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METHODOLOGICAL ISSUES IN NURSING RESEARCH

Ecomapping: an innovative research tool for nurses Robin A. Ray

MHSc BEd RN

Lecturer, School of Nursing and Midwifery, La Trobe University, Victoria, Australia

Annette F. Street

PhD BEd

Professor, School of Nursing and Midwifery, La Trobe University, Victoria, Australia

Accepted for publication 29 November 2004

Correspondence: Robin Ray, School of Nursing & Midwifery, La Trobe University, Bundoora 3086, Victoria, Australia. E-mail: [email protected]

R A Y R . A . & S T R E E T A . F . ( 2 0 0 5 ) Journal of Advanced Nursing 50(5), 545–552 Ecomapping: an innovative research tool for nurses Aim. This paper explores the use of ecomaps as a research tool for capturing data, using the example of the dynamic nature of social networks from which informal carers of people living with motor neurone disease draw their support. Background. The need for social support in relation to health maintenance and disease management has been identified in the literature but little has been published about ways to investigate support networks. Existing discussion in the literature about the use of ecomaps as a clinical tool in social work creates a valuable framework for data collection which can be readily adapted by nurse researchers. Method. We used ecomaps as part of a repertoire of research tools to gather data about the social networks of carers of people living with motor neurone disease. Primary carers participated in three interviews and collaborated in ecomap construction over a period of 10 months during 2003. Analytical correlations were made between ecomaps and interview data. Findings. Ecomaps provided a visual means of facilitating discussions around the structure and strength of networks. Being able to represent the social networks visually through ecomapping enabled people to identify each member of the network, examine the strength of each relationship and ascertain the sources of nurture and tension over time. Limitations to this type of data collection arise when participants try to quantify relationships that have been visually produced. Conclusion. Ecomapping is a valuable research tool because it provides visual representation of supportive care networks, capturing strategic data through symbols expressing relationships that may be inadequately portrayed in words. The ecomap incorporates the use of consistent symbols that standardize recipient responses, enabling data comparisons to be made.

Keywords: qualitative research, ecomap, care networks, nursing

Introduction The ecological map or ‘ecomap’ has been used as an effective clinical tool to depict the structure and strength of family or social relationships. In this paper, we discuss the use of ecomaps as a research tool, drawing on their use in our research into enhancing supportive care through mapping the care networks of people living with motor neurone disease (MND). We undertook an ethnographic case study using 2005 Blackwell Publishing Ltd

conversational interviews and diagrammatic representations of networks in the form of ecomaps to identify the needs and support available to families caring for people living with motor neurone disease in Victoria, Australia. Discussion of detailed research findings are beyond the scope of this paper, as the focus is on examining an innovative methodological strategy. The capacity to identify the strength of social support is important as it has been found in longitudinal epidemiological 545

R.A. Ray and A.F. Street

studies that effective social networks play a vital role in the maintenance of health and capacity to survive serious illness (Berkman 1995). Likewise, social support is important for patients and carers coping with the psychological distress of illness (Baider et al. 2003). Family and friends have been identified in the literature as sources of social support and supportive care (Nolan et al. 1995, Waltrowicz et al. 1996, Jarrett et al. 1999, Bolmsjo & Hermeren 2001, McGarry & Arthur 2001). Evidence shows that lack of social support, or disengagement from support, can engender feelings of isolation (Rose 1995, van Teijlingen et al. 2001, Aoun 2004), hopelessness and fatalism (Cattell 2001). Findings from the Social Withdrawal Scale (Rigby et al. 1999) indicate a direct correlation between lack of social support and depression and other negative emotions. Social support is also directly correlated to coping, as people with significant unmet needs are those without direct social support from family and/or friends (Soothill et al. 2001, van Teijlingen et al. 2001). Finding effective strategies to improve social support is essential to raise confidence, increase a sense of control and improve self-worth (Cattell 2001). Thus, the literature on social support in healthrelated situations is focused on the family or friendship networks. What is missing from the nursing literature is the role that health care professionals and other community supports play in the development of effective social networks for carers. We consider that ecomaps can provide a useful data collection strategy in studies examining social networks by incorporating all the supportive relationships identified by carers. Ecomaps were developed in 1975 by Hartman as part of her practice in the Child Welfare Learning Laboratory in the School of Social Work at the University of Michigan (Hartman 1995). The term ecomap is derived from the word ecology – the study of the connection between a living thing and its environment, and how that connection is maintained and enhanced. Hartman uses only the human elements of ecology, and has developed a tool to represent the social relationships and social systems that people have created enabling them to interact more effectively with the physical and social environment in which they live and work. This notion implies that people develop relationships that provide resources, including information, practical assistance and emotional support needs, as they negotiate their everyday lives. An ecomap is a visual representation of relationships through the depiction of the network that exists between members of a social group and their connections with larger social networks (Wright & Leahey 2000), providing the researcher with evidence of the size, structure and function of that network (Tracy et al. 1994). 546

