Physicians’ perceptions on Quality of Life of persons with profound intellectual and multiple disabilities: A qualitative study

ABSTRACT

Background

Quality of Life (QoL) may be a factor in physicians’ decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD.

Method

We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD, thematically analysed them and identified clusters of related elements of QoL.

Results

Emotional, physical and relational clusters of elements were found. Physicians named mainly emotional elements to describe good QoL, physical elements to describe poor QoL and they emphasised the role of relational context on QoL. In addition, they mentioned a balance between good and poor elements as good QoL. Physical decline, bad prognosis and increasing problems in the relational context influenced QoL in a negative way.

Conclusions

The influence of the relational context on both good and poor QoL needs more investigation because of its consequences for ethical decision-making.

KEYWORDS:

• Quality of Life
• profound intellectual and multiple disabilities
• developmental disabilities
• intellectual disabilities
• ethics
• qualitative research

Quality of life (QoL) of persons with Profound, Intellectual and Multiple Disabilities (PIMD) is a challenging subject in research because these individuals cannot verbally express themselves. Persons with PIMD are individuals with profound intellectual disabilities (IQ < 20) and profound neuromotor dysfunctions, sometimes with sensory impairments and even medical problems (including seizures, respiratory and feeding problems). Even more, these persons seem to have neither an apparent understanding of verbal language nor symbolic understanding (Nakken & Vlaskamp, 2007). This means, for example, knowing that a chair is something to sit on. This description of persons with PIMD is in accordance with the working definition of persons with PIMD developed by the Special Interest Research Group (SIRG) PIMD of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSID).

In research, QoL is mostly used as an outcome measure for interventions or quality of care. In a narrative literature review (Nieuwenhuijse, Willems, van Goudoever, Echteld, & Olsman, 2017) we found that questionnaires, for example the QoL-PMD (Petry, Maes, & Vlaskamp, 2009a, 2009b) and San Martin scale (Verdugo, Gomez, Arias, Navas, & Schalock, 2014), and behavioural observations (Petry & Maes, 2006; Vos, De Cock, Petry, Van Den Noortgate, & Maes, 2013) were frequently used as methods to assess QoL. Parents, family, primary caregivers and researchers were the assessors of QoL. However, QoL is not only used as an outcome measure, but also affects ethical deliberations on major surgery, tube feeding, and withholding or sustaining life-supporting treatment (Zaal-Schuller, de Vos, Ewals, van Goudoever, & Willems, 2016; Zaal-Schuller, Willems, Ewals, van Goudoever, & de Vos, 2018). In recent years, more research has been conducted on ethical decision-making in clinical practice. For example in end-of-life care in persons with intellectual disabilities (Bekkema, de Veer, Wagemans, Hertogh, & Francke, 2014) or in decisions concerning children with neuro-disabilities (Rosenbaum, Ronen, Dan, Johannesen, & Racine, 2016). A recent study explored the attitude of physicians to life-threatening events in children with severe neurological disabilities in Switzerland (Wosinski & Newman, 2019). However, in our literature review we found that knowledge on the role of QoL of persons with PIMD in ethical deliberations was scant (Nieuwenhuijse et al., 2017) and some authors say that the use of the concept of QoL in ethical issues is precarious (Petry & Maes, 2009). In clinical practice, however, ethical deliberations to make decisions on major surgery, tube feeding, and withholding or sustaining life-supporting treatment do occur and in the Netherlands, physicians bear the final responsibility for these decisions. These decisions can feel onerous for those who are responsible for persons with PIMD, such as parents and physicians (de Vos, 2015; Zaal-Schuller et al., 2016).

Recent research on clinical decision-making in persons with PIMD identified elements that contribute to Qol according to physicians (Zaal-Schuller et al., 2018). Apart from this, there is not much information on physicians’ perceptions of good and poor QoL of persons with PIMD and when they start to have concerns about QoL. More specifically, we do not know what the tipping point is at which they start to have concerns and for what reasons they have concerns about QoL of persons with PIMD. Therefore, we conducted this qualitative study in which we explored physicians’ perceptions on QoL of persons with PIMD. We answered the following research questions: 1) How do physicians describe good and poor QoL of persons with PIMD? 2) When do they start to have concerns about QoL of persons with PIMD?

