When control becomes a matter of life: a phenomenological exploration of intestinal failure patients’ lived experience receiving assistance from home care nurses in home parenteral nutrition management

Abstract

Background:

Parenteral nutrition (PN) provides the body with essential nourishment through intravenous infusion. Home parenteral nutrition (HPN) has a significant impact on the lives of its users; however, very few studies explore the phenomenon of homecare nurse provided assistance for the management and administration of HPN.

Method:

The phenomenological approach, Reflective Lifeworld Research, was utilised. Data were collected through semi-structured interviews with five patients with intestinal failure. The analysis was performed according to the instructions of Reflective Lifeworld Research.

Results:

Four constituents were identified: (1) balanced nursing experience, (2) correct handling of procedures, (3) reversed expert roles and (4) the homecare nurse as a lifeline. Control was found to be the essence of the phenomenon, multi-faceted and characterised by the participants’ ambivalent feelings.

Conclusion:

The participants were ambivalent about receiving assistance from the homecare nurses. HPN is a complex treatment in which demands are placed on the homecare nurses’ competencies to deliver a high quality of care. The patients live with a constant fear of complications and hospitalisations. The participants felt compelled to perform control, monitoring the homecare nurses’ work, to ensure that errors did not occur. As more assistance was received from homecare nurses, the participants experienced a loss of control. However, the assistance did also give a sense of security, whereby the homecare nurse was perceived as a lifeline.

From a sociological perspective, the need for control can be a result of the constant development of society, where greater demands were placed on citizens’ commitment and responsibility for their own treatment, prompting a larger need for individual control.

Keywords

home parenteral nutrition homecare nursing patient experience reflective lifeworld research

Introduction

In recent years, a reorganisation of the healthcare systems throughout Europe has taken place, which contributed to a transfer of tasks from hospitals to municipalities, with a focus on shortening hospitalisation periods. This allows hospitals to treat the most specialised cases, better utilising the resources in the healthcare system, while simultaneously keeping citizens’ quality of life in mind (Norlyk et al., 2020; Phelan et al., 2018; The Danish Ministry of Health, 2017). Among these treatments, are specialised and complicated intravenous treatments, such as home parenteral nutrition (HPN; Region of Southern Denmark, 2017; The Danish Ministry of Health, 2017). Parenteral nutrition (PN) is lifesaving for people with intestinal failure (IF; Inayet and Neild, 2015).

Over the years, developments in the specialty as well as in general healthcare, have given patients undergoing PN, an opportunity to live their lives at home, instead of being hospitalised for most of their lives (Kumpf, 2019). Despite PN being lifesaving, several complications may occur in connection with the treatment, such as catheter-related bloodstream infections and thrombosis. Proper handling of the permanent tunnelled central venous catheter is therefore crucial to reduce the risk of catheter-related complications (Bielawska and Allard, 2017; Fuglsang et al., 2020; Inayet and Neild, 2015). IF-patients are a complex heterogeneous population that requires interdisciplinary and multi-professional collaboration (Bielawska and Allard, 2017; Eriksen et al., 2020; Inayet and Neild, 2015). It is generally recognised that HPN has a significant impact on the lives of patients, leading to a growing interest in studying the quality of life of the population (Burden et al., 2018). Despite this, it appears that quality of life is not measured systematically to the same extent in clinical practice as it is in the context of research studies (Geransar et al., 2023)

The literature addresses a desire for normality (Sowerbutts et al., 2020; Winkler and Smith, 2015), but instead, signs of anxiety and depression (Ablett et al., 2019), catheter-related infections (Dreesen et al., 2015; Huisman-de Waal et al., 2011; Sowerbutts et al., 2020; Tsang and Carey, 2015; Winkler and Smith, 2015), affected mobility (Sowerbutts et al., 2020; Tsang and Carey, 2015; Wong et al., 2018), affected social interactions (Sowerbutts et al., 2020; Wong et al., 2018) and increased dependence (Dreesen et al., 2015; Ennis et al., 2018; Wong et al., 2018) are experienced.

However, from a patient perspective, HPN is described as life-saving, and therefore positive for their quality of life (Dreesen et al., 2015; Sowerbutts et al., 2020; Tsang and Carey, 2015; Winkler and Smith, 2015).

