tf_template_word_windows_2010 - research.manchester.ac.uk file · web viewin 2015 359,960 people...

FAMILY MEMBERS’SUPPORT AND INFORMATION NEEDS

Abstract

Objective: This qualitative study aimed to understand the experiences, information and

support needs of family members of cancer patients, and their satisfaction with the

services provided to them as a family member.

Design: An inductive qualitative and critical realist approach to data collection and

analysis was taken.

Methods: Purposive sampling was used to identify family members of cancer patients.

We conducted semi-structured interviews with 10 participants over email, enabling us to

explore sensitive topics at a pace appropriate for each participant and gain rich sources

of information. We analysed the data using an inductive thematic analysis.

Results: Three superordinate themes were identified: information acquisition; seeking

support; and family members’ experiences of cancer. Needs were high, and a complex

relationship between information and support was apparent. Many participants felt

dissatisfied with the support and information received as it was sometimes inconsistent,

incorrect or vague; and some reported deterioration in their own health as a

consequence. Online communities were reported as being very informative and

supportive as the participants felt they could relate to the first-hand experience of the

other members.

Conclusion: Improving healthcare professionals’ awareness of the type of information

and support the family members need is vital for both family members and patients.

There is a need for the development of educational and psychological interventions to

assist family members in coping when a loved one is diagnosed with cancer, is

undergoing or recovering from treatment or is receiving palliative care.

Keywords: cancer, family, support, information, email interviews

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In 2015 359,960 people were diagnosed with cancer in the UK (Cancer Research UK,

2018). Understanding how cancer affects the family members of cancer patients and

learning about their information and support needs are critical. Families can provide a

lot of emotional and social support for patients and this can impact on the patient’s

management of their condition (Carlson et al, 2001).

The substantial psychological distress experienced by the nuclear family when faced

with cancer is becoming increasingly recognised (Bowman et al., 2003; Hirooka et al.,

2017; Holst-Hansson et al., 2017; Kotkamp et al., 2005; Luker et al., 2015; Revenson

and Pranikoff, 2005). The National Council for Hospice and Specialist Palliative Care

Service (1997) defined psychosocial care as care concerned with the psychological and

emotional well-being of the patient and family. Family members are not only faced with

the demands associated with providing care, but with those associated with loss and

grief (Pinquart and Sorensen, 2007).

Considering the impact of cancer on the wider family is important as decisions about

treatment and care are often not made by the patients alone but with the help of family

members (Revenson and Pranikoff, 2005). This can impact on the experiences and the

number of needs a family member has throughout the cancer trajectory. For example,

when an individual is diagnosed with cancer their family members often experience

high levels of distress and have a number of unmet needs (McDonald et al., 2015). The

involvement of family members in decision-making during treatment can also be

complex. The patient is the priority and it is important to balance patient authority with

the needs of the wider family (Laidsaar-Powell et al., 2016). Wilkes et al. (2000)

interviewed family members of cancer patients receiving palliative care. They found

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family members became frustrated and felt helpless when clinicians did not provide

information, and this often meant they were not able to make informed decisions about

care. Information seeking is an active coping mechanism that can aid a person’s

psychological adjustment to illness (Weisman and Worden, 1976). It enables people to

understand the challenges and consequences that a cancer diagnosis brings, and the need

for information has been demonstrated many times among patients and carers (e.g.,

Clayton et al., 2005; Neumann et al., 2011).

Assisting family members to feel satisfied that their own needs have been met may

enable families to feel more capable of supporting the patient (Friðriksdottir et al.,

2011). It is recognised that the needs of informal caregivers should be attended to as

well as the patients (Breitbart and Alici, 2009), but there is little research in to the

experiences of other family members of cancer patients (Berger et al., 2018; Ellegaard

et al., 2017; Rutten et al., 2005). For example, a systematic review of 32 studies found

that 18 of the included studies focused on the experiences of the patient’s spouse or

partner, four studies explored children’s experiences and 10 studies included a range of

relationships (Adams et al., 2009). Therefore, the current study aimed to explore cancer

patients’ family members’ experiences of cancer and whether they were satisfied with

the information and support they received from healthcare professionals and support

groups including online communities.

Method

Design

We employed qualitative methods to enable the exploration of the role of cancer within

the broader context of families.

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Participants

We conducted purposive sampling and participants were recruited via online cancer

support forums and groups, enabling a wide range of people to be contacted. The online

communities were English speaking, predominantly based in the UK or USA and open

to both cancer patients and relatives. Participants responded to an advert posted on the

online community detailing the study and were eligible to participate if they were at

least 18 years of age, had a family member with cancer, were not the primary caregiver

and could write and read English. To ensure a range of views were represented, and to

keep within the ethical boundaries of not over-recruiting participants for sensitive

topics, we anticipated at least ten participants would take part (Francis et al., 2010).

