Article Text
PDF
Abstract
Introduction Research indicates that social networks and roles are disrupted throughout the entire trajectory of someone living with a brain tumour. Young adults aged 18–35 years are particularly vulnerable to such disruption because they are in a process of establishing themselves. Pre-existing social roles and support networks of young adults living with a primary brain tumour may change. This study aims to identify the social networks of young adults aged 18–35 years diagnosed with a primary brain tumour and to map how the diagnosis and disease course affects the social network in relation to changes in relationships and roles over time.
Methods and analysis The study adopts a longitudinal design with a convergent mixed methods approach to describe the social network of young adults. The study utilizes a quantitative approach to social network analysis to measure network size, composition and density and a qualitative approach with interviews to gain insight into young adult’s narratives about their network. Network maps will be produced, analysed and all the findings will then be compared and integrated. Interviews and network drawing will take place at the time of the diagnoses, with follow-up interviews 6 and 12 months later. This will shed light on transformations in network compositions and network support over time.
Ethics and dissemination The study has been approved by the Danish Data Protection Agency (ID P-2022-733). Written informed consent will be obtained from all patients. The results will be disseminated through a peer-reviewed journal and reported at local, national and international conferences on brain cancer.
- NEUROSURGERY
- Neurological oncology
- Adult oncology
- Neurological oncology
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Statistics from Altmetric.com
STRENGTHS AND LIMITATIONS OF THIS STUDY
A well-designed interview guide and ongoing data monitoring will address interviewer bias in probing style and incentives.
Differences in alters (social relations) may result from either actual change or naming elicitation unreliability.
The transferability of findings to other populations is limited because of a small sample size.
Data are collected in a single-centre setting, thereby limiting the generalisability.
Introduction
Each year, approximately 1560 people in Denmark, (population of 5.5 million) are diagnosed with a primary brain tumour, with children and young adults accounting for approximately 3% of those diagnosed.1 Young adults (ie, those aged 18–35 years) experience physical, emotional and psychological changes. While seeking independence, they still depend on social networks, yet still in need of having a safe base.2 Brain tumours can be either benign or malignant.3 In terms of brain tumour types, young adults are most likely to be diagnosed with pituitary tumours, gliomas (astrocytomas, oligodendrogliomas and ependymomas), medulloblastomas and germ cell tumours.4 In this study, we use the blanket term primary brain tumour and thus do not distinguish between tumour types. Although young adults account for just a small proportion of primary tumour diagnoses in Denmark each year, they are a particularly vulnerable group,2 5 with support needs that differ from those of older adults diagnosed with a primary brain tumour because of their life stage.5–7
A brain tumour may lead to functional impairments that affect relationships and reduce social participation.8 As a result, pre-existing social roles and support networks may be challenged.8 According to Abrams et al, as compared with older adults, young adults rely on different sources of social support to cope with their diagnosis and treatment.9 The family and in particular the mother play a significant role in providing support.9 In addition, peers and healthcare professionals generally play an important role in providing emotional and social support.9
The constitutive elements of relationships comprise symbolic, affective, strategic and power exchange aspects.10 This means that they can be more or less emotionally involving or more or less balanced in terms of different levels of dependence of one actor on another.11 Previous research has indicated that strong social ties can buffer the adverse effects of chronic illness on psychological well-being.8 According to a meta-synthesis of data on individuals aged 20–88 years diagnosed with a brain tumour, the diagnosis affected social networks in significant ways.8 Those diagnosed with a brain tumour relied on their pre-existing social networks shortly after the diagnosis and in the early stages of the disease.12 13 However, in later stages of the disease, they found it difficult to attend social outings, which hampered their ability to both retain existing friends and make new friends.14 In addition, they reported that some friends and family members avoided them due to their own anxiety or discomfort.12 Changes in physical abilities, cognitive status and personality resulted in loss of and changes in social roles for most of those diagnosed with a brain tumour.15 Based on the results of the meta-synthesis, the authors concluded that there is a need for healthcare professionals to recognise the importance of people’s social networks for well-being and for education of friends and family to enable them to support those diagnosed with a brain tumour to communicate their preferences for social activities.8 They also concluded that there is a need for interventions to enhance the well-being of individuals with a brain tumour by maintaining relations between and within their social network.8
No previous research has focused specifically on how changes in social networks over time influence the capacity of young individuals to manage ongoing health issues. In terms of young adults diagnosed with a primary brain tumour, mapping their social networks may identify strategic positions in these networks that play specific roles in helping them to cope with their condition. Although the social networks of older adults with long-term health issues may serve as a substitute for formal care, it is not known whether this is also the case for young adults.16 Therefore, it seems important to facilitate and encourage the resourceful relationships in the social network after the young adult has been diagnosed with a brain tumour and receives neurosurgical and oncology treatment, as well as follow-up treatment in an outpatient clinic.
