide Local Health Network, Adelaide, Australia 4 Cancer Voices South Australia, Adelaide, Australia 5 Metropolitan Referral Unit, SA Health, Adelaide, Australia 6 Service Optimisation and Clinical Workflows, Silver Chain, Adelaide, Australia 7 PICC Insertion, South Australia Medical Imaging (SAMI)/Royal Adelaide Hospital, Central Adelaide Local Health Network, Adelaide, Australia 8 The University of Queensland, School of Nursing and Midwifery/Children's Health Queensland, Brisbane, Australia 9 Biostatistics and Epidemiology, University of South Australia, Allied Health & Human Performance, Adelaide, Australia * Correspondence: Rebecca Sharp ( [email protected] ) ✉ Corresponding author. Revised 2025 Jul 25; Received 2025 Mar 6; Accepted 2025 Aug 5; Issue date 2026 May. © 2025 The Author(s). Journal of Advanced Nursing published by John Wiley & Sons Ltd. This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made. PMC Copyright notice PMCID: PMC13069209 PMID: 40831049 ABSTRACT Aim To co‐design an information booklet to support adults living with a peripherally inserted central catheter (PICC) at home. Design A sequential, mixed‐method approach using Boyd's co‐design framework. Method A diverse project team led co‐design of a PICC booklet based on preferences and PICC management strategies identified through content analysis of interviews with 15 Australian health consumers (January 2022–March 2023) using a qualitative descriptive approach. A draft booklet was developed, reviewed by the team and prototyped, which was evaluated by consumer participants and an external nurse panel, with readability assessed using Flesch Reading Ease and Flesch–Kincaid scores. The project team reviewed feedback, reached consensus on changes and collaborated with designers to produce the final booklet. Results Consumer participant strategies were classified into four categories: enhancing coping, taking responsibility and understanding information, modifying life and accessing supports. Two pre‐determined categories were included (participant recommendations for PICC education resource content and top tips for living with a PICC). The prototype was evaluated as highly relevant (3.9/4), comprehensive (3.8/4) with an appropriate writing style and visual appeal. Readability scores were 76.1/100 (Flesch Reading Ease) and 6.9 (Flesch–Kincaid grade level). The final booklet contained 13 sections. Conclusion A co‐design approach successfully created a novel PICC information booklet with positive evaluations. Implications Provides understanding of consumer information preferences to inform PICC education and offers insight into consumer‐developed strategies and knowledge for living with a PICC. Impact A co‐designed PICC information booklet based on consumer knowledge may augment nursing education for people living with a PICC to improve outcomes. Reporting Method The qualitative component follows the EQUATOR network COREQ guideline. A co‐design research reporting standard is not available. Patient or Public Contribution A consumer representative was a member of the project team and contributed to study design, interpretation of findings and development of the booklet and manuscript. Keywords: cancer, co‐design, health consumer information preferences, health consumer knowledge, health consumers, home treatment, infection, peripherally inserted central catheter, self‐efficacy Summary. What does this paper contribute to the wider global clinical community? ○ PICCs are a common vascular access device internationally; this paper describes health consumer information preferences to inform nursing education and support. ○ This paper explains a co‐design process used to develop a novel health information resource that may be replicated in other groups to meet the needs of health consumers. 1. Introduction Community intravenous treatment at an outpatient infusion clinic or in the home is increasingly common to facilitate hospital avoidance and early discharge. Peripherally inserted central catheters (PICCs) are often inserted for adults under this model of care for the treatment of health conditions such as infection and cancer. Living with a PICC at home has a significant impact on daily life and the adaptation of usual tasks is challenging for many consumers living with a PICC (Sharp et al. 2014 ; Parás‐Bravo et al. 2018 ; Berrevoets et al. 2018 ; Molloy et al. 2008 ). Ordinary tasks such as showering require modifications to prevent serious complications (e.g., infection). Health consumers, many with variable health literacy, report difficulty comprehending and retaining the often complex information provided and do not always seek clarification when the information is not understood (Sharp et al. 2014 ; Molloy et al. 2008 ). This is especially concerning due to high complication rates (6%–25%) such as occlusion that occur in this setting, which individuals are often required to identify and escalate independently (Cotogni et al. 2015 ; Bertoglio et al. 2016 ; Kang et al. 2017 ; Marsh et al. 2020 ; Sriskandarajah et al. 2020 ). Typically, individuals with a PICC are provided with written and verbal information prior to PICC insertion. Understandably, written PICC information focuses on clinical concepts such as identifying and responding to PICC complications. Health consumers report that the information is ‘too technical’, difficult to understand and lacks practical content to support adaptation at home (Sharp et al. 2014 ). Individuals are often provided education about covering the PICC in the shower at home to keep the dressing dry but may not be provided with education about how to modify other aspects of life. Despite the modifications required by individuals to live with a PICC, they may receive minimal practical resources to support adaptation. Adults with a PICC have called for practical information to be provided to support adaptation in addition to the important information provided about PICC care and preventing and responding to complications (Parás‐Bravo et al. 2018 ). There is little research that has examined the development of education resources for individuals living with a PICC. Most research about health consumer education has aimed to increase understanding about PICC insertion to aid the consent process, or to improve the