Exploring stakeholder experiences of interprofessional teamwork in sex development outpatient clinics

ABSTRACT

Adopting an interprofessional team approach to care of the child with rare conditions that can affect sex development (DSD) has been advocated by a consensus document within the last decade. In the United Kingdom, the approach appears orientated towards an interprofessional model with the integration of separate professions working in single consultations with families working collaboratively to focus on care using a person and family-centred lens. This concurrent mixed-methods UK study using questionnaires, observation, and interviews aimed to examine professionals’, patients’, and parents’ expectations and interactions during DSD clinic. In adapting a model of patient and family-centred care, we were able to analyse the dimensions of care at the micro-, meso-, and macro-level. The micro captured the unique nature of the bio-psychosocial aspects of DSD, professional capabilities, and communication. The meso examined shared learning and objective setting as well as aspects of knowledge translation. The macro focused on the operational aspects and the emancipatory knowing embedded within DSD care. Complete data from participants (n = 105) were analysed from 47 outpatient clinical consultations and are reported as numerical data, tables, and participants’ voices. Interestingly, all participants identified topics or concerns that were absent in the dialogues during consultation. Our findings informed the adaptation of a patient-focused model, thereby supporting the development of the concept of patient-centeredness, integration, and collaboration. This framework may serve as a platform, embedding existing evaluative tools and acknowledging the patient and professional partnership necessary in DSD care.

KEYWORDS:

• Collaboration
• disorders of sex development
• interprofessional working
• mixed methods

Introduction

In 2005, the Chicago Consensus meeting (Hughes, Houck, Ahmed & Lee, 2006) brought together a wide range of clinicians and patient advocates to improve the quality of life of patients with differences (or disorders) of sex development (DSD). Previously described as intersex, DSD was used as an umbrella term for patients with a congenital condition that affects sex development as a result of either a chromosomal, gonadal, or anatomic sex difference (Ahmed et al., 2015). Strongly outlined in the consensus statement is the recommendation that cooperative and planned care be considered a moral construct of interprofessional teamwork, and as such be central in managing and developing local, national, and international pathways and guidelines to support patients and their families with DSD. Endorsed by multiple global endocrine organisations (Lee et al., 2016) and paramount to the success of these programmes is the inclusion of multiple healthcare professionals (i.e., endocrinologists, paediatric surgeons, paediatric urologists, gynaecologists, geneticist, nurses, psychologists) as well as patients and families and DSD support groups and networks. Within the context of this article, interprofessional care is the provision of comprehensive patient-centred care by multiple healthcare professionals (i.e., medical staff, nurses, psychologists, social workers and patients and families) who ‘work collaboratively to deliver the best quality care’ (WHO, 2010, p.13). Furthermore, a team that delivers interprofessional care incorporates individual professional approaches into a single consultation, commonly an outpatient consultation. This approach can facilitate continuous learning from each other by sharing an identity and a common goal to improve health outcomes (Jessup, 2007). Interest and motivation in interprofessional teamwork within the field of DSD continues to mature. How teams deliver, understand, evaluate, and operationalise care within the outpatient clinic consultations (OPC) remain vague therefore exploring professional, patient, and families’ experiences are necessary to inform practice.

There is an increasing body of evidence that person and family-centred care are important within the framework of patient safety, inclusion, and quality (Fox & Reeves, 2015). Person and family-centred care (or patient-centred care) remain a commonly described approach in care delivery yet how this is realised and enacted within a team approach to DSD care is only recently emerging within the sphere of policy and decision-making (Dreger & Herndon, 2009) and ethics (Feder, 2014). Collaboration is multifaceted, with the magnitude of complexity increasing, when patient outcomes are unknown, new junior members are joining teams at regular intervals, and variations in contextual environments exist (Hickey, 2012). This raises two key areas that could be helpful to explore in greater depth: understanding the essential characteristics, integration, knowledge, and broader collaborative functionality of interprofessional teamwork within DSD management as well as examining the person and family-centred experience for all involved.

Given the multiple dimensions, perspectives, and complexities of interprofessional teamwork, this study focused on capturing data as it happened, in order to explore and understand the expectations and experiences of healthcare professionals, children, and their families of DSD clinics. We considered the antecedents of person and family-centred care as described by Zill, Scholl, Härter, and Dirmaier (2015) in reference to the dynamics within the outpatient department (OPD) environment and the outpatient consultation (OPC). Furthermore, we draw broader conclusions about the possible future direction for such complex clinics.

