New Zealand hospice staff perspectives on ‘Xcellent Gowns’ for big bodied palliative care patients: a qualitative study
Jazmin Phillips 1 , Emily Wood 2 , Tanya Loveard 3 , Eileen McKinlay
4 , Carol MacDonald 5 , George Parker 6 , Lesley Gray 2 *
1 University of Otago, Christchurch, New Zealand.
2 Department of Primary Health Care & General Practice, University of Otago, Wellington/Te Whare Wānanga o Otāgo ki Te Whanga-Nui-a-Tara, Wellington 6242, New Zealand.
3 Mary Potter Hospice, Wellington, New Zealand.
4 University of Otago, New Zealand.
5 Masterton, New Zealand.
6 Victoria University of Wellington, New Zealand.
Journal of Primary Health Care 15(3) 238-245 https://doi.org/10.1071/HC23009
Published: 29 May 2023
Abstract
A handful of reports detail efforts to redesign traditional hospital gowns to address common concerns related to patient comfort and privacy for big bodied patients. Results suggest that improving gown design has the potential to improve both the patient and carer experience and satisfaction of care.
This study aimed to ascertain the utility of gowns purposely designed for big bodied patients (named Xcellent Gowns) from a staff perspective.
Qualitative semi-structured interviews were conducted in 2022 with 14 hospice staff members. Interview transcripts were uploaded to DedooseTM. Data were analysed utilising reflexive thematic analysis according to a six-phase process including data familiarisation, iterative data coding, and theme development and refinement.
The qualitative analysis of the interview data identified four main themes: (1) the gown experience, (2) fit-for-purpose, (3) love and dignity, (4) design principles. Each theme is presented and discussed with illustrative quotes from participants’ interview transcripts.
The perspectives of the staff participants in this study confirm research findings from other healthcare settings, that the patient and carer experience may be improved through focused redesign of this vital item of patient clothing.
Keywords: body size, equity, palliative care, qualitative study.
| WHAT GAP THIS FILLS |
| What is already known: The one-size-fits-none design of most gowns is not fit for purpose and can negatively impact patient well-being and increase distress. The environment of ill-fitting patient wear and equipment can deliver micro-aggressions towards big bodied people. |
| What this study adds: This qualitative study, the first in New Zealand, makes a valuable contribution to the limited research and discussion relating to end-of-life care for big bodied people and more generally to the role a patient’s gown plays in the quality of the patient care experience. |
Introduction
The ‘hospital’ gown has become a ubiquitous symbol of patient vulnerability, diminished identity and loss of dignity.1–3 The one-size-fits-none design of most gowns is not fit for purpose and can negatively impact patient well-being and increase distress.4,5 The gown has received scant attention in scholarly research and narrative, yet it is vital to patient comfort and dignity.6 With increasing emphasis on patient-centred health care, there is an opportunity to improve the patient experience through the focused redesign of this widely used item of clothing.4,7–10
A handful of reports detail efforts to redesign traditional hospital gowns to address common concerns related to patient comfort and privacy.2,7–11 Overall, the results suggest that improving gown design has the potential to improve both the patient and carer experience and satisfaction of care.
This may be especially true for big bodied patients (BBPs) who frequently encounter physical barriers to treatment, from too-narrow chairs, beds, and examination and operating tables to under-sized gowns.12 The term BBP is not applied as a euphemism for fatness. BBPs are commonly described as having obesity although such disease framed terminology can be viewed as harmful to big bodied people.13 BBPs may also be classified as bariatric, a term commonly used by healthcare providers to describe care of patients whose body mass is 40 kg m–2 and above.14 Yet this term is not uniformly agreed or used by BBPs, the general public or health staff.15 While the global fat community have reclaimed the word fat as a descriptor, the term has not yet been normalised among health staff and the healthcare setting16 and continues to be viewed as a stigmatising term by many.13,16
In a study of critical care for BBPs, over half of the intensive care unit nurses reported difficulty finding appropriately sized patient gowns.17 Ill-fitting gowns have also been framed as a form of micro-aggressive fat phobia in maternity care.18 A case study of the palliative care of a BBP reported that the patient’s weight negatively impacted privacy, dignity, moving and handling and hospice transfer.19
We aimed to ascertain the utility of gowns purposely designed for BBPs (named Xcellent Gowns) from a staff perspective. This article presents the experience and results of qualitative interviews with palliative care staff about the design and utility of a recently introduced gown style called Xcellent Gowns for BBPs in a New Zealand (NZ) hospice setting. Now that COVID-19 visitor restrictions are over, a user-centred sister study is underway with BBPs to evaluate the experiences of being offered and wearing Xcellent Gowns in the same hospice facility. Recruitment is ongoing.