The three key concepts integral to the development of ecomaps are relationships, social networks and support. The word relationship refers to any interpersonal interaction or sense of connection arising from mutual dealings or feelings (Wilkes & Krebs 1998). These relationships adapt and change over time within individual social systems (Hartman 1995). Following the work of Cattell (2001), we have defined a person’s social network as a cooperating group of significant others with whom the person interacts in their daily life. The concept of social networks implies both social interactions or the actions and communications among groups of people, and social relations or bonds that exist between people in the context of their day-to-day lives (Giddens 1990). Supportive networks include those whom the person nominates as having positive or beneficial influences in their lives. Network members may arise from personal relationships, including families and communities; or institutional relationships including work connections or interactions with formal structures, such as the health care system. The concept of support and a carer’s need for support is well represented in the literature. More specifically, it identifies support as emotional and tangible support (Garwick et al. 1998, Goldstein & Leigh 1999), mutual aid (d’Abbs 1991), trust, including someone to talk to (Bolmsjo & Hermeren 2001, Cattell 2001), and assistance with household chores, financial assistance and personal care (Schofield et al. 1998). A variety of terms, including words like strengthening, encouraging or sharing the burden, are all relevant when discussing the needs of carers of people with MND. Early et al. (2000) used a modified ecomapping process in social work practice to identify the relationship between the needs of people who were dying and the formal and informal support provided. Mapping enabled the researchers to promote awareness of the composition of the support network and to identify the association between the types of relationships, for example intimate, kinship, or formal, and the kind of support available to the people who were dying. Given the value of ecomaps as a clinical tool, we decided to use the strategy as part of a repertoire of research tools to gather data about the social networks of carers of people living with MND. Informal caregiving is a complex and often isolating role. As researchers, we wanted to identify the people who are potentially available to informal carers as part of their support network throughout the caring trajectory. We considered that visually mapping a social network and its relationships could provide insight for carers about who is available to them and could help them to identify any untapped resources (Tracy et al. 1994). It could also be useful to be able to identify the type of relationship held with different people and to correlate this with the level of

2005 Blackwell Publishing Ltd, Journal of Advanced Nursing, 50(5), 545–552

Methodological issues in nursing research

Ecomapping as a research tool

emotional and material support, or the types of actions that would be acceptable for that person to be involved in as part of caregiving. Relationship types would include professional or acquaintance, casual friendship, close friendship and intimate relationships. We anticipated that relationship types would vary according to perceptions of the basis for the relationship, the norms governing the relationship, and its length and closeness. We were looking for a way of representing the diversity of relationships, including practical support in the form of errands and meals, alongside emotional support or more intimate personal care requirements. We decided to use ecomaps because of their capacity to capture diagrammatically the current situation in a consistent, standardized format that provided a visual trigger for discussion of stressors and available support (McGoldrick et al. 1999) in subsequent interviews.

Constructing an ecomap Ecomaps are diagrams consisting of an inner circle that normally contains the household in a geogram (family tree) format, surrounded by other circles representing the elements in their social network. Relationship lines are constructed between the inner circle and each individual circle depicting the strength of the relationship and the flow of resources. The strength of the relationship can be illustrated in a variety of ways. Common among these are either the thickness of the line or the number of lines used (Hartman 1995) to depict the difference between a professional- or acquaintance-type relationship and a close relationship (Wright & Leahey 2000). When using ecomaps with families, the multiple line option enables them to draw their own lines, reducing the conjecture that might occur over interpreting thickness of lines (see Figure 1). Further clarification can be added with a

Brother

Golf partner

Lions club

Sister Daughter

Work mate

Son Neighbour GP

Figure 1 Format of an Ecomap.