Method

We performed an exploratory study using semi-structured interviews with physicians and analysed them thematically (Braun & Clarke, 2006).

Recruitment

We included paediatricians, paediatric neurologists and intellectual disability physicians because they are the first responsible physicians of patients with PIMD in the Netherlands. Paediatricians and paediatric neurologists work in hospitals and are the first responsible physicians for persons <18 years with PIMD living at home. Intellectual disability physicians, mostly working in institutions, are the first responsible physicians for persons with PIMD living in these institutions. Only physicians with more than 5 years of experience in treating persons with PIMD were included. Sampling aimed at the variation in age of the patients they cared for. We recruited the participants by opportunity and snowball sampling with the help of experienced physicians and psychologists who are on our project group, comprising the authors, three psychologists and a paediatrician. They searched in their networks for physicians in different parts of the Netherlands who met the requirements.

Research ethics

According to the Ethical Review Committee of the Academic Medical Center, our study did not need an ethics review. Eligible participants were informed about the research by telephone and by letter and when they agreed to participate, we sent them a letter to confirm this.

Data collection

The first author conducted the interviews using an interview guide (Appendix). This guideline was discussed in the research group until we reached consensus. The interviewer started the interview with the description of persons with PIMD. Then we asked the physicians to describe a patient with PIMD whom they deemed to have a good QoL and a patient with poor QoL and why. After that, we asked the physicians when they started to have concerns about the QoL of a patient with PIMD and to give examples. All the interviews were audio-taped and transcribed verbatim. The face-to-face interviews took place in the hospital or institution in which the physician worked and took approximately 1 hour each (mean, 65 min; range, 57–73 min).

Data analysis

The transcribed interviews were analysed using the qualitative data analysis software, MaxQDA. First, two interviews were independently analysed by AMN and EO to identify fragments relevant to answer the research questions. Then, the first author used a mixed strategy with codes derived from the interview guide, and codes that emerged from the data, such as emotions of the interviewee and balance, leading to a first code tree (Supplementary file 1). After that, AMN discussed this with EO and DW and they regrouped the codes thematically and added an explanation, leading to a second code tree (Supplementary file 2). Next, two (other) interviews were coded by AMN and EO and two members of the project group (EH and GG) using the second code tree and discussed the results.

After that, AMN interpreted the fragments belonging to the codes and discussed the results with EO. Based on this discussion the analyses were refined. For example: the elements of good and poor QoL were first clustered in four different clusters: Emotional, Physical, Relational and Contact. After discussion, Relation and Contact were combined in the same cluster. The final analysis was discussed between AMN, EO and DW until they reached consensus.

Participants

We contacted 8 physicians (2 paediatricians, 2 paediatric neurologists and 4 intellectual disability physicians), all with 5 years or more experience – varying from 5 to 36 years (mean, 16; SD, 11) – with the target group. One paediatric neurologist cancelled participation because of too much work. The 2 paediatricians and a paediatric neurologist who participated, worked in different academic hospitals and were specialised in the target group. The 4 intellectual disability physicians all worked in care organisations for people with Intellectual Disabilities (ID), targeting various subgroups. One of the intellectual disability physicians also worked in a children’s day care centre for the target group. The mean age of the participants was 50 years (SD = 12).

Results

Hesitations of physicians to describe QoL in persons with PIMD

In the interviews with the physicians, all were hesitant to speak about QoL of persons with PIMD. Some were hesitant because they felt that QoL in this target group depends solely on subjective interpretation and mentioned that persons involved with persons with PIMD could have different ideas on QoL. Or the participants mentioned that there was no “standard” for QoL and that QoL of persons with PIMD is not the same as in other persons [numbers refer to participant numbers].

Yes, that is dangerous, because what is discomfort in this group? Yes, [he] has epilepsy. Is motor unrest discomfort? We all think that it is, but – in my opinion – we are unable to interpret it specifically in this group. (4)

Of course quality of life is totally different to yours or mine, these are not [normal] children, they will never become autonomous, they will never go to school or university. (1)

Participants also mentioned that their perception of QoL of a person with PIMD was influenced by the relationship they had with this person.