Background

The goal within any experienced collaborative team is to work towards promoting consistent quality from a range of professionals working with families, to redefine problems, and open dialogues (Fox & Reeves, 2015). Furthermore, within a framework of person and family-centred care (PFCC), interprofessional teams need to work as a coalition, imaginatively exploring and creating ways to share their unique tacit knowledge in ways that can be meaningful interprofessionally and with patients and their families. While those involved in interprofessional teamwork will share some common knowledge and skills, they will also contribute discrete differences such as their philosophical beliefs, attitudes, intentions, and motivations (Hall, 2005; Morgan & Ogbonna, 2008).

It is recognised that professionals’ attitudes are influenced by their education, training, and opportunities for learning across professions (Cox, Cuff, Brandt, Reeves., & Zierler, 2016). Despite variation in interprofessional education and prior professional training, the strength and quality of collaboration as evidenced in teamwork are not a new phenomenon (Øvretveit, 2009). Establishing team membership, which is inclusive of the patient and their family within a PFCC model, may facilitate an understanding of the collective responsibility of caring for a child with DSD with a view to enhancing decision-making and inclusivity.

The challenges that patients with DSD face are complex since they are comprised of the physical and psychosexual needs (Meyer-Bahlburg, Khuri, Reyes-Portillo, & New, 2016), human rights within the framework of perceived normalcy of gender and heteronormativity (Carpenter, 2016), social and ecclesial hostilities (Cornwall, 2015) and psychosocial and psychological lifespan difficulties and cultural challenges, that is. sexism, acceptance, and stigma (Dessens et al., 2015). While there is agreement that DSD care requires an experienced interprofessional team (Hughes et al., 2006, p.555), what constitutes an experienced team and how this is differentiated from other types of working is unclear. While the professional composition of the team is described elsewhere (Gomez-Lobo, 2014; Streuli, Köhler, Werner-Rosen, & Mitchell, 2012), variation exists globally (Kyriakou et al., 2016). An online study examined the status of the consensus statement implementation across Europe (Pasterski, Prentice, & Hughes, 2010). While findings suggested that around a third of European centres used a collaborative approach, what teamwork meant and if ‘comprehensive’ inferred patient and family-centred care was unclear (Pasterski et al., 2010, p.622). More recently a review by Lee et al. (2016) of the consensus document suggested that for any team to expect to orientate towards a PFCC approach, by virtue of being an experienced team, does not mean this will automatically happen in practice. Having a team understanding of what continues patient-centred care can be challenging since there remains a lack of clarity of the concept (Van Dulmen, 2003), and there is no globally agreed definition (Zill et al., 2015). Furthermore, measurements of the relationship between experience, satisfaction, and outcomes using a person and family-centred approach, while likely positive, are difficult to compare as a result of the varied tools and interpretations used (Rathert, Wyrwich, & Boren, 2012). Complicating variables such as an individual professional consultation style, the patient preferred and enacted behaviour and the synchronism between the professional, child, and family (Kiesler & Auerbach, 2006) all have the capacity to influence engagement and sway the complementary nature of collaboration that is possible in PFCC. The model as described by Zill et al. (2015) aligned the key dimensions inherent in what was described as patient-centred care to three categories: enablers, activities, and principles (Zill et al., 2015, p. 10). While their conceptual model highlights the interrelatedness of these three dimensions, we have further framed them within the context of micro-, meso-, and macro-levels of analysis as an approach to levelling as a novel way of studying the translation of PFCC from natural capability to knowledge translation and broader collaborative engagement. Therefore, within this context, the micro-level considers the individuals engaged in the IPT experience, the meso-level the interactions and community within the outpatient clinic setting, and finally, the macro focuses on wider policy, frameworks, and systems. This model is summarised in Table 1 to include the dimensions pertinent in DSD interprofessional teamwork.

Table 1. Model of patient-centered care as adapted from Zill et al. (2015) and Scholl et al. (2014). Note the core elements are replicated within the framework of micro-, meso-, and macro-levels of engagement.

Categories	These do not all happen in a linear fashion but as a dynamic and iterative process. The movement is both horizontal and vertical at various points in the IPT interaction.
Micro-level enablers[Capability, courage and confidence]	Patient as a unique person dignity/rights to information and respect	Bio-psychosocial perspective Involvement of family and friends	Essential characteristics of professional(s)	Clinician–patient/parent relationship Shared decision-making Communication
	Patient/parent information Environment	Patient/parent involvement in emotional support
Meso-level activities[Integration of knowledge]	Professional-patient–parent communication—shared objectives and measure outcomes	Interprofessional education—patients as educators	Integration of medical and non-medical care (to families and each other), risk management	Teamwork and team building—knowledge translation
Macro-level principles[Broader collaboration]	Access to and continuity of care—transparency of information	Structured protocols, shared operating frameworks, managerial commitment	Patient/parent empowerment—support groups and peer support reference networks	Wider collaborations across organisations, research activities, lobby for change in healthcare reform, social policy, and emancipatory knowledge

Italics highlight author’s adaptation for application to DSD IPT working patterns with reference to the study findings and the WHO (2010) Framework for Action on Interprofessional Education & Collaborative Practice.