brief comment written on the connecting line (Hartman 1995). A slashed or squiggled line is used to indicate problematic relationships and may be used alongside straight lines when necessary. Arrows can also be included on the lines to indicate the flow of resources. The lines into and out of the household circle depict the strength of the relationship and the energy and resources that flow between the household and the resources. In our study, arrows were used when a carer specifically identified that they were the initiator of the interaction. In other instances, the arrows indicated a mutual relationship. Multiple lines were one indicator of the strength of the relationship, as defined by the carer’s perception of the satisfaction that they derived from the relationship at that point in time (McCarty 2002). Circles are constructed outside the household circle, and the family or participants identify their network by naming these circles. Prompts to begin this process of network mapping could include health care professionals; work, school, community, religious, or sporting groups, family members, neighbours and friends (Tracy et al. 1994). When mapping is carried out over several interactions with families rather than as a single assessment, more reliable data are collected. However, Tracy et al. (1994) caution that accuracy in reporting relationship types may be compromised by relationships between those present when the map is constructed. For example, a stressful relationship between partners may be represented as more positive when constructing the map with other members of the family unit present.

The process of ecomapping in data collection In this section, we explain the processes we used to introduce the ecomap and undertake the collaborative mapping exercise. After spending a few minutes getting to know the people present in the room at the time of interview, an overview of the study was given and the outline of the interview clarified. At this stage the ecomap was introduced and the relationship mapping process explained with the aid of two diagrams. The first diagram was a simple ecomap with examples of the different relationships indicated (Figure 1). The simplicity enabled the process of mapping to be explained without the distraction of complex detail often found in a completed map. Participants were able to visualize how different relationships could be depicted and begin thinking about who might be included in their ecomap. A modification to the ecomap was developed to meet the needs of the study. The circle that usually represents the boundary between household and community was modified to include only the dyad consisting of the primary carer and the person living with MND. This enabled all peripheral


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carers, including other members of the household, to be represented outside the circle, giving a clearer picture of the support network for the dyad within the circle. The lines into and out of the dyad circle depicted the resources and strength of the interaction that flowed between the dyad, with the identified resources indicating the strength of the shared experience. Members of social network and the dyad could be located differently within these networks. Occasionally, the relationship between the primary carer and an individual in the network was different from their relationship with the person living with MND. In these cases individual lines were constructed directly between the people involved. Field notes made on completion of the interview recorded those present during interview. The second diagram, a completed detailed ecomap representing the diversity of possible resources, helped the carer to visualize the reality of ecomapping and was shown to them as an example of the process. In our study, to maintain confidentiality of the data in the preparatory stage, an illustration from a textbook was used. The researcher then produced a previously prepared A4 sheet in landscape format with the date and carer code at the top of the page, ready to develop this participant’s ecomap.

Collaborative ecomapping and validation of data Ecomaps can be constructed in three ways. The interviewer may represent data as they perceive it, the interviewee may do this with assistance from the interviewer, or there may be collaborative discussion between the interviewer and the interviewee (Hartman 1995). The first option of representing the data as constructed by the interviewer as outsider (an etic view) means that the participants have no control over the resulting ecomap, especially if the data were collected in a single interview. We considered that the validity of this approach would be limited because it would not give participants an opportunity to interact with the ecomap and further explore the nature of their social network for themselves or with the researcher. If the researcher employed the second option, where participants as insiders (emic view) developed the ecomap themselves, it could be argued that the resulting ecomap might be incomplete as the participant might forget to include elements (Tracy et al. 1994); this would reduce the effectiveness of the ecomap in displaying all sources of support and nurture, and would risk the validity of the data. The third option of developing the ecomap in collaborative discussion enables an interactive and reflexive relationship to occur as the participant represents their perceptions of the social network, while at the same time being prompted by the researcher to 548