identification of PICC complications and communication with healthcare professionals (Li et al. 2020 ; Ullman, Gibson, et al. 2024 ; Ullman, Larsen, et al. 2024 ). Some research has reported the development and evaluation of practical education for consumers living with central venous access devices, including PICCs at home, but the focus was on the development of skills in self‐administering intravenous antibiotics (Keller et al. 2022 ). While the intervention included practical education (written and video) to support showering with the device, it appeared that the research team decided on the content of the resource rather than ask consumers about their preferences for the content of the education package or use a collaborative approach to incorporate consumer‐developed knowledge (Keller et al. 2022 ). Most education resources for individuals with a PICC or other central venous access devices (CVADs) are developed by clinicians and do not incorporate consumer preferences for information (Li et al. 2020 ). Despite the clear need for appropriate PICC education to meet the needs of people self‐managing these devices at home, existing resources are not consumer focused. There is a lack of resources available that have been designed in collaboration with consumers to ensure they meet their needs. A co‐design approach may improve the relevance of the information provided to health consumers, thereby improving acceptance and uptake of resources (Grynne et al. 2021 ). In response to these issues, a collaborative project team was established comprising a diverse group of nurses, researchers and a health consumer representative to improve support for people living with a PICC at home. The initial phase of this project identified the supportive care needs of adults with a PICC to provide clinicians with a framework for assessing and targeting consumer needs (Sharp et al. 2024 ). Participants described supportive care needs across eight domains: adapting daily life, physical comfort, self‐management, emotional impact, information content, understanding information, healthcare resources and social supports (Sharp et al. 2024 ). Many participants described unmet information needs regarding both the content of PICC education and their comprehension of the information. Information was primarily verbal and focused on procedural risks and complications. While recognising this information's importance, participants required additional clinical information about PICC insertion, complications beyond infection (such as dislodgement), self‐assessment techniques and decision‐making guidance when complications arise at home. Existing PICC information provided sparse practical content and participants required further guidance including showering adaptation. Comprehension of information varied, with medical terminology and verbal delivery reducing understanding. These information gaps occurred alongside marked anxiety for some participants who, while receiving treatment for complex conditions (e.g., cancer, bone infections), reported fear of PICC complications and living with a medical device positioned ‘near the heart’ (Sharp et al. 2024 ). The current paper describes the second phase of the project, the development of a PICC information resource. The aim of this phase of the project was to co‐design a practical PICC information booklet with experienced health consumers and specialist nurses to enhance support for adults living with a PICC at home. Emphasis was placed on acknowledging the expertise of people with lived experience of a PICC. 2. Method 2.1. Design A sequential, mixed‐method approach was employed to co‐design a PICC information booklet. A collaborative co‐design approach was used as an overarching framework for this project, underpinned by empowerment and narrative theory principles (Fisher 1984 ; Perkins and Zimmerman 1995 ; Greenhalgh et al. 2016 ). Co‐design involves the involvement of end‐users during the research process and promotes empowerment through collaborative knowledge development (Perkins and Zimmerman 1995 ). This approach values consumer experiences and knowledge alongside clinical expertise (Coldham 2018 ). Narrative theory informed the booklet design, based on the understanding that humans process and retain information more effectively when presented narratively (Dudley et al. 2023 ). Health information in narrative form has proved to be more effective than didactic methods across contexts from cancer screening to medication adherence (Dudley et al. 2023 ). Development of the PICC information resource followed Boyd's six co‐design steps: engaging, planning, exploring, developing, deciding and changing (Figure 1 ) (Boyd et al. 2010 ). A project team of researchers, clinical stakeholders and a consumer representative was formed (engaging, planning). Qualitative interviews with consumer participants identified management strategies and resource preferences (engaging, exploring). The team used these findings to create a storyboard and draft script, reviewed by all members with revisions discussed collectively (developing, deciding, changing). A professional design company created a prototype resource. Feedback was obtained from consumer participants and an external panel of specialist nurses through interviews/surveys (deciding). The project team reviewed feedback, reached consensus on changes, and collaborated with the design company to produce the final resource (changing). FIGURE 1. Open in a new tab Co‐design process used to develop the ‘Living well with a PICC at home’ information booklet. 2.2. Project Team Formation The lead author (RS), an experienced researcher in the consumer experience of a PICC and other vascular access devices, established a project team to co‐design a PICC information booklet. Team members were purposively selected to ensure that stakeholders across the various clinical settings that support people living with a PICC and a consumer representative were included. Team members discussed the project aims and proposed plan in individual or group meetings. 