Methods

A concurrent mixed methods approach using questionnaires, observation, and semi-structured interviews was chosen for this study. The aim of which was: to better understand how interprofessional teamwork in DSD care is realised by exploring how children, young people, their parents, and professionals experienced DSD interprofessional outpatient care within the United Kingdom.

Recruitment and sampling

Twelve sites, identified via the DSD registry, were approached to participate. The team lead at each participating site agreed to be the local collaborator. Each site was asked to send out a letter, and patient/parent/professional information sheet outlining the study 2 weeks prior to the planned outpatient clinic.

It was anticipated that all children, young people with a DSD, their parents, and professionals could participate in the study. Each team leads had knowledge of the parents and young people and would indicate to the research team if, in their expert opinion, the family should not be approached. Participants younger than 16 years of age provided assent, but their parents had to provide written consent for them to participate.

Data collection

Collecting data in different ways at the different stages, before, during, and after the consultation, was crucial in exploring the perception and expectations of the outpatient clinic as well as providing opportunity for all those involved to reflect on the consultation (participants and researcher). We considered it would not be possible, at this stage with many unknowns, to combine, reconcile, and merge the views of reality (Sandelowski, 2000) from the participants as each was informed by their own beliefs, attitudes, education, and life experiences. Therefore, the study team considered that a non-mixed methods approach, that is using single psychometric measures could be limiting. This concurs with Lee et al. (2016) in that the effects of diagnosis, management, and interactions on patient well-being depend on a wide range of intrinsic and extrinsic factors which change over time and are influenced by other factors such as parenting, relationships, age, and social values. As such, by using a concurrent approach using mixed methods, we aimed to elicit two or more perspectives of the outpatient clinic experience, thereby expanding the scope of the study (Greene, Caracelli, & Graham, 1989). The study team recognised the role physical environment plays in the quality of interprofessional care when dealing with sensitive health issues (WHO, 2010) and wanted to capture this through observation. We were interested in a naturalistic approach that captured both the activity and influence the clinic had on all participants, that is human behaviour. The team wished to explore how the participants made sense of their interactions, identifying what factors and attitudes served to augment and support the contributions of others in an interprofessional patient-centred space: how this approach transformed knowledge into action with respect for the values and beliefs of patients, their families, and other professionals. Supplemental Table 1 (online only) provides an in-depth summary of all data collection methods.

The format of the questionnaire used a combination of closed and short open-ended questions. The structure and content of the questionnaire were informed by the cleft lip and palate services (NHS 2013, p. 11). Considerations between cleft lip and palate and DSD are not new with the cosmetic aspect of surgery being an anchor point for shared learning (Parens, 2006). The questionnaire was further informed by the self-report version of the Child Health Questionnaire¹ and the Health-Related Quality of Life Measure (Varni, Burwinkle, & Lane, 2005). Two professionals with research and/or clinical experience in DSD care reviewed the questionnaire, and amendments were discussed within the team and applied as agreed.

Observations of the clinical encounter aimed to provide insight into the phenomenon of interprofessional parent–young person interactions, within the clinic setting. Data from the structured observations focused on environment and engagement (Merriam, 2014; Morgan, Pullon, & McKinlay, 2015).

Interviews collected by the research team (psychologist, nurse, and post-graduate psychology researcher), with the participants were semi-structured and focussed on their understanding and experience of the clinic.

Analysis

Questionnaire data were imported to a study-specific Excel spreadsheet. Paper copies remained helpful as source data due to the complexity of several professionals collecting data per individual consultation. Participant comments and researcher explanations that highlighted any difficulties with language or interpretation were documented. The questionnaires and annotations were discussed within the research team.

Observational data were imported into a site-specific Excel spreadsheet. The paper copies used in clinic very quickly became heavily annotated and were reviewed as source documents by the research team. A summative template was developed to record key areas of discussion during consultation; health concerns, psychological well-being, learning and adjustment and physical function.