But if one of my colleague’s patients is admitted during the weekend and I think to myself “this child does not have any form of communication with his/her surroundings and is just lying in bed and now he/she is in hospital again with […]”, then I do think “Gee, is this really relevant?”. Because I am looking at him or her as a stranger. (5)

That is the way in which he [intensive care specialist] looks at it: he sees a very, very, very sick child that is very retarded entering the hospital in a resuscitation setting and has no concept of what the child’s life was like before this moment. (1)

How do physicians describe good and poor QoL of persons with PIMD?

The analysis of the elements of good and poor QoL led to three central clusters: emotional, physical and relational. For an overview of these clusters and their elements, see Table 1.

Table 1. Three clusters of elements of Quality of Life (QoL).

Cluster	Good QOL	Poor QOL
Emotional	Happy, pleasure, enjoyment	Inconsolable crying, appears unhappy, no emotion, empty, shallow, suffering
Physical	Normalised muscle tone, no pain, no epilepsy or under control, can eat without choking, is able to breathe easily	Tense muscles, choking, short of breath, pain, major epilepsy, sick
Relational	Is able to make contact and has interaction. Good relationship with parents, parents/family are able to cope, loving family, loving social environment, safety	No contact. No parents, burden too great for parents/social environment, no safety

Emotional cluster. Participants regularly mentioned emotions or feelings when they described good QoL. For example, pleasure and enjoying things or being satisfied were mentioned frequently to describe good QoL. As one of the respondents (6) said, “Well, that person is enjoying life, he appears content”. Conversely, they also mentioned emotions or feelings when describing a patient with poor QoL, although this was less frequently referred to. “He can barely be activated or motivated to do anything, he no longer appears to enjoy anything” (6).

Physical cluster. On the other hand, physical elements were mostly mentioned to describe poor QoL. Physicians listed physical elements such as epilepsy, pain, tightness of the chest and problems with feeding or choking, or both. Also, hospitalisation because of the physical problems was mentioned frequently as a negative element. A few physicians described good QoL, as the absence of negative physical elements.

Relational cluster. Besides emotional and physical elements, respondents often referred to relational elements. One of the elements was familial aspects and this was stated as being very important, like a good relationship with parents, which gives the person with PIMD safety and the capability and resources of parents to shoulder the burden of caring for their child.

Why I think that she has a quality of life? She lives in a home situation with a family with younger children, with the parents who care for her with a great deal of love, and where she feels wanted. She is allowed to be who she is. This was a long road for her parents, but now she is allowed to be who she is. (7)

One of the physicians specifically mentioned the safety given by the parents and the social environment as being crucial for good QoL.

For example, the child experiences safety. There is a very clear … The child has a loving family around her. Or care providers, or whatever. With continuity. If that is missing, yes that does affect you … What you want most for a child, is safety. That is what it is really about. A child has to feel safe somewhere. A child has to feel safe with certain individuals. Normally this involves the parents, but if there are very regular care providers, then as far as I am concerned, the same applies. But this is about safety and feeling safe. (4)

Some participants stated that the social environment of the person with PIMD was essential to their existence.

Yes, that does define the lives of others. And yes, I do think that you never look at one life on its own … And in this case … this category of individuals and children, it is so, you cannot focus on that child alone. You simply have to look at the whole picture … . Interviewer: So also at the social environment?  … Interviewee: Also at the social environment. I mean, we are nothing without our surroundings. Meaningless beings on a meaningless planet. I am truly convinced of this. I mean, by virtue of the fact that we know what we can expect from each other, yes. (5)

… these children cannot make their own quality of life … you need someone who is fully committed to the child. (1)

Balance or equilibrium. When answering the question of describing a person with good QoL and a person with poor QoL, sometimes physicians described QoL neither as completely good nor as completely poor, but rather in terms of an equilibrium or balance between good and poor elements.

And the second point is that I think that it is very much about an equilibrium between the positive things in life and the negative things in life. I also think that if you have relatively few negative things, then there will also not be many obviously positive things … If you start looking … But if there is a lot of suffering, problems, etc., that you need a lot of positive things to maintain that equilibrium. (4)

Or they spoke of good QoL in spite of the patient’s poor health or in spite of the fact that not all elements were positive.

And that is someone with quite severe physical limitations, with physical problems and despite this she appears happy to me. And as far as I am concerned, she does have quality of life. (3)

The other equilibrium that they mentioned as good QoL, which they referred to as “harmony” or “balance”, was an equilibrium between the person with PIMD and the environment.