As it is not an option for all IF-patients to manage HPN independently, they get assistance from homecare nurses (Brandt et al., 2017). In a Danish context, it is described that 41% of IF-patients receive assistance from homecare nurses for administration of HPN (Brandt et al., 2017).

The research illustrates that healthcare professionals tend to focus on the instrumental aspects of HPN-related care more than psychosocial aspects (DiMaria-Ghalili et al., 2016; Stoner et al., 2019). From a patient perspective, the instrumental and the psychosocial factors both have an impact on the experience of the care, but affective aspects of HPN-related care may be downgraded, due to a lack of resources for the homecare nurses (Dreesen et al., 2014; Huisman-de Waal et al., 2011). Due to the complexity of IF and the rarity of its occurrence, there is limited knowledge and expertise on the subject outside of specialist centres (Ablett et al., 2019). The complexity places great demands on the competencies of homecare nurses (DiMaria-Ghalili et al., 2016). According to Fuglsang et al. (2020), the risk of hospitalisation appears to increase if HPN is administered by home nurses. Although the homecare nurses have been found to play an important role for many patients (Dreesen et al., 2014), a theme, described based on HPN-users’ postings on social media, is ‘Patient safety concerns of PN handling by health care providers’. The theme illustrates HPN users’ concerns, dissatisfaction and suspicion in healthcare professionals’ handling of HPN (Barrera et al., 2024).

The purpose of this study is to shed light on the phenomenon of receiving assistance from homecare nurses, for the management and administration of HPN. As there is considerable literature found describing the experience of living with HPN, but limited literature exploring and focusing on the patient perspective in relation to homecare nursing, this study attempts to help fill a gap in the literature.

Methodological approach

This qualitative study employs a methodological approach rooted in phenomenology, following the framework described by Dahlberg et al. (2008). This approach, termed Reflective Lifeworld Research (RLR), is geared towards elucidating the experience of a given phenomenon. Here, the experience of receiving assistance from homecare nurses in the management and administration of HPN was in focus. Conforming to the principles outlined by Zahavi (2003), RLR endeavours to explore phenomena devoid of preconceived theories or assumptions. Consequently, the researcher maintains a stance of openness throughout the entirety of the research process (Dahlberg et al., 2008)

Participants

In RLR, variation is more important than the number of participants in order to reach a nuanced description of the phenomenon under exploration (Dahlberg et al., 2008). Therefore, the principle of maximum variation was used as the selection strategy. The inclusion criteria reflected the desire for variety, which is why the criteria were limited to adults who currently or previously received assistance from homecare nurses to manage HPN and individuals who were able to operate technological tools in relation to the interview situation. Patients who were hospitalised and were acutely affected or critically ill were excluded. The potential participants were contacted by the gatekeeper, who was a clinical nurse specialist, employed at a gastroenterology ward. Six potential participants were contacted, five of whom accepted the invitation. The one who declined the invitation explained that it was because of recent illness, and therefore it was unmanageable.

With their permission, written information regarding the study was provided, together with a declaration of consent.

One male and four female participants, aged 45–85, were included in this study. Participants with different genders, ages, levels of education and geography were included (Table 1). In addition, attempts were made to recruit participants who had received HPN over varying times and to a varying degree to get as rich a description of the phenomenon as possible (Dahlberg et al., 2008).

Table 1.

Participant demographics.

	N	Mean
Gender
Male	1
Female	4
Age, years		62 years
30–50	2
51–70	1
71–90	2
Highest education
Primary and lower secondary school	2
Vocational education and training	2
Bachelor’s degree	1
Geographic residence
Capital Region of Denmark	4
Region Zealand	1
HPN duration, years		9 years
1–5 years	2
6–10 years	2
11–15 years	–
16–20 years	1
HPN days of infusion per week		7 days
7 days	5
HPN hours of infusion per day		10.8 hours
0–5 hours	–
6–10 hours	2
11–15 hours	3
Degree of assistance
Exclusively preparing and mixing the HPN	3
Previously full assistance, now exclusively preparing and mixing the HPN	1
Full assistance	1
Need for assistance, months or years		2.9 years
0–12 months	2
1–5 years	3

Data collection

To get insight into the participants’ lifeworld, semi-structured interviews were used for data collection. Semi-structured interviews are regularly used in research by health professionals with a duration of 30 minutes to over an hour (Jamshed, 2014). The interviews in this paper varied from 20 to 60 minutes (average of 32 minutes). Due to the circumstances of the COVID-19 pandemic, the interviews took place either by telephone (n = 2) or virtually (n = 3) via Google Meet, as to not risk exposing the participants to a possible infection.