Three members of the research team, first individually then collaboratively, analysed the qualitative data from the semi-structured interviews using thematic analysis (Braun & Clarke, 2006). Experience-centred data gathered from the professionals’, parents’, and young peoples’ interviews were referenced to the observational data (Hsieh & Shannon, 2005). Initial codes were generated from the data, which subsequently informed the adaptations which are highlighted in italics in the three categories within the patient-centred framework (Table 1). The language and words themselves were of interest, and we paid particular attention to the paralanguage or phrases used by young people to describe themselves or their emotions. In following analysis, each centre was provided with a site-specific detailed summary. A summative example of expected and actual conversations is reported in Supplemental Table 2 (online only).

From the mixed-method approach (pre-clinic questionnaire, observation, and interview), the researchers collected n = 105 complete data sets from professionals (n = 37), parents /children /young people (n = 68: parent n = 48, YP aged 8–18 years n = 20) over 47 consultations. Two centres were visited three times, one centre visited twice, and two centres once. One centre held monthly clinics, and the remaining centres ran clinics between three and five times per calendar year.

Ethical considerations

The lead National Health Service (NHS) Ethics Committee approved the study. Site-specific approval was granted from each centre, and NHS Research Scotland Co-coordinating Centre adopted the project on to their portfolio (UKCRN IRASID128649).

Results

In this part of the article, we present results in the following four sections. Due to the limited number of DSD centres, the results are summative and where necessary descriptive to maximise confidentiality.

Participation and general organisational findings

From the twelve centres approached to participate, five agreed. Those that declined offered the following rationale: two reported patients were involved in other studies; one was undergoing restructuring; one felt it would be uncomfortable to be observed; one was developing their own study around transition and did not wish to over burden their patients; and two chose not to respond.

The research team were requested not to ask four families to participate by the Interprofessional teams. Ten families, parents or young people, declined to participate in the study offering the following explanations: they did not have time to participate; speaking in English was difficult; talking to a researcher could be embarrassing; and three young people reported it “was not for them.” The number of clinical appointments at each centre ranged from 5 to 13 per clinic. There were empty consultation times (n = 17) due to system booking error, families who did not attend or cancelled their appointment. All the conditions seen in clinics were classified as DSD by the consensus statement; the two clinics that had 13 patient slots often included boys with bilateral undescended testicles and complex hypospadias as well as a smaller number of more complex DSD patients.

No professional explicitly declined to participate in the study; however, six chose not to provide consent by either handing back or leaving incomplete study paperwork in the pre-clinic meeting room. Of note, a couple of these professionals completed the pre-clinic questionnaire on the patients they saw, these data were excluded from analysis.

Pre-clinic results

Across the ten clinics, professional endocrinology and genetics were always present (one centre ran one clinic with these two professionals on one occasion). For the nine remaining clinics, urology and psychology were also present; junior staffs (trainees) from any of these speciality backgrounds were present in the pre-clinic meetings (which happened before clinic started) or clinic. Gynaecologists were present in seven clinics, while the nurse attended three clinics since only one site had a nurse as a consistent and integral member of the team. Three interprofessional teams linked to adult DSD specialists in urology, gynaecology, and endocrinology.

While the majority of professionals reported knowledge of local or national DSD guidelines, only 8% specified using these in practice. The majority of professionals had been involved in DSD care since their clinics started (range 5–19 years).

Common language between professionals to describe the clinic to other professionals included either: “disorders of sex development” and “intersex” or “specialist clinic for sex disorders.” Only 10% of the parents called the clinic DSD and no young person used this term. Parents and young people were often unsure what to call the clinic or linked it to a specific condition or most commonly the name of a doctor they saw. There were a number of adjectives used by young people that seemed to express their dislike of coming to clinic, for example “stupid,” “crap,” “waste of time,” or they described what that happened to them in the “pull my pants down clinic.”

Across the 47 appointments, 36% of parents or young people reported visiting the clinic for the first time, 13% reported 2–3 visits, 19% reported 3–4 visits, 28% citing many visits, and 4% not sure. All participants expressed a wish to receive information about the clinic prior to their visit with many young people wanting to know “what will happen today?” Ten parents or young people had contacted their psychologist or the nurse before clinic, and all reported how helpful, reassuring, and useful this had been. All anticipated height and weight are to be recorded, with parents of younger children usually expecting examination of their child while no child or young person expected medical photographs to be taken.

The commonly cited topics parents, young people, and professionals believed would be discussed in clinic were similar, and frequently included: hormones, medication, psychological issues, fertility, timing or need for genital surgery, menstruation, chromosomes, and long-term outcome (Supplemental Table 2—online only).