Xcellent Gown Project
In 2018, Mary Potter Hospice (MPH) staff in Wellington NZ (the then inpatient occupational therapist (TL) and the volunteer manager (TO’C)) were concerned about the lack of appropriate clothing for BBPs receiving hospice care. Their search for ‘off-the-peg’ gowns established that there were few if any garments that met the requirements for maintaining patients’ dignity and comfort while enabling accessibility for the range of health cares. Commercially available disposable bariatric patient gowns made of a paper product sourced by the author LG, with an edge-to-edge fastening that created ‘gaping’ holes, were deemed unsuitable for in-patient daily wear.
It became clear that bespoke gowns would be needed for BBPs receiving palliative care, and thus the ‘Xcellent Gown Project’ was started. The name Xcellent Gown was coined by the MPH staff to convey the gowns were both large and excellent. MPH staff partnered with VInnies Re Sew (part of the Society of St Vincent de Paul), a volunteer sustainable sewing initiative focused on upcycling and re‐purposing of textiles, to create an attractive smock design that could work for patients who spend a lot of time in bed or in a wheelchair.
Aligning with the principles of co-design20 within health system improvements, an MPH patient gave equal input into the design and then trialled the prototype gown and wore the final version, with input from families, carers and staff. Sara (named with permission of family) said she had pretty much run out of clothes and the gowns were practical to wear given the impact of medication resulting in swollen ankles and the need to use a hoist (Fig. 1). ‘There are big pockets to fit a pain-relieving pump so you can maintain your dignity a bit. The buttons make it easy to get on and off, and there are summer and winter fabrics to keep you comfortable’ (Fig. 2).
Fig. 1 shows a photograph of Sara, in the day unit wearing one of the Xcellent gowns while baking a cake. Sara liked this photograph and consented to its use to promote the development of the gowns prior to her passing. Sara’s family also confirmed their agreement to Sara’s wishes.
After consultation with patients and hospice staff, further refinements were made and two primary styles were produced by Vinnies Re Sew. One style was bespoke for those unable to mobilise and had a button opened back for comfort and cares. A second gown was styled more akin to a smock for those mobilising around the facility.
Positive anecdotal feedback from patients and staff was encouraging but more formal evaluation was needed. MPH sought support from staff at the University of Otago, Wellington to lead a qualitative research project. This is detailed below.
Methods
As researchers working with groups often marginalised in society, knowledge creation was framed in the context of a pragmatic approach advancing community and social good21 and asked the question ‘will this work for the study population?’. The principles of co-design20 involved BBPs, family and hospice staff. This aligned well with the field of fat studies, where fat epistemology requires that fat people themselves create and add to knowledge.22 Researchers in this study included some who are big bodied people themselves. TL worked for hospice and the remaining authors worked in health service delivery research. LG and GP were both Fat Studies researchers.
For reflexive thematic analysis, as few as 6–10 in-depth interviews may be involved although there is no optimal number.23,24 For this study, given the range of staff involved in patient care, time and resources available we aimed to recruit a minimum of 12 staff participants from across three main staff types (healthcare assistants, registered nurses, allied health professions). TL, supported by EMcK and LG, approached MPH management and research group to outline the project and seek permission to invite MPH clinical staff to consider participating in a semi-structured interview. TL and LG made an oral presentation about the project to the MPH Research committee. Following approval by the committee to proceed, TL provided a recruitment poster to MPH staff, and staff who had worked with patients wearing the gowns were invited by TL to participate and were provided with the information and consent forms for this study. Consenting staff members' contact details were provided to the interviewers (JP and EW) who arranged and conducted the interviews.
