Approaching Bereavement Research with Heartfelt Positivity

Emotion and the Researcher: Sites, Subjectivities, and Relationships

ISBN: 978-1-78714-612-9, eISBN: 978-1-78714-611-2

ISSN: 1042-3192

Publication date: 23 August 2018

Abstract

Purpose – This chapter critically engages with a positively oriented emotional reflexivity with the aim of improving inclusivity in bereavement research.

Keywords

Citation

Carroll, K. (2018), "Approaching Bereavement Research with Heartfelt Positivity", Loughran, T. and Mannay, D. (Ed.) Emotion and the Researcher: Sites, Subjectivities, and Relationships (Studies in Qualitative Methodology, Vol. 16), Emerald Publishing Limited, pp. 97-111. https://doi.org/10.1108/S1042-319220180000016007

Download as .RIS

Publisher

:

Emerald Publishing Limited

Copyright © 2018 Emerald Publishing Limited


Introduction

‘What a sad topic!’ This is the response I typically receive from people who inquire about my current research area. Infant death is, most definitely, sad. It is not only a devastating loss of life proximate to the anticipated joy of birth and new life, but an enforced and infinite pause on the unfolding practices of new motherhood that were intended for that particular child (Layne, 2003). One such maternal practice is breastfeeding. Although lactation is most commonly associated with mothers of living infants, some women continue to produce, express, store and donate breastmilk after infant death (Carroll & Lenne, in press; Welborn, 2012). Not only is the onset of physiologic lactation after stillbirth and neonatal death common, but lactation after loss can actually assist some bereaved mothers with grief by enabling them to feel connected with their deceased infant, help integrate the experience of perinatal loss and provide meaning in the loss through breastmilk donation (Welborn, 2012). Meanwhile, the donation of expressed breastmilk to a human milk bank can create feelings of positivity, pride, productivity and a sense of purpose among some bereaved mothers (Carroll & Lenne, in press). 1

As part of the broader movement of taking a positive approach to the social sciences and healthcare (Mesman, 2011; Penttinen, 2013; Whiting, Kendell, & Wills, 2012), I choose to focus on the gifts that donated breastmilk offers preterm infants, 2 donors 3 and the health system at large 4 rather than focusing on the very real distress of preterm birth, NICU admissions, and infant death (Guyer, 2006). This positive approach to lactation after loss offers an alternative to the dominant, taken-for-granted problem-oriented approach to healthcare inquiry (Mesman, 2011) which might, for example, focus on the poor provision of services for women in non-normative circumstances of lactation (Carroll & Lenne, in press).

Cultivating Positivity in the World: Postively Oriented Methodologies

Part One: A Comparison of Positively Oriented Methodologies

Penttinen’s ‘heartfelt positivity’ is a methodology developed for researching resilience, resourcefulness, compassion and moments of relief amid the atrocities of war (Penttinen, 2013, p. 19). Yet it offers transferable principles to other research areas of the social sciences. The heartfelt positivity methodology consists of two parts. First, it asks researchers to turn their focus away from what is wrong in the world, to what is working well (Penttinen, 2013, p. 24). This does not mean ignoring suffering, but rather, pursuing the inquiry of ‘expressions of joy and well-being, moments of relief, self-healing and empowerment, even in extreme conditions’ (Penttinen, 2013, p. 24). It is argued that by focusing research on illness and trauma, the dominate model of the human as inherently ‘vulnerable, weak and fragile’ is perpetuated while ignoring ‘what makes people thrive and what makes lives meaningful’ (Penttinen, 2013, p. 25).

Although it is derived from an entirely different area of scholarship, Elina Penttinen’s heartfelt positivity methodology chimes with Jessica Mesman’s (2011) positive approach to researching the delivery of healthcare, and with an asset-based approach to health promotion (Whiting et al., 2012). In Mesman’s practice-based ethnographic approach, rather than focusing on the errors and mistakes made in healthcare (a deficit model), she advocates for focusing on the vigour of healthcare practices which ultimately deliver patient safety (Mesman, 2011, p. 74). Mesman’s (2011) approach examines competencies that already exist but which may have been overlooked, forgotten or simply taken for granted (p. 74). Penttinen (2013), too, advocates for examining what is working well: ‘ruminating on worst outcomes leads to disempowerment and hinders action and as such denies the already present possibilities, or what is working well, in the present moment’ (p. 24). In a similar vein, rather than using a deficit model, the asset-based approach to health promotion deliberately identifies factors and ‘repertoires of potentials’ that can be emphasised or developed to create resilience and promote positive health and well-being at the individual, community and societal level (Whiting et al., 2012, p. 25).

