The experiences of oncology and palliative care nurses when supporting parents who have cancer and dependent children

Anne Arber, PhD; Anki Odelius, PhD

Author Affiliations: Faculty of Health and Medical Sciences, University of Surrey,

Guildford, UK.

Correspondence: Anne Arber, PhD, Faculty of Health and Medical Sciences,

University of Surrey, Guildford, UK GU2 7XH (a.arber@surrey.ac.uk)  

Acknowledgement: Sincere thanks to all the who generously gave of their time to take

part in the research. The research was funded by a grant from Jigsaw South East.

Conflicts of Interest: "The authors have no conflicts of interest to disclose."

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Abstract

Background: It is important not to ignore the impact of parental cancer on children

and this is where oncology and palliative care nurses can play a key role; providing

support to parents as a regular aspect of oncological nursing care.

Objectives: This study explored the experience, needs and confidence of nurses

working in acute cancer services when supporting parents with cancer who have

dependent children.

Methods: Two focus group interviews were conducted with oncology and palliative

care nurses in one acute hospital trust in the south of England.

Results: Nurses described how they identified with their patients as a parent

themselves. This identification with patients added to the emotionally charged

context of care and resulted in nurse avoidance of the troubling issue of dependent

children. Nurses identified the importance of peer support with regular opportunities

to reflect on practice when dealing with issues relevant to parents and children.

Conclusions: Oncology and palliative care nurses take a reactive approach to family

centred care, taking their cue from patients to initiate or request support for their

children.

Implications for Practice: Guidance was needed on children's developmental stages

and how to communicate with children of different ages. Additionally, guidance was

needed on assessing family needs and access to up to date resources. To enable

nurses to engage with the issue of children, strategies of peer support and further

educational opportunities need to be implemented.

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Background

The needs of children of parents with cancer are often not recognised by those

professionals supporting the parents1. Many families receive limited information from

nurses regarding the impact of parental cancer on dependent children2. Healthcare

professionals may be medically oriented as their primary role is to provide support

and medical care to the patient and issues regarding children may be avoided as this is

an emotionally charged and sensitive area1. It is important not to ignore the impact of

parental cancer on children and this is where oncology and palliative care nurses can

play a key role; providing support to parents as a regular aspect of oncological nursing

care2. Most children and families facing loss do not need specialist help nor

intervention but support at all levels of care are necessary to the well-being of patients

and their children3.

Providing support to parents of dependent children can be distressing and

emotionally draining and nurses were observed to use distancing tactics in one study

saying: ‘it’s terrible to say, but it isn’t any of our business how they cope as a

family’4. Furthermore, support may only be offered on an ad hoc basis4. However,

Fearnley found nurses used sensitive communication skills to assess what children

had been told: 'very gentle to test out what the children may have been told'1. It is

considered important that clinicians ask the patient ‘do you have children…do you

want to talk about them?’ and this opens up the possibility of further dialogue and is

supported by policy directives in Finland where the needs of children must be

considered when parents are treated in healthcare services5. Anxiety is reported to be

heightened when children do not receive information about their parent’s illness and

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regular medical updates were found to be helpful to young children between the ages

of nine and eleven years 6.

Both professionals and parents have been found to be hesitant to delve into the needs

of children for a variety of reasons; including not knowing what to say and wishing to

protect children 1. In an interview study with women (n=8) with advanced cancer

Turner et al found that most women experienced avoidance of any discussions about

the impact of their diagnosis on children; despite the women identifying nurses as

being in a good position to provide support and resources7. Health professionals

understandably do not want to cause further emotional distress to the parent.

However, health professionals may not have the skills and confidence to assess the

impact of parental cancer on children7. It is important to note that around one third

of those with breast cancer have been reported to have dependent children8. Children

with a parent with a life limiting illness such as advanced cancer can manifest

significant distress6. Parents reported a lack of confidence and skills when talking to

children about cancer and children were found to have a number of misconceptions

and fantasies related to cancer9. Children and young people were found to have

unmet needs as parents struggled to meet the challenges of a life limiting illness10.