Ethical approval
Ethical approval was obtained from the University of Otago, Wellington (reference: 21/010).
Data analysis
Interview transcripts were uploaded to DedooseTM, a web-based qualitative and mixed-methods data analysis application that supports efficient coding, recoding, and grouping of data (https://www.dedoose.com). Data were analysed utilising reflexive thematic analysis of staff views, experiences and perceptions relating to the Xcellent Gowns according to a six-phase process including data familiarisation, iterative data coding and theme development and refinement in order to identify patterns in the data important to the utility of Xcellent Gowns from a staff perspective.24 Each transcript was read and coded into general categories by CMcD before the data as a whole were reviewed by CMcD and LG to identify themes which were then tested and verified by authors and refinements in the wording and quote selection made.
Results
Fourteen staff who had cared for patients wearing the Xcellent Gowns consented to take part in qualitative semi-structured interviews conducted by JP and EW using telephone or Zoom videoconferencing. Just under half of all healthcare assistants, a fifth of all nurses and two-thirds of the allied health staff employed by MPH participated (Table 1). The interviews undertaken between January 2022 and May 2022 followed a conversational style to support participant self-expression (see schedule in Appendix 1) and were 10–20 min in duration. Interviews were audio recorded and transcribed verbatim. One interview audio recording failed, therefore 13 complete interviews are included in the analysis for this article.
| Participant characteristics | N Employees | N Participants | |
|---|---|---|---|
| Role | |||
| Healthcare assistant | 14 | 6 | |
| Registered nurse | 27 | 5 | |
| Allied health (occupational therapy, social work and physiotherapy) | 3 | 2 | |
| Stated gender of participants | |||
| Woman | 12 | ||
| Man | 1 | ||
| Ethnicity of participants (grouped due to small numbers) | |||
| NZ European and/or Cook Islander | 10 | ||
| Māori and/or Pasifika | 3 | ||
The qualitative analysis of the interview data identified four main themes: (1) the Xcellent Gown experience, (2) fit-for-purpose, (3) love and dignity, and (4) design principles. These are presented with illustrative quotes from participants’ interview transcripts (identified as P1–P13).
Theme one: the Xcellent Gown experience
Interview participants discussed the general use of the new gowns in terms of the numbers and types of patients they were worn by, and how gowns were selected for patients. Participant views were based on their own experience with the Xcellent Gowns and their observations of other staff using them. Some shared their recollections of their most recent BBPs and/or particularly memorable experiences, such as a long stay patient who made significant use of the gowns. Staff experiences in this study related primarily to the back-opening style with patients wearing these no longer able to mobilise. Participants reported varying involvement in caring for patients using the gowns. This ranged from caring for 2 or 3 patients up to about 15 patients over a 3–4 year period, and from infrequent use to almost constant use. The gowns were worn by all genders and across a range of ages.
Having a good number of both styles of gowns available meant staff were able to provide patients with a fresh, clean gown whenever needed and to choose from a variety of colours and patterns.
Most of the people that had [worn] them over the last year or so have been bedbound, yeah. So they’re perfect for that. (P3)
Really [just] used the ones with the back opening. But then. I guess that’s ‘cause I’ve only really had bariatric [big bodied] patients that are bed bound. (P7)
Staff tended themselves to select the gowns for each patient from available stock, but involved a family member or the patient, where they were able to indicate a preference. Many patients were not in a position to choose the colour or pattern on gown to be worn because of terminal decline/cognitive and/or speech limitations, or because of access restrictions to storage areas.
… the patient preference and what we had available to hand …. Yes, I think we’ve got a bit of a range. And we often show them … so it would simply say what about this one or that one and they will choose a colour. (P10)
Theme two: fit-for-purpose
Participants unanimously believed that the Xcellent Gowns made a difference, that they were useful, even ‘awesome’ or ‘fantastic’ and that they provided a valuable clothing option for their BBPs.
What I love about the gowns is that they allow us to care for everyone of all shapes and sizes and not just (say) … we don’t have what fits you. (P4)
Six participants reported receiving positive feedback from other staff members, as well as patients and/or family members.