2.3. Qualitative Interviews Qualitative interviews with health consumers living with a PICC identified their adaptation strategies and preferences for PICC information resource content and design. A qualitative descriptive approach focused on presenting participants' viewpoints close to the original data without imposing theoretical interpretations (Sandelowski 2000 ). An iterative process was used which involved presenting content and design ideas from earlier interviews to subsequent participants for feedback and refinement. The study adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines (Tong et al. 2007 ) in File S2 . 2.3.1. Setting and Recruitment Participants were recruited from an 800‐bed metropolitan tertiary hospital in South Australia. This is a large public teaching hospital and the main provider of cancer and infectious diseases outpatient treatment in the area. It is usual practice at the health service where the study was set for nursing staff to provide a two‐page written information sheet to adults booked for PICC insertion that briefly explains PICC design, the insertion process, symptoms to be aware of (e.g., swelling) and advice to contact their treating team or present to the Emergency Department if they experience a serious complication (e.g., fever). Individuals are also advised to avoid certain activities (e.g., contact sports, dental work and injecting into the catheter). Other than advice that it is safe to shower with a PICC if the insertion site and external parts are covered, scant practical information about living with a PICC at home is provided in the information sheet. A purposeful sampling strategy recruited participants across different diagnoses (haematological cancers, solid tumours, infections) and geographical locations (metropolitan and rural) to capture diverse consumer experiences. Participants aged 18 or older with cancer or infection requiring a PICC were recruited while waiting for insertion. Participants were eligible if they were living at home or in residential care, with computer access, and the ability to provide informed consent. 2.3.2. Interviews Semi‐structured telephone or video interviews (decided by participants) were conducted by RS from January 2022 to March 2023 and were recorded. An interview guide was used to direct the interviews (Table 1 ). Interviews were conducted by RS, a Senior Lecturer in Nursing at a university who did not have a relationship with participants prior to the interviews. Consumer participants were also invited to take part in an online co‐design workshop to develop a PICC education resource for health consumers. Participants were asked questions about their preferences for PICC information, how the PICC resource should be designed, strategies they had developed to live with the PICC and recommendations for other health consumers. TABLE 1. PICC strategies and educational resource development interview guide. 1. What do you think should be included in an education resource to support people living with a PICC? 2. How do you think we should give information to people about the PICC? 3. What did you do to make it easier to live with a PICC? 4. After you got used to living with the PICC, tell me about what a normal day looked like living with a PICC e.g., from waking up. 5. What do you think would help other people living with a PICC? 6. If a friend of yours needed to have a PICC inserted what advice would you give about the PICC insertion? 7. If a friend of yours just had a PICC inserted, what would your advice be for living with the device? i.e., Your ‘top tips’ Open in a new tab 2.3.3. Data Analysis Interviews were transcribed verbatim and data analysed as per Graneheim and Lundman's qualitative content analysis technique (Graneheim and Lundman 2004 ). Manifest content, where consumer participants directly stated the strategies they developed, resource design preferences and content that should be included in the educational resource was analysed. Two researchers (RS and QX) independently classified and grouped participant strategies, preferences and recommendations into similar categories. Any disagreements were discussed until consensus was reached. Two categories ‘Top tips for living with a PICC’ and ‘Participant recommendations for content to include in a PICC education resource’ were decided a priori as per the research aims. An example of the analysis is provided in Table S1 . 2.3.4. Rigour/Reflexivity Study trustworthiness was established through multiple strategies (Lincoln and Guba 1985 ). Credibility was enhanced by prolonged data engagement, participant validation of researcher interpretations during interviews, and independent analysis by a second researcher who read transcripts, coded extracts, and identified categories. Regular meetings facilitated discussion and revision of codes and categories. An audit trail was maintained throughout to ensure confirmability and dependability. Transferability was supported by providing detailed descriptions of study participants, research context and findings. The lead researcher (RS) is a nurse with clinical and research experience in vascular access devices. This background provided familiarity with the insertion and management of a PICC, standard information practices, and awareness of gaps between clinical practice and consumer needs. To manage this preunderstanding, the researcher employed reflexivity throughout the process, acknowledging that clinical perspectives might differ from the consumer experience, and ensured consumer voices remained central to the project. 2.3.5. Ethical Considerations The study was conducted in accordance with the code of ethics outlined in the Declaration of Helsinki. All study procedures were approved by the Central Adelaide Local Health Network Human Research Ethics Committee (15339) and the University of South Australia (204167) prior to study commencement. Written informed consent was obtained from all participants. 