Social networks may influence young adults’ quality of life, their level of hope and self-determination and changes to the social network may have positive or negative impact on the young adults’ adaptability and vulnerability.17 Adaptability allows the young adults to navigate throughout the disease trajectory, while vulnerability exposes the young adults to potential negative impacts, like social isolation or loss of support.18 Network mapping can enable an understanding of which network members are particularly important for young people’s abilities to cope with and master their somatic and mental health and possible social challenges in relation to their disease.4
Study aim and research questions
The aim of this longitudinal mixed methods study is to identify the social networks (support, composition and structure) of young adults aged 18–35 years diagnosed with a primary brain tumour and to map how the course of the disease affects the trajectory of these networks in relation to changes in relationships and social roles. The research questions will be addressed using an integration of quantitative and qualitative data, and they are as follows:
Who do young adults aged 18–35 years of age diagnosed with a brain tumour consider as their social networks? (Quantitative and qualitative data)
Which network connections (ties) do young adults draw on during their disease trajectory? (Quantitative data)
To what extent do young adults’ social networks last, what causes them to change and to what extent do they change throughout the disease trajectory? (Quantitative and qualitative data)
Methods and analysis
Study design
The study will use a longitudinal mixed methods design to explore social networks of young adults aged 18–35 years diagnosed with a primary brain tumour. Social networks can be broadly classified into two categories based on whether the individual or collective member of the network is the focus or the entire web of social relationships that connects them.19 In this study, the focus is on egocentric networks, which are networks centred around specific individuals.19 A convergent mixed methods approach with an egocentric social network analysis and interviews with the participants will be conducted. Mixed methods approaches are especially appropriate for analysing content, accessibility and dynamics of social networks.20 The study places emphasis on social support, a network-based social phenomenon that focuses on the resources in the ties of the network.21 Wellman’s lists of five forms of social support will be used.22 They include the following: doing things, giving and lending things, helping with personal problems, helping with information and sharing activities, values, interests and interaction. In this study, participants (egos) are asked a battery of questions relating to the five forms of perceived social support relationship provides, along with questions on the quality of the support provided (see box 1).20 To elicit information about the alters in the EGO-net, a so-called name generator method is used.23 Name generators enumerate alters in the respondent’s network by asking respondents to list those people with whom they share the criterion relations (the five forms of social support).24
Examples of questions
Who helps you with:
Contacting your study or workplace regarding information about sick leave/status of your disease.
Contacting the municipality/job centre.
Contacting your general practitioner or the hospital.
Transport to doctor appointments/rehabilitation.
Filling out forms/applying for grants.
Practical chores at home.
Babysitting/pick-up and drop-off the child/children.
Where/from whom would you seek help:
In case of questions or doubts about your disease/treatment.
If you feel physically ill.
In case of family or personal problems.
If you are sad/need psychological support and someone to talk to.
Follow-up questions:
Is there anything that strikes you about the number of your relationships?
Do you think there are many or few relationships?
I notice that you have not included any relationships from your work/your family/your circle of friends/xx.
Can you tell me about a typical episode in relation to your parents/your colleague/your friend/X?
What expectations does X have to you?
What kind of hopes does X have for you?
What does X require of you?
Can you meet those requirements or are you not interested in meeting them?
Study participation and recruitment
A study participant must meet the following inclusion criteria: (1) aged 18–35 years, (2) able to understand, read and speak Danish or English and (3) able to give informed consent about participation. Young adults are defined as being aged 18–35 years25 who have been referred to a neurosurgical outpatient clinic because of symptoms of a brain tumour and imaging findings suggestive of a brain tumour. These young adults have not yet been diagnosed with a primary brain tumour. All participants that met eligibility requirements during the recruitment period will be invited to participate in the study. Participants will be recruited through the department of neurosurgery, Rigshospitalet by a nurse care coordinator. Participant recruitment and enrolment were conducted from July 2023 to July 2024, and as the incidence of brain tumours in young adults is low, we expect to include 10 patients.
Data sources
Interviews and mapping
We will collect quantitative and qualitative data simultaneously in the same interview. A ‘paper-and-pencil’ method will be used when collecting the data on network relationships from the young adults’ viewpoints.26 When preparing the network map of relationships, the ego (ie, the young adult) is placed in the centre, and interaction relationships (alters) are placed around the ego using concentric circles, depending on significance.27 This visualisation method enables the young adult to visualise and qualitatively evaluate their own networks. At the same time, the method enables a mutual understanding between the young adult and the researcher about the structure and significance of the network and of possible interpretations. It also enables desirable alterations to be considered.
First, the young adults will be asked to identify the names of alters with whom they have supportive ties. They will then be asked to provide information about the alters in terms of demographics (age and gender) and relationship characteristics (type, duration and frequency of contact). The young adults will also be asked whether the alters know each other. A semistructured interview guide that covers two main questions with several open-ended questions will be used (see box 1).
As the young adult answers these questions, a cocreated map will emerge with alters (ie, the social relations in the network) and the relations among the alters (ie, the ties that connect the alters) (figure 1). Thus, a map will be produced consisting of a set of alters and a set of relations connecting them. The use of initials or nicknames for anonymity of the alters will be suggested.
Example of an EGO-net Inspired by Crossley et al (11, p.2).