consider elements that they might have forgotten. Researchers need to ensure that control of the ecomapping process is constantly negotiated with the participant, being careful not to influence the outcome, while accurately reporting the data as perceived by the participant (Grbich 1999). Using this collaborative approach enables the participant to visualize their social network and the value of these relationships to them. The researcher is also able to use the ecomap data as they emerge to ask questions relevant to the research topic. In our study, we took the collaborative discussion approach. None of the participants was familiar with constructing ecomaps, and the time and effort required to learn would have increased interview burden. If they had been constructed only by interviewer perception this would have left too many gaps in the diagram and reduced the validity of the data. Collaborative discussion in which the ecomap was constructed in full view of the carer (interviewee) ensured that continuous validation checking could be undertaken, with additions and alterations evident to both parties. The ecomap could also be modified as the interview progressed and the carer became more comfortable with this type of data representation. As issues were discussed and data arose, the interviewer drew the information on to the ecomap, indicating the role and validating the strength of the relationship with the carer. Data generated by the ecomap were mostly supplied by the primary carer; however, in some interviews the person diagnosed with MND had input into the content and validation of the maps. This may have influenced the categorizing of the relationship as carers can have a different perspective on care from that of the person being cared for (Goldstein & Leigh 1999). However, the reality for most people living with MND is that life is constructed principally around the diagnosed person and the primary carer or the caregiver and care receiver dyad (Coeling et al. 2003), and therefore this tension is part of the context of caring and needs to be captured faithfully as part of the perceived reality (Grbich 1999, McCarty 2002). If categorizing of the relationship was different between the primary carer and the person living with MND, then the researcher could choose to dissolve the dyad on the map and construct two separate maps, or seek to reschedule the interview for a time when the person living with MND was not present and construct the map with the primary carer only. Clarity around these decisions would be evident in interview transcriptions and recorded in field notes. No dissention between the carer and person diagnosed was evident during the interviews, but in one interview the decision-making power exercised by person living with MND was very evident. In other interviews, where the diagnosed person had input into the ecomaps the dyad relationship appeared to be very open,



with the person diagnosed often including people the carer had forgotten and the dyad concurring on categorizing the relationship. Once the interview was completed, the ecomap was copied and filed ready for the second round of interviews. In preparation for the second and later the third interview, a line was drawn through the date to indicate the change, while preserving the legibility of the original date, and the new date was added. After the initial greeting, the format of the second or third interview was outlined and the primary carer reviewed a photocopy their ecomap in preparation for the ensuing questions. Again, the ecomap was positioned on a surface between primary carer and the researcher so that it could be referred to and modified at any stage. Changes to the original ecomap were made in blue to ensure that they were easily distinguishable from the grey/black of the photocopy. The use of red ink was avoided because of its association with corrections. The researcher did not want to be seen as passing judgement or degrading what had previously been occurring. Participants needed to be able to add people, change relationship lines and or delete people from the ecomap as their network had evolved and changed over the intervening months. Participants, now familiar with this form of data representation, keenly engaged with their original data and made the necessary modifications in what appeared to be a more relaxed manner.

Carer use of ecomaps All participants from the 18 families in the study actively engaged in providing data for their ecomap, and by the second interview some participants took responsibility for making the changes to the ecomaps themselves as the conversation progressed. Questions focusing on the composition of carers’ networks elicited responses that included both formal or paid health care workers and informal carers such as family, friends and associates. Carers represented the relationships with most formal carers and health care professionals by using single lines; however, some indicated the need for two lines to general practitioners, community nurses and/or specific staff members employed by the MND Association. For example, carer 4B, discussing agency carers, said, ‘They’re good. Yeh, I’d give them two, they are good’. Carers depicted relationships between friends, associates and family members with anything from one to three lines, and frequently spoke about their involvement in the care trajectory to date. A pre´cis of this information was added to the diagram to assist with subsequent discussions. Comments such as the following were appended to the ecomap: carer 11B: ‘ADLs (activities of daily living) on Thursday’; carer 2W: writes letters to (person


diagnosed with MND – cannot speak), phones (primary carer) every week’; carer 9L: ‘Feeds lunch’. Visual representation of relationships can be confronting for carers, especially if difficulties with a particular relationship are being experienced. Therefore, it is essential that time is taken to build rapport before the researcher can expect to obtain an indication of the types of relationship among the potential support networks. Some carers orally reported friction or dissatisfaction with a relationship but were hesitant to display this as a visual representation. For example, carer 9L said: ‘Their personal relationship is very tight (meaning close). Um (hesitation) Three (lines), but some tension, do you think?’ The words tension or strain were used to express interpersonal difficulties, such as occurred when the person living with MND was very demanding, or a peripheral carer wanted to direct the care. Carer 10B reported that his motherin-law always wanted to puree his wife’s food and pushed for the use of formal care when this was not consistent with the desires of the person living with MND. The first author prompted with, ‘It sounds like we need a squiggled line here’. Some carers agreed, while others hesitated and questioned who would see the ecomap. Even when reassured that this was a confidential document that was coded and not named, some carers would not allow this representation to be made on the first map, but were more receptive as trust was built in the second interview. McCarty (2002) recognizes that perception rather than actual relationship is an issue for researchers recording social network data, however perception has a direct correlation to behaviour and therefore is a reasonable representation of network relations. Some participants had difficulty in categorizing their relationships, especially when there were individual incidents that led to intermittent tensions in relationships. For example, carer 9L said: ‘Three or four of them want to see (person diagnosed with MND) every week but he doesn’t want to see anybody’. As the ecomap was used concurrently with the interview process, the nature of any tension was recorded in the interview data and correlated with the ecomaps during data analysis. This tension was overlaid by the nature of the illness and intensity of caregiving, thus magnifying sources of tension external to the caregiving context. For example, carer 18S said: ‘‘My brother’s asking me, ‘Why, what have I done?’, I don’t know, I’ve tried (to explain) and can’t’’. Carer 15D described the friction as: ‘She came up here (to help) and caused fireworks’. Participants were willing to involve themselves in ecomapping, and by the second interview were keen to ensure that everyone was represented. Carer 8S said: ‘I think we have Bill there somewhere, didn’t we?’ In some situations the role of the person was very important and carers would talk about that for some time.