2.3.6. Findings 2.3.6.1. Participants A total of 15 consumer participants were interviewed and ages ranged from 30 to 87 years old (Table 2 ). One recording failed, which was realised immediately after the interview was completed and the researcher made notes of the participant's responses, which were included in the analysis. There were nine participants who underwent treatment for cancer and six for an infection. Demographic and clinical details about participants were reported previously (Sharp et al. 2024 ). Diagnoses included ear infection, jaw osteomyelitis, acute myeloid leukaemia and bowel cancer. Most lived with a partner/spouse at home, and there were three participants who lived at home with young children. Most participants lived in a metropolitan area, and there were five participants who had prior experience of living with a CVAD. TABLE 2. Participant information. Characteristics Mean age, years (SD) 63.87 (14.94) Sex, n Male 6 Female 9 Diagnosis Solid tumour 2 Haematological cancer 7 Infection 6 Previous PICC or other CVAD Y 5 N 10 Number of previous PICCs range, n 1–4 Admission status at insertion In‐patient 9 Outpatient 6 Time with PICC on ward Y 11 N 4 Time with PICC on ward range, days 1–56 Infusion and location Cancer treatment at main cancer centre 9 Intravenous antibiotics via an elastomeric device at home 6 Living arrangement Lives alone 3 Lives with spouse 9 Lives with spouse and children 2 Lives with child 1 Location of home Metropolitan 11 Rural 4 Open in a new tab Abbreviations: PICC, peripherally inserted central catheter; TIVAD, totally implantable venous access device. Participant strategies for living with a PICC at home were classified into four main categories (i) enhancing coping (ii) taking responsibility and understanding information (iii) modifying life and (iv) accessing supports. Two pre‐determined categories, ‘Participant recommendations for PICC education resource content’ and ‘Top tips for living with a PICC’ are also described. 2.3.6.2. Enhancing Coping Participants described varied strategies to enhance coping with a PICC. Many identified it was important to accept the device and achieved this by thinking of it as necessary to allow treatment, it was ‘a means to an end’ (P14, 66 years, female, infected hip prosthesis). Some described that they focused on the positives of the PICC, that it allowed them to stay at home and avoid repeated venepuncture when they were concerned about living at home with a PICC and the risk of PICC complications. Participants also reported that scheduled checks by nurses at home or at an outpatient department and keeping the contact details of clinical staff close at hand also alleviated their concerns. Some participants also described strategies to support their friends and family to accept the PICC. This included continuing usual interactions to ‘… keep it as normal as possible for everybody else's sake as well as your own’ (P7, 75 years, male, acute myeloid leukaemia). One participant described that they supported their young child's acceptance of the triple lumen PICC they lived with by showing them the device, providing appropriate picture books, and allowing them to watch clinical care such as PICC dressings. 2.3.6.3. Taking Responsibility and Understanding the Information Participants recounted that taking responsibility for the device, including monitoring for complications and self‐assessment of the site or external length, was important to ensure safety. Once participants had gained clinical knowledge, they described that they monitored clinicians to ensure they adhered to clinical guidelines and queried nurses when practice deviated from their experience of clinical care. Participants described that they took responsibility to seek further information online and ask questions to enhance their understanding of the procedure and the clinical care of the PICC. Some identified that ensuring that caregivers were included in education sessions was important to aid understanding for both the individual with the PICC and the caregiver. 2.3.6.4. Modifying Life Most of the strategies that participants described focused on the practical aspects of living with a PICC. Central to this was the modification of showering to keep the PICC dressing dry. Many used the hospital provided shower cover, but often this was ineffective. Participants recounted that they learned to keep the PICC arm lifted and away from the water stream of the shower. Keeping the dressing dry was more challenging when they washed their hair, and many used two or more shower covers ‘You can do—two shower sleeves works better than one if you're really worried. Then you can be—so if I'm washing my hair for example I might use two because it's harder not to get it wet’ (P13, female, 52 years, acute myeloid leukaemia). Other strategies to protect the PICC during usual activities included using the non‐PICC arm to complete housework. One participant who lived on a farm recounted that they were cautious about the impact of their usual activities on the PICC and avoided lifting their arm above the shoulder or carrying heavy weights. Several strategies for modifying clothing choice were reported which included choosing loose clothing such as dresses with large arm holes to allow easier access. Participants with children reported several strategies to continue their caring responsibilities. Those with younger children described that they learned to use the non‐PICC arm to lift the child. PICC accessories such as PICC and shower covers allowed them to continue their usual interactions with their children. One participant used shower covers to protect the PICC while they bathed their toddler. Some participants described that the bamboo PICC arm covers provided by the hospital were essential to protect the PICC from young children dislodging the device. 2.3.6.5. Accessing Supports Access to auxiliary PICC products and social supports were important for life with a PICC. The hospital provided medical products including shower covers and a bamboo PICC arm cover that supported participants during daily life. Leaning on the support of friends and family was an important strategy for participants when living with a PICC. Participants often described a partnership with their spouse; they worked together to manage treatment at home—‘we managed—we managed it’. (P2, 71 years, female, bladder cancer). Friends and family also provided practical support for participants such as assisting with showering as well as taking over their usual household responsibilities. Several participants described that family members with a background in healthcare were essential to assist them to understand PICC information as they translated the medical language provided and helped monitor the device and infusion. 