Oh, they’re a hit. And the staff think they are great … they really work …. I’ve never had one negative remark ever …. All positive feedback … one said she wish she had them at home … she just thought they were marvellous. (P3)
She didn’t speak this lady … but her face just lit up and she was just a joy and we gave her such beautiful care with them you know, the whole package. (P2)
All participants commented that the Xcellent Gowns were easy to use, and the shape, size and back opening style minimised multiple handling manoeuvres including getting the gown on and thus reduced the discomfort for patients. They felt that the gowns were much better than standard hospital gowns or having to improvise by cutting down the back of the patients’ own clothes or using or modifying donated items that were not suitable, especially for those bedbound.
… they’re really good … not pulling them over the head and trying to get it down their body …. Yeah, it’s just easy to get on and off. That’s that was what we were looking for … and the size you know, the right size. (P8)
I find them really helpful … much more fabric and space to work with so … it makes it a lot easier for us, but it makes it a lot easier for the patient … they can tell when you’re … trying to wrangle them into something that’s not quite the right size for them …. (P7)
Yeah, they were easy …. Especially if they (patients) were stuck in bed – it was easier to get it onto them. Than having to roll from side to side to try and get a T shirt (on) or using a cut up T shirt which we use for quite a few patients who are bed bound. (P6)
Half of the participants specifically noted that the Xcellent Gowns were more comfortable for patients.
… most of the other things they had weren’t comfortable …. they (Xcellent Gown) didn’t look tight they looked … as though they were more comfortable for them in bed. (P5)
When asked if there were any issues with physical pressure points for patients wearing the gowns, all participant said they didn’t believe that this was an issue with the Xcellent Gowns.
You know … they don’t stress any part of the body. (P11)
The other nice thing about it was the neckline as well, so it had that little bit of breathability it wasn’t cutting into anyone’s neck or anything. And just in regards to some access (to subcutaneous pumps) lines and things. So if there was any subcutaneous lines (in) the chest or the arms, we have easy access to that as well. (P9)
Theme three: love and dignity
All but one participant felt that one of the major advantages of the Xcellent Gowns was providing a means of preserving patient dignity in a way that they would have struggled to do with standard hospital gowns, even those commercially designed for BBPs but had the edge-to-edge fastenings that can gape. The Xcellent Gowns provided good coverage to avoid unnecessary exposure of a patient’s body. One participant remarked that the gowns weren’t ‘exactly decorous’ but that comfort was more important than that (P10).
… you know, its the smallest things that make a difference. Yeah, feeling secure and looking pretty and having your bits covered up and being able to still be half covered when we do cares and things like that, I think they really appreciate that. (P3)
They’re [a] fantastic idea …. Because we were able to offer them something that was able to cover their bodies and keep their dignity yeah. And especially bariatric patients. A lot of them wouldn’t come in with a lot of clothes you know we don’t like to cut up their own belongings and things like that. So having that on offer for the patients so there’s still feel, they’ve still got their dignity with them. (P6)
Half of the participants spoke about how the Xcellent Gowns helped, in part at least, to normalise the patient experience and provided more individuality and style compared to hospital gowns.
We didn’t have to leave them in a hospital gown … it made it more dignified, more comfortable and kind of normalized. Maybe not normalized, but contributed to it (so) feeling a little bit more normal for them yes. (P7)
Some participants believed that because someone had made the Xcellent Gowns especially for hospice patients, this sent an important message to both patients and staff that MPH care.
That somebody had taken the time to sew something special. You know … I think that that could feel they could feel a bit more cared for, just in a very subtle way, you know that that we’ve got those gowns there. That are the right size and it’s a caring feeling that maybe they might get from the fact that they’re there, yeah? (P11)
Theme four: design principles
The general consensus was that in addition to being fit-for-purpose, and useful, the Xcellent Gowns were well made, and were indeed excellent, even beautiful. The wide range of colours and patterns, including Pacifika designs, was frequently mentioned as a very positive factor.