The research discussed in this article was prompted by a lack of knowledge about how

oncology and palliative care nurses supported families with dependent children. The

aim of the study was to explore the experiences, confidence and needs of oncology

and palliative care nurses who worked in the acute hospital setting with patients who

had dependent children.

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Research questions

1. What are the experiences of oncology and palliative care nurses regarding

support for a parent with cancer who has dependent children?

2. How do oncology and palliative care nurses support parents who have

cancer in relation to their children?

Study Design

The study was designed as a descriptive qualitative study using focus groups methods

to study the experiences of oncology and palliative care nurses when supporting

parents with cancer who have dependent children. In the United Kingdom, oncology

and palliative care nurses working in specialist areas are graduate level registered

nurses, normally holding a Master’s degree, who specialise in a particular field of

practice such as cancer care, palliative care and/or an aspect of treatment such as

chemotherapy administration11.

The study took place in one acute hospital trust in the South of England, recruiting

oncology and palliative care nurses in the acute hospital (in-patient) setting. The Lead

Cancer and Palliative Nurse at the hospital was part of the of the principal

investigator’s professional network prior to the study. Communication between the

principal investigator and the lead nurse lead to an insight that it would be beneficial

to explore the issue of nurse’s support to parents with cancer who had dependent

children through a small scale study using focus group methods.

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Method

The aim of focus group methodology “is to get closer to participants’ understandings

of and perspectives of certain issues” and these understandings partly develop through

communication between participants12.

Knowledge is scarce about the views and needs of nurses in relation to support of

children of a parent with cancer. The use of focus group methods offered opportunity

for nurses to be able to discuss experiences and views with colleagues in a safe

environment, which provided new knowledge about their experiences and insights

into their needs. Following on from this study was the potential for further in-depth

research in other settings and opportunities for the development of practice

interventions in the future.

Two audio recorded focus group discussions (n=12) were carried out with nurses

representing different oncology and palliative care practice areas (see Table 1) who

discussed their experiences and needs in relation to patients who have dependent

children. The interviews were guided by a topic guide, where open-ended questions

were used to facilitate the groups by a skilled qualitative researcher, experienced in

running focus groups. Each focus group lasted for approximately one hour.

Data Collection

This was a purposive sample of oncology and palliative care nurses who were invited to

attend one of two focus groups. A decision was made to limit the study to one trust

due to the small scale explorative nature of the research.

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The study was presented to the nurses by the researchers at a regularly occurring

meeting at the hospital where nurses were also given written information on how to

contact the researchers if they were interested in taking part in the study. Twelve

nurses, 11 women and 1 man, with experience of working with parents with

dependent children attended one of the two focus groups out of a total of twenty-one

nurses who could have participated. Participants’ specialties as defined by themselves

during the introduction section of the focus groups are identified in Table 1. To

protect the anonymity of the small sample from one trust no detailed demographic

information was requested from the participants. However, the focus group data

indicated that although a few nurses had been in their posts for one to two years at the

time of the study, the majority had many years’ experience of cancer and palliative

care. Two further nurses had expressed an interest in participating but sent word that

they had to attend to urgent matters at the time of the focus group meeting. To

conduct research in a busy hospital environment is always challenging; however more

than half of the oncology and palliative care nurses in the trust made an effort to

participate and is a reflection of the importance they attribute to the issues discussed.

Data Analysis

The audio recordings were transcribed verbatim and closely read by two researchers

and systematically coded by one researcher using the software programme NVivo 10

developed by QSR International13.

The use of NVivo added transparency to the analysis and increased rigour. A thematic

analysis was used to analyse the qualitative data, which were organised in stages into

three superordinate themes by the researchers14. The initial themes were discussed,

revised and agreed by the research team. Findings were also presented to nurses from

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the two focus groups and they agreed that the findings accurately reflected the focus

group discussions.