2.3.6.6. Participant Recommendations for the PICC Education Resource Content Participants recommended that both clinical and practical content should be included in the PICC education resource (Table S2 ). Recommendations for clinical information focussed on providing information about PICC insertion, the dressing process and removal. Participants indicated that PICC insertion information should be presented using a reassuring tone, explain how the device is inserted and how the PICC tip location is verified to reduce worry. Some participants indicated that it was important to inform people with a PICC that they were required to take responsibility for the device including self‐assessment to identify complications and being proactive in accessing clinical care when required. One individual identified that an education resource should clearly state that individuals with a PICC are responsible for the device, that they should ‘Own it, yeah, definitely. It's yours, it's part of you’, (P5, 45 years, male, sepsis, lung/spine abscess). Recommendations for practical information centred on how to adapt showering to keep the PICC dressing dry. One participant indicated that it would be useful to present the education resource as the journey of a typical consumer with a PICC, from learning about the device to PICC removal. Overall, many participants recommended that the information should focus on the benefits of having a PICC ‘try and present it in a positive way because you know overall it is – you know it is positive because it does help you to get on with your life’. (P14, 66 years, female, infected hip prosthesis). 2.3.6.7. Participant Recommendations for Other Consumers Awaiting PICC Insertion ‘Top Tips’ for Living With a PICC Participants emphasised that people about to have a PICC inserted should be informed about the insertion and care of a PICC and ask questions when required (Table S3 ). Some also indicated that people with a PICC should think about the impact of the device on people around them; this included involving adult caregivers in PICC education and children in PICC care to assist their acceptance of the device. Recommendations were also made to take responsibility for the device, including protecting the PICC during usual activities, ensuring clinicians follow clinical guidelines, self‐assessing for complications and accessing clinical care outside of scheduled appointments when required. Some recommended that others should plan clinical care such as attending pathology centres when Registered Nurses were present to allow blood sampling via the PICC and avoid venepuncture. Other recommendations focussed on minimising the psychological impact of a PICC. Some suggested that other consumers should not be concerned about PICC insertion and to focus on the many benefits of treatment with a PICC. Some participants emphasised that people about to have a PICC inserted should be aware that concerns about adapting to life with a PICC will dissipate over time and that it is important to accept the device to resume daily life. Participants recommended accessing supports, whether that was from informal caregivers, clinicians or supplies from the hospital. Some participants provided practical tips, including advocating for the PICC to be angled away from the cubital fossa during dressing changes to reduce discomfort and a strategy to circumvent withdrawal occlusion. 2.4. Draft Storyboard and Script Development As the development of the PICC education resource was informed by a co‐design framework, participant preferences shaped the design of the format of the resource and content. Initially, an animated video to showcase strategies to live with a PICC was planned by the project team. During interviews, participants thought that this format would exclude consumers who were uncomfortable with technology or lacked access to a computer. The PICC education resource format was changed to a booklet (online or paper based) based on this feedback. A draft booklet story board with text was developed by two researchers (RS, QX) based on participant strategies and recommendations identified in the qualitative interviews. The booklet was structured as the journey of a typical person with a PICC, from learning about the device to PICC removal based on a recommendation of a participant in the qualitative interviews. Key points in the journey of a consumer with a PICC were identified by two researchers (RS, QX) from interview transcripts. This included sections such as finding out about the need for the PICC, PICC insertion, discharge home, the first 24 h at home, accepting the PICC, living with the PICC and PICC removal. Initially, the focus of the booklet was practical consumer strategies to adapt to life at home with a PICC. This was amended to include clinical information about PICC insertion, dressing changes and PICC removal based on consumer participant feedback. For example, some participants recommended that the booklet include information about the rationale for the PICC tip location and the clinical reasoning underpinning arm choice for PICC insertion. Content in the booklet was framed positively, and emphasis was placed on avoiding information/images that could increase distress. Hence, needles were not shown in the diagrams, and the word ‘needle’ was not used when describing PICC insertion to prevent the nocebo effect that may increase negative expectations and pain sensitivity (Arrow et al. 2022 ). Strategies identified by participants in the qualitative interviews were not included in the booklet if they were too specific to individual circumstances or encouraged potentially counterproductive behaviour such as accessing information from a video sharing platform. There were four characters (two undergoing treatment for cancer and two for infection) developed for the booklet by RS based on demographic and clinical information reported by participants in the qualitative interviews (Figure 2 ). Diverse characters (gender, age and ethnicity) were designed to improve appeal to different groups. FIGURE 2. Open in a new tab ‘Living well with a PICC at home’ booklet style frames of two characters. A story was developed for each character based on the experience and strategies described by participants in the qualitative interviews. Participant quotes were merged to present the character stories in natural language (Table S4 ). Emphasis was placed on using plain language in the booklet to ensure that most adults would be able to understand the content. Both the a priori categories and the categories that emerged from content analysis of the qualitative interviews (strategies to enhance coping, take responsibility, modify life and access supports) formed the foundation of the booklet content. A range of experiences (positive and challenging) were presented with a focus on the characters overcoming the challenges they faced. 