Two participants commented that it would be good to have more gender neutral choices in terms of colours and fabric designs. This may have been related to the available colour and fabric designs of the stock each facility had, which two participants felt were more oriented towards women. Other participants felt that the gown design was appropriate for men whereas one participant with experience of men wearing the gown was especially aware of the lack of gender neutrality in colour and fabric design.
You know, the only choice you may choose … was perhaps what colour to put on a male. (P12)
Quite a big boned fella and … it fitted him perfectly …. He was so happy that we had different varieties of colours and stuff and he was happy with that and his wife was blown away by it too. (P13)
None of them look really appropriate for men …. Yeah, and like, they’re quite ‘pretty’. I mean, yeah. … it would be really cool if we had some for men as well. (P3)
While four participants thought the Xcellent Gowns were just that, perfect and needing no further refinement, others had suggestions for improving the gowns. Six participants suggested that some longer versions of the gowns would be useful.
Also if some of them could be longer. So if they’re in bed and toss the blanket off you can’t see … whatever they are wearing down below. (P3)
I know for the ones that we’ve got, they suit patients that are more bed bound. So maybe (a longer) length for ones that are still sort of mobile. I mean, you know when you’re walking around … just give them their dignity you know. (P6)
Five participants commented that a wider choice of fabric would also be useful, especially lighter, cooler fabrics as some patients got too hot in the gowns made with heavier fabric.
Some of them are quite heavy cause its quite warm in here. Yeah and you know everyone has a different temperature. So I guess a mixture … of different fabrics. (P1)
Most of the Xcellent Gowns used by participants fastened at the back with buttons. Almost half of participants commented about the method of fastening the gowns, with three participants saying the buttons worked well and were easy to use. Velcro was also suggested by two as an option to consider.
The buttons are generally quite big and … they seem to be quite well made, so they button and unbutton really easily. (P11)
they have buttons up and down the back, which is very sensible. And so the only … suggestion I would make would be some velcro up and down the back sometimes would be quite useful. (P10)
Discussion
This qualitative study makes a valuable contribution to the limited research and discussion relating to end-of-life care for BBPs, and more generally, to the role a patient gown plays in the quality of the patient care experience.
The partnership with and perspectives of the participants in this study confirm previous research findings from other settings2,7–11,25,26,20 indicating that the patient and carer experience may be improved through focused redesign and creation of this vital item of patient clothing.
The general consensus among the hospice staff interviewed was that the Xcellent Gowns were not only useful and fit-for-purpose, they had positive benefits for both patients and those caring for them. In time the gown creators aim to provide a larger stock of gowns including those that can be utilised in the community for patients at home.
The Xcellent Gowns were made specifically for big bodied MPH in-patient unit patients. Their design meant that they were an appropriate size and easy to use, especially for those patients confined to bed. This in turn minimised patient handling and associated discomfort. The design also meant that the Xcellent Gowns afforded a greater degree of dignity and privacy than other clothing options, including standard hospital gowns.
There was a strong belief among MPH staff that the Xcellent Gowns assisted them in maintaining, not only dignity, but also some semblance of ‘normality’ and individuality for their patients. This is a core aim in palliative care. It has been suggested that allowing patients to wear their own personal clothing would better provide individualised and person-centred care.27 This study shows using the patient’s own clothes was frequently not possible or practical when patients were cared for in a bed. Rather, the Xcellent Gown project has highlighted the value of user-focused principles where both staff and patients’ views are considered to ensure fit-for-purpose patient clothing options for palliative care.
In today’s society we have an ever growing number of BBPs including those needing end-of-life care, and with this comes its own unique set of opportunities to address fat stigma and discrimination and to remove barriers to equitable health care for BBPs. Ill-fitting hospital gowns are just one part of the broader discrimination against BBPs in health care.28–31 The Xcellent Gowns project gives an opportunity for a hospice service to signal and show that BBPs are valued, regarded and welcomed and that their comfort and dignity are a priority. This seems particularly critical in a hospice setting where health care for some can be undertaken over a prolonged period of time.
Study strengths and limitations
Strengths of this study are that it is one of the first to ask hospice staff, including those from a range of disciplines and giving different sorts of care, about the utility of a bespoke gown for BBPs.