An interview guide (Supplemental material) with questions relating to the phenomenon was prepared and used as inspiration (Kvale and Brinkmann, 2015). The purpose of the initial interview question was to target the participants’ overall experience of the phenomenon (Dahlberg et al., 2008): ‘How do you experience living with home parenteral nutrition?’ followed by questions like ‘How do you experience getting assistance from homecare nurses for the management and administration of parenteral nutrition?’ and ‘How is the collaboration’.

The interviews were audio-recorded and subsequently transcribed.

Data analysis

The aim of a phenomenological analysis is to reach a structure where the essence and its constituents can be described. The analysis began with repeated readings of the entire text to gain an overall sense of each participant’s description of the phenomenon. When it was possible to reproduce the main points of a particular text, the character of the reading changed to focus on the meaning of the parts, that is, the text was thoroughly reread and divided into meaning units. Then, the various meaning units were clustered into patterns of understanding, showing their interrelationships. Finally, by focusing on the recurring themes, the essence of the phenomenon of living with HPN was formulated along with its constituents.

Results

The essence, Control, as well as four associated constituents emerged as being significant to the participants’ experiences: (1) balanced nursing experience, (2) correct handling of procedures, (3) reversed expert roles and (4) the homecare nurse as a lifeline.

Essence of the phenomenon

The essence of the phenomenon, receiving assistance from homecare nurses for the management and administration of HPN turned out to be control. In this study, control is defined as the participant’s ability or competence to decide and plan what should or should not be done. In addition, control is experienced when participants monitor the work of the homecare nurses, ensuring that things are in order, preventing undesirable events. These understandings of control are constant and pervasive of the phenomenon studied and are expressed in each of the following constituents.

Constituents

Balanced nursing experience

The individual experiences with homecare nurses and the specific municipality influenced the participants’ perception of receiving assistance for the management and administration of HPN. Excessive individual demands were imposed on municipalities and homecare nurses for continuity and experience. The requirement for experience was nuanced; limited experience creates insecurity, while simultaneously creating an opportunity for good cooperation, as the participants could influence the nurse’s knowledge and experience.

Lack of experience with HPN was not only experienced as problematic in relation to the specific procedures for handling and administering HPN, but could also include a lack of understanding the importance of an infusion time of up to 14 hours. However, the homecare nurse’s understanding will improve over time.

They just had to get into it, and they just had to find out . . . (. . .) What was difficult, was that they had to find out and be here for the time so it could run in. So, it does not work that they come at 2 am at night (Participant 5).

The participants wanted relational continuity and experience among the homecare nurses. Substitutes and newly employed homecare nurses increased the participants’ concerns and insecurities.

In contrast, the participants also described that homecare nurses experience in intravenous therapies are not necessarily preferable. They can be difficult to correct and collaborate with the handling of HPN. In these cases, the participants took control of the situation to prevent errors and complications.

(. . .) Then there are some who claim that . . . well I have been in the intensive care unit for a hundred years, so they are completely in control of it. And then they start doing something. And then I say to them . . . You just touched it and you just touched there, and you just touched there, then it has to be done over . . . No, it does not have to, you can do that . . . No, it has to be . . . And then it has to be done over again (Participant 1).

The participants were given a control which, among other things, gave them the power to indicate when they believed that the homecare nurses, were sufficiently trained and experienced to come into their home to administer HPN. The participants credited themselves for the homecare nurses’ successful training, using terms such as ‘behaves well’ and ‘well-trained’ to describe the good collaboration. The participants strived for a balanced nursing experience, where there was room for both the home nurse’s and the participant’s experience.

Correct handling of procedures

Correct handling of HPN dictates that the procedures must be performed in accordance with applicable guidelines, defined by the responsible hospital ward. When the procedures were not followed, it generated a sense of insecurity and a fear of complications and hospitalisations. Consequently, the participants supervised the homecare nurses to ensure that nothing unwanted occurred.

‘So if I think it’s sloppy, or I can see that there are some things they are starting to do differently or something, then they get the book in their hand and are told to read it again. . .’ (Participant 1).