Thus, through these positively oriented methodological approaches to diverse areas of scholarship, Penttinen, Mesman and Whiting et al. avoid a binary logic of positive/negative by attending to the resilience of individuals and communities within the horrors of war (Penttinen, 2013), the unintended mortalities or morbidities in the delivery of neonatal healthcare (Mesman, 2008), and the disease burden of ill health on individuals and communities (Whiting et al., 2012). These authors’ methodologies involve more than an attunement to the positive; their research aims to be a deliberate intervention in the world, albeit with very different orientations to doing so. 5 In what follows, I build on my earlier work of integrating emotions generated by participation in sensitive research (Carroll, 2012; Iedema & Carroll, 2015) to conduct a positively oriented emotional reflexivity that incorporates collaborators’ emotions on the topic of lactation and milk donation after infant loss. Herein I use the term collaborator to refer to the academic community beyond merely the research team and the participants to include, in this instance, peer-reviewers, audience members and stakeholders.

Part Two: Using Emotions to Produce Positively Oriented Scholarship

The second part of Penttinen’s heartfelt positivity methodology is to not only include the emotions cultivated through the research process, but to emphasise how these emotions play an active role in researchers’ construction of the world. She argues that researchers help to produce the world through their writing, teaching and scholarly relations (Penttinen, 2013, p. 22). Thus, the heartfelt positivity methodology recognises and cultivates positive emotions in the research practice (Penttinen, 2013, p. 32) to increase and expand happiness and well-being for both the researcher and society (Penttinen, 2013, p. 27). 6 To achieve this, and not unlike the care exhibited by other feminist and sensitive research approaches (see Carroll, 2012), the heartfelt positivity methodology asks researchers to attend to their own emotions and the emotional states of those they write about. In addition, however, the heartfelt positivity methodology also asks researchers to consider how emotions may subsequently shape the production of academic scholarship, and therefore one’s subsequent contribution to, and impact on, society.

This requires the researcher to mindfully engage emotions as a ‘thinking that takes place in the body’ through attending to ‘how the feelings and emotions matter in being able to analyse and translate with clarity one’s research material into a readable form’ (Penttinen, 2013, p. 24). An example of this may be as simple as working on how to frame a positively oriented research question, or a more lengthy and complex process of attending to emotions in order to cultivate data analysis which steers away from habituated or dominant narratives of human frailty and suffering, or disease and deficit models. Simply put, this ‘witnessing of inner and outer sensations, events and circumstances’ (Penttinen, 2013, p. 38) during research and writing asks the researcher to engage in intensive emotional self-reflexivity.

Emotional reflexivity is interactional and involves examining our own or others’ feelings about particular circumstances and subsequently altering practices and behaviours in response to our interpretations of these emotions (Holmes, 2015). The concept of emotional reflexivity acknowledges that emotions coexist with and inform what is often framed as ‘rational knowledge’, and necessarily elevates their importance in research so that they may become data or a source of knowing (Carroll, 2012). Yet by focusing on how one can respond to emotions in the research context in order to positively contribute to society the heartfelt positivity methodology goes beyond merely using emotions as data to tell us something about the world. Instead, emotional reflexivity and emotions are conceptualised as interventions to create connections and support as ‘agents of positive change’ (Pentinnen, 2012, p. 5) among research collaborators such as students, fellow researchers, participants and readers (among others) as part of doing the research. In this sense, the heartfelt positivity methodology offers a coherent conceptual framework for emotional reflexivity as it acknowledges the primacy of emotions, deliberately learns from them and then situates emotions as interventions in terms of both the researcher’s emotions and those of research collaborators throughout academic research (Penttinen, 2013). This is important as emotional reflexivity is critiqued for its focus on the researcher at the expense of recognising research participants’ (and others’) capacity for emotional reflexivity throughout the research process (Holmes, 2015).