2.5. Draft Feedback (Project Team) The draft storyboard and script were distributed to project team members who were asked to provide feedback and suggest revisions based on their clinical experience, consumer perspectives or research knowledge. Feedback was collected through a series of group email exchanges, with suggestions reviewed and discussed among team members. All suggestions were implemented, including a summary section outlining consumer responsibilities for reducing complication risks (consumer team member), information about potential skin irritation from dressings and the importance of reporting this to nurses (researcher team member), and acknowledgment that clinical practice may vary in the hospital and home (clinician team member). The clinical details of one character were amended based on a project team member (researcher) suggestion to include a character with a chronic, complex condition that was not related to cancer. The background information for this character was developed based on the clinical experience of team members. 2.6. Prototype Development A professional design company was enlisted to design the booklet to improve appeal. The lead researcher attended three meetings with a professional graphic designer throughout the project and ideas were shared via email. The storyboard with text was sent to the design company, who produced a prototype booklet. The prototype booklet was reviewed by all members of the project team and discussed in group emails until the final prototype was agreed. Readability was assessed by the lead researcher using the Flesch Reading Ease score and the Flesch‐Kincaid reading grade level, commonly used formulas to predict reading difficulty that are provided within the Word Office Package (Bothun et al. 2022 ). The former tool scores text between 1 and 100, with a higher score indicating text is easier to read. The latter identifies ease of readability on a scale from 1 to 12, which corresponds to the American education‐grade level necessary to comprehend a passage of text. 2.7. Prototype Feedback—Health Consumers and External Clinician Panel Initially, online co‐design workshops were planned with the project team and health consumer participants to refine the prototype PICC information resource. Nine consumer participants who had consented to the qualitative interviews also agreed to participate in these workshops. However, when the workshops were scheduled, most participants declined to take part, citing lack of time or deterioration in their clinical condition. The remaining participants ( n = 2) expressed a preference for individual interviews and providing written feedback rather than group workshops. The project team adapted the methodology by replacing the planned workshops with individual interviews and an investigator‐developed survey to rate relevance, comprehensiveness, visual appeal, writing style and usefulness. The survey contained a 4‐point Likert scale to determine relevance (not relevant to highly relevant) and comprehensiveness (not comprehensive to highly comprehensive) of each section. The group were also asked to make recommendations for each section, whether to delete the section, make revisions (major/minor) or keep the section without amendments. The appropriateness of the writing style and level, appearance of the booklet and usefulness of each section was marked as either ‘Yes/No’ (Lynn 1986 ). An external clinical review panel (one Clinical Nurse/Clinical Nurse Specialist from each of the following areas: cancer, infectious diseases, community and PICC insertion) evaluated each section of the prototype booklet using the same researcher‐developed questionnaire. Both groups were also asked to provide suggestions to improve content in a free text box. 2.7.1. Results 2.7.1.1. Readability The Flesch Reading Ease score for the booklet was 76/100 and the Flesch‐Kincaid reading grade level was 6.9 for the booklet, which indicates that approximately seven years of education would be required to understand the booklet (Bothun et al. 2022 ). 2.7.1.2. Relevance Clinicians and consumer participants rated the booklet as highly relevant (mean score of 3.9/4). Analysed separately, clinicians gave an overall score for relevance of 3.8/4 and consumers 4/4 (all sections were highly relevant). The sections that scored lowest for relevance by clinicians were ‘How do people feel when they hear about getting a PICC?’, ‘The first 24 hours at home’ and ‘Taking care of yourself and asking for help’ which all achieved a mean score of 3.6/4. Most participants indicated that no revisions were required to the booklet to improve relevance. Only one participant (a cancer nurse from the external clinical review panel) indicated that (minor) changes were required (Table S4 ). One clinician indicated that no changes were required but did comment that the PICC insertion section failed to show a needle or indicate that local anaesthetic used for PICC insertion may be painful. They also commented that the section ‘Changing daily life to keep the PICC safe’ which indicates that consumers may need to change how they completed housework may be confronting for consumers as only minimal changes are required to adapt to a PICC. The project team discussed these comments but did not amend either of these sections based on the comments. The ‘PICC insertion’ section was not amended to avoid the use of ‘negative’ imagery and language. Many of the team also disagreed that the adaptations required by people who have a PICC inserted are minimal. 