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Similarly, the need to think about the number of lines used to categorize people assisted carers to reflect on the focus and strength of their support. Carer 8S: ‘I think it helps me…doing something else…outside the house…absolutely three lines’; Carer15D: ‘She’s about one (line) we won’t go too far with her’. Carer 11B: ‘She’s re-establishing; I think she’s making an effort to become a two line person’.

Interestingly, some carers expressed constraints with the one to three line system, and Carer 4B asked: ‘Can I give her ten (lines)?’ In order to maintain a standardized approach to the data collection, this variation was not allowed. Sometimes the tenor of the interview made it important just to note the source of support at that time but not draw in the relationship lines until later in the interview when the topic could be broached again and data obtained in a more relaxed interchange.

Drawing in the changes When carers reviewed their ecomaps from a previous interview, changes occurred. Some discovered the need to include people they had forgotten, while others changed the nature of the relationship and the type of support provided by making changes to the number of lines allocated and adding tension lines where needed. For a small number of dyads, the ecomap remained relatively unchanged. These were usually people who had been living with the illness for several years with a very slow-moving trajectory. Carer 6C did not make any changes to his ecomap. He, together with his wife and sister, had immigrated in their retirement, their network was small from the beginning and contained people with their own health problems who could not increase their level of supportive care. Over the period of the study, the disease progressed to the point of the woman with MND dying at home, cared for mostly by her husband, supplemented by district nurses. Carer 8S drew a circle and two lines to add in some cousins – ‘the type you only see at weddings and funerals’ – who had become a significant part of the supportive network. Others changed the relationships with formal carers. Lines to therapists who had been useful in the early stages of the illness but were no longer part of the care were deleted, while lines to other formal carers were strengthened or tensionladen as the care trajectory continued. In the second interview, two carers indicated tension lines with personal care agency staff that were constantly changing and therefore needing to be trained by the informal carer, or not staying long enough to build rapport. For others, the changes were 550

more problematic as they noted that their network declined. One participant, who had moved the family unit after the diagnosis, to be geographically closer to the extended family, depicted some tension lines mixed with closer ties in the first ecomap. During the second interview about 4 months later, she drew a purposeful line through the family members and said, ‘They’ve all gone’. Her family, whom she had depended on to help, could not cope with the situation and had ceased interaction. Other carers noted that some people had become distant as the complexity of the illness increased. Connections that had been depicted by two lines previously were now changed by carers to one line or removed altogether.

Discussion Ecomaps are a very useful tool for mapping and tracking relationships between clients and the systems with which they interact over time, capturing their own perceptions (McCarty 2002) in a standardized, visual manner (Hartman 1995). In our research project, ecomaps provided a rich source of ethnographic data while at the same time presenting an opportunity for primary carers to identify sources of nurture and tension (Hartman 1995). They thought about the roles various members of their networks played in caregiving and evaluated what this meant to them before they decided how many relationship lines to draw within the scope of the standardized diagrammatic representations. Illustrations on the ecomaps gave us insight into the availability of support for primary carers, how their interpersonal relationships affected the roles they adopted and, more specifically, the kinds of relationships that enabled people to be involved in different levels of caregiving. An advantage of ecomaps was their capacity to denote and distinguish between emotional support and direct care through additional notation. Revisiting this information over three interviews enabled expansion and further validation of the data. The ecomap also provided a basis for further questioning to examine how decisions about the type of involvement were made, the characteristics of the relationship that enabled continual involvement or disengagement from involvement over the trajectory of the illness. Thus, ecomaps were a catalyst for obtaining more in-depth data, with the illustrations providing discussion triggers for both researchers and interviewees. The visual representation provided by the ecomap was easily modified and updated at each interview. Changes in the support network were evident at a glance, and the dynamic nature of available supportive care was displayed for ready analysis. These data were correlated with oral data, giving a more complete picture of deficits and resources contained in the support network. These data can