Ethics

The study was approved and given a favourable ethical opinion by the National

Health Service Trust’s Research Governance Committee and by the University of

Surrey Ethics Committee.

Results of the Study

Key themes that emerged from the data were: identifying with the parent, keeping the

door open, helping patients to help children and the needs of oncology and palliative

care nurses. Participants discussed how challenging and complex it was to support

families with children. It was found that there were no screening processes (or

guidelines) in place to identify patients who have dependent children who might

benefit from psycho-social support. Many of the participants described how they

quickly picked up on the fact that patients have children as many of the nurses have

children themselves. An unexpected finding in the study was that most of the cases

discussed by focus group participants concerned female patients, which is discussed

later in the article in relation to recommendations for further research.

Participants described how they drew on their own experience as parents themselves

to help them cope with patients who had dependent children. Being a parent meant

that nurses identified closely with the patient, which is discussed next.

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IDENTIFYING WITH THE PARENT

Many of the nurses described identifying with patients who were described as of a

similar age to them with children of a similar age. Participants used words such as ‘I

am a mum’ and ‘speaking as a parent’. Although identification with the parents

‘aroused distressing thoughts’ it also was presented as a helpful coping strategy.

The identification as a ‘mum’ helped the nurse below to see the situation quickly and

helped her to connect with what is going on in the family situation:

When they come in you tell them the diagnosis, you then obviously ask about

what the family situation is at home, what else they have got going on so

recognizing that straight away you know, I am a mum as well. [FG – 5]

The participant’s identification with the patient gave her confidence to assess the

family situation. However, this connection and identification can also be emotionally

challenging and participants also reported feeling out of their depth, especially when

the situation with the parent was quickly changing. One nurse had been asked to

speak with a couple of teenagers, which she found challenging:

I had never ever had to sit and speak to teenage children the same age as

mine… so that was fairly difficult. [FG1 – 6]

Although being able to connect as a mum was described as helpful, it also made the

interaction more difficult. The nurse above had no experience of speaking with

teenage children about their mother’s illness and felt totally unprepared. On top of

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that the children were close in age to her own children and brought the very serious

situation for this family close to the nurse’s own experience of parenting teenagers.

Although there was some awareness of the negative impact of parental cancer on the

family children were reported to generally cope well:

Most of the stories I hear from my patients are mostly positive, how these

children are coping. [FG1 – 2]

And

On the whole recently all of our patients seem to be quite open in discussing

things with their children and they say how well their children have adapted.

[FG1-7]

An environment is described where by parents can be open and positive about their

children who are described as coping well; this does however conflict with extant

literature pertaining to the long term impact of serious illness and loss on children’s

emotional and mental health5. There was little recognition of the long term impact on

children of having a parent with cancer. This seemed to be because the situation of

children was viewed as the private domain of the parents and a highly sensitive area

of close identification for the nurses making them feel apprehensive and

uncomfortable.

KEEPING THE DOOR OPEN

Participants reported how they work hard to support patients who are parents but they

sometimes waited for the parent to introduce the topic of children. Hence in the next

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data extract although the nurse described wanting to ‘keep the door open’ this is

balanced by cautiousness about delving into the needs of children:

Just keep the door open you can’t be too involved, can you? Because you

don’t know their life you don’t know their children you don’t know their

circumstances, you don’t you know. For us, we tell them they have got a

cancer diagnosis and support them through the process and if they flag up that

they want some involvement with the child then we will facilitate that; but we

don’t constantly ask or you know we rely on them feeding us that information.