All homecare nurses were disciplined, regardless of their experience with HPN: ‘where there are people, mistakes are made’ (Participant 2).

Sometimes, minor mistakes were ignored by the participants, due to exhaustion from continuous management of the nurses, in relation to the HPN procedures. Maintaining control in relation to the HPN procedures could be exhausting.

Reversed expert roles

The relation between the homecare nurse and the participant could be characterised as a reversed expert role. The participants had control over the situation and exercised this power as they found adequate, whereas the homecare nurses were expected to adjust and accept the exchanged roles.

(. . .) They are very amazing. (. . .) They are 110% on. They’re entering. I’ve made the things ready as I should have. It’s out on the kitchen table, everything. And the different additives I need to have . . . Magnesium and potassium and so on. And syringes in the size I need, lie in front, with needles. And they are happy about that. (. . .) And as long as I have control in all those things, then they are ecstatically happy. (. . .) And I sit beside them when they make it (Participant 2).

The participants expressed that they wanted to instruct and train homecare nurses in HPN treatment. They criticised the homecare nurses handling and administration, if they deemed the quality as too poor and demanded it redone if necessary. Good collaboration between the participant and the homecare nurse required that the participant was considered an expert by the homecare nurse. Furthermore, it appeared that the homecare nurses’ areas of responsibility were reduced when the participants took over nursing tasks.

And then I say. Yes, it’s fine, the bathroom is there. First of all, you wash your hands and there are special cloths for you, you can dry your hands in. And then you come out here in the kitchen to me and then I’ll probably show you. And then I guide her in things in the order they have to be done (Participant 2).

In some cases, the reversed expert roles ended up in a disclaimer, which was not necessarily what the participants wanted. This could lead to an unwanted sense of having too much responsibility, frustrating the participants. In other cases, the opposing expectations of the relationship and the interaction collided, leading to conflicts and a power struggle.

(. . .) Here you follow the book that has been made from the intestinal failure unit. And it must be followed because that is what is right. And she did not want to. So, it ended up with me having to call the office and say that they had to send another one because otherwise I will beat her (Participant 5).

In these cases, the participants tried to maintain control, whereas the homecare nurses attempted to sustain the expert role. These battles of power could lead to major conflicts, where complaints and threats were made. In extreme situations, the homecare nurses could be thrown out of the participant’s home.

The homecare nurse as a lifeline

The participants had alternating periods of either much or less assistance from homecare nurses for the management and administration HPN. In periods where participants received a great amount of assistance from homecare nurses, they had to be at home at specific times for connection, disconnection, as well as while the PN was prepared. In these periods, the participants lost control of their everyday life, as they had to plan all activities around the visits of the homecare nurses. A way of regaining some autonomy, and subsequently control, was to learn how to handle some of the tasks associated with HPN themselves:

Some evenings they came at 10 pm and some evenings half past 8 and that . . . Sometimes you are more tired than other days . . . And then it’s nice that you can connect it on yourself. (. . .) So, I do not have to sit and wait (Participant 3).

The ambivalence associated with getting assistance with HPN meant that the participants took over parts of HPN care, in order to experience a higher degree of autonomy. Conversely, it meant that the participants accepted that they needed the assistance and had acknowledged that it facilitated their everyday life. The homecare nurses gave a sense of security, as they were a lifeline if the need for help arose.

Methodological considerations

A strength in our study is that the participants belong to a group of people which is rarely given a voice. Rigour was achieved by incorporating the classic notions of credibility, dependability, transferability and conformability described by Lincoln and Guba (1985). To accede to these criteria in a way that is consistent with phenomenology, we approached the study with an attitude of balancing our existing knowledge, primarily derived from clinical work with an open mind (Dahlberg et al., 2008). To truly identify the essence of the phenomenon and its constituents, we continuously questioned our pre-assumptions to deter self-confirmation during the interviews and the analysis. A sample of five people living with HPN who varied in age, civil status, functional condition and educational level turned out to be sufficient to achieve enough examples to truly describe the phenomenon of receiving assistance from homecare nurses for the management and administration of HPN. To attain confirmability, the authors worked back and forth in the material in a transparent process of analysis to agree on the essence and the constituents that were beyond the taken-for-granted understanding of everyday life (Dahlberg et al., 2008). A scrupulous description of the research process assured dependability.