2.7.1.3. Comprehensiveness Comprehensiveness scores were high overall with a mean score of 3.8 out of 4, indicating that the booklet provided comprehensive information. Clinicians rated comprehensiveness as 3.7 out of 4. The sections that were rated the lowest by clinicians were the section about ‘Who gets a PICC’ which achieved an average score of 3.3/4 and was rated by one clinician as 2 (somewhat comprehensive). Consumers indicated that all sections of the booklet provided comprehensive information (4/4). None of the participants indicated any revisions were required for the booklet to improve comprehensiveness. 2.7.1.4. Visual Appeal, Writing Style and Usefulness Participants (all consumers and clinicians) agreed that all sections of the booklet were written so that most people would understand the information, it would be useful for people living at home with a PICC and the booklet was visually appealing. Feedback in the free text section from clinicians included ‘the booklet looks great, love the graphics. Flows well and terminology is nice and simple’ from a community nurse. An external review team member who was a PICC inserter indicated that ‘the removal was simple yet perfectly explained for the consumer’. And a cancer nurse provided the following feedback, ‘A nice and useful booklet that I feel would be beneficial to patients that have a PICC’. Health consumers stated that ‘(I) think it makes perfect sense, the information is in simple terms and easily understood, most of the issues I had with the several PICC lines are covered well in the booklet’ and ‘the pictures were great, especially if you weren't great at reading…the pictures really helped, this is great, there is nothing like this online, I know, I looked’. 2.8. Final Version of the PICC Information Booklet After the project team researched consensus on revisions, the updated content was sent to the graphic design company, who produced the final resource in two formats: a printed paper booklet for clinical distribution and an online publication accessible via web browsers. 3. Discussion The aim of this project was to co‐design an education resource based on the knowledge, preferences and recommendations of consumers with lived experience of a PICC in conjunction with specialist nurses and researchers. A range of strategies to adapt to life with a PICC was reported by 15 participants in qualitative interviews. These strategies and recommendations for content were used to develop a prototype booklet which was assessed for readability and evaluated by an external group of specialist nurses and consumer participants from the qualitative interviews. To the best of our knowledge, this is the first PICC information resource for adults with a PICC that has been co‐designed by health consumers, researchers and clinicians. Consumer involvement in the development of health resources improves the relevance and lucidity of information, which has been shown to improve health knowledge (Wiles et al. 2022 ). The use of these collaborative approaches, where a diverse range of stakeholders work together to improve health services or health information, has gained popularity in the last five years, with published research using these frameworks in health increasing markedly (Green et al. 2020 ). The co‐design approach supports clinicians in meeting consumer information needs, as consumer preferences and recommendations are used to design health information resources (Silvola et al. 2023 ). It is imperative that individuals living with a PICC at home are provided with appropriate information that meets their needs. These individuals are required to adapt many aspects of life and understand health information to prevent, identify and respond to PICC complications. Appropriate information may also reduce fear and anxiety associated with PICC insertion and the risk of complications when completing usual activities (Sharp et al. 2024 ). Clinicians and researchers may not understand the information that is required by health consumers. This was the case in this project; the project team assumed that individuals undergoing PICC insertion were provided with sufficient clinical information but lacked practical information to support life at home. During the interviews, it soon became clear that individuals also required further clinical information. The recommendations for clinical content made by participants varied from including simple information such as how the PICC is removed to sophisticated concepts including explaining the rationale for PICC tip location and arm choice. As part of the co‐design philosophy, the project team consciously valued and prioritised the knowledge that participants had developed in living with a PICC and navigating clinical care. Traditionally, written health information has been produced by clinicians without input from health consumers (Smith et al. 2017 ). This is changing in many settings, with formal consumer advisory groups providing feedback on health information. There is still a need to progress this to also value the knowledge that health consumers develop within clinical and research practice on par with other forms of scientific and health knowledge (Hsu et al. 2024 ). Further to this is the challenge in making the inclusion of consumer knowledge a standardised part of health care. Ensuring consistent integration of consumer knowledge into clinical practice and research requires systematic structural changes and ongoing commitment. Establishing a foundational principle that all health information should be co‐designed with consumers and that consumer knowledge is inherently valuable may provide the necessary starting point for transformation. Health consumer knowledge is multifaceted, incorporating both experiential learning and the skills needed to apply it in practice (Pols 2014 ). The knowledge and skills that these experienced health consumers developed were apparent in the current project, with participants describing knowledge about PICC clinical practice protocols, the development of skills in monitoring clinical care (and responding to breaches in standards) and skills in self‐assessment of symptoms and navigating health systems. To address the information needs of health consumers effectively, PICC information must be clearly written and easy to understand. The use of simple language to explain concepts in the booklet was emphasised in this project as health consumers with varied literacy levels are required to understand