Yes but, you know, if you base things on the idea that the child has developed a sort of harmony, with the parents, within the family, with other children, at the daycare center; if that is all in harmony, then it does not really depend on the [cognitive] level of the child. (5)

Concerns

Physicians started to have concerns about QoL when there was a change of the situation in a negative way.

This boy, who you only see deteriorating – he was able to walk, but can now no longer walk … this is also a boy who is always grimacing, has few moments of enjoyment and in the end was not able to eat very well. So that was all deteriorating too, he used to be able to enjoy his food, but – possibly due to the medication he was receiving for his epilepsy – he started having trouble swallowing, so we had to switch to pureed food … which he did not like! (7)

And yes, also the fact that she is getting older, has all sorts of ailments, is experiencing pain, is fatigued, yes, I think she is no longer experiencing a good quality of life. (2)

Participants particularly referred to negative changes in the physical and the relational cluster.

Negative change in physical cluster. Some of the participants addressed the shortening of intervals between hospitalisations or between prescriptions of medication.

Yes, if it becomes in and out, in and out, at shorter intervals, then yes … we happen to have a girl at the moment who goes back and forth to hospital and that makes me think, because that is a brain stem dysfunction, then I think yes … well […] Wow, look if there are 3, 4 courses of treatment per year and with a short interval, then you do think gosh, now I am at this point again … well, yes then I do start … And at some point you can say listen, this person is getting respiratory tract infections very frequently – as I just said – or a choking episode […] or something similar and you give them one course of antibiotics after the other, then you do start to think. Then you do think, yes, isn’t it time that we all get together? (6)

In addition, almost all physicians referred to the process of physical decline or having a bad prognosis as factors that influenced their perception on QoL of persons with PIMD in a negative way.

Well, first you start with the idea of when to start such a conversation. And that is often related to the fact that a deterioration has occurred. Deterioration that you think will become progressive. (2)

I do think that the prognosis was bad, considering the danger of choking and the risk of repeated bouts of pneumonia. So in that sense, the prognosis was not favorable. (3)

Negative change in the relational cluster. Some physicians spoke about the decline of the strength, resources or abilities of parents to care for their disabled child.

Too great a burden on the family, they were simply unable to cope, they were caring for this girl literally day and night, she was also in pain, was unable to eat properly, was being bottle-fed and ultimately her surroundings – the sub-optimal environmental factors, the parents’ inability to cope – also contributed to the fact that this girl died, because her family simply could not carry on. (1)

In all the interviews, physicians mentioned the death of parents, or the fear of parents to die before their child. Some mentioned that the death of the parents has a negative effect on QoL of the person with PIMD. Within this context, one of the physicians mentioned his wish for parents to outlive their child.

But I do think that – even with a child that is very severe [disabled] – it can play major part in your life, to go through that together with that child, you want to see it through, yes I do think that. Interviewer: What do you mean “see it through”? Interviewee: Well that you are also there at the end. Interviewer: As a parent? Interviewee: And that as a parent, you should not give up at the end and I think that – though of course you are not able to make this choice – just like with healthy children, no parent wants to see their child die before them. Is it actually the other way around with these children, that you say well the journey has been completed now. (5)

Discussion

This study addressed how physicians perceived QoL of persons with PIMD and an emotional, physical and relational cluster were found. In addition, they mentioned a balance or equilibrium between elements as good QoL. The findings suggest that the tipping point to start concerning about QoL was a negative change, mostly in physical elements, such as physical deterioration, or in the relational context, like parents not being able to cope anymore, or when there was a disturbance in the balance/equilibrium.

In the literature, QoL is frequently described in domains. In a literature review, we found several combinations of domains (Nieuwenhuijse et al., 2017). In our present study, the clustering of elements was an inductive process, based on interviews with seven physicians. However, some of the elements we found were also present in the different domains described by others, such as familial context and capability to communicate (André, Hodgkinson, Bérard, & des Portes, 2007), basic security and family bonds (Petry, Maes, & Vlaskamp, 2005) and emotional well-being (Felce & Perry, 1995; Schalock, Bonham, & Verdugo, 2008). On the contrary, other domains were not mentioned by our interviewees, for example: self-determination, social inclusion and rights (Schalock et al., 2008). The physical cluster with elements of physical state and health is described in all combinations of domains that we found in the literature (Nieuwenhuijse et al., 2017). Our findings are also in line with the findings described by Zaal-Schuller, et al., (2018).