Observation results

The findings from the observational score sheets highlighted that 60% of DSD clinics were situated in the main outpatient general clinic areas. These were often noisy and busy, and all the chairs in the waiting room being occupied at the start of clinic (range 17–40 available seats). Those in smaller annex outpatient clinics were much quieter but still had busy through traffic, usually professionals moving about the hospital. Frequently, there were an insufficient number of rooms for those young people who wanted to talk privately with a specific professional following the joint consultation, usually the gynaecologist or psychologist. Waiting time to be seen by the teams varied from 5 to 75 minutes. The number of interruptions varied from 0 to 5.

All professionals introduced themselves in the consultation and were noted to take turns in asking questions and would ask questions of each other. Professionals would aim to teach the families about their specialist area sometimes drawing pictures to explain anatomy, hormones, or chromosomes. The professional voice dominated the consult (range 10–18 questions) compared to that of younger children (asking 0–5 questions). Consultations times varied depending on the complexity and nature of the discussions (average range 30–75 minutes per clinic). Parents often raised questions in the consult, ranging between 3 and 12 in number. Young people spoke, usually to answer direct questions, with just 20% asking direct questions themselves. Young people and parents expected versus actual discussions noted in pre-clinic questionnaire (Supplemental Table 2—online only) were usually absent in the consult highlighting a change in the entry-point expectations of the consultation. The psychosocial issues omitted from discussion included: sharing information about self with others and coping with difference; self-harm (not common); physical difference; and how to manage this discretely in public spaces (i.e. urinals) and sadness around infertility.

On the six occasions, the genital examinations were suggested to adolescents during the clinic consultation, four refused and reported later at interview they felt both “horrified” and “angry,” while two agreed as they had specific questions, they were curious about (one young woman, who was worried about her genital appearance, spoke with the urologist and gynaecologist) and one young man (with testicular discomfort spoke to the urologist); their parents stayed in the room with their children during examination. When an adolescent chose to be examined, all other professionals were excluded behind the curtain or left the room; the researchers left the room.

Post-clinic interviews

The following section is subdivided into three sections referencing the three categories of patient-centred care: enablers (micro), activities (meso), and principles (macro) as adapted from Scholl, Zill, Härter, Dirmaier (2014; Table 1) as a theoretical framework for analysis. Within the context of our study, the enablers were those actions at the micro-level seen as individually situated revolving around building and supporting capability, courage, and confidence. Activities at the meso-level orientated the knowledge translation and shared learning within the community of team and the family. Finally, principles at the macro-level encapsulated the broader role the Interprofessional team had in promoting access to care, building capacity and exploring policy as well as local, national, and international collaboration.

The voices of the parents, professionals, and young people are used to illustrate context. To respect confidentiality, voices will be referenced as professional, parent (Mother/Father), or young person without identifiers. Voices cross the spectrum of all participants with an effort from the research team to focus on inclusivity resulting in no dominant voice.

Micro-level enabler

The right to respect and understanding in relation to a patient refusal or discomfort at the request to genital examination needs to be considered and weighed with the need for physical examinations. Several fathers reported that their son did not wish to “get examined in front of ladies” and adolescent girls often refused examination. A couple of adolescent girls expressed their unhappiness, questioning what right doctors had to ask this. One adolescent had anticipated this request before clinic resulting in tension between her and her mother about whose permission was necessary: “I told you they were going to try and touch me…. I said No” (young person).

A few parents talked of their disjointed feelings being unsure how to meet their own information and emotional needs whilst protecting their child in the clinic environment; an example was hearing results that would impact on their child’s future life. When professionals discussed test results, parents would often interpret meaning, not wanting to ask too many questions that might leave their child feeling “worried or shocked or scared” (Mother).

The activity of attending clinic reminded many parents of the nature of their child’s life long condition making them feel “sad” or “scared” (Mothers and Fathers). For those parents that had started to share DSD information with their child, they were conscious that there could be an unanticipated disclosure by a professional. This had previously happened to one family and the young woman subsequently described it as her “emotional downfall.”

There were occasions when clinics included extended family, such as grandparents. While professionals recognised this was important, from experience they believed the consultation would take longer and could be more challenging as described by one professional “when you see grandparents in there it’s [more difficult]. They can be a bit fiery” (professional).

Review with professionals familiar to the family was described as very helpful. Several parents and young people commented that clinic was “fantastic,” “brilliant,” or “so much better” when they were meeting professionals they knew. Similarly, professionals recognised that knowing patients “since they were born” was helpful in building a relationship with the family and young person. Parents on many occasions highlighted the need for professionals to use the right words:

Appropriate language is important…[but] when you describe things in too much detail that’s scary but on the other end of the spectrum when you use words which don’t really mean anything you don’t know what’s going on either. (Mother)

Often individual professionals had different ways of sharing information in clinic. Variation in how professionals explained DSD was often reported as helpful. There were several voices from both parents and young people on how they just “got it” when professionals applied different teaching approaches.

