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EDITED BY
Maha Atout,
Philadelphia University, Jordan
REVIEWED BY
Intima Alrimawi,
Georgetown University, United States
Eve Namisango,
African Palliative Care Association, Uganda
Panagiotis Pentaris,
Goldsmiths University of London,
United Kingdom
*CORRESPONDENCE
Marie Clancy
m.w.clancy@exeter.ac.uk
RECEIVED 11 September 2024
ACCEPTED 04 December 2024
PUBLISHED 06 January 2025
CITATION
Clancy M, Bradbury-Jones C, Phillimore J and
Taylor J (2025) Exploring the experiences of
children’s palliative care for forced migrant
families in the United Kingdom: an
interpretative phenomenological study.
Front. Pediatr. 12:1494938.
doi: 10.3389/fped.2024.1494938
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© 2025 Clancy, Bradbury-Jones, Phillimore
and Taylor. This is an open-access article
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which does not comply with these terms.
Exploring the experiences of
children’s palliative care for
forced migrant families in the
United Kingdom: an interpretative
phenomenological study
Marie Clancy1*, Caroline Bradbury-Jones2,
Jenny Phillimore3and Julie Taylor2
1
Academy of Nursing, Department of Health and Care Professions, Faculty of Health and Life Sciences,
University of Exeter, Exeter, United Kingdom,
2
Department of Nursing and Midwifery, School of Health
Sciences, College of Medicine and Health Sciences, University of Birmingham, Birmingham, United
Kingdom,
3
School of Social Policy, Sociology and Criminology, University of Birmingham, Birmingham,
United Kingdom
Introduction: This study focused on understanding the experiences of forced
migrant families and the health care professionals who care for them within
palliative care. Palliative care for children requires an active, holistic approach to
care, with a focus upon improving quality of life. Forced migrant families
encounter a range of additional challenges including the loss of family,
belongings, and all sources of familiarity and support. The difficulties of navigating
complex bureaucratic systems can confound access and communication difficulties.
Methods: Interpretative Phenomenological Analysis methodology was used in
this study to privilege participant perspectives and apply an active in-depth
cyclical process of reflection and reflexivity. Advisory group members provided
expertise in childhood illness, palliative care and forced migration, throughout
the study. The Silences Framework offered novel theoretical and philosophical
concepts, which helped to situate and prioritise the “silences”within the
marginalised discourses of forced migration and palliative care. Seven family
members and seven health care professional participants were interviewed
from hospital, hospice and community palliative care settings in the UK.
Results: Four overarching themes were identified related to experiences of loss
and grief, communication, faith and coping strategies and alienation and
discrimination. Compassionate, empathetic, family-centred care which valued
family belief systems and coping strategies, optimised care. Learning with and
from families was described by all participants, which enhanced understanding
and fostered mutual respect. However, barriers included poor access to
services and resources, protocol-led care, limited time with families,
communication barriers and staff burnout.
Discussion: The findings suggest the need for a specific educational pathway for
palliative care professionals to include spiritual care provision, cultural humility,
and moral reasoning. Interdisciplinary education including the use of lived-
experience expert insights is also advocated. Sufficient time to build
relationships, the importance of interpreter support and the need for better
access to hospice care for forced migrant families is also recommended.
KEYWORDS
children’s palliative care, forced migrant, migration, interpretative phenomenological
analysis, advisory group, refugee
TYPE Original Research
PUBLISHED 06 January 2025
|
DOI 10.3389/fped.2024.1494938
Frontiers in Pediatrics 01 frontiersin.org
Background
This paper presents the findings of a qualitative interpretative
study into the experiences of children’s palliative care for forced
migrant families and those who care for them.
Currently over a 120 million people are displaced globally (1)
with the effects of displacement having social, political and legal
dimensions. The term forced migrant is used as an overarching
term covering persons displaced across international borders and
inside a single country regardless of the reasons for their
displacement (2). All forced migrants share the common ground
of feeling compelled to leave their homes to ensure their own
and their family’s survival. Sometimes these decisions are made
under great duress (3). Conditions of war, political unrest and
economic challenges are likely to interact and contribute to such
decisions (4). The term “forced migrant”includes asylum seekers
who have lodged an application for protection from persecution
(5) and refugees whose asylum claim has been successful (6).
Some forced migrant families seek to come to the UK to find a
diagnosis, treatment or cure for their children, with resettlement
pathways sometimes open to those with children with complex
medical conditions. Other times children fall sick after arriving
in the UK Whenever their children become sick, families
generally experience long and dangerous journeys, alongside the
grief of separation from home and family. Reduced agency and
feelings of disempowerment after leaving all sources of familiarity
are thus common (7). Allen and Ögtem-Young (8) found that
many migrants in the UK described notions of “otherness”and
“foreign-ness”which led to anxiety, uncertainty and instability.
As a result of some of these combined experiences, forced
migrant families often have extensive and diverse needs (9). They
may have mental health conditions such as depression, isolation
and grief. Trauma can result from engagement with asylum
processes with problems including lack of access to essential
resources such as food, accommodation, employment and health
services. Mayblin et al. (10) report on what they call the slow
violence of everyday life. They detail the intense harms that
forced migrants experience at the hands of policy designed to
ensure every aspect of daily life is difficult. They refer to the idea
of necropolitics, of being “kept alive but in a state of injury”
(11, p. 21) which in the case of asylum systems refers to actions
which appear to help asylum seekers, but instead generate
“gradual wounding”, both physical and psychological, including
conditions of destitution and endangerment for those seeking
sanctuary (10). Forced migrants also struggle to access health
and social care in countries of refuge with scholarship indicating
that barriers are extensive and include poverty, administrative
and communication difficulties (12).
The supplementary distress of palliative care may exacerbate
migration trauma by bringing additional uncertainty to those
awaiting diagnosis or facing experiences of critical childhood
illness and periods of instability whilst living in fear of a child’s
death (13). Children with palliative care needs have a primary,
multifaceted, life-limiting condition where there is no reasonable
hope of cure; or life-threatening condition where there may be
viable treatments, but these are not always effective (14). Both
conditions may result in multi-organ deficiencies and disabilities,
requiring many specialists, within hospital in-patient care, respite
in hospice or end-of life care and community settings. The term
“community setting”refers within this study to care offered within
the home or primary care environment, predominately community
nursing, general practice services and special school care.