By focusing on the positive orientations that lactation and milk donation can create for some women within, or alongside, the tragedy of infant death, I have already established that I practice the first part of the heartfelt positivity methodology. I now turn to the second part of the heartfelt positivity methodology. In the following section, I extend emotional reflexivity to the emotions expressed by collaborators involved in my research on lactation and milk donation after infant death. These collaborators include an academic who performed the peer review of an application for research funding; a health professional stakeholder attending a professional research meeting on milk donation after infant loss; and an audience member of an international human milk banking conference where project findings were presented and disseminated.

Heartfelt Positivity: An Ingress to Emotional Reflexivity

Three vignettes detail particularly emotional moments that were articulated by research collaborators while participating in my research on lactation and milk donation after infant death. These moments remain vivid in my memory and the reflexive insights I have garnered have ‘become apparent only with the passage of time’ (Doucet, 2008, p. 84). Yet as ‘situated emotions can be fleeting, and elude recall’ (Olson, Godbold, & Patulny, 2015, p. 143), the vignettes have been recreated with assistance from the research transcripts, email correspondence, and grant assessment reports. Writing the vignettes as a form of emotional reflexivity with guidance from the heartfelt positivity methodology assisted me to take stock, reflect and learn about the felt emotion expressed by collaborators about not only the research topic but the research process. Consequently, these vignettes have acted as a fodder for, as well as the expression of, emotional reflexivity, which, in turn, has created a space for analysis, learning and intervention in research regarding enhancing the inclusivity and impact of collaborators’ emotions in bereavement research. In addition, in writing these vignettes, I attended to Penttinen’s assertion that the heartfelt positivity methodology must also involve an emotional reflexivity as to how these writings may be received by the reader, and in this case, knowing that a reader may also be one of the collaborators represented.

The Conference Attendee: In 2016, I presented research findings on bereaved mothers’ experiences of their lactation and milk donation after infant death at an international milk banking conference. During the question time at the end of my presentation an audience member gently rose to her feet and she began to cry. She recounted how, 17 years ago, she had experienced her own infant’s death. She stated that, had she had the opportunity to donate her breastmilk, she would have liked to have done so. Moreover, she went on to say that she believed that she would have found it personally beneficial. After she completed her comment, I held the floor in silence and then thanked her for her courage in sharing her story. At the end of the question time, and as the Chair took the floor, rather than returning to my speaker’s seat at the front of the auditorium, I walked towards the rear of the auditorium in order to sit next to the audience member. Feeling overwhelmed with compassion and an awareness of the role my presentation had in bringing forth this woman’s emotions, I asked if I could give her a hug. She accepted and we went on to talk more about her experiences.

The Stakeholder: In 2011, I convened a day-long national stakeholder meeting on the topic of milk donation after infant death in Australia. It brought together representatives from neonatal intensive care units, human milk banks, researchers, and a parent advocacy group. After hearing how some bereaved donors experienced positivity through their lactation and breastmilk donation, the stakeholders debated the donation of breastmilk as a result of sustained lactation following infant death. At the heart of the debate was who should determine the length of time a bereaved mother could sustain her lactation in order to donate her breastmilk. The majority of stakeholders felt it should be the individual woman who decided the length of her own lactation and donation, and that guidelines on donation periods for bereaved donors should not differ from donors with living infants. One stakeholder strongly disagreed and had placed a limit of two weeks (post-bereavement) for mothers to donate milk to their milk bank. The stakeholder cited concerns that sustaining lactation and donation for longer than two weeks may negatively impact the grieving process. As the facilitator of the stakeholder meeting I maintained the necessary equanimity despite feeling that this position diminished bereaved women’s reproductive autonomy and did not reflect the research findings presented. As the first author of the subsequently co-authored publication with the stakeholders, I engaged in substantial email correspondence and manuscript redrafting with the stakeholder to ensure the manuscript satisfactorily conveyed the variety of positions and their relative weighting within the broader group with regards to the length of time a bereaved mother might sustain her lactation in order to donate her breastmilk.

The Academic Peer Reviewer: In 2017, I received four peer review reports on a proposal for research funding to investigate the experiences of bereaved mothers and health professionals regarding lactation and milk donation after infant death. Although three peer review reports were very positive, one assessor was troubled. In particular, the assessor expressed concern over conducting interviews with bereaved mothers, particularly that their participation may cause difficult or distressing memories, and that s/he was unclear how they would be protected from emotional distress. Later in the assessment the peer reviewer disclosed that her/his baby had suffered from a life-threatening illness and that after reading the proposal s/he was confronted by his/her own distressing memories. In my rejoinder, I reiterated the proposed study’s ethical safeguards and my successful track record of piloting research with bereaved mothers. I did not directly address the assessor’s heartache, although my knowledge of the assessor’s emotional reaction to the proposal did shape the words I chose in the scholarly reply.