Within the clinic setting, a few professionals were at times surprised that parents could not recall information or had misunderstood information from earlier consultations. This generated debate in the professional semi-structured interviews about the “filtering” of information so as not to overwhelm patients and families. One team discussed the merits of this, agreeing that it was difficult to “balance between delivering the best medical service versus the best support” (professional).

Professionals recognised the value of co-creating narratives and described this as “butting in” or “adding little bits.” Professionals believed that while medically “it often needs all of us to explain our parts,” psychologically “how [parents/patients] handle information is going to influence long-term outcome.” This resulted in medical staff acknowledging their limits, for example:

Psychological issues are involved with [DSD]. I couldn’t provide them [parents] with this [team] support [without us all being here (gesture)], I’d be terrified I’d be doing more harm than good. (Professional)

Meso-level activities

For several families, an objective from clinic was to understand specific test results, measuring change over time. The significance of “numbers,” such as hormone or medication levels, was very important to some parents.

Clinic was perceived by some parents as a safe place to learn and question in order to “better understand the condition and test results” (Mother) and “meet the specialist who will have answers” (Mother). Parents rarely reported bringing questions to clinic as one father explained:

We really [don’t] come prepared and there are things you go away and you hadn’t asked and you wished you had asked. (Father)

Half the parents reported being “grateful,” “pleased,” and “satisfied” and they had met with specific professionals such as the psychologist, gynaecologist, or nurse since they had had questions that spanned aspects of medical and non-medical care, such as how to help their child in school.

Learning and knowing “too much too soon” was a balancing act for several mothers and fathers. While some had wanted to “know everything” in the early days, they had shifted their thinking and often parents developed a more pragmatic, containing and risk managed approach over time with several parents suggesting “I’ll cross that bridge when I come to it” (Father).

Interprofessional teams worked together in various ways to prepare for clinic sharing their knowledge, skills, and insights with both junior and more senior staff. Often there were general discussions about which topics or concerns were likely to be raised in clinic as issues based on connection to families. This helped professionals to “really think about what’s going to happen in a consultation.” Professionals described how they had learnt to work together as a team, learning with families as well as developing creativity in the shared space as one experienced professional described:

If you are challenged by someone who has a good understanding of the condition but a different perspective then that helps you develop your own thinking …challenge is healthy and it does change what I do.

Macro-level principles

The nature of the dynamic between family and professionals was influenced by several factors including time: ‘there’s a time pressure because there are other patients waiting’ (Mother). Others reported feelings of being overwhelmed by numerous people in a clinic: “It’s daunting when you are faced with a group of professionals… trying to remember information, who they are… even if they are nice” (Mother). In one team, a representative (psychologist or nurse) had negotiated with the team to visit the family in the community, which was highly valued. One mother positively explained how the nurse supported her to “digested easily and make sense” of the information.

The availability and transparency of written information were crucial in “helping things sink in better” for parents. When only one parent could attend clinic, there was often the dilemma of having to retell the story, which was emotionally difficult and dependent on memory, as this mother shared:

I go home and relay the conversation to people, like my husband and hoping I will remember it all. (Mother)

Frameworks for team collaborative correspondence to primary care and with families after clinic were inconsistent; some centres had a pathway while others could:

Put something on [another professional’s] behalf if it’s simple but if it’s more technical he/she will do a letter. (Professional)

Some parents believed these letters were “too hard to read or understand”; young people reported they did not receive any information directed to them.

After team signposting in clinic, several young people described accessing the Internet but became “confused” about how information related to them.

Professionals reported numerous issues in relation to operationalising the clinic. These included the managerial and planning aspects as well as how to develop and share information resources “when each hospital has its own methods to share patient information.” Furthermore, many recognised the need to evaluate patient outcome and satisfaction with care. Some members of the team-shared frustrations around local and regional organisational support and the barriers to implementing best practice as identified from the consensus document and also how to facilitate broader engagement with DSD networks and registries.

Discussion

The conceptual organisation of a micro–meso–macro framework within the patient and family-centred care model for interprofessional DSD care has the capacity to inform, guide and champion care for young people and their families. The elements within the framework have the capacity to encourage the interprofessional team to recognise the skills and willingness young people and their families need to engage in outpatient clinics. Furthermore, this conceptual approach encourages teams to recognise the value of the clinic as a community in which to facilitate communication and perhaps lobby for wider change. The following discussion situates the framework and the findings from each data collection method into a comprehensive discussion considering levels of analysis, interprofessional teamworking, and patient and family-centred care. A core aspect of how DSD care was delivered focused on the integration of the separate professional approaches coming together in a single consultation with a focus on building a holistic and meaningful approach to collaboration (Jessup, 2007).