The prevalence of life limiting conditions has increased 2.6
times since 2010, with increased severity of need a consequence
of cutting-edge clinical developments, which can prolong the
lives of children with the most complex conditions (15). While
we know that forced migration has more than doubled in the last
decade there is a lack of data regarding the number of forced
migrant children requiring palliative care. Poor recording, lack of
ethnicity and migrant-status data mean there is no accurate data
for the numbers of forced migrant children in receipt of
palliative care (15). It is reasonable to assume that these numbers
have increased in line with general trends.
Currently children’s palliative care (CPC) and forced migration
are both neglected in scholarship with gaps in knowledge
compounded when combined. A systematic review (16)
confirmed the paucity of research in these intersecting areas.
Confirming the findings of this review Broom et al. (17)
described divergence of beliefs and expectations as a difficult
balance between institutional, professional and personal values.
The reliance on biomedical priorities by many palliative care
professionals (from this point forward, referred to as
‘professionals) were tangible, with conflict surrounding ethics,
autonomy and the use of traditional medicines. A failure to
recognise or balance competing and conflicting values was seen
as potentially damaging to trusting respectful relationships.
Conversely, time and everyday interactions were considered
important for generating understanding and intimacy between
professionals and patients/families. Such encounters included
informal exchanges and reciprocal moments of understanding (18).
Guo et al. (19) detail specific aspects of frustration, sadness and
desperation post cancer diagnosis for forced migrant families
which was compounded by elements of uncertainty. In the Guo
et al. study family members actively concealed the truth of
diagnosis/prognosis from their relatives to protect them from
difficult conversations. Emami and Mazaheri found that the use
of family members as interpreters led to information being
concealed, which limited professionals ability to share accurate
information (20). However, these studies centred around adult
care and so specific elements of child-to-parent, parent-to-child
and palliative care professional-to-parent/child information
giving, receiving and the potential differences between these
subsets are absent. Additionally, spirituality and faith were
described as life sustaining and enhanced family’s ability to cope
(21). Whilst faith and community support were optimising to
care experienced by patients, these were understandably limited
by the separation of forced migration (21).
Palliative Care Professionals caring for children with palliative
care needs often describe walking a fine line between professional
and personal boundaries, as these become intricately linked
through the building of intense long-term relationships (22).
However, most challenging for professional’s appear to be
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Frontiers in Pediatrics 02 frontiersin.org
difficulties in making appropriate end-of-life and symptom
management decisions. Abdin et al. (23) detailed the complex
and emotional strain of ethical decision making, including the
intense support needs of parents. Palliative care professional’s
detailed moral distress and anxiety when families insisted on
continued interventions against the perceived best interests of the
child (24). Further, the grief when a child dies resulted in
professionals reporting depression (25), guilt (26), sleep
disturbances (9), painful memories and reoccurring thoughts (11).
CPC is complex with many ingrained misconceptions.
Families’belief systems and grief may lead to a reluctance to
engage with specialist services. CPC may also be compromised
by a lack of specialist staff, resources and negative perceptions
(27,28). Many parents report clinical levels of distress and
fatigue (29), with relentless caregiving and responsibility (30).
Long term and community-based trials also detail the effects of
physical and social isolation for parents, with a frequent
exclusion from the workforce and pervasive grief (31). In
addition, there are challenges of controlling physical symptoms
like pain and fatigue, communication difficulties with disabled
children and active child involvement in decision making and
minimisation of suffering (32). A mismatch between the services
offered to parents, standards of care and difficulty in gaining or
accepting support, are also reported (15).
The complexity and individuality of culture is widely debated
(33). Palliative care professional’s recognition of migration
trauma promotes a holistic focus and identification of ways to
address “unique and multidimensional needs”(21). Culture
appears integral to individual identity, with the recognition of
culture as a non-fixed or discrete notion, considered critical to
developing quality, caring relationships (18). Professionals
perceptions seem to link to the development of relationships
when a forced migrant’s lifeworld is understood, but conversely
misconceptions can create additional potential for stereotyping.
Forced migrants may struggle to be involved in research
projects with fear, suspicion and culturally-related concerns
making some individuals reluctant to participate (21). Mistrust of
researchers is thought to be significant so overcoming these
barriers through ensuring active participation in research seems
critical. However, accessibility and inclusivity of the systems and
mechanisms for valuing forced migrant voices in research remain
inadequate. The limited use of advisory groups, lived experience
or patient and public involvement (PPI) within studies involving
forced migrants offers a further barrier to their meaningful
engagement in research.
When considering the cultural needs for families experiencing
palliative care, the report and clinical documentation published
by leading CPC Charity Together for Short Lives (18) and The
Royal College of Nursing (21) advocates for the importance of
communication, religious and spiritual care, with a focus on
needs, wishes and beliefs. There has been limited clinical
consideration and consequently no guidance produced concerning
BME children’s palliative care. Looking more widely at guidance
around adult palliative care one review within the BME
community details problems with access to and provision of
palliative care, poor monitoring of ethnicity, limited access to
interpretation, mistrust and poor communication with
assumptions and stereotypes permeating interactions (34).
A report which examined Muslim family’s healthcare beliefs with
children, families and adult patients also highlighted barriers to
accessing care. This included reputation, community expectations,
awareness of services, geography, education and confidence (35).
When considering CPC specifically for forced migrant families,
poor or limited prognostics, symptom control, resource and
accessibility to care in countries of origin, may increase physical
and emotional needs. Furthermore, a lack of cultural health
capital may mean forced migrant families are not aware of
services that exist in their host country and therefore struggle to
engage with health care systems and meet professionals’
expectations (36). A lack of medical knowledge, vocabulary and
communication skills can also contribute to the inequalities
observed (37). Presently, there is no data on the numbers of
forced migrants with CPC needs and no research into their care
or experiences of palliation in the UK. However, there is little
doubt that palliative care coupled with forced migration is likely
to exacerbate already complex problems and impact upon family
health and their care needs. Consequently, this paper addresses
the research question “what factors optimise or hinder care for
forced migrant children and their families?”.