Although ethical research attention is focused on the emotional care and protection of vulnerable research participants, the vignettes demonstrate that the potential for significant emotions extends to other research collaborators to include the audiences and assessors of academic work and project stakeholders. Importantly, the research collaborators in these vignettes experienced significant emotion despite not being identified in advance as ‘vulnerable persons’ or named as ‘bereaved mothers’ in human research ethics applications or study protocols. While some sensitive research methodologists suggest that emotional ‘risks’ should be planned for, others highlight the unpredictability of emotional dilemmas or turmoil (Evans et al., 2017, p. 2) such as the unanticipated emotion I encountered from collaborators. That researchers may encounter bereaved parents (or those who are closely engaged in assisting their suffering) at any stage of the research process reinforces the concerns of human research ethics committees and bereavement research methodologists (among others) for how mindfully and carefully researchers must engage in bereavement topics.

However, the gift of the heartfelt positivity methodology is that it emphasises the existence of two orientations to researching the experience of human hardship. The dominant logic within the social sciences, Penttinen argues, is to focus on what is wrong with the world, including a focus on human frailty and suffering. The other possible approach is to question inherent human frailty and to research ‘expressions of joy and well-being, moments of relief, self-healing and empowerment, even in extreme conditions’ (Penttinen, 2013, p. 24). It is through these contrasting lenses highlighted by the heartfelt positivity methodology that I can characterise how I perceived each of the collaborators’ orientations to bereavement, alongside their potential impact on participation in bereavement research and bereavement breastmilk donation programmes.

The first vignette describes the tearful emotional confession of an audience member at a conference as she recollected the emotional pain of her own infant’s death, and her lack of opportunity to manage her lactation in order to be able to donate her breastmilk. Despite her tears, the collaborator explained she would have liked to donate her breastmilk as a bereaved mother. Therefore, it could be presumed that she supported bereaved breastmilk donation programmes, and the broader research into lactation and donation as embodied practices that make some bereaved mothers’ lives meaningful, even in the midst of grief. In contrast, the vignettes of the stakeholder and peer reviewer differ in their orientations towards the emotional vulnerability of the bereaved mother.

For example, the stakeholder expressed discomfort with both the notion of sustaining lactation to donate breastmilk after infant death, and the qualitative research results presented that found some bereaved mothers experienced pride, productivity and positivity in doing so. Meanwhile, in the assessment of a research proposal on lactation after loss, the peer reviewer wrote of how s/he had experienced emotional discomfort at reading the research proposal as it prompted recollections of her/his own experience with a critically ill, hospitalised infant, and hence strong discomfort with involving bereaved mothers in qualitative interviews. The views of the stakeholder and the peer reviewer could be said to align more closely with dominant conceptualisations of people experiencing hardship as ‘inherently vulnerable, weak and fragile’ (Penttinen, 2013, p. 25). As a result, they positioned the bereaved mothers as ‘at-risk’ with regard to their potential involvement in bereaved milk donation programmes, and in research interviewing.

When they occupy key positions as gatekeepers, collaborators’ emotional experiences can have very real implications for research (Dyregrov, 2004; Hynson, Bauld & Sawyer, 2006; Payne & Field, 2004). At the front end of research, for example, where competitive funding is sought to engage bereaved mothers in research, an orientation that centres on emotional vulnerability could impact on the awarding of research funding to proposals that take a positive approach to difficult or sensitive research topics and which seek to directly include bereaved parents’ lived experiences (Denzin & Giardina, 2007; Payne & Field, 2004, p. 52). Studies suggest that just because negative emotions are expressed within research engagement does not mean that research is unethical or insensitive (Hynson, Bauld & Sawyer, 2006, p. 810). Moreover, most bereaved parents who agree to participate in research interviews find the opportunity to reflect upon and discuss their experiences as painful but helpful (Payne & Field, 2004, p. 52). In one large interview study with bereaved parents, tears were shed when talking and thinking about their deceased child, yet all participants wished to continue the interview, rated their involvement as ‘positive’ or ‘very positive’, and none regretted their participation when surveyed at two-weeks post-interview (Dyregrov, 2004).