A limitation of the study is that the sample was small; however, it is still in accordance with phenomenological recommendations (Dahlberg et al., 2008). However, the participants were recruited by a hospital nurse who knew them, which might have influenced the selection.

Due to the situation with COVID-19 at the time of the interviews, they were conducted online or by telephone, which put a limitation on deciphering nonverbal data. However, the use of online communication has become more common, as it opens for increased geographical variation (Kvale and Brinkmann, 2015). In this study, it also protected participants and the interviewer against possible infection. The inclusion criterion also required the participants to be able to handle communication technology meaning less resourceful and more vulnerable individuals may have been excluded from the study. Furthermore, it may have been beneficial to include some observations to enhance the understanding of the experience of receiving assistance from homecare nurses for the management and administration of HPN.

In the light of the continued development in local health service, with several complex tasks and a demand for increased efficiency, greater demands are placed on homecare nurses’ competencies for delivering high quality of care (DiMaria-Ghalili et al., 2016; Norlyk et al., 2020; The Danish Ministry of Health, 2017). Consequently, this study is significant as it gives nurses in homecare an insight into the patients’ perspectives, thus achieving an increased understanding of the population.

Discussion

The constituent Balanced nursing experience illustrates that the homecare nurses’ knowledge and experience in treating HPN is of great importance to the participants’ experience of the phenomenon. The constituent highlights that lack of experience with HPN and intravenous treatments among homecare nurses could create insecurity, increasing the desire for control among the participants. Furthermore, lack of experience could form the basis for good cooperation, as the participants could influence the nursing assistance they received. This differs from other findings related to HPN, where this complexity is not described. What is already known is that lack of experience with HPN among homecare nurses may lead to insecurity among people who receive HPN (Dreesen et al., 2014). The lack of experience of the homecare nurses may be due to lack of continuity in their workflows, which the participants in the present study also addressed as significant. Varying experience leads to differing administration of HPN, which may lead to catheter-related complications (Dreesen et al., 2014; Huisman-de Waal et al., 2011). This is in accordance with the findings in this study, where the participants associated a lack of experience and continuity with an increased risk of catheter-related infections. Relational continuity among healthcare professionals could have a positive impact on the HPN-related interaction. In contrast, treatment errors were significant for a negative experience of the interactions with caregivers, potentially leading to a lack of trust (Ennis et al., 2018). In essence, the participants strived for a balance, where there was room for the experience of both parties regarding HPN, which could create the basis of good collaboration.

The constituent Correct handling of procedures illustrated that the homecare nurses’ handling of specific HPN-procedures was of essential importance for the participants’ experience of the phenomenon. Using aseptic techniques and performing good catheter-care can reduce the risk of catheter-related infections (Bielawska and Allard, 2017; Fuglsang et al., 2020), and this was also crucial for the participants in this study. However, the participants seemed to assume that homecare nurses would make mistakes. This assumption is recurrent in a thematic analysis where the HPN-users express their belief that the healthcare professionals will make an error at the expense of their health (Barrera et al., 2024). In this study, it was evident that participants were actively trying to counteract and prevent mistakes by taking control of the treatment, which became apparent in that the participants tended to supervise and control all home nurses. This is in line with a study from England, showing that negative HPN-related healthcare interactions leaves patients with a lack of trust in health professionals, and that fear of complications can lead to a sense of responsibility (Ennis et al., 2018). This responsibility, which rests on the shoulders of the participants when they take control (Ennis et al., 2018), is also seen in this study.

When the participants took control and responsibility regarding HPN-management, it could lead to the participants crossing the line into the homecare nurses’ area of responsibility and tasks, which was highlighted in the constituent Reversed expert roles. These reversed roles could lead to the experience that the homecare nurses abdicated their formal responsibility, imposing it on the participants. Contrarily, another study indicates that patients can become passive, leaving all responsibility to healthcare professionals (Ennis et al., 2018). Although taking responsibility might be burdening and contribute to frustration, the participants in this study preferred taking on the responsibility to avoid complications with the HPN. Conflicts could arise when the participants were determined to be considered as experts, whereas homecare nurses were not willing to accept this role reversal. In these cases, the participants could react forcefully, even banishing the homecare nurses from their home. This is substantiated by other findings, showing that the high complexity of HPN-management is filled with potential conflicts in the relation between the patients and the homecare nurse (Ennis et al., 2018).