The importance of physical elements or physical health on QoL is comprehensible, because of the complex medical problems of persons with PIMD. However, when they described good QoL, our respondents did not mention physical elements, but mostly emotional and relational elements. Conversely, when they described poor QoL, they mentioned physical elements. Furthermore, when they started to have concerns, one of the aspects they mentioned was a deterioration in the physical cluster. In this negative change, they frequently mentioned decline and a bad prognosis of the physical state or health as factors that influenced their judgment. One explanation for this finding may be that physicians often see their patients when they suffer from physical complaints or physical deterioration. Another factor they mentioned was the frequency of hospitalisation and the prescription of medications. Information on hospital admission of persons with PIMD (Bindels-de Heus, Van Staa, Van Vliet, Ewals, & Hilberink, 2013) and prescription of medicine to persons with PIMD is available (Heide, Putten, Berg, Taxis, & Vlaskamp, 2009), although not related to QoL of persons with PIMD. In addition, the literature on the parental burden of care and QoL of parents and their hospitalised children (Seliner, A Latal, & A Spirig, 2016) confirms our findings that hospitalisation has an effect on QoL.

 Our respondents emphasised the effect of the relational context (particularly the parents) on QoL of persons with PIMD, which included their comments on the death of the parents. The literature also revealed that the parents are often one of the assessors of QoL of persons with PIMD (Nieuwenhuijse et al., 2017). This can complicate matters, particularly in situations where the QoL of the person with PIMD plays a role in decisions regarding medical treatment (Zaal-Schuller et al., 2018). On the one hand, the parents are the assessors of the QoL of their child, while on the other hand they are an important factor that influences this QoL. This opinion about the mixed roles of family members in medical decision-making has been described in a different context as well (Seeber, Pols, Hijdra, & Willems, 2015). However, in these cases, the patients had been able to discuss their wishes and ideas about QoL before they became ill. This is not the case for persons with PIMD. Parents, or others involved, always have to make the crucial decisions in life for the persons with PIMD. Whether this is more difficult or perhaps easier is not known. Further research is necessary to explore what the perspective of parents is on these different roles.

Some of our respondents stated that persons with PIMD cannot exist without their relational context. This is understandable, because of their total dependency on others in all aspects of daily life. As we found in the literature that QoL (and thus relational context according to these physicians) affects decisions (Zaal-Schuller et al., 2018), this importance of the relational context can raise moral questions. These moral questions deserve further attention because they may be (highly) controversial in the field of care for persons with PIMD. For example, may or should relational context play a role in decisions on major surgery, tube feeding or withholding or sustaining life-supporting treatment? May or should the absence of a warm and loving environment influence these decisions? Or may or should the fact that parents have passed away influence these decisions? In order to answer these questions, the perspective of family, parents and professionals on the impact of the relational context on QoL of persons with PIMD is worth exploring further in future research.

In this study, we asked seven physicians to describe QoL of persons with PIMD. We found a reticence in our respondents to answer this question. They realised that their perception on QoL of persons with PIMD is subjective, based on interpretation and dependent on their relationship with the patient. The current assessment methods (Petry & Maes, 2009) may not be the (only) good response to this hesitation. An alternative response may be the development of narrative approaches to QoL because they recognise the importance of interpretation and relationship when interpreting someone’s QoL.

Furthermore, we found that our participants balance elements of good and poor QoL, and that they start to experience concerns when this balance tends to become negative. This information was obtained from one group of informants of QoL, namely physicians. If and when other informants of QoL of persons with PIMD – such as parents, family and professionals – start to have concerns about the balance of good and poor elements, QoL warrants further investigation.

The strength of this study is that it reflects the struggle of our respondents to asses QoL in a justifiable manner in persons with PIMD, which may offer possibilities for identification for other physicians going through similar processes. A limitation of this research is that only seven physicians were interviewed. Another limitation of this study is that the results, though they may be transferable, cannot be generalised to other settings or cultures.