You know, obviously if there was a concern for the safety of a child then that

is a different matter altogether but in terms of information we are very much

guided by the parent really. We give books we give information about how to

talk to the schools and things like that. [FG1-4]

The ‘we don’t constantly ask’ suggests that children are a private domain something

that can only be discussed if it is brought up by the parent. There is doubt about

whether the children’s needs are assessed routinely as the role is described as

supporting the person with a cancer diagnosis

The necessity of parents identifying needs for support is also described by another

participant:

It has got to come from them if they need it, if they need support and

guidance. [FG1-7]

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Other participants described how parents want to be protective of their children so

that the family can keep a sense of normality in their lives:

So they wanted to deal with it as a family they didn’t want us intervening with

it, they wanted it kept with them managing it. [FG2-5]

Participants described protective strategies that are shared by both nurses and parents

so that the needs of the children remain to some extent unspoken and relatively

invisible.

HELPING PATIENTS TO HELP CHILDREN

Participants described the support of children mainly as the parents’ responsibility and

so leave the psychological welfare of the children ‘with the parents in their capable

hands’ [FG2 – 4]; with parents perceived to know best about their children. It may be

that nurses are trying to help patients keep up as ‘normal’ a family life and routine as

possible, by staying positive about the children as a strategy to help nurses and

patients cope with the demands of care and treatment for cancer.

Participants report being asked direct questions regarding how to communicate with

children:

Well sometimes they ask ‘should I tell the children? What should I tell the

children?... It’s never my place to tell them to tell the children I think. It’s

about them assessing how much information their child needs. [FG1-1]

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The participant above described being asked directly for support from the parent

regarding what to tell the children. In response the nurse identified a strategy of not

taking over and telling the parent what to say to the child. However, she continued to

use distancing language such as ‘they’, ‘them’, ‘their’. The nurse emphasized that it

is the parent’s role to assess what their child needs, which is a protective and

avoidance strategy used by the nurse. The nurse does not appear adequately prepared

or comfortable to give support to the parent in relation to the challenging question

about what to tell the children.

NEEDS OF NURSES

Participants suggested that supporting families should take into account the busy

hospital environment, including ‘the time factor’ [FG1–3]. They suggested that

routine screening of children’s needs would not be helpful as: ‘you do it instinctively’

(FG1-4), implying that using intuition is how to assess the family situation.

Participants also felt that needs other than those of a psychosocial nature should be

prioritized. This confirms the observation by other researchers that a medicalised

approach is evident and there is a distancing from the emotional and psychosocial

needs of the family regarding children1.

Participants discussed existing support and resources available to them when

supporting families and children. Given the varying needs of patients/children,

participants report a need for easily accessible information:

All I would need to know is to know where to get information from.

[FG1– 4]

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The participant above seemed unsure about where to locate information and also

appeared to see her role as one related to the flow of information to parents.

Nurses felt that there was a need for more preparation and guidance in relation to the

well-being of children:

And I suppose guidance about how much to tell the children, what to tell

them depending on their age and things because I suppose half the time we

are blagging it aren’t’ we? What we think that we should tell them and, you

know. [FG1-5]

The nurse above felt unprepared to confront the issues surrounding children such as

how much to tell them and age appropriate information in particular. The use of ‘we’

suggests she sees other nurses in the same situation as herself.

Given the complicated context of providing care and support for patients and their

children, a participant suggested that regularly sharing experiences with colleagues in

a supervised and safe environment would be helpful:

I think it is important to just come and talk about experiences and perhaps

learn like we have done this morning really… I think that everyone’s

experiences we would all do the same sort of thing. I think if we sat here and

thought I never thought of doing that then that might create alarm bells might

it, but it sounds like we are all doing the same sort of thing anyway which is

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reassuring isn’t it? [FG1-5]

Sharing with colleagues and learning from their experience is identified as a way to

support nurses and enabled them to balance their needs (confirming that they are

doing the right thing) and the needs of their patients.