When patients take over the HPN-management and administration, it can either generate greater flexibility (Ennis et al., 2018), or a fear of doing something wrong (Sowerbutts et al., 2020). The fear of making mistakes can result in rejection of self-administration (Ennis et al., 2018). This supports the findings in the constituent The homecare nurse as a lifeline. This section highlighted the participants’ ambivalence in getting assistance from homecare nurses, where less assistance meant more control and flexibility. This is in accordance with findings identified by Wong et al. (2018), who found that patients receiving assistance with HPN experience loss of flexibility and independence. However, a sense of normality and independence may be achieved by having ‘days off’ from HPN (Sowerbutts et al., 2020). In our study, participants sought normality by attempting to limit their need for homecare nursing as much as possible, but at the same time, the homecare nurse was seen as a lifeline when complications appeared. This is supported by Ennis et al. (2018) who suggest that receiving homecare as a patient is perceived as a balance between a need for professional assistance, and a feeling of being an independent individual with rights and influence over one’s life.

In the present study, control was identified as being a need and a desire for the participants. According to Professor in Sociology Nikolas Rose (2009) recent development within biomedical research has contributed to people identifying themselves more as somatic individuals. This means that greater responsibility is undertaken by each person, in relation to health and illness – which was previously perceived as the responsibility of the healthcare services (Rose, 2009). Patients have often been through admissions to specialised hospital wards, dealing with complications to IF and PN. As the literature illustrates, this population is at risk of serious complications in the form of catheter-related infections (Bielawska and Allard, 2017; Inayet and Neild, 2015). Although assistance is provided by homecare nurses, patient education is an important element in successful and safe HPN treatment. The reason for this is that patients need to be able to respond to complications when the homecare nurse is not present (Bielawska and Allard, 2017). The specialised hospital ward assigns the patients the responsibility that they are educated to maintain at home. Physicians and nurses expect that the patients, or their relatives, are involved in the treatment. This illustrates that greater demands are placed upon patient-responsibilities in the healthcare system than previously seen. The patients’ need for control mirrors the idea that they consider themselves as somatic individuals as described by Rose (2009).

Conclusion

The essence of receiving assistance for the management and administration of HPN was control. Homecare nurses played an essential role, managing and administering HPN, that is, for the ability of patients to exist, placing great demands on the competencies of homecare nurses. IF-patients live with constant fear of complications and hospitalisations, which could be why they were very aware when the homecare nurse assisted them. Control was characterised by the participants’ ambivalent feelings. It was important for the participants that there was a balanced nursing experience, having room for both the homecare nurses’ and the participant’s experience and knowledge in HPN. The participants experienced that it generated security when they had control. The ability to control procedures, and thereby tell and train the homecare nurses in what the participants believed was correct handling of procedures, gave this feeling of control. Participants felt compelled to perform control in the form of monitoring the homecare nurses’ work, ensuring that errors did not occur in the handling and administration of HPN. Participants’ control and abilities can lead to reversed expert roles. The experience of the reversed expert roles varied among the participants, potentially leading to conflicts with the homecare nurses, where the role and the accompanying control were fought over. The participants had ambivalent feelings about receiving assistance from the homecare nurses. On one hand, as more help was received from homecare nurses, the participants experienced a loss of control which they did not want. On the other hand, the assistance gave them a sense of security and thereby the homecare nurse was perceived as a lifeline.

From a theoretical perspective, it is made clear that the desire and need for control can be a result of the constant development of society, where greater demands are placed on citizens’ commitment and responsibility. This could mean that individuals take on greater responsibility in relation to health and illness, which was previously considered to be the responsibility of the health services. This study generates new knowledge, and as it sheds light on the phenomenon of receiving assistance from homecare nurses for the management and administration of HPN, it has the potential to improve the quality of complex home treatment, while increasing focus on an under illuminated area.

Key points for policy, practice and/or research

Patients with intestinal-failure (IF) need control over their treatment because incorrect handling and mistakes can be lethal.

The IF-patients experience the homecare nurses as lifelines, even though they themselves are experts in their treatment.

Patients’ perspectives are beneficial for IF-patients due to improvement in the quality of complex homecare when professionals have the insight of patients’ experience.