Methodology
Qualitative research is concerned with the quality of
experience, often asking “what it is like”to experience certain
phenomena (38). Interpretative Phenomenological Analysis (IPA)
rejects the notion that the world is the same for everyone
(39,40). IPA was used in this study to privilege the voices of
participants, by combining the psychological, interpretative and
idiographic elements of experience. IPA encourages researchers
to view participants with lived experience as experts and thus
urges the researcher to prioritise and value individuals. The
Silences Framework (41) which underpinned this study, focuses
on research issues which are under-researched, silent in policy
discourse and poorly prioritised in healthcare practice. The
Silences Framework offers an anti-essentialist approach which
suggests that research and experience are both ingrained within
context, with the researcher playing a central role at all stages of
the research study (42). The use of this framework is further
clarified within Figure 1.
The Silences Framework was chosen as a philosophical
underpinning for this study as it encourages focus on research
issues which are under-researched, silent in policy discourse and
marginalised from practice, all of which applied to the topic under
study. The Silences Framework offered an anti-essentialist approach
which suggests that research and experience are both ingrained
within context, with the researcher playing a central role at all
stages of the research study (39). As such it correlated well with the
IPA methodology, which sees interpretation as a fundamental
element of how we structure and make sense of our lives.
The Silences Framework revolves around marginalised
discourses which are so labelled as they appear undervalued,
Clancy et al. 10.3389/fped.2024.1494938
Frontiers in Pediatrics 03 frontiersin.org
absent or invisible within policy (43–45). The Silences Framework
describes Screaming Silences, which “scream out”to the
individuals experiencing them but often need to be uncovered
by the outside world and researchers (46). The “listener”is
therefore the person who identifies priorities or responds to a
particular “silence”(38). Individuals described within such
discourse often have little power to act or have a voice in their
care. As such they may experience additional inequalities to
western families (47). This study aimed to identify the
“silences”of forced migrant families in children’s palliative care
to empower families, create clearer context to aid professionals
understanding and debate methods to redress power
imbalances. As such six advisory groups contributed throughout
this study, to increase insight and influence (45,48). Advisory
group members included children/young people, forced
migrants, bereaved parents and specialists in palliative care.
Each group participated within their expertise, for example
bereaved parents opinions were sought when analysing family
participant accounts to increase researcher awareness and a
hospital equality group were consulted when considering
discrimination and racism within the study. Overall advisory
groups collaborated on a pilot study to explore research
approaches and questions (palliative care professionals),
adaptations on participant information sheets with particular
focus on sensitivity, terminology and language use (forced
migrant group), joint interviewing (young people) and interview
analysis/interpretation (all groups). Last, all advisory group
members considered the study findings and advised on the
relevance of recommendations.
Recruitment and sampling
A purposive sampling technique was used to identify and select
perspectives and information-rich cases specifically related to the
phenomenon of interest (49,50). Participants were chosen
because they offered perspectives of parents/guardians of children
requiring palliative care, were children in receipt of care
themselves, siblings and professionals having experience of
hospital, community and primary care settings. Inclusion and
exclusion criteria for the study are included within Table 1.
To recruit family participants safely, information about the study
was first given to palliative care professionals at the two main study
sites: a large in-patient children’s hospital and a regional children’s
hospice. These sites were chosen as they work with a large
number of children with palliative care needs and have the
specialist knowledge and resources available to provide this care.
They would also be ideally placed to provide continuing support
for families at any point during their involvement in this study.
Participant discussion regarding community care was based upon
the individual family’s utilisation, as this was organised in
conjunction with either hospital or hospice care.
Ethical considerations
The ethical considerations for this study were extensive so we
aimed to address both apparent and potentially concealed
vulnerabilities and mitigate any risks. There was potential for
emotional burden during and following research participation.
FIGURE 1
The silences framework and its application within this study.
Clancy et al. 10.3389/fped.2024.1494938
Frontiers in Pediatrics 04 frontiersin.org
Potential topics which may have caused distress were handled
sensitively and discussed during the pilot interview and with
advisory group members. The interviewer was led by the
participants’responses to ensure their comfort.
One professional interview and two-family interviews were
conducted face to face, with the rest conducted online, at their
preference. Pre-interview information was gathered to ensure
participant safety (51). Participants were asked if they would be
able to talk freely without interruption, in a safe and confidential
space and where others could not listen in (children were not
present for interviews).
Participants were monitored closely during interviews to
recognise distress and to provide appropriate support. Linkages to
appropriate services for on-going support were offered to all
participants, with the most appropriate sources of support
identified by their individual healthcare teams. These included
hospital and hospice psychology/counselling services. None of the
participants became visibly distressed during their research
interviews, but a protocol to manage potential distress was identified.
The consent process was explained verbally prior to the
commencement of interviews and reiterated prior to
commencement. Participants were made fully aware that whilst
their data was to be anonymised and confidential, there were
exceptions to this in the event of a safeguarding concern.
Participants
The recruitment of family members via their usual clinical care
teams was undertaken to minimise pressure for families to take
part, and ensure they were adequately informed about the project
by those with whom they already had a relationship. Care teams
were also asked to consider any present physical and mental ill
health of the family prior to selection, to help evaluate readiness
and ability to participate. An assessment of capacity to consent
for all adult participants was also conducted prior to
consideration for inclusion in the study. One family were keen to
participate but unable due to critical illness.
A pilot interview was conducted with two palliative care
professionals experts, prior to participant interviews. This was
helpful to discuss questioning strategies and possible prompts for
sharing common ground and establishing a trusting relationship
(52). Interviews were conducted using an open-ended line of
questioning - supported by IPA researchers Smith, Flowers and
Larkin (39) who state that it allows the researcher and
participant “to engage in a dialogue whereby initial questions are
modified in the light of participants’responses and the investigator
is able to enquire after any other interesting areas which arise”
(p. 57). Examples of interview questions included: Can you tell
me a bit about how you came to the UK? And can you tell me
about how you first knew your child was unwell?
Interviews commenced at the beginning of 2021, which
coincided with the second UK Government stay-at-home/
lockdown order to limit the risks of COVID-19. At this time
most children had returned to school but there were still limits
on social mixing. Fears for children with palliative diagnosis were
heightened due to increased medical complexities and increased
risk of death should they catch COVID-19 (53). Consequently,
many families continued to keep their children at home and
were reluctant to visit healthcare environments or have visitors to
their homes even after this was permitted by the Government
(54). Interviews were thus offered to participants via telephone,
online or face-to-face. One family were shielding during
recruitment and many professionals’were limiting their contacts,
with some study sites not allowing visitors. Subsequently, only
one professional interview and two-family interviews were
conducted face to face, with the rest conducted online.