Another nurse described how she sought and received peer support from colleagues

regarding a situation with a patient, which had left her reassured that she had managed

the situation well:

It was difficult for me as well, I did check with the breast nurse as I know

they deal with young families quite often and they felt I had really gone down

the right paths with it … so it was reassuring for me as well when colleagues

have been through something it’s nice to pick up on what they have picked up

on. [FG2 – 5]

The breast care nurse has a specialist role in supporting women with breast cancer

throughout the different stages of the illness including metastatic breast cancer15. The

breast care nurse was acknowledged as a source of guidance and reassured FG2-5 that

she had handled the situation well. Although expertise does exist, the importance of

support by peers was highly valued by nurses. Participants felt comfortable

discussing challenging emotional situations regarding children with their peer group.

They described feeling safe and supported to disclose experiences and concerns and to

seek advice about courses of action from their own peer group.

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Discussion

Nurses were concerned that families continued with a normal family life and wanted

to support them in this regard. Mothers wished to safeguard familiar routines where

possible. Fisher et al found a preference by mothers with breast cancer to carry on as

usual as much as possible16. In this study nurses described their ability to assess

family needs through intuition and appeared resistant to any form of screening of

families as they felt that this is a situation that they recognize immediately especially

when they are also mothers. Generally, they described a reactive form of assessment

mostly taking their cue from patients regarding the needs of their children. According

to Rauch et al, parents may not receive guidance on how to minimize the impact of

cancer on their children or to identify a child who requires extra support17.

Nurses used protective and avoidance strategies to bracket themselves from the

emotional impact of working in such a sensitive and emotionally draining area of

care, which is understandable in the circumstances. Nurses described how they can

identify with their patients (as a parent themselves) and this adds to the emotionally

charged context of care and to the emotional burden experienced by nurses. Nurses

appeared to want to distance themselves from the issue of children because of a lack

of confidence in how to help with these matters. A proactive approach to the needs of

dependent children within the family appears to be low on the list of priorities for

nurses and where possible avoided.

In this research there was evidence that some of the participants felt they do not have

the skills to explore sensitive issues relevant to patient’s children. However, at times

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nurses found themselves being called on to talk to teenage children that left them

feeling daunted and out of their depth. Nurses also used terms such as: ‘leave it like

that with the parent’ and ‘totally left to the parents’; this suggests the nurses may be

using avoidance as a coping strategy what Maguire et al refer to as blocking

behaviour, which may limit the extent to which patients feel free to express concerns

about sensitive matters regarding dependents and children and the wider needs of

family members18. Avoidance is understandable, as to confront the needs of family

and children calls for emotional labour that triggers hard to manage emotions in

nurses and their patients and requires good support for nurses as well as patients.

Waiting for parents’ identification of children’s needs is a protective and reactive

strategy used by nurses in the study when dealing with a highly sensitive area of care.

Therefore, nurses report utilising a cautious approach by avoiding potentially

upsetting questions for both the parent and the nurse related to dependent children.

Dependent children are largely identified as the private domain of the parent and a

highly sensitive and emotive area of care for the nurses in the study.

Much research points to the needs of mothers in particular for support at all stages of

the cancer illness regarding worry about their children and the need for psychosocial

support regarding these worries19. Working with the uncertainties associated with

cancer and the chronic nature of some cancers means that patients’ needs will be

variable over time and nurses will need the skills to respond to those needs over

longer and shorter timescales as the acute and chronic cancer illness experience

overlap and are extended. It is important that the needs of children have been assessed

and a system of team collaboration developed with wraparound services for

children20.

17

Findings demonstrated that nurses did not normally engage directly with children and

that the mainstay of support reported by nurses was vicarious support in that they

offered a way to support the parents and in doing so to support the children. It was

mainly left to parents to initiate/request support as nurses engaged in a reactive way

with issues regarding children. Participants described how parents were reluctant to

involve their children in their illness, through parental avoidance, because of a wish to

maintain hope which can mean that discussions about potentially negative

consequences of a cancer illness within the family are avoided. It can be conflicting

for nurses to help patients maintain hope and at the same time convey to patients and

their families the seriousness of the situation. Hope can in this sense compromise

acceptance of a serious illness and may lead to withholding of information and

support for families; and nurses need to strike a careful balance. However, even quite

young children can understand when something is wrong, such as serious illness in a

parent, and it is essential that families receive support to enable them to communicate

effectively and support their children21. In the US a pilot intervention for parents on

the effects of their illness on their children was reported to be well received7.