Through their recognition of bereaved research participants’ strengths as well as their emotional pain, some bereavement researchers are pushing back against the ‘paternalism’ of gatekeepers, such as ethics boards and bereavement service providers, to actively include bereaved parents in research projects that aim to contribute to better understandings of grief and bereavement or palliative service needs (Payne & Field, 2004). By paying due attention to the intense grief and real ethical issues and methodological sensitivities required when undertaking research, knowledge can be generated by bereaved parents on the experience, meaning and understanding of survival, support and service engagements. This kind of knowledge cannot possibly be provided by others who may be considered less vulnerable (Buckle, Corbin Dwyer, & Jackson, 2010) or perhaps through alternate methods to the research interview. In response to the concern of the peer reviewer, research shows that when done with due care, there is not necessarily any further risk in engaging bereaved parents in face-to-face research (Dyregrov, 2004). Indeed, when the study is appropriately designed and conducted by skilled staff, bereaved parents even report positive experiences of telling their story in the interview format as ‘empowering’, ‘enriching’ and ‘being taken seriously’ despite also experiencing difficulty, pain or distress (Dyregrov, 2004; Hynson, 2006).

Reinforcing the existence of two main orientations to human suffering that Penttinen outlines, bereavement researchers Payne and Field (2004, p. 55) also explain that there is a ‘general acceptance of a medical or psychiatric model of bereavement, which tends to emphasis the individual distress and psychopathology associated with grief’ at the expense of social models of bereavement which emphasise ‘aspects of life transition, changes to social roles, the social consequences of loss and the importance of “narrative reconstruction”’. Together, the medical model of bereavement and the dominant problem-oriented approach of the social sciences (Penttinen, 2013, p. 19) influence the way bereaved parents are frequently characterised as too vulnerable for inclusion in studies using qualitative, and particularly face-to-face, research methods.

Collaborators’ emotional experiences with infant death (the audience member), with bereaved mothers (the stakeholder), and with a critically ill infant (the peer reviewer), significantly informed their emotional engagement with the research and, in turn, how they perceived the suitability of bereaved mothers’ participation in breastmilk donation programmes or in bereavement research. The vignettes suggest that harbouring certain orientations to bereavement and emotional vulnerability could either limit or expand which lactation options and breastmilk donation practices are made available to bereaved mothers, which research is funded, and which findings are implemented in policy and practice.

Despite good progress being made for the deliberate and sensitive inclusion of bereaved parents in research projects, there is a need to continue to strive for their ethical and sensitive inclusion (Denzin & Giardina, 2007). One way of achieving this is through emotional reflexivity during any gatekeeping work associated with bereavement research. While there is much focus on researcher and participant emotional reflexivity in doing qualitative and sensitive research, chief gatekeepers or content experts may also need to engage in emotional reflexivity in their analysis of research proposals or in their application and assessment of research findings. Notably, in the vignettes recounted above, it was by engaging collaborators’ emotions in emotional reflexivity that important parallels emerged between the sanctioned participation of bereaved mothers’ participation in qualitative face-to-face interviewing as part of broader bereavement research, and their participation in bereaved breastmilk donation programmes as a result of sustaining their lactation. Therefore, emotional reflexivity, it could be said, is particularly important for research that takes a positive approach to what provides meaning in the lives of people living in difficult or extreme circumstances; for if this research is not completed or its results not translated into practice, as a society we risk lagging behind in the creation of new knowledge on how to build practices and services that will increase well-being and self-healing.

Conclusion

In her analysis of North American rituals of pregnancy loss and bereavement, Linda Layne states that the women’s health movement has unintentionally ‘systematically minimised and marginalised negative reproductive outcomes’ as a result of its challenge to the pathologisation of pregnancy and birth (Layne, 2003, p. 239). Layne argues for the need to develop bereavement rituals which focus on the bereaved mother and her needs for support, connection to others, and a sense of belonging and identity. Moreover, bereaved mothers need not only to receive support but also be given opportunities for demonstrating competence and their ability to give (Layne, 2003, pp. 247–248).