PICC information. Readability levels of the booklet indicated that seven years of education would be required for adults to comprehend the information, which meets healthcare setting/agency recommendations that the reading grade level of education materials for health consumers should not be higher than eighth‐grade level (Rooney et al. 2021 ; South Australia Health 2013 ). The Flesch Reading Ease score of 76.1/100 for the PICC booklet indicated that 83%–88% of adults would be able to comprehend the information according to Australian and American reading level statistics (Bothun et al. 2022 ; Australian Public Service Commission 2024 ). Low health literacy is prevalent across industrialised countries such as Australia and the USA, with between 30% and 60% of adults having difficulty reading and understanding health information (Australian Commission on Safety and Quality in Health Care 2014 ; Rudd 2007 ). Low health literacy is associated with worse health outcomes, yet health information materials are often written at a level that excludes a large proportion of the population (Choudhry et al. 2019 ). However, our resource meets and exceeds these standards and is ready for validation and implementation in other settings. Another strength of the project is that health consumers evaluated the content and design of the booklet. Health consumers are ideally placed to determine whether an education resource is comprehensive and easy to understand (McDonald et al. 2023 ). While the content and design of the booklet were validated by both a sub‐set of participants and an external group of specialist clinicians, the impact of this booklet on health outcomes has yet to be evaluated. Evaluation of co‐designed resources is necessary to understand whether this approach leads to better health outcomes (Grindell et al. 2022 ). Outcomes measures should not only include the impact of the resource on PICC knowledge and clinical outcomes, but also other outcomes such as wellbeing, health literacy and self‐efficacy measures. 4. Limitations Data saturation may not have been achieved as the qualitative interviews aimed to inform booklet co‐design rather than develop a comprehensive theoretical understanding. Recruitment from one health service may reflect that specific context and the self‐selecting sample potentially included individuals with higher education and self‐efficacy levels, which may not reflect experiences of those with lower literacy and empowerment. People unable to speak, read, or understand English were excluded and would presumably have different experiences, strategies and information preferences. Future validation with consumers from diverse healthcare settings and cultures could determine whether the strategies and insights identified in this Australian hospital context translate to other systems and environments. While all health consumer participants were invited to provide feedback about the booklet, only a few volunteered to take part. The participants who participated in this phase were both middle‐aged Caucasian males, and their views may not be representative of the variety of consumers that require a PICC. We also acknowledge that the PICC booklet would not be appropriate for health consumers with very low functional health literacy, where graphics to explain concepts may be appropriate. Finally, there is no acceptable ‘gold standard’ algorithm to assess readability (Dwyer et al. 2021 ), and we used the algorithm inbuilt into Microsoft Word; however, we also asked consumer participants and an external group of specialist clinicians to review the booklet for ease of comprehension. 5. Conclusion This project co‐designed a novel PICC education resource for adults living at home with a PICC based on consumer strategies to navigate life with a PICC and preferences for the design and content of the resource. The co‐design approach to develop the resource and focus on using simple language may make this a valuable resource to support nurses and other clinicians to meet the information needs of individuals that require a PICC, many of whom will have varied health literacy. Further evaluation will determine the impact of the resource on PICC knowledge, self‐efficacy, clinical and wellbeing outcomes. Ethics Statement The study was conducted in accordance with the code of ethics outlined in the Declaration of Helsinki. All study procedures were approved by the Central Adelaide Local Health Network Human Research Ethics Committee (15339) and the University of South Australia (204167) prior to study commencement. Consent Written informed consent was obtained from all participants. Conflicts of Interest A.U. reports investigator‐initiated research grants paid to her employer from BD, 3M, Medline and Biolife, unrelated to this study. All other authors declare that they have no known competing interests that could have appeared to influence the work reported in this paper. Supporting information Table S1. Data analysis example—Codes and quotes for the category ‘enhancing coping’. Table S2. Participant recommendations for a PICC education resource content. Table S3. Participant recommendations for other consumers awaiting PICC insertion—Top tips for living with a PICC at home. Table S4. Living well with a PICC at home storyboard and text. JAN-82-5348-s002.docx (36.6KB, docx) File S1. Consolidated criteria for reporting qualitative studies (COREQ). JAN-82-5348-s001.docx (26.5KB, docx) Acknowledgements Open access publishing facilitated by University of South Australia, as part of the Wiley ‐ University of South Australia agreement via the Council of Australian University Librarians. Sharp, R. , Xu Q., Pumpa R., et al. 2026. “‘Living Well With a PICC at Home’: Co‐Design and Evaluation of a Peripherally Inserted Central Catheter (PICC) Booklet.” Journal of Advanced Nursing 82, no. 5: 5348–5358. 10.1111/jan.70146. Funding: This study was supported by the Nurses’ Memorial Foundation of South Australia. The funder had no role in study design, data collection, analysis, interpretation of data, writing of the manuscript, or the decision to submit the article for publication. Data Availability Statement Data is available from the corresponding author on reasonable request. 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