Written consent was gained via email.

Data collection

Interviews were conducted via email by one author (JL), which is a flexible and

versatile method making interviews convenient for participants (Murray and Sixsmith,

2002). Due to the sensitive nature of the current research, distance interviewing via e-

mail seemed the most appropriate as the participants did not have to talk about their

experiences in person with the researcher. Moreover, it has been suggested that the

internet may encourage people to provide rich sources of information about highly

sensitive topics (Rheingold, 1994). It was believed that email interviews would not only

suit the participants, as they would be able to reply at a convenient time for themselves,

but it would also facilitate a more thorough and thoughtful response to the participants’

answers. Similarly, participants have the time to consider their responses and clarify

meaning (Oppermann, 1995). Nevertheless, because the data were collected via email,

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there were a number of ethics considerations (Meho, 2006). We asked participants to

read the information sheet prior to taking part and provided instructions on how to

complete the interview (e.g., if possible in a quiet space with no interruptions). To

ensure confidentiality and anonymity throughout, we regularly changed the password

for the email account, we stored data securely and removed any identifiable information

from the data.

It was important that the participants felt able to speak about their experiences with

healthcare professionals in a non-judgemental way. Email interviews provide the

necessary space for this as individuals are not explaining their experiences directly to

the interviewers (Murray and Sixsmith, 1998). Also the analysis may reflect a truer

interpretation as the language used during email interviews is often more direct and

focussed on answering the questions.

The interview guideline was developed following a thorough review of the literature

and contained six open-ended questions (e.g., ‘What services were offered to you as a

family member?’ and ‘What support have you received from healthcare

professionals?’). The questions were framed around the participants’ experiences and

information and support needs because these are highlighted within the literature as

being important to both patients and carers. Careful attention was paid to not cause

additional distress to the participants. Members of the team had experience in working

with cancer patients, and the interview guideline was checked by all of the research

team, piloted with two participants and no changes were necessary.

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The semi-structured design allowed participants to expand from the posed questions

and the researcher was able to ask further questions where appropriate. The tense of the

questions was adapted for each participant depending on whether the family member

was living or had died. To prevent over-burdening the participants, one main question

and some prompts were sent in one email at a time, with the next questions being sent

once a reply had been received. On average, the interviews were completed within 10

days and there was no limit on the length of time it took participants to reply. Data

saturation occurred when no new themes emerged, and recruitment ceased following

the analysis of 10 interviews. All participants were given a follow up email containing

information about where to find out more information and support.

Data analysis

The participants’ responses remained a verbatim report and we conducted an inductive

thematic analysis (Braun and Clarke, 2006) as it was vital the participants’ views and

experiences were reported accurately and informed the overarching categories. Two of

the authors analysed the data independently and initial ideas were compared and noted.

Data considered significant to the research question (Boyatzis, 1998) and the

participants were written as a code and grouped iteratively. Potential themes were

determined by the data and refined to ensure the data within each theme was meaningful

and coherent whilst being clearly distinct from the other themes. Clear titles and

definitions for each superordinate theme and sub-themes were agreed by all authors.

The explicit and systematic detail explaining how each theme was identified provided

evidence of a coherent and transparent description of the data demonstrating

commitment and rigour (Yardley, 2000). Thematic maps were developed and were

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important when assessing how accurately the themes reflected the data (Braun and

Clarke, 2006). Sensitivity to the context was provided through the inclusion of extracts,

and a table with all of the appropriate quotes for each theme was developed to ensure

the themes were a realistic reflection of the participants’ experiences. Consequently,

impact and importance can be found within the analysis as only strong themes were

included (Yardley, 2000).

Reflexive account

We took a critical realist approach to reflect our view that the world is something that

exists independently of constructions, perceptions and theories, whilst being an intrinsic

representation and scientific inquiry that is socially embedded (e.g. Yardley, 2000). The

first author was a student and had no immediate family members with cancer and great

effort was applied to ensure the analysis was always a true reflection of the data.

Ethical approval

Ethical approval was granted from [blinded for review] ethics committee.

Results

Two male and eight female family members of cancer patients within the age of 23 and

60 years participated. We excluded three participants as they were either cancer patients

or the primary caregiver of cancer patients. Some participants spoke of their experiences

of cancer in several of their relatives, and there were a variety of relatives including

daughters (55%), sisters (18%), a son-in-law (9%), son (9%) and father (9%). The types

of cancer also differed between participants (Table 1).