Arguably, the heartfelt positivity methodology is an approach that can be relied upon by bereavement researchers to help them shape a research study and research practices that identify competence and capacity to survive, thrive and contribute, while also honouring the emotional experiences of suffering and grief from the loss of a loved one. Moreover, the heartfelt positivity methodology asks researchers to be emotionally reflexive throughout the research process to enhance the emotional clarity of their analysis, writing and interactions and their positive contribution to society. However, this emotional reflexivity, I would contend, needs to extend beyond the researcher and participants to include research collaborators, some of whom may also occupy key gatekeeping positions in terms of research funding and participant recruitment, the translation of research-generated knowledge into policy, and knowledge dissemination.

The application of emotional reflexivity through the three vignettes reveals that just as there is concern over bereaved mothers’ emotions and emotional health with regard to continuing their lactation or donating their milk after infant loss, there is also equal concern for bereaved mothers with regards to research participation in face-to-face or interview-based research. Perhaps we (researchers and research collaborators) are not especially comfortable with the emotional expression of discomfort or emotional pain by potential or actual participants (Mannay, 2018 [this volume]) even if this emotional discomfort was anticipated by the participants themselves (Payne & Field, 2004). Thus, sanctioning exclusion from participation through a framework of concern for vulnerability may be a strategy when confronted with painful stories that one can do nothing to address (Mannay, 2018 [this volume]). Therefore, in our role as bereavement-related researchers, peer reviewers, audience members, stakeholders, and service providers it is not only bereaved mothers’ emotions that should be of concern but also our own:

None of us ‘like death’ and all of us would prefer to be surrounded by ‘good things and positive energy’ … Grief for a dead loved one may be both inevitable and necessary, but the additional hurt that bereaved parents feel when their losses are diminished or diminished by others is needless and cruel. (Layne, 2004, p. 249)

Through the process of doing research and as a result of it, emotions can be heeded, highlighted and analysed to enhance sensitive methodological practices and positive outcomes for bereaved parents in society. Like researchers, research collaborators, including peer reviewers from funding bodies, representatives from health services and bereavement support organisations, have the power to grant who it is that has something to give as well as receive in bereavement. Through participating in research and telling one’s story, bereaved parents are provided with the opportunity to give to themselves and society, or to engage in, contest, nuance or launch from shared agendas with researchers, policymakers or practitioners. Similarly, through the donation of breastmilk bereaved mothers are able to contribute better health to hospitalised preterm infants and construct new narratives and identities (Carroll & Lenne, in press; Welborn, 2012). In both cases, it is through their inclusion that bereaved mothers are able to display competence (not just receive help), while concurrently acknowledging their loss and the life of the baby (rather than suffering in silence), and constructing new identities by connecting with others, for example, through narrative as a research participant or through lactation practices as a breastmilk donor.

Without ignoring suffering, the heartfelt positivity methodology asks researchers to turn their focus away from what is wrong in the world, to what is working well (Penttinen, 2013, p. 24). My use of the heartfelt positivity methodology to guide emotional reflexivity yielded analytical openings which enabled more learning about bereavement research on the topic of lactation and milk donation after loss. Importantly, rather than turning to a critique of paternalism and gatekeeping (see e.g., Denzin & Giardina, 2007), as a form of ‘ruminating on worst outcomes’ and hindering action through ignoring the potential of what is working well (Penttinen, 2013, p. 24), I chose to focus on the competence of some bereaved parents, as displayed in their finding positivity, well-being or fulfilment in either research participation or in breastmilk donation.

I engaged the heartfelt positivity methodology to guide emotional reflexivity as a research practice and as a framework that would include research collaborators’ emotions throughout the research lifecycle for analysis. This created insight into orientations to emotional vulnerability in bereavement which potentially impact on inclusivity in both bereavement research and breastmilk donation programmes. The chapter has examined how the heartfelt positivity methodology can be used to assist researchers to use emotion to drive an engaged positively oriented sociology. It reveals that public displays of emotion can be drawn upon to provide tailored insights into bereavement research as well as what is required of researchers and collaborators who engage in positive approaches to bereavement research or other sensitive, highly emotional topics.

Notes

1

For other bereaved mothers, however, the immediate suppression of lactation is necessary in order to focus on grieving for their infant (Carroll & Lenne, in press).

2

When hospitalised, very premature infants are unable to receive their mothers’ own breastmilk and are fed donated breastmilk (in place of infant formula) it significantly reduces the incidence of the severe, sometimes fatal gastrointestinal disease called necrotising enterocolitis (Boyd, Quigley, & Brocklehurst, 2007).