be analysed using computer-assisted data analysis software. In our study, the ecomaps were connected to the interview transcripts in the NVivo computer program (Bazeley & Richards 2000) via DataBites and cross-checked with interview data to add insight into the changing supportive care needs of people living with MND as the trajectory progressed.

Lessons learned It is essential that a trusting relationship between carer and researcher is facilitated so that the data recorded resembles the carer’s construction of their world. Occasionally, reassurance that the ecomap was only coded and no names were used facilitated the representation of problematic relationships that might not have been discussed otherwise. Although some misrepresentations could have occurred, especially when interviews were conducted in family groups or with both members of the dyad present (Tracy et al. 1994), a similar problem is faced regularly in family interviews. Researchers also need to be sensitive to the dynamic nature of caregiving and the influence this might have on a carer’s perception of a relationship at any one time. Fluctuations in relationship lines need to be further tested by asking qualifying questions. During the process of data collection it became evident that people needed to identify who was in their network first, and then go back and categorize the relationships and add the lines. Researchers need to be aware that asking participants to categorize each time they mention someone in the network can disrupt the flow of the discussion, risking the loss of data when recall is interrupted. Categorization is sometimes better left until a later time in the interview; however, each case needs to be evaluated at the time. The scope of diagrammatic construction required in the ecomapping process was a limitation for some participants. Three lines were inadequate to capture the strength of a number of supportive networks. This needs to be explored in further research. Harper (1994) confirms the validity of using visual images in conjunction with text to give deeper insights in sociological research. While ecomapping is an excellent visual tool, its use is limited to research on the composition and content of networks. The mapping process needs to be undertaken in conjunction with a qualitative interview and/or participant observation to give contextual information necessary to gain a wider perspective on the situation. If interview data alone were used, many questions would need to be asked about specific people in the support network to ascertain their changing roles and identify those who had moved in and out


of the support system. Ecomapping throughout the interview process enables data collection to be as rich as possible, and ensures that opportunities to explore the issues raised by the mapping are not overlooked. Participants found it valuable to review the ecomaps gaining insight into their sources of support and the changing dynamic of their support network. Ecomapping could be applied in other nursing research seeking to identify available resources to support health. Following on from our study, ecomapping could be used in studies of the support available to people experiencing other diseases that require long-term care in the community. Mapping supportive care networks would be a useful inclusion in research exploring more effective discharge procedures and follow-up care after hospitalization, providing important information for health care professionals when planning for resource provision for community care. Ecomapping would be an effective research tool to demonstrate the social support available to people seeking to change health and lifestyle behaviours, indicating the impact that the support system may have on the efficacy of behavioural change.

Conclusion We found that ecomaps were an innovative and effective research tool for mapping the supportive care networks of informal carers. They gave a visual representation of both actual and potential sources of nurture, while also indicating possible sources of strain that were further explored in interviews. Being able to see the network and to track its changes over time provided us with systematic visual representations of changing relationships systems. However, caution needs to be exercised in situations when carers may not feel comfortable enough to map their story, and data may need to be collected over time, responding to the context, building rapport and considering carers’ perceptions of the dynamic caregiving role.

Acknowledgements The authors acknowledge the Motor Neurone Disease Association for their support and the carers of people living with Motor Neurone Disease for their willingness to participate.

Author contributions RAR and AFS conceived and designed the study and drafted the manuscript. RAR performed the data collection and analysis. AFS supervised the study. AFS, RAR and JB critically revised the paper.


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What is already known about this topic • Ecomaps have been successfully used clinically by social workers to assess family supports, but the literature discussing them is limited. • Ecomaps are identified as a tool in family nursing assessment, but research has not been found about ecomap application and its value as a research tool.

What this paper adds • Ecomaps are an innovative, participatory data collection tool for nursing research. • Ecomapping networks over time gives insight into the ongoing supportive care needs of family caregivers. • Ecomaps can be used in further research associated with discharge planning and health management.

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