This study is limited to the hospice that created the gowns, although it is also a strength that staff input was sought in the early stages of gown development and implementation.
Conclusions
The needs of BBPs, particularly in relation to the use of gowns, are often not specifically catered for in healthcare environments including palliative care facilities. Attending to patient comfort in offering a suitable sized and styled gown can potentially enhance the care and dignity of BBPs as well as making it easier for staff to give respectful care.
This study shows the potential for BBP gown styles to be used in hospices and these will now be promoted for use by other hospices and other similar facilities including those with physical disability where moving and handling can be difficult. It is hoped to further develop the gowns based on staff and patient feedback and re-evaluate their utility with a view to making the Xcellent Gown patterns available in the future.
Data availability
The data that support this study cannot be publicly shared due to ethical or privacy reasons but may be shared upon reasonable request to the corresponding author if appropriate.
Declaration of funding
LG, as the principal investigator, received a small Dean’s grant from the University of Otago, Wellington to assist with completion of interviews and writing up, otherwise this research received no specific grant from any funding agency, commercial or not-for-profit sectors. The MPH and University of Otago, Wellington researchers gave their time voluntarily. Final year medical students (JP and EW) participated in this research during their domestic elective module when the COVID-19 pandemic prevented overseas elective engagement.
Acknowledgements
The authors sincerely thank the staff of MPH who gave their time to participate in individual qualitative interviews and the Xcellent Gown wearers without whom this project would not have been possible. They thank Therese O’Connell (TO’C), volunteer coordinator with MPH who worked alongside TL and Caroline O’Reilly at St. Vincent de Paul’s Resew Project to design, source fabrics and all the volunteers who gave their time to sew the prototype and initial gowns, in particular Tom Pledger who made the original pattern and continues to make the gowns in a volunteer capacity. The authors acknowledge and remember Sara, a very keen early adopter of the Xcellent Gown. The authors also thank the Research group at MPH for listening to their proposal and being willing to allow this project to proceed. Thanks also to the hospice shops where the fabric, mainly cotton, was ethically sourced. Thanks to Essential Helpcare for their support concerning disposable bariatric patient gowns. The authors acknowledge the support of Anna Ormond, Reference Librarian, Wellington Medical and Health Sciences Library, University of Otago, Wellington, for their contribution to the literature search and Luke Pilkington-Ching for assistance with gown photographs.
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Appendix 1. Semi-structured interview schedule
Name of participant:
Role at MPH:
Gender:
Ethnicity:
Background: The gowns are a prototype made by volunteers to enable patients to feel comfortable while being cared for in the Mary Potter Service. There are two versions: one designed to be worn in bed which has a back opening to easily enable added comfort for patient and delivery of personal cares, and one designed to be worn while mobilising in the facility. We would really value your thoughts on the gowns, and if needed how they might be improved.
Approximately how many different patients have you been involved with who have each worn a gown (and if more than one, interviewer to capture the different circumstances for the different patients).
When did the patient wear the gown?
Was the patient mobile around the facility or mainly in-bed?
How did you decide which version to offer the patient?
Which version did they wear (gown for in bed or gown for mobilising) OR both?
Was the style(s) the patient wanted available (in stock)?
Style of gown Y/N
Fabric (?right weight of fabric)
Pattern/colour (?patient had suitable choices)
Did the patient comment on being able to choose the version and fabric of gown? If so, can you recollect their comment?
Please tell us how the version designed for care in bed worked for giving personal cares?
Please comment on: the ease of opening the gown, the weight and type of the fabric, warmth/coolness, the roominess of the gown and whether any part of the gown created pressure points?
Please tell us from your perspective how the version designed for mobilising in the facility worked for the patient?
For any version worn, please comment on: overall look, roominess, length/modesty, suitability for gender – design, shape, colour etc.
What if any difference in your opinion did the gown(s) make to the patient’s experience in the facility?
Do you feel the patient’s mana/dignity was enhanced by wearing the gown?
Was it satisfying to be able to offer choice to the patient?
What if anything did you not find helpful about the gown?
Any other comments?