3

Mothers who provide their breastmilk to human milk banks have an opportunity to honour the substance of breastmilk, their labour in producing it and expressing it, and prevent it from going to waste if the expressed breastmilk ends up being surplus to their baby’s needs (Arnold & Lockhardt Borman, 1996; Carroll, 2016). Donors also have their motherhood affirmed through the dominant cultural logics of intensive motherhood, of which breastfeeding or the provision of breastmilk features prominently (Gernstein Pineau, 2013).

4

Donor milk has the potential to save the health system thousands of dollars in the prevention and treatment of necrotising enterocolitis and the chronic conditions that arise from it (Carroll & Herrmann, 2012).

5

Whitting et al.’s (2012, p. 28) asset-based approach to health promotion, for instance, stresses the importance of the ‘involvement of people in decisions and process that have the potential to impact on them’. Meanwhile, Mesman (2011) herself practices an interventionist ethnography with clinician-participants in order to continuously and collaboratively intervene in, and improve, patient safety in neonatal intensive care.

6

It would be tempting to think that the heartfelt methodology is about forcing positivity or eliminating negativity. It is not. Nor is it about designating positive emotions as ‘good’ and negative emotions as ‘bad’. Rather, it is a methodology that assists researchers to be open to ‘feeling and sensing the inner body’ (Penttinen, 2013, p. 40) while encountering experiences of hardship during research. Such an approach may assist the researcher to refocus away from an ‘ontology of constriction, separation, competition and struggle’ (Penttinen, 2013, p. 32).

References

Arnold, & Lockhardt Borman, 1996Arnold, L. & Lockhardt Borman, L. (1996). What are the characteristics of an ideal milk donor? Journal of Human Lactation, 12(2), 143145.

Boyd, Quigley, & Brocklehurst, 2007Boyd, C., Quigley, M. & Brocklehurst, P. (2007). Donor breast milk versus infant formula for preterm infants: Systematic review and meta-analysis. Archives of Disease in Childhood, 92(3), F169F175.

Buckle, Corbin Dwyer, & Jackson, 2010Buckle, J., Corbin Dwyer, S. & Jackson, M. (2010). Qualitative bereavement research: Incongruity between the perspectives of participants and research ethics boards. International Journal of Social Research Methodology, 12(2), 111125.

Carroll, 2012Carroll, K. (2012). Infertile? The emotional labour of sensitive and feminist research methodologies. Qualitative Research, 13(5), 546561.

Carroll, 2016Carroll, K. (2016). The milk of human kinship. In C. Krol⊘kke, L. Myong, S. Adrian & T. Tj⊘rnh⊘j-Thomsen (Eds.), Critical kinship studies (pp. 1332). London: Rowman and Littlefield International.

Carroll, & Herrmann, 2012Carroll, K. & Herrmann, K. (2012). The cost of using donor human milk in the NICU to achieve exclusively human milk feeding through 32 weeks postmenstrual age. Breastfeeding Medicine, 8(3), 286290.

Carroll, & LenneCarroll, K. & Lenne, B. (in press). Suppress and express: Breast milk donation after neonatal death. In C. Beyer & A. Robertson (Eds.), Mothers without children. Ontario: Demeter Press.

Denzin, & Giardina, 2007Denzin, N. & Giardina, M. (2007). Introduction. In. N. Denzin & M. Giardina (Eds.). Ethical futures in qualitative research (pp. 944). Walnut Creek, CA: Left Coast Press.

Doucet, 2008Doucet, A. (2008). ‘From her side of the Gossamer Wall(s)’: Reflexivity and relational knowing. Qualitative Sociology, 31, 7387.

Dyregrov, 2004Dyregrov, K. (2004) Bereaved parents’ experience of research participation. Social Science & Medicine, 58, 391400.

Evans, Ribbens McCarthy, Bowlby, Wouango, & Kebe, 2017Evans, R., Ribbens McCarthy, J., Bowlby, S., Wouango, J. & Kebe, F. (2017). Producing emotionally sensed knowledge? Reflexivity and emotions in researching responses to death. International Journal of Social Research Methodology, 20(6), 585598.

Gernstein Pieneau, 2013Gernstein Pieneau, M. (2013). Giving milk, buying milk: The influence of mothering ideologies and social class in donor milk banking. In T. Cassidy (Ed.), Breastfeeding: Global practices, challenges, maternal and infant health outcomes (pp. 6176). New York, NY: Nova Publishers.