Recruitment was staged to enable families to be identified, their
language needs to be assessed and provisions for interpreters
sought, and to allow time for adequate reflection and
opportunities for questions.
A distinctive feature of IPA is the commitment to a detailed
interpretative account of participants lived experiences. Thus, a
relatively small sample size is recommended to allow for a rich
depth of analysis (55). There are several advantages to
undertaking research with small numbers of respondents which
include rich insights into specific health experiences (56) and
gathering clinical implications (57). Whilst scholars have
sometimes criticised the small sample sizes utilised in
IPA studies, focusing on a small number of respondents can help
to minimise loss of subtle inflections of meaning (58, p. 626),
preserve nuances (59) and avoid the researcher becoming
overwhelmed by too much data and producing broader, shallow
or simply descriptive analysis (60). Larger sample sizes may have
created ethical issues, such as overburdening of participants
without adequate research gain. When researching families whose
TABLE 1 Inclusion and exclusion criteria for the study.
Inclusion criteria
- Children aged 2-18 years and their family members who are actively involved in
their holistic care
- Families six months post bereavement
- Children and families who fit the forced migrant definition outlined by UNHCR
(2018) and therefore have not come to the UK voluntarily
- Children with life-limiting conditions or life-threatening conditions who fall
into the categories for palliative care outlined by Together for Short Lives (2018)
- Health care workers who are or were actively involved in the provision of care
for children and their families and are deemed significant by the families
themselves
- Children, families, and health care workers within the West Midlands region,
who have previously or are actively being care for by the study sites identified
- Capacity to consent
Exclusion criteria
- Young adults over 18 years
- Perinatal diagnosis of palliative conditions (as these families will require
specialist services and have specific needs which warrant separate research)
- Economic migrant families (as their needs will defer)
- Families whose child may imminently die (as determined by medical
professionals) or families who are immediately post bereavement
- Children and/or families who do not wish to participate
- Children who are deemed too unwell to be approached for interview, their
families may still participate if they wish to
- Children who are unable to participate for any reason related to their condition,
but their families may sill participate if they wish to
These criteria aim for optimal diversity in important characteristics related to the
study population and thus offer the inclusion of a wide range of perspectives
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Frontiers in Pediatrics 05 frontiersin.org
children have palliative care needs and the professionals who care
for them, multiple layers of insight are required to undertake
analysis both individually and collectively. This takes time and is
thus not possible on a large scale. The priority in this study was
to have data adequacy with the emphasis placed on gathering
rich and nuanced accounts which could be learnt from.
Reflexivity
Reflexive consideration of potential asymmetrical relationships
and ways in which they may be exacerbated was important (61).
A Cultural Humility stance (62), as advocated for all clinical
researchers (63) was thus adopted. At the start of research
interactions, the lead researcher (xx) acknowledged her limited
knowledge of participants’experiences and established the need
for participants to educate her. The five concepts of reflexivity
were employed in this study (60). A carefully considered
positionality statement gives an introspective account of concern
for the research topic and participants. Inter-subjective reflection
and discursive deconstruction were used to self-examine the lead
researchers influence within research dialogue through a reflexive
diary and poetic writing. Mutual collaboration, reflection and
social critique were utilised through letter writing, peer
correspondence, a Cultural Humility (58) stance in research
interviews and through undertaking reflexive dialogue within the
research team.
Analysis
The first step of analysis was to read and listen to each account
multiple times whilst making notes of any interesting or relevant
details. Next, each participant’s account was analysed
individually. This single case by case process, involved
interpretation of each interview transcript, line-by-line in to get
closer to the claims, concerns and understandings of each
participant (64). For each transcript, the account of the
participant was formatted centrally with large margins on each
side for initial exploratory notes on the right-hand side.
Exploratory notes included descriptive (descriptions of objects/
events/experiences), linguistic (language used, metaphors,
repetitions and how words were spoken) and conceptual
(interrogative –asking questions of the data) notes (36).
The creation of Experiential Statements (or initial themes)
then followed for each participant. This involved an iterative
and fluid process of further engagement within each transcript,
including processes of reduction, expansion, revision and
creativity. This was frequently multi-directional moving from
examining part of the transcript text in its own right but also
in the context of the whole interview (37). Initially, experiential
statements were detailed chronologically and so the links
between different portions of the interview could not be clearly
seen. To understand the most interesting and important aspects
of each participant’s account, the experiential statements were
printedandcutintosectionsandthenarrangedonthefloor to
break up the ordering. This gave a bird’seyeviewofthewhole
account and enabled each experiential statement to be seen as
equally important. The experiential themes were then moved
around and grouped together, trying different cluster groups
until the patterns between statements best represented their
interconnections (40). Each cluster of experiential statements
was given a title to describe its characteristics, these became
the participant’s Personal Experiential Themes. Following
analysis of all cases, cross-case analysis was conducted to
highlight the shared and unique features of experience across
participants. The Group Experiential Themes for this study can
be seen in Table 2.
Findings
Fourteen participants were recruited to the study and asked to
take part in semi-structured interviews, conducted by xx.
Participants included seven family members of three separate
families (families Tessa, Ahmed and Khatri). Two families
originated from Syria and one from Afghanistan. Seven palliative
care professionals including two senior nurses, two social
workers, one psychologist, one special school worker and one
Muslim Chaplain also took part. All names have been changed
to protect participants’identities.
TABLE 2 Group experiential themes.
Group experiential themes for family participants Group experiential themes for
HCP participants
Overarching
themes
Importance of migration stories and other traumatic experiences Compassion fatigue, burnout and strategies to overcome Loss and grief
Motivation and personal history in relation to role
Parental burdens
Communication and language barriers Communication and language Communication
Relationship building
Proactivity, passivity and advocacy
Importance of teaching, learning, reflection and education
Nursing care (optimising and hindering relationships) Coordination of services and MDT working
Coping strategies (faith, truth telling and hope, social support and gender roles,
parental burdens, love for child, search for normality)
Individualised care Faith and coping
strategies
Spiritual and religious care
Poor access to resources Access and limited health literacy Alienation and
discrimination
Alienation, discrimination and labelling Racism and discrimination
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Frontiers in Pediatrics 06 frontiersin.org
To highlight the main challenges forced migrant families
experience when receiving children’s palliative care, four
overarching themes are explored.