Supplemental Material

sj-pdf-1-jrn-10.1177_17449871241270899 – Supplemental material for When control becomes a matter of life: a phenomenological exploration of intestinal failure patients’ lived experience receiving assistance from home care nurses in home parenteral nutrition management

Supplemental material, sj-pdf-1-jrn-10.1177_17449871241270899 for When control becomes a matter of life: a phenomenological exploration of intestinal failure patients’ lived experience receiving assistance from home care nurses in home parenteral nutrition management by Jacqueline Victoria Nederbye Andersson and Bente Martinsen in Journal of Research in Nursing

Footnotes

Acknowledgements

All authors wish to thank the clinical nursing specialist of the Department of Intestinal Failure and Liver Diseases, Copenhagen University Hospital, Rigshospitalet, Denmark, as well as the participants for their participation and cooperation.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical approval

In Denmark, it is not a requirement to report qualitative research to the National Ethics Committee (National Committee on Health Research Ethics, 2020); however, there are still several legal and ethical considerations to be made regarding this study. Northern Nurses Federation’s (2003) four ethical principles, autonomy, beneficence, non-maleficence and the principle of justice, have all been followed throughout the research process. The participants were given written and verbal information regarding the purpose of the study. The information about the study and the declaration of consent have been prepared, handed out and used in accordance with the requirements of the Danish Data Protection Agency (The Danish Data Protection Agency, 2019). The participants in the study were anonymised in accordance with GDPR rules (Official Journal of the European Union, 2016 and The Danish Ministry of Justice, 2017).

ORCID iD

Jacqueline Victoria Nederbye Andersson

Supplemental material

Supplemental material for this article is available online.

Jacqueline Victoria Nederbye Andersson focuses her research interest within the group of patients with intestinal failure and the qualitative perspective, as this is considered relatively inadequately described. Her motive is to contribute to developing more evidence-based nursing within the field and improving the quality of patient care.

Bente Martinsen’s research is concerned with peoples’ experiences of physical impairment, the meaning of dependency and different challenges related to ageing. Studies of homecare and homecare culture have also been a longstanding research interest of hers. Her work is primarily informed by phenomenological research approaches and the resulting methodological implications.

References

Ablett

Vasant

Taylor

, et al (2019) Poor social support and unemployment are associated with negative affect in home parenteral nutrition-dependent patients with chronic intestinal failure. JPEN Journal of Parenteral and Enteral Nutrition 43: 534–539.

Barrera

Poindexter

Tucker

, et al (2024) Amplifying the lived experiences of parenteral nutrition consumers through the thematic analysis of social media posts. Nutrition in Clinical Practice 39: 850–858.

Bielawska

Allard

(2017) Parenteral nutrition and intestinal failure. Nutrients 9: 466.

Brandt

Hvistendahl

Naimi

, et al (2017) Home parenteral nutrition in adult patients with chronic intestinal failure: The evolution over 4 decades in a tertiary referral center. JPEN Journal of Parenteral and Enteral Nutrition 41: 1178–1187.

Burden

Hemstock

Taylor

, et al (2018) The impact of home parenteral nutrition on the burden of disease including morbidity, mortality and rate of hospitalizations. Clinical Nutrition ESPEN Dec 28: 222–227.

Dahlberg

Nyström

(2008) Reflective Lifeworld Research. Lund, Sweden: Studentlitteratur.

DiMaria-Ghalili

Gilbert

Lord

, et al (2016) ASPEN nurses standards revision task force, american society for parenteral and enteral nutrition. Standards of nutrition care practice and professional performance for nutrition support and generalist nurses. Nutrition Clinical Practice 31: 527–47.

Dreesen

Foulon

Vanhaecht

, et al (2014) Identifying patient-centered quality indicators for the care of adult home parenteral nutrition (HPN) patients. Journal of Parenteral and Enteral Nutrition 38: 840–846.

Dreesen

Pironi

Wanten

, et al (2015) Outcome indicators for home parenteral nutrition care: Point of view from adult patients with benign disease. JPEN Journal of Parenteral and Enteral Nutrition 39: 828–36.

10.

Ennis

Ablett

Taylor

, et al (2018) The active problem solving of patients dependent on home parenteral nutrition: A qualitative analysis. Clinical Nutrition ESPEN 26: 77–83.

11.

Eriksen

Jørgensen

SMD

Lemming

, et al (2020) Patient characteristics and clinical outcomes in a specialized intestinal failure unit: An observational cohort study. Clinical Nutrition ESPEN 38: 253–262.