At the micro-level, the child and the family were seen as partners in care as well as individuals with specific needs as influenced by broader concepts of gender, normalcy, and exclusion (Carpenter, 2016; Cornwall, 2015). While there was connection between topics that held significant meaning to both families and professionals such as health concerns (Supplemental Table 2—online only), there was also dissonance. Through analysis of the observations and interviews following clinic, we recognised instances where parents had not had the courage to ask for information or advice from professionals, that is the need for pre-clinic information, moderating or wanting details of laboratory results. The capability of all parties to empirically understand the components of team working in any context is challenging (Blue-Banning, Summers, Frankland, Nelson, & Beegle, 2004) and appears to be something that develops over time and with confidence. Familiarity was an important concept for professionals and patients since it appeared to influence communication allowing some self-assured families to challenge professional judgment. The interprofessional ease witnessed during clinic was a result of the emotional work professionals had previously engaged in, such as being considerate of variation in professional background. While several parents believed they had discussed the areas of interest raised on the pre-clinic questionnaire following data analysis, we determined this was not always evidenced. Both parents and professionals struggled to recognise this disparity at the micro-level, which appeared to be influenced by challenges to confidence, environment, and time constraints.

Both the environment as a busy and noisy setting with limited access to quiet spaces as well as the topic of genital examination were sensitive for young people. Their voices, while respected, still caused emotional challenge, which should not be ignored (Liao, 2015), as witnessed in how they described clinic and the emotional interviews afterwards. A recent study by Mayer-Bahlburg et al. (2016) concluded that genital examinations are salient actions reflecting the complexity of stigmatisation, gender normalcy, and inclusivity as well as patient’s rights.

The role of extended family and friends warrants mention since generally grandparents can be a significant source of support to families (Nicholson & Zeece, 2008). Therefore, professionals can respectfully encourage family inclusivity within DSD care by build parent’s confidence to share their worries, which may reduce early isolation by building a community of support. Working together with a family can build confidence to strengthen collaboration, thereby placing the child’s long-term well-being at the heart of care (Margritte, 2012) a core value in patients and family-centred care. While the characteristics of individuals and perceptions of professional roles held meaning for families and the team, concepts of trust and connectedness were viewed as critical elements in orchestrating a more effective clinical experience. Evidence of teams needing respect, trust and honesty, shared beliefs, and narrative leadership are well reported (Chatalalsingh & Reeves, 2014; Hart, 2015); all appear to be meaningful in DSD clinics strengthening both confidence and capability at the micro-to macro-levels. Furthermore, we recognised that professionals, parents, and young people collectively worked to ease tensions and build alliance with each other, thereby promoting confidence. This was demonstrated in the settings where professionals were more self-assured with their feelings about DSD due to having worked in the field for a long time, similar to formative findings by Neilson (1999).

We did at times witness increased questioning from professionals; however, parents and young people were also given opportunities to contribute. Considering the patient–physician match model (Kiesler & Auerbach, 2006) teams could explore patient characteristics and individual practice style with a view to strengthening engagement, which in turn has the capacity to improve informed decision-making and foster confidence. By the nature of having more than one professional in clinic their individual skill sets, tacit knowledge and questioning, was witnessed by “butting in”, this facilitated ‘co-treating’ as described by Kiesler & Auerbach (2006, p. 335).

At the meso-level, shared outcomes and developing understand were important particularly to parents around test results, surgery, and medication. Professionals acknowledged the difficulty parents had with recall of this information. They had the capacity to be flexible and creative in how they shared this knowledge by ‘taking turns’ in providing or reframing information to parents. The families in our study admitted that remembering everything was ‘difficult and confusing’ which challenged their confidence. This should be a prompt for teams to explore alternative ways to share information. Audio recording in paediatrics is not a new phenomenon (Rylance, 1992) and is a highly valued and underutilised approach to co-creating understanding, refreshing memory, and sharing stories (Tsulukidze, Durand, Barr, Mead, & Elwyn, 2014). Also, there is encouraging evidence for patient-targeted interventions to consider coaching as an aspect of teaching and learning with families as well as more junior staff (Haywood, Marshall, & Fitzpatrick, 2006). Since a DSD team approach directly engages and actively involves families in care, shared education and learning have the capacity to be realised in practice (Coulter & Ellins, 2007). While the teams recognised both the challenge and value in sharing summarised information after clinic, how this occurred remained problematic for some. Furthermore, while many families found, it mostly helpful some primary care physicians may continue to find this problematic (Cachat, Marques-Vidal, Girardin, Chehade & Piot-Ziegler, 2014).