Loss and grief
For all the families the loss of their homeland coupled with the
loss of family and sources of support was detrimental to their
wellbeing and coping abilities:
“They used to live as a big family. So even though if mum is not
free…can get care from Grandma, from Auntie from Uncle
from himself…here there’s no family”(Hamza. Father).
For family Tessa the loneliness and isolation they experienced
extended to hospital stays in which their teenage son grieved the
differences between them and other families:
“He told me nobody come to visit us, we are alone here. Other
patients they have visitors, they have friends”(Kinza. Mother).
For all families in this study, the arduous journey to the
UK was undertaken to seek a cure for their child/children.
Mother Adiva (family Khatri), Father Hamza and Mother
Khadija (family Ahmed), described their migration journey and
subsequent experiences with the Home Office. When discussing
the processing of their asylum claims as derogatory, confusing
and frightening:
“He treated me like a homeless person…you know like a
beggar…they came and took me in and questioned me…
asking loads of dirty questions as in their implying maybe
the sex trade…She goes I got really scared then because
I thought they were going to sell me (my body) to
somebody”(Adiva. Mother).
When considering the impact of migration trauma upon
families it was unsurprising that professionals described vicarious
trauma and compassion fatigue. Social worker Flo appeared to
wrestle with professional boundaries and frequently became
protective and concerned for family wellbeing even when off duty:
“I don’t mind, you know, calling them after the time that I’m
working…I work 9–5 and that’s it, but it is, and it isn’t
because with this family they need that support, then they
need to know that they’re supported…but it can be
exhausting”(Flo. Social Worker).
Palliative care professionals Flo, Rebecca and Marian, described
an often-overwhelming dependency of family members upon
individuals. All expressed feeling responsible for families, with
Sobia using the metaphor of “carrying her families”through
their difficulties and Rebecca using an analogy of feeling like a
“one-man band”. Holly gave examples of the longitudinal and
traumatic nature of palliative care work and how many lacked
the ability or desire to empathise with forced migrant families:
“They’re tired, they just want to do their job, they’re very task
orientated and…a white British family who are good fun and
laugh with the nurses and easy to get along with, they’re easy to
nurse…whereas a family who you don’t really understand,
possibly because you haven’t allowed yourself to understand,
the easiest thing rather than to try and learn, is to just
distance”(Holly. nurse).
Communication
All participants discussed the impact that communication and
language barriers had upon care. For professionals language
barriers affected their ability to understand and be understood by
forced migrant families, which was frustrating and restrictive.
Families described their inability to communicate with palliative
care professionals’s leading to diminishing confidence and
separation from their care teams. Whilst there was a consensus
amongst participants that interpreters were needed and essential,
there was also an awareness of financial and dialect restrictions.
The awareness that interpreters could not, but should be part of
more interactions was acknowledged by professionals and parents:
“They did have interpreters and sometimes there is doctors
they speak Arabic so can help but because there are so many
hours, you know sometimes the consultant come in different
times of the day, interpreter is difficult to bring”(Maaz.
Father).
Hamza and Khadija said their experiences with a hospice
interpreter were positive, as they were able to have consistent
provision and thus build a relationship with her:
“The interpreter, she has made a huge difference, to their lives
because, it’s not just that she’s the interpreter, but she takes a
lot of time and I think it’s part of her personality to get to
know the family”(Flo. Social Worker).
In addition, nurse Holly and Family Tessa described the
importance of non-verbal communication. Holly discussed the
significance of sitting or kneeling to show intent to stay and listen,
the use of silences, touch and eye contact with families. The
approach described was of particular importance as many families
could not rely on language cues and so had to utilise other
elements of non-verbal communication to aid their understanding.
Relationship building and caring concern were also important
components. A lack of these elements during her son’s hospital
admission was described by Mother Adiva. Adiva recounted
going without food as nurses assumed she would use the parents’
facilities, bring in food or use the canteen. However, all these
options were problematic, as she lacked money, confidence in her
surroundings and her husband’s attention:
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“For two months I didn’t eat or drink…I said surely there
would’ve been a nurse to offer a cup of tea or toast and she
said no there was nothing. And she said obviously my
husband didn’t think let’s go home and get her some food”
(Adiva. Mother).
Two palliative care professional’s described aspects of cultural
humility (54) in their relationships with families including
mutual respect and two-way learning. A further element
conveyed was the importance of kindness and “going the extra
mile”. One nurse was described as spending his breaks playing
games with Sohail during his chemotherapy, which his family
recognised and valued. Both Sohail’s siblings said that
encountering kindness was essential. The significance of these
elements was emphasised when compared to the contrary
experiences of hostility, discrimination and trauma forced
migrant families encountered.
Afinal aspect which impacted the ability to provide holistic
care, was multidisciplinary and multiagency working. Clara
described the difficulties in coordinating community care as she
was unable to access patient notes, appointment times or see the
care other HCPs had advised in different settings, leading to
poor communication between professionals.
Faith and coping strategies
All three families mentioned their faith (Sikh and Muslim) and
how it helped them to cope:
“God will help her…God will always be with you if you be good
with your children and look after them”(Khadija. Mother).
Specifically, for Family Tessa, there were incidences in which
the professionals differed in their approach to telling Sohail
about his palliative diagnosis. The palliative care professionals
were said to focus upon swift and direct truth-telling, but lacked
understanding of the family’s desire to preserve Sohail’s faith
and hope:
“In the last month of his life the doctor came, and he said sorry
Sohail you are dying. You can’t imagine this statement to
anyone and what about a young boy who is 15, its very, very
shock…In our culture, in my country, we never ever tell
children this like this”(Maaz. Father).
Professional’s misunderstood the family’s reluctance as denial.