Our study indicates that physicians may balance good and poor elements when they describe QoL of persons with PIMD and may start to have concerns when physical elements or the relational context deteriorate. The influence of the relational context on QoL and its consequences in ethically difficult decisions needs more investigation.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research was funded by the Netherlands Organization for Scientific Research (NWO) [grant number 319-20-004]. The funding body has imposed no restrictions on free access to or publication of the research.

Appendix. Guideline for interview, list of topics interview questions.

In this series of interviews, we will interview physicians.

1. We need to define the target group before we start. The interviewer and the interviewee need to agree on this. Nakken and Vlaskam defined the group of individuals with PIMD. An important characteristic is: being unable to speak or express themselves clearly in any other way.

The persons who form the subject of our research (persons with PIMD) have the following characteristics;

(a) profound intellectual disability and (b) profound motor disability. They also have a number of additional severe or profound secondary disabilities or impairments.

In addition to profound intellectual and physical disabilities, sensory impairments are also frequently experienced and especially the prevalence of cerebral visual impairment is high. Individuals with profound multiple disabilities also have an overall risk of developing medical complications and almost all require regularly administered medication (e.g., anti-convulsion drugs, sleep medication, medication to prevent reflux and drugs with a sedative effect). They form a physically vulnerable group of persons with a heavy or total dependence on personal assistance for everyday tasks (Nakken & Vlaskamp, 2007).

1. It is then important to determine, the involvement of the interviewee with the aforementioned target group. How many of these individuals does the interviewee know and how often does he/she see them? What age are these individuals and in what type of setting do they live?

We have two research questions that we will discuss:

Research question 1: How do physicians describe good and poor quality of life in this target group?

Research question 2: When and why would physicians start to doubt the quality of life?

It is important to ask the interviewee to think about an existing person/situation. This allows you to ask in-depth questions about tangible aspects. Avoid speaking in general terms!

A few guidelines for the interviews:

Concretise: Can you give me an example of this? In which situation does this play a role?

Challenge: [literally repeat a few words of what respondents say]. Can you tell me more about this? How was that for you?

Clarify: what do you mean by … ? I am not sure whether I completely understand what you have just said. Could you tell me a bit more about … ?

Summarise: so if I understand correctly, you are saying … 

Take the lead: excuse me, but I have to interrupt you there. What I would like to know is … I am really glad that you have said this, but I would like to return to the topic … 

Personal: I can imagine that. That is quite intense, very beautiful, etc. (be careful here, as this can also determine the direction of the interview)

The interview

1. Introduction

Introduction

• - introduce yourself and thank the person for his/her willingness to take part

• - aim of the interview / course of events

Aim of the research

• - By interviewing physicians, we want to gain an understanding of how they view the quality of life in this group and what their considerations are in this regard.

Factual details

• - name

• - age

• - m/f

• - profession

• - how long have you been working with this target group and in what role, what age are they, where do they live.

• - cultural background

• - telephone number and/or e-mail address

Course of events

• - start the interview

• - record any unusual observations. Things that are not recorded on tape, but could be useful in the analysis of the interview.

• - The interviewer should manage the time

• - evaluation at the end (would like to know what you thought about the interview)

Any questions?

Research question 1

Can you describe a person from the group that we have just defined that you would say has a good quality of life?

• - Describe the situation

• - What was the reason that you thought this?

• - What did you notice about the child/the adult?

• - Did any other factors play a role? For example, the living situation, the parents or professional care providers

Can you describe a person that you would say does not have a good quality of life?

• - Describe the situation

• - What was the reason that you thought this?

• - What did you notice about the child/the adult?

• - Did any other factors play a role? For example, the living situation, the parents or professional care providers

Research question 2

Have you ever had doubts about the quality of life of a person from the target group?

If so, can you describe someone?

• - Describe the situation

• - What was the reason that you thought this?

• - What did you notice about the child/the adult?

• - Did any other factors play a role? For example, the living situation, the parents or professional care providers

• - How did you handle these doubts?

• - How was that for you?

• - What happened next, such as conversations with parents or other doctors?

• - Were any decisions made?

Conclusion

• - Would you like to receive a literal transcript of our research? (with all the “uhms” and “ahs”); (you can still add information to this version)

• - Are there doctors or other people that you think would be worth interviewing? Perhaps because you know that they have a very different opinion or are involved in this subject matter in a different way. Do you have any names?