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Table 1

Participants’ Characteristics

Pseudonym

Age

(years) Gender

Relation to

patient Type of cancer

Country of

residence

Rachel 47 Female Daughter Prostate UK

Tom 60 Male Father

Son-in-law

Lymphoma

Lung

UK

Sarah 37 Female Daughter Oesophageal UK

John 33 Male Son Prostate Greece

Amy 23 Female Daughter Rare appendix cancer UK

Carol 49 Female Sister Breast UK

Alice 39 Female Daughter Glioblastoma

Multiforme

USA

Frances 28 Female Sister Leukaemia USA

Anne 60 Female Daughter Bladder USA

Josie 56 Female Daughter Skin and oesophageal UK

Three themes could be found within the material: information acquisition, seeking

support and family members’ experiences of cancer.

Theme 1: Information acquisition

Information needs were particularly high following the initial diagnosis as the

participants wanted to understand what to expect during the cancer trajectory. This need

for information and the type of information was similar across participants. However

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the information they received was often vague and non-specific, and participants

reported limited opportunities for clarification.

“I have no ability/opportunity to have this explained further or in a way that I

understand” (Carol, sister).

Seeking information

Seeking information began very early in the cancer trajectory. Participants discussed

being very pro-active when it came to seeking information. They wanted to be well

informed and believed knowing what to expect would have helped them to prepare and

‘handle the stress’ a little easier. Whilst information was available for family members,

the lack of specific information left some feeling ill-informed.

‘we have the internet and Macmillan stuff but no close support or advice about

specifics.... poor’ (Tom, father).

Satisfaction with information received from others

Throughout the interviews, participants’ satisfaction with the amount of information

they were given varied. One participant experienced ‘anxiety and stress’ as she felt that

the staff were reluctant to answer her questions. Another participant discussed receiving

‘contradictory’ and ‘incorrect’ information and described this experience as ‘walking

through a minefield’.

The participants reported being reliant upon the patient for information; therefore,

information was often based on the patient’s understanding and ability to share

information. Consequently, the participants did not feel well informed and could not

always ask the questions they would have liked to:

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‘I was aware that Dad did not mention stages or grades to me, but I felt that I did

not want to intrude on his privacy by asking for any further information’ (Sarah,

daughter).

When information was provided by healthcare professionals, some participants from the

UK and USA were satisfied with the information received about the diagnosis. They felt

that the information was ‘complete’ and there were opportunities to ‘clarify anything’ as

staff were aware that ‘it doesn’t always go in at first’. Whereas, one participant from the

UK described finding out her father’s diagnosis ‘accidentally’ and another from the

USA was not present at the time of her sister’s diagnosis, and did not understand the

information she was told.

“I have had one experience of being given completely wrong information, because the

nurse had actually confused my father with another patient” (Rachel, daughter).

Searching the internet

Many of the participants reported acquiring much of their information from the internet

and some explained that they were directed to online resources by healthcare

professionals. The majority of participants found the internet a useful resource and were

able to find a large amount of information. One participant wrote about the benefits of

these communities stating the support group was the ‘most informative and knowledge

gaining place’. This participant also reported giving ‘more credence’ to those who had

lived these experiences rather than to the doctors who ‘learned about this in a book’.

Another participant liked the ‘anonymity’ of the online forum she was part of and the

participants described the forums as places where they could talk about how they felt

and have their questions answered:

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‘I began pouring my heart out there and the response was amazing. Every

question I had was answered’ (Anne, daughter).

While the internet was a useful resource for the participants, the lack of specific

information meant that the information gained was limited. Moreover, using online

resources appeared to be problematic for some of the participants. For example, Carol

was not ‘a confident computer user’ and had not accessed some of the online resources

available. The participants acknowledged the wealth of information available on the

internet, however they discussed being cautious when it came to using the internet to

gain information. Some of the participants felt that the information can lead you to

‘paths that you don’t necessarily need to be on’. Importantly, the participants also

reported not always wanting to use the internet to gain more information as it could

cause extra anxieties especially around the time of the initial diagnosis.

Theme 2: Seeking support

Satisfaction with the support received by the participants varied, with some feeling

supported and satisfied and others not at all. The participants’ country of residence did

not appear to impact on the support they required or received. The majority of

participants reported that their support needs were the greatest at the time of diagnosis.

However, the needs of the participants varied throughout the cancer trajectory. For

example, Rachel discussed how the ‘things that were once very scary become routine

and the next event becomes the scary one’. Nevertheless, the devastating effects of

losing their loved ones were present and the need for support was stated:

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‘I think he just wanted to die there and then in the beginning. At the time I felt

like I would be happy to join him, I felt very low too, it was very traumatic for us

all’ (Sarah, daughter).

Some of the participants discussed how they reflected on their emotional needs once

their loved one had passed as they did not have the time before. In hindsight they felt

that receiving support from healthcare professionals would have benefitted both the

patient and themselves:

‘it is only looking back that I realise we would both have been better prepared to

cope. I feel sad that I only realised after his death when i had time to reflect.’