This misunderstanding continued throughout the last week of
Sohail’s life with an oncology nurse who administered pain relief
becoming very graphic in her descriptions surrounding death,
using Google Images to aid her, which distressed the family greatly:
“She told him…as a Christian we put bodies in boxes and she
Googled and showed him some boxes and graves and a
graveyard, it was very, very difficult situation. Sohail very brave
and positive and we found him like collapsed”(Maaz. Father).
Family Tessa were further misunderstood when it came to their
views on pain. They explained that Sohail’s faith helped him to
cope with pain and that he saw his pain as a test and that
endurance would result in reward:
“We believe that if someone touches the rose and feels the pain
this person gets the reward [in the afterlife]…he doesn’t want
to take the morphine because he wants to feel the pain and get
the reward”(Pasban, sibling).
Similarly, Khadija described an acceptance of her children’s
condition and rewards for her care accruing, to be received in
the afterlife:
“Our God said that whenever I give you, you should be pleased
with it and you should like He’s gave Bibi as a condition…
she’s gaining rewards then from God not from people, she’s
doing it for her faith and for the love for her children”
(Khadija. Mother).
Additionally, an all-consuming love for their children was
expressed by two mothers in the study as helping them to cope
with the fatigue and distress of unyielding caregiving:
“I can’t feel where my body ends and hers starts. I feel that her
body is a part of mine…her body is a part of my limb and
there’s no differentiation from where hers stops and mine
starts”(Khadija. Mother).
Some professionals were challenged and psychologically tested
by forced migrant families who held different beliefs to their own.
Different perspectives seemed to confront professionals and
highlight the inadequacy of care offered and perhaps
contributing poor cultural competence/sensitivity. The resultant
feelings of inadequacy appeared to result in professionals
becoming defensive, families being problematised and an
insistence that families fit with everyday practices.
Alienation and discrimination
Judgements and assumptions by professionals about forced
migrant families appeared common. Family Ahmed discussed a
safeguarding referral in which they were accused of deliberate
harm to their daughter when she was burnt accidentally:
“The GP speak quickly English like speaking fast so he couldn’t
understand…when he answered he was worried himself…
They tell him to wait outside and (they) do checks on Bibi.
I have to wait all day”(Hamza. Father).
Rebecca raised a different issue as she outlined her thoughts
regarding entitlement to care. She also discussed the ethics
behind parental decisions to bring unwell children to the UK,
which she often disagreed with:
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“Where it becomes complicated is when there’s questions about
how families have come into the country, whether they’ve got
fraudulent document…we had a high proportion of those
families, where actually when you start to piece their journey
together, it has lots of question marks”(Rebecca. Nurse).
Rebecca also used some derogatory language to describe family’s
actions such as: “strange”,“bizarre”and “suspicious”. However,
Rebecca seemed insightful into the impact of her limited life
experiences, privilege and poor understanding of forced migration:
“I’ve lived a very fortunate life…if I need access to services,
I get access to services…so for somebody then to come to
me and say they’ve experienced…something horrific…like
persecution, I haven’t got the skills or the knowledge to
understand them”(Rebecca. Nurse).
Further aspects of alienation were described within
inconsistencies and inflexibility in the nursing care provided:
“Many times, Sohail asked nurses please let me go to other
ward [teenage area] because I have to stay in the bed close to
babies crying. So the nurses they say no you are still below
13 he said there is 10 days left and at the same time he
surprised when he entered, he found a boy in 5/6 years so
you can imagine, how can I answer or reply to my son when
he asked me Dad why this 5/6 years, staying (and) me was
not allowed to go, there is no answer and no comment”
(Maaz. Father).
Additional misunderstandings were evident when professionals
appeared to misjudge the expectations placed on forced
migrant families, namely, to be proactive and understand the
host country’s health care system. Many western families have to
actively seek responses and follow up from palliative care
professionals regarding their children’s ongoing care needs (65).
Whilst this expectation (rightly or wrongly) may be the norm,
Clara appeared to overlook Adiva’s limited language skills, low
health literary and cultural/gender norms which may have
shaped her ability to challenge others:
“It’s about being proactive. Maybe giving them (palliative care
professionals) a call, but do you (Adiva) know that? Do you
know it? And do you? Are you on it? (clicks fingers after
each question)…it is frustrating…I think she (Adiva) just
thinks this is just her life and she doesn’t aspire for more”
(Clara. Pastoral Worker, Special School).
Within the examples described, there were many
misunderstandings. Families were labelled as unsafe, unworthy,
non-engaging, passive or generally problematic. As well as calling
these out as discriminatory behaviours, Marian suggested that
these assumptions might be an expression of professionals’
helplessness and not knowing how to respond appropriately to
families’needs. As such further training and awareness of forced
migrant family’s needs appears imperative.
Discussion
Within this section a focus on the “silences”(38) uncovered by
this study will be given to illuminate the needs of forced migrants
in children’s palliative care.
The literature surrounding children’s palliative care highlights
the importance of continuity and consistency in relationships, to
help parents cope with the uncertainties of palliative care
(66,67). Within this study families reported that relationship
building with palliative care professionals took time but was
crucial to the provision of family-centred, holistic care. Families
were aware of those professionals who appeared focussed upon
“the shift”, compared to those who invested in them. Consistency
and reliability of professionals and interpreters were clearly
important antecedents to trust and rapport. The use of
interpreters during interactions was also seen as optimising.
However, existing scholarship on minority children’s palliative
care describes difficulties in access to interpretation, financial
hardship and poor availability of suitable interpreters leading to
deferred/rearranged care (68).
Families described the need for professionals to understand their
migration experiences to better empathise with them. Scholars have
stressed the importance of listening to migration experiences to
better understand individuals past traumas and family context
(69). However, such conversations may prove difficult and can be
challenging for professionals to pitch correctly, which can lead to
avoidance. A “silence”revealed through this study was families
clear desire to share their individual experiences. Social worker Flo
noted that Family Ahmed had revealed more about their previous
experiences during their interview than in her two-year
relationship with them. As well as the importance of sensitive
communication, another consideration concerns the timing of
such conversations. Professional experiences and those of
migration scholars lead us to suggest that the sharing of migration
journeys would ideally occur in the first few meetings to gather
context and show caring concern.
The migration trauma and ongoing difficulties experienced by
forced migrant families may also explain the importance of feeling
cared for and the impact when palliative care professionals went
the extra mile to support them (70). Often the elements described
were subtle, such as smiling and greeting families, spending extra
time with them and being accessible. Families were aware when
they were being shown caring concern and when this was lacking.