Guyer, 2006Guyer, R. (2006). Baby at risk. Sterling, VA: Capital Books.

Holmes, 2015Holmes, M. (2015). Researching emotional reflexivity. Emotion Review, 7(1), 6166.

Hynson, Bauld, & Sawyer, 2006Hynson, J. L., Bauld, C. & Sawyer, S. M. (2006). Research with bereaved parents: A question of how not why. Palliative Medicine, 20, 805811.

Iedema, & Carroll, 2015Iedema, R. & Carroll, K. (2015). Research as affect-sphere: Toward sphereogenics. Emotion Review, 7(1), 6772.

Layne, 2003Layne, L. (2003). Motherhood lost. New York, NY. Routledge.

Mannay, 2018Mannay, D. (2018). ‘You just get on with it’: Negotiating the telling and silencing of trauma and its emotional impacts in interviews with marginalised mothers. In T. Loughran & D. Mannay (Eds.), Emotion and the researcher: Sites, subjectivities and relationships (Vol. x). Studies in Qualitative Methodology (pp. 81–94). Bingley: Emerald.

Mesman, 2008Mesman, J. (2008). Uncertainty in medical innovation. New York, NY: Palgrave Macmillan.

Mesman, 2011Mesman, J. (2011). Resources of strength: An exnovation of hidden competences to preserve patient safety. In E. Rowley & J. Waring (Eds.), A socio-cultural perspective on patient safety (pp. 7191). Farnham: Ashgate.

Olson, Godbold, & Patulny, 2015Olson, R., Godbold, N. & Patulny, R. (2015). Introduction: Methodological innovations in the sociology of emotions part two – Methods. Emotion Review, 7(2), 143144.

Payne, & Field, 2004Payne, S. & Field, D. (2004). Undertaking bereavement research: Sensitivities and sensibilities. Grief Matters: The Australian Journal of Grief and Bereavement, 7(3), 5256.

Penttinen, 2013Penttinen, E. (2013). Joy in international relations. London: Routledge.

Welborn, 2012Welborn, J. (2012). The experience of expressing and donating breast milk following a perinatal loss. Journal of Human Lactation, 28(4), 506510.

Whiting, Kendell, & Wills, 2012Whiting, L., Kendell, S. & Wills, W. (2012). An asset-based approach: An alternative health promotion strategy. Community Practitioner, 85(1), 2528.

Prelims
Introduction: Why Emotion Matters
Part I: Reflexivity and Research Relationships
Chapter 1: Role Transitions in the Field and Reflexivity: From Friend to Researcher
Chapter 2: With a Little Help From My Colleagues: Notes on Emotional Support in a Qualitative Longitudinal Research Project
Chapter 3: The Positional Self and Researcher Emotion: Destabilising Sibling Equilibrium in the Context of Cystic Fibrosis
Chapter 4: ‘It’s Not History. It’s My Life’: Researcher Emotions and the Production of Critical Histories of the Women’s Movement
Chapter 5: ‘You Just Get On With It’: Negotiating the Telling and Silencing of Trauma and Its Emotional Impacts in Interviews with Marginalised Mothers
Part II: Emotional Topographies and Research Sites
Chapter 6: Approaching Bereavement Research with Heartfelt Positivity
Chapter 7: ‘The Transient Insider’: Identity and Intimacy in Home Community Research
Chapter 8: Emotions, Disclosures and Reflexivity: Reflections on Interviewing Young People in Zambia and Women in Midlife in the UK
Chapter 9: Shock and Offence Online: The Role of Emotion in Participant Absent Research
Chapter 10: Love & Sorrow: The Role of Emotion in Exhibition Development and Visitor Experience
Part III: Subjectivities and Subject Positions
Chapter 11: The Expectation of Empathy: Unpacking Our Epistemological Bags while Researching Empathy, Literature and Neuroscience
Chapter 12: ‘Poor Old Mixed-Up Wales’: Entering the Debate about Bilingualism, Multiculturalism and Racism in Welsh Literature and Culture
Chapter 13: The Emotion of ‘Doing Ethics’ in Healthcare Research: A Researcher’s Reflexive Account
Chapter 14: Being Both Researcher and Subject: Attending to Emotion within Collaborative Inquiry
Chapter 15: Blind Spots and Moments of Estrangement: Subjectivity, Class and Education in British ‘Autobiographical Histories’
Afterword
Index