12.

Fuglsang

Brandt

Scheike

, et al (2020) Hospitalizations in patients with nonmalignant short-bowel syndrome receiving home parenteral support. Nutrition in Clinical Practice 35: 894–902.

13.

Geransar

Lal

Jeppesen

, et al (2023) Survey of healthcare professionals’ experiences of care delivery in patients with chronic intestinal failure: ATLAS of variance. Clinical Nutrition ESPEN 54: 157–165.

14.

Huisman-de Waal

van Achterberg

Jansen

, et al (2011) ‘High-tech’ home care: Overview of professional care in patients on home parenteral nutrition and implications for nursing care. Journal of Clinical Nursing 20: 2125–2134.

15.

Inayet

Neild

(2015) Parenteral nutrition. Royal College of Physicians of Edinburgh 45: 45–48.

16.

Jamshed

(2014) Qualitative research method-interviewing and observation. Journal of Basic and Clinical Pharmacy 5: 87–88.

17.

Kumpf

(2019) Challenges and obstacles of long-term home parenteral nutrition. Nutrition Clinical Practice 34: 196–203.

18.

Kvale

Brinkmann

(2015) Interview – Det kvalitative forskningsinterview som håndværk. [Interviews: Learning the Craft of Qualitative Research Interviewing.] 3th edn. Copenhagen: Hans Reitzels Forlag.

19.

Lincoln

Guba

(1985) Naturalistic Inquiry. Newbury Park, CA: Sage Publications.

20.

National Committee on Health Research Ethics (2020) Hvilke projekter skal jeg anmelde? [Which projects should I report?]. Available at: https://www.nvk.dk/forsker/naar-du-anmelder/hvilke-projekter-skal-jeg-anmelde (accessed 18 April 2024).

21.

Norlyk

Deleuran

Martinsen

(2020) Struggles with infrastructures of information concerning hospital-to-home transitions. British Journal of Community Nursing 25: 10–15.

22.

Northern Nurses’ Federation (2003) Ethical Guideline for Nursing Research in the Nordic Countries. Oslo: Sykepleiernes Samarbeid i Norden.

23.

Official Journal of the European Union (2016) Forordninger [Regulations]. Legislative acts, Official Journal of the European Union, Brussels, April.

24.

Phelan

McCarthy

Adams

(2018) Examining the context of community nursing in ireland and the impact of missed care. British Journal of Community Nursing 23: 34–40.

25.

Region of Southern Denmark (2017) Samarbejdsaftale om parenteral ernæring. [Collaborative agreement on parenteral nutrition.]. Report, Region of southern denmark, Denmark, September.

26.

Rose

(2009) Livets politik – biomedicin, magt og subjektivitet i det 21. århundrede. [The Politics of Life Itself – Biomedicine, Power, and Subjectivity in the Twenty-First Century.] Copenhagen: Dansk Psykologisk Forlag.

27.

Sowerbutts

Panter

Dickie

, et al (2020) Short bowel syndrome and the impact on patients and their families: A qualitative study. Journal of Human Nutrition and Dietetics 33: 767–774.

28.

Stoner

Schiavone

Kinosian

, et al (2019) Preparing the patient for home parenteral nutrition and for a successful course of therapy. Gastroenterology Clinics of North America 48: 471–481.

29.

The Danish Data Protection Agency (2019) Vejledning, Samtykke. [Guidance – consent.] Report, The danish data protection agency, Denmark, September.

30.

The Danish Ministry of Health (2017) Afrapportering – Udvalg om det nære og sammenhængende sundhedsvæsen [Reporting – Committee on close and coherent health care.]. Report, The Danish Ministry of Health, Denmark, June.

31.

Tsang

Carey

(2015) Impact of home parenteral nutrition on daily life: A qualitative study of eight patients. Nutrition & Dietetics 72: 16–21.

32.

Winkler

Smith

(2015) The impact of long-term home parenteral nutrition on the patient and the family: Achieving normalcy in life. Journal of Infusion Nursing 38: 290–300.

33.

Wong

Lucas

Wood

(2018) Patients’ experiences with home parenteral nutrition: A grounded theory study. Clinical Nutrition ESPEN 24: 100–108.

34.

Zahavi

(2003) Fænomenologi. [Phonomenology]. Frederiksberg: Samfundslitteratur, Roskilde Universitetsforlag.

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