Professionals’body language, tone of voice and their authenticity
within interactions appeared crucial (71). Good information flow
is vital, including regular updates and “checking in”with families
to build relationships and meet evolving needs (59). This concurs
with research about refugees with advanced cancer, their
caregivers, and health care professionals in Jordan (72). For forced
migrant families in this study, these regular check-ins were often
missed or inadequate. The expectations, personal values and goals
of care were thus often undiscussed or misunderstood. A further
“silence”uncovered during this study was that poor experiences
between families and palliative care professionals often caused
parents to feel abandoned and to question the accuracy of
professional’s information. Davies et al. (61) state that suboptimal
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patterns of information sharing can contribute to frustration, anger
and sadness.
Further elements of misunderstanding and minimising of family’s
beliefs were seen surrounding truth telling and hope. A workshop of
experts in CPC discussed that challenges arose when there was
conflict or if decision-making processes felt “foreign”(73).
However, professionals may need to sit with conflict and “be more
comfortable with messy”to facilitate culturally sensitive care (63,
p. 849). It was also suggested that when differences feel hard to
navigate for professionals, there are often implicit or explicit biases
and corresponding assumptions present (63).
A further contribution of this study surrounds the uncovering
of a “silence”within the provision and understanding of spiritual
care to families and the impact of terminology. Family Tessa’s
Muslim faith was of paramount importance to them. However,
their spiritual needs were often not valued or even dismissed by
professionals. Their nurse, Holly, described nurses interrupting
prayer and a general lack of understanding around the family’s
desire to allow their son Sohail to live out his faith, particularly
towards the end of his life. This may link to misunderstandings
and poor explanations of palliative care terminology. In much of
the literature, myths surrounding barriers to palliative care are
detailed. One such “myth”is a perception by ethnically diverse
families that “suffering makes you stronger”(74, p. 168). By
using the word myth rather than belief, the language indicates
that beliefs about pain are a falsity which needs to be dispelled,
rather than a religious belief to be respected and understood.
Challenges around understanding religious belief and pain are
thus evident, as the link between suffering, strength and eternal
favour is advocated in many religions including Christianity,
Islam, Buddhism and Hinduism.
The link between cultural practices and health beliefs was not
always understood by professionals (66). The lack of education
around faith and spirituality is emphasised by Fowler (75) who
states that for those with a strong faith, religious obedience is
intentional and “faith is a matter of life and breath”(p. 391).
Scholars describe limited professional education on spiritual care
and a consequential lack of skill and confidence (76,77).
Timmins (70) highlights challenges with assessing the spiritual
needs of families with prerequisite for self-awareness and
openness to different levels of dialogue.
Many of the aspects discussed by family participants appear
to link to a simplistic understanding of their culture by palliative
care professionals and a lack of ability to provide individualised
care. The idea that culture is static and can be learnt and
repeated for groups, may derive from traditional training
methods such as Cultural Competence (78). Cultural competence
has been criticised for giving professionals an overestimation of
personal cultural competence levels which may encourage
arrogance or led to ethnic reductionism (79) and precipitate
cultural misunderstandings. Families talk about culturally
sensitive care, connected closely to the philosophy of Cultural
Humility (61) in which mutual respect was observed, listening
and time was given to families and professionals were seen as
open and able to acknowledge their limitations, whilst learning
from and with families. These findings offer insights into how
cultural sensitivity may be improved for forced migrant
families when the Cultural Humility (61) rather than Cultural
Competence model (78) is followed.
The lack of social support and its negative impact upon families
described in this study was illuminating but unsurprising,
particularly with the additional complexity of the COVID-19
pandemic. The pandemic meant many palliative care
professionals were redeployed and the support available was
reduced. Whilst this was challenging for all families, the
implications may have been more severe for forced migrant
families who did not have an outside support network. The
absence of social support for forced migrant families may differ
to that available for established black ethnic minority families in
palliative care, who may have additional family, faith and/or
community support. This difference may have created confusion
for professionals and an additional “silencing”or lack of
understanding of the desperate need for support described by
forced migrant families.
The burdens that families endured when caring for their children
were eased by normality, such as school life and the utilisation of
non-clinical spaces for family time-out where possible. Parents
often experienced hypervigilance, with a feeling of being on duty
24 h a day (80) and so rest and appropriate respite (including
hospice stays) were beneficial. However, the responsibility, duty
and intense love parents had for their children needed to be
balanced with trusting palliative care professionals to care for their
children as they would at home. For forced migrant families, this
may be compounded by the precious nature of their children
which saw all three families uproot their lives at great personal
cost, to better meet their children’s needs.
Within this study, elements of burnout were discussed by
professionals. The long-term effects of witnessing intense
suffering on palliative care professionals is recognised (81) but
within this study there were also elements of disillusionment and
emotional blunting. Markey (82) discusses disengagement
strategies used by professionals when caring for ethnically diverse
patients and suggests that they may take painstaking measures to
rationalise insensitive care. An inability to challenge behaviour
and poor care, places palliative care professionals at risk of
becoming detached and ineffective (83). Conversely, the
development of moral reasoning may act as a process for
discerning ethical action (73). Palliative care professionals may
thus become empowered and able to challenge associated social
injustices and health inequalities (84).
A lack of access to services, hospice care, inappropriate
housing, inadequate financial support and a lack of healthcare
literacy appeared to hinder care. Problems with access to
services and funding are commonplace in the literature
surrounding refugee health (85).Forfamiliesinthisstudy,
much of this complexity came from poor understanding of
entitlement and eligibility. Further challenges came from
the medical complexity of palliative care with the need for
multiple professionals and organisations/settings for the
provision of care. Subsequently, multidisciplinary and
multiagency working can be challenging for staff and families
to navigate (86).Forforcedmigrantfamilies,thisis
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Frontiers in Pediatrics 10 frontiersin.org
compounded by communication difficulties and a lack of
understanding of roles/responsibilities. However, co-ordinated
multidisciplinary team working can enhance support, increase
expertise and provide invaluable insights and peer support
during challenging cases (87).