In addition, demographic characteristics (gender, age, socioeconomic status, education, parents’ educational background, disease-related journal data related to the surgery, such as reduced vision, decreased strength in extremities or executive difficulties) of the participants will be collected and will be accounted for in the analysis.
With this convergent mixed methods approach, three types of linked data will be produced during the interviews with the young adults: quantitative (containing information about the egos, the number of network members, the attributes of network members and their relationships with each other), qualitative (participants narratives about their network) and a visualisation of the network (network maps).28 First, the quantitative data will produce data on the size of the ego’s network (ie, the number of alters), composition of the ego’s network (ie, the proportion of types of alters and their characteristics) and structure of the ego’s network (ie, the density in terms of the proportion of alters who know each other divided by all possible alters). Second, the qualitative data, which will comprise audio-recorded interviews with the young adults during the net drawing, will comprise their narratives on their alters. Finally, the network maps will be drawn first by the respondents during the interviews and then processed using UCINET software29 to create a visual representation of the social networks where different types of variables, such as demographic data (age and gender), are included alongside data on social connections and interactions to gain a more nuanced understanding of the social networks.
Data collection
The young adult will be asked by a nurse care coordinator in the outpatient clinic to produce a drawing of their personal network three times; at baseline, after 6 months and after 1 year. In addition, data will be collected on the number of times the nurse care coordinator is in contact (via electronic mail, telephone calls, face-to-face and/or online events or meetings) with the patient, besides scheduled appointments within the study. This to monitor the significance of the nurse care coordinator’s role to the young adult. The nurse care coordinator is trained in the network mapping methods as part of a family system nursing course.30
The interviews will be audio recorded and transcribed.
Data analysis
Social network analysis
The analysis of the content of the network drawings of the young adults and the interviews will shed light on the dynamics of their social networks over time and the ties in these networks.31 For example, they will show which alters take up similar positions in the networks based on their ties, which alters, with what characteristics (social roles), prevail over time, and how the alters are distributed across individual characteristics. Particular focus will be placed on young adults’ stories about alters and their ties and the structures that are consequentially considered meaningful by the young adults.32
The quantitative analysis performed within EGO-net aims to offer an insight into the structure and makeup of participants' networks. This analysis encompasses the computation of summary statistics, including network size (ie, the count of listed contacts), network composition (eg, the ratio of female or family member contacts within the network) and network structure (ie, network density, representing the proportion of contacts who are acquainted with each other out of all potential connections). We will obtain and include information in the analysis related to, for example, tumour progression with the trajectory of the social network. Each young adult will be considered as a case and similar cases (based on network characteristics) will be used as exemplars to highlight the degree to which changes in social networks and changes in health management have positive, negative or little influence on health management.16 A viewpoint centred on social networks in the context of managing health conditions shifts the emphasis from an individual’s personal self-care actions towards a more comprehensive assessment of the resources accessible for aiding young adults dealing with an acute illness such as a brain tumour. The study pays particular attention to how the health and self-management of the young adults are intertwined with the attributes of their social networks, the assistance they receive from these network members and the dynamics of the relationship between informal care within the network and the utilisation of formal healthcare services.
The young adults’ narratives will be analysed by performing an inductive thematic analysis inspired by Braun and Clark33 using a computer-assisted analysis, QSR International NVivo V.10. Braun and Clark’s thematic analysis comprises six steps: (1) familiarising yourself with your data, (2) generating initial codes, (3) searching for themes, (4) reviewing themes, (5) defining and naming themes and (6) a producing a report.33 This inductive process will be conducted by all research team members and include multiple readings of transcripts and coding the textual data to identify emerging themes and patterns.33 Appropriate techniques for ensuring analytic rigour will be employed, including thick description and reflexivity.33 The process will continue until no new categories emerge.
When the quantitative and qualitative data is collected, an integration process will be conducted during the analysis and in the presentation of the results.
Ethics and dissemination
The study has been approved by the Danish Data Protection Agency (ID P-2022-733). Informed consent will be obtained from all study participants, in accordance with the Declaration of Helsinki. This study will contribute to the literature by advancing knowledge on young adults’ adaptability and vulnerability throughout the disease trajectory and shedding light on changes in the dynamics of their social networks over time. The results will be disseminated through a peer-reviewed journal and reported at local, national and international conferences on brain cancer.
Patient and public involvement
No patients or the public were involved in the design and conception of this study.
Ethics statements
Patient consent for publication
Footnotes
Contributors RG (corresponding author) has contributed to the planning, conducting and reporting of the work and submitted the study. SN has contributed to the planning, conducting and reporting of the work. MB-P has contributed to the planning, conducting, collecting data and reporting of the work. ALH has contributed to the planning, conducting and reporting of the work. RG is responsible for the overall content as guarantor and accepts full responsibility for the work and the conduct of the study, had access to the data and controlled the decision to publish. The corresponding author attests to the fact that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted.
Funding This study was supported by the Danish Health Confederation and Danish Regions (grant number 2657). The funding body does not play any role in the review process.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.