Nurses reported that they needed more knowledge and support to engage with

children’s needs and their developmental stages. They were interested in how to

adapt information and support to children’s developmental stages and described a lack

of informative resources available to themselves and parents. Additionally, nurses

described a need to balance respect for individual family differences and the

avoidance of imposing on parents’ ways of communicating with children and this is

an area where they lacked confidence.

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IMPLICATIONS FOR PRACTICE

Nurses were very positive about the support they received from their peer group.

They felt that more use could be made of peer support by having regular opportunities

to meet with their peer group and to reflect on issues regarding families and children.

Peer support is therefore the most beneficial support strategy identified and was the

nurses preferred method of support. In addition, some educational needs and access

to resources were identified concerning children’s developmental stages and how to

communicate about cancer with children of different ages. Other methods of support

that nurses could benefit from include group and individual clinical supervision with a

focus on supporting parents and children. Following the study workshops have been

organized to support nurses and to develop their confidence in relating to parents

about their children. In the UK NICE Guidelines (2004) recommend the availability

of psychosocial and emotional support for patients and families of those with cancer.

Therefore, there should be clear guidelines and care pathways about how families and

children access further support services including social work and mental health

services22. Support from an interdisciplinary team is essential to minimize the impact

of parental cancer on children but also to signpost families to further support services

should they be necessary.

FURTHER RESEARCH

It is interesting to note that participants brought up more issues in the focus groups

related to mothers than fathers as patients. This could be a reflection of the sample

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being made up of mostly female nurses who were identifying with female patients.

However, it could also reflect the fact that there is a distinct lack of knowledge about

the needs of fathers with cancer who have dependent children22. In future research it

would be important to examine the gender role assumptions of nurses and other health

care practitioners to enquire into how they respond to fathers with cancer in contrast

to mothers.

Limitations

Participants were recruited from one National Health Service trust only; therefore, the

findings may not represent the views or confidence of nurses from other acute

services in the UK or indeed those of nurses from an international perspective.

However, the study provided an opportunity to gain an understanding of this

previously under researched area.

Conclusions

Research participants were oncology and palliative care nurses and although they are

specialists in their field they felt they needed more support in order to provide

effective care for parents with children. Participants identified the importance of peer

support and regular opportunities to reflect on practice with colleagues where they can

share experiences. They also reported needing access to updated information sources.

Supporting families can awaken emotions of a personal nature in cancer and palliative

care nurses, which can affect practice positively or negatively. Although it may be

emotionally draining for nurses to identify closely with patients and draw from their

own experience it may also be a helpful and empathic strategy and one that can

reduce the feeling of emotional burden. Nurses felt they lacked confidence and knowledge

20

in supporting parents with cancer regarding their children and many reported using distancing

strategies to protect themselves emotionally from helping parents support children. Peer

support strategies, were the methods of support that nurses felt comfortable with.

Nurses require good psycho social support and clinical supervision in order to engage

with issues related to patient’s children.

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Table 1: Participants in the Study

FG1-1 Breast care nurse

FG1-2 Chemotherapy clinical nurse specialist

FG1-3 Breast care nurse

FG1-4 Breast care nurse

FG1-5 Haematology Day Unit Manager & Chemotherapy nurse

FG1-6 Lung Cancer Clinical Nurse specialist

FG1-7 Lung Cancer and Palliative Care Clinical Nurse Specialist

FG2-1 Haematology Clinical Nurse Specialist

FG2-2 End of Life Care Clinical Nurse Specialist

FG2-3 Palliative Care Clinical Nurse Specialist

FG2-4 Head and Neck Clinical Nurse Specialist

FG2-5 Gynaecology Clinical Nurse Specialist

24