Limitations
Due to the complexity of disability and the limitations of the
pandemic, none of the cared-for children at the centre of this study
were able to share their experiences of care. Thus further research
specificallyfocusingonchildren’sperspectivesisrecommended.
Whilst online interviewing was used with many participants in
this study, the limitation of missing non-verbal cues was minimised
with the use of video functionality and additional researcher
attentiveness (88). The timing of the research interviews meant
many of the participants had already become familiar and
comfortable with online software, which beneficial and
minimised user errors often cited as disadvantages to online
interviewing (76). Further, Hanna and Mwale (89), suggest
benefits to online mediums, in that they may offer a more
comfortable environment to share personal experiences, can be
more convenient and give more control to participants, whilst
also offering easy data capture with built-in recording programmes.
Researcher bias in an interpretative study is somewhat
inevitable, however this was reduced by continual input from
advisory group members throughout the study and by using
many methods of reflexivity to aid self-awareness and prompt
transparency of methods.
The Silences Framework has limitations; the relatively new
nature of the framework makes critique of its application
difficult. However, one study reflects on the benefit of the
Silences Dialogue and Collective Voice’s (PPI) processes (90).
These cyclical data analysis phases can be used to stimulate
member checking by those independent to the study but with
important lived expertise (91). In this study, the Silences
Dialogue stage was helpful in valuing and implementing advisory
group feedback. However, this stage can lead to confusion (78),
thus careful explanation is needed.
Recommendations
The findings of this study suggest limited palliative care
professionals knowledge and understanding of forced migration
experiences and trauma. The development of a specific
professional education pathway on forced migration is thus
recommended. Topics may include the inclusion of vignetters
based on lived experiences to increase knowledge/empathy and
self-awareness/bias education alongside moral reasoning training.
Additionally, the inclusion of spiritual care education is crucial
to meeting need and gaining further knowledge of belief systems
and their importance to families.
Educational techniques to instil such practices may include
development of pedagogical approaches such as stories, narratives
and participant poetry, film and infographics, scenarios, role play
and drama. These aspects may aid critical thinking, offer
multiple perspectives for debate, and support the identification
and assessment of complex needs. In conjunction with such
pedagogy the inclusion of interdisciplinary training with the
involvement of faith leaders and refugee specific organisations to
share expertise and build supportive relationships for future
practice is also recommended.
Clinical recommendations include provision of additional
time and consideration of staff allocations, to build
relationships and offer continuity to families. Additional time
available to support forced migrant families may aid
professionals in navigating complexity such as addressing legal
and financial needs, whilst also sensitively managing
interactions with interpreters. It is also advised that addressing
communication difficulties be prioritised by health and social
care organisations, with additional funding for interpreters,
their training and further understanding of the interpreter role
and ability to provide family support.
The importance of continued and sustained collaboration with
advisory group expertise during research studies was highlighted by
this study. Advisory group input was extremely valuable in helping
the researchers to shape the study, understand participant
perspectives and to develop appropriate recommendations.
Ziersch et al. (92) concur stating that a central aspect of research
with forced migrant communities is that of close community
collaboration to ensure validity.
A further practice recommendation is the prioritising of respite
for forced migrant families with the aim of providing additional
support, normality and limiting the isolation often experienced.
Lastly the provision of palliative care professional wellbeing
support is crucial to addressing the impact of burnout and
compassion fatigue described in this study.
Conclusion
In conclusion, the literature appraised for this study
illuminated many “silences”in both the fields of children’s
palliative care and forced migration. This study has brought the
two fields together to reveal unique insights.
The findings of this study indicated limited palliative care
professional knowledge and understanding of forced migration
experiences, spirituality and trauma so the development of an
education pathway is recommended. Topics discussed would
serve to emphasize the role of lifelong learning in producing
humble practitioners who want to redress power imbalances
across professions and within their relationships with families.
Additional clinical time, interpretation provision and
professional support to prevent burnout and compassion fatigue
is essential. Continued research in this area is crucial to
understanding forced migrant families’perspectives. Research
which addresses the challenges of understanding the views of
disabled and non-verbal children is important to ensure their
views are captured. Finally, and perhaps most importantly is the
need for care, which is compassionate and humane, and takes
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Frontiers in Pediatrics 11 frontiersin.org
account of individual forced migrant family’s needs and
experiences. Father Maaz articulates:
“They have to know they are dealing with a human, not a
machine. They are not repairing a machine, this is a human,
he has feelings, with heart”
Each palliative care interaction will create lasting memories for
families particularly those whose children are at end-of-life.
Palliative care professionals have a duty to provide equitable care
and thus need to consider the additional needs of forced migrant
families to ensure their holistic needs are met and their
experiences are positive.
Data availability statement
The datasets presented in this article are not readily available
because rare conditions may make patients identifiable. Requests
to access the datasets should be directed to m.w.clancy@exeter.ac.uk.
Ethics statement
The studies involving humans were approved by Ethical
approval for this study was granted from University of
Birmingham Governance (Ref: ERN_17-0528) in November 2020
and NHS Research Ethical Committee (REC) in January 2021
(IRAS number: 281987). The included names are pseudonyms so
the participants cannot be indirectly identified (this is also
clarified in text). The studies were conducted in accordance with
the local legislation and institutional requirements. Written
informed consent for participation in this study was provided by
the participants’legal guardians/next of kin. Written informed
consent was obtained from the individual(s), and minor(s)’legal
guardian/next of kin, for the publication of any potentially
identifiable images or data included in this article.
Author contributions
MC: Conceptualization, Data curation, Formal Analysis,
Investigation, Methodology, Project administration, Resources,
Writing –original draft, Writing –review & editing. CB-J:
Conceptualization, Supervision, Writing –review & editing.
JP: Conceptualization, Supervision, Writing –review & editing.
JT: Conceptualization, Supervision, Writing –review & editing.
Funding
The author(s) declare that no financial support was received for
the research, authorship, and/or publication of this article.
Conflict of interest
The authors declare that the research was conducted in the
absence of any commercial or financial relationships that could
be construed as a potential conflict of interest.
Publisher’s note
All claims expressed in this article are solely those of the
authors and do not necessarily represent those of their affiliated
organizations, or those of the publisher, the editors and the
reviewers. Any product that may be evaluated in this article, or
claim that may be made by its manufacturer, is not guaranteed
or endorsed by the publisher.
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