The need for many of the younger children and adolescents to talk before clinic and understand what could happen in clinic mirrors evidence from other specialist clinics (Lowes et al., 2015). For several children learning to adjust to life with a DSD had specific issues, that is using public toilets. Self-harm and both starting school and feeling safe in school were issues that impacted on the psychosocial life of young people. Rarely, were these issues expressed in the clinic dialogue. While taking these conversations outside of the team for further individual work with specific professionals is reasonable, the moments of shared learning about the significance of stigma, isolation, and gender in patients’ lives should not be lost to the rest of the team. This impacts on professional reflexivity and the development of clinical wisdom (Benner, Kyriakidis Hooper & Stannard 2011).

At the macro-level, at times some parents were cognisant of waiting their turn to be seen in clinic as well as only having access to the team on an annual, or longer, basis. Their need to ask all necessary questions was challenged by their confidence to do this succinctly. Such constraints heightened parents need for access to transparent, consistent information about their child to better prepare them for the clinic. All participants reported the value of information and the need to be adept at understanding or applying it to their individual circumstance. Several parents shared their lack of confidence about how to translate or distil medical language in meaningful ways to subsequently share with their child or other family members.

Only one centre had a nurse who was an integrated team member despite their capacity to be valued within interprofessional teams (Hart, 2015). Nursing within the context of DSD interprofessional teams has much to offer within a framework of emancipatory knowing and knowledge (Chinn & Kramer, 2015). Furthermore, the concept of emancipatory knowing within nursing considers the social and politics systems, the ‘network of social processes that create unjust conditions’ (Chinn & Kramer, 2015, p. 65), which is of particular significance when caring for children with DSD and their families. These families have faced a rise in local and global interest in the last two decades, which could be considered as intrusive or liberating. The nurse and psychologists who provided continuity outside of the clinic settings, or even in the family home, where able to act as information exchange agents acting in an advocacy role similar to other teams outside of DSD (Jansen, van der Putten, & Vlaskamp, 2016).

While teams cited the consensus statement, national guidance, or local pathways, how these influenced practice and quality were not made explicit. Within the field of DSD, the dissonance between advocacy groups and professionals (Davies, 2015. p. 52) has perhaps not helped in building partnerships. However, at a policy level, patient centredness is increasingly recognised as a prerequisite for high-quality healthcare (Zill et al., 2015) and teams could strive to ensure this is delivered and evaluated through developing and sustaining collaborative and evaluative partnerships with support groups as well as between DSD teams.

In relation to study limitations, this work was undertaken within the context of the United Kingdom; the NHS has a funding approach that is not replicated globally and other centres may not have access to the resources to develop such teams. The sites approached may not have been an exhaustive list resulting in some teams not being approached to participate. The nature of the study design was complex which discouraged participation despite reassurances that the study was not evaluating competency. The families that self-selected exclusion was not approached are possibly those who hold different experiences than those who gave consent, thereby limiting applicability of our findings to other populations.

Concluding comments

In exploring interprofessional teamwork within a framework of patient-centred care, we are at an early stage in understanding the strengths and limitations to this approach. Within an interprofessional patient-centred framework, the young person is immediately involved in discussion about their condition and planning their care (Jessup, 2007; WHO 2010). In expanding the frameworks by Scholl et al. (2014) and Zill et al. (2015), there are opportunities for interprofessional teams to focus on care that promotes inclusivity and challenges bias by using their emancipatory knowledge as a lens to focus on overcoming inequity and injustice. Since patient and family care are a core tenet of interprofessional team working, this approach could bridge the complexity inherent in DSD care, thereby co-creating a better future for children, young people, and adults with DSD, which is the desire of many families (Magritte, 2012). Our conceptual framework could be used as a benchmark to evaluate care, embed the work of others when exploring care delivery, patient satisfaction, and quality of life and outcome.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Acknowledgements

We would like to thank all the professionals and families that gave their time to participate.

Funding

CS was funded by a National Institute for Health Research (NIHR) Clinical Academic Training award CL09/17. This article presents independent research funded by the NIHR. The views expressed are those of the authors and not necessarily those of the NIHR.

Supplemental data

Supplemental data for this article can be accessed on the publisher’s website at http://dx.doi.org/10.1080/13561820.2016.1272559.

Additional information

Funding

CS was funded by a National Institute for Health Research (NIHR) Clinical Academic Training award CL09/17. This article presents independent research funded by the NIHR. The views expressed are those of the authors and not necessarily those of the NIHR.

Notes

^1. For more information see: https://www.healthactchq.com/chq.php