(Josie, daughter).

Support groups

The importance of group support was highlighted by many of the participants. Gaining

support from people ‘who are going through the same’ experiences was beneficial for

the participants, and Tom described talking in a group as ‘cathartic’. The participants

found the people in these groups to be ‘kind, understanding and supportive’ which one

participant described as ‘truly humbling’. The advantages of online communities were

emphasised along with the experiential support gained from them. However, these were

often groups the participants had found themselves.

The online communities were depicted as ‘invaluable’ as they provided ‘great support’

to the participants. Some participants, reported having a lack of time to attend support

groups, and the online groups were more convenient. Nevertheless, not all of the

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participants wanted to access these groups and one participant explained that she did not

have the time.

Satisfaction with received support

One participant from the UK reported very positive experiences with regards to

receiving support. Some reported that the offer of support was by ‘chance’ and in a

‘disorganised’ manner. In some cases the support offered did not materialise, and the

difficulties faced when trying to gain support were discussed by a few participants. One

participant emphasised how much she had to ‘push’ to receive these services, but was

satisfied with the support she finally received. Others reported being given a number

they could call if they wished to speak to somebody. Although, one participant did not

like to contact the nurse directly, later saying that she felt the nurse’s ‘resources would

have been better used on patients themselves’. Despite feeling like this, she also

reported that the best form of help for her would have been to speak to a specialist

cancer nurse. These ambivalent feelings were present throughout this particular

interview.

Some of the participants relied on the support offered by family and friends rather than

from healthcare professionals. The importance of having someone to talk to was

highlighted and the support received from friends, family and the online groups was

emphasised by most of the participants.

‘We have been and continue to have so many people supporting us. Our church, bible

study group that I am in, friends and most important to us family’ (Frances, sister).

Theme 3: Family members’ experiences of cancer

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The impact of cancer on family members

Having a family member diagnosed with cancer was described as ‘catastrophic’,

‘traumatic’ and ‘stressful’. Some of the participants explained they coped by taking one

day at a time.

‘One of the district nurses told me to “put one foot in front of the other, and don’t forget

to breathe”.... I find that a useful philosophy!!’ (Rachel, daughter).

Some of the participants talked about how their lives changed. For example, one

participant had to stay in a hotel four and a half hours away from her home when her

sister was in hospital and another converted his dining room into a bedroom with a

hospital bed for his mother-in-law. The financial difficulties following the diagnosis of

cancer were also discussed (e.g., house conversions, transport for treatments). These

added extra strains onto the participants and many reported feeling dissatisfied with

some of the services available. The physical impact of having a family member with

cancer was also apparent:

‘I was having a very hard time sleeping. I felt like I was going nuts from no

sleep.’ (Frances, sister).

The emotional impact was seen across all of the participants with the words ‘anxious’,

‘traumatic’ and ‘frightened’ being used. When her father’s cancer returned, one

participant ‘felt very low’ and another used to ‘weep’ the day before taking her father to

see the oncologist. Some participants reported feeling confused and were ‘busy just

trying to cope’. Throughout the interviews the emotional impact of cancer was present

and some of the participants discussed the long-term effects. Following the death of her

father, one participant felt her grief was similar to post-traumatic stress disorder and has

since been prescribed anti-depressants to help her cope.

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‘I think there are probably a lot of issues that have gone undealt with over the years due

to a lack of support and I imagine I will be dealing with them for a long time to come,

especially following the death of my Dad’ (Amy, daughter).

The relationship between patient needs and family members’ needs

When talking about their needs, some of the family members did not distinguish

themselves from the patient using words such as ‘we’ and ‘us’. While the family

members did not have the diagnosis of cancer, they too lived through the reality of the

disease.

Highlighted by some of the participants was how the patient’s needs indirectly affected

their own. When the patient was well looked after by professionals, the family members

also felt supported and satisfied. Similarly, family members felt let down and

dissatisfied when the patients did not receive enough help or information. However, this

relationship was not always apparent:

‘As a family member I personally was offered no services. By that I mean that

my mom was sent home with hospice and everything was geared toward taking

care of her. I was absolutely fine with that and I am not complaining but if I had

had some resources suggested or recommended to me then I might have been

able to handle the stress’ (Alice, daughter).

The patient was the participants’ priority, meaning anything the participants felt came

secondary to the needs of the patient. Participants reported ‘needing to be brave’ and

‘cheerful’ despite there being ‘a lot of tears’ when alone. Josie reported being so

concerned about her father that she did not realise that she needed extra help.

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Interestingly, one participant reported that her father was trying to ‘protect’ her by

withholding information:

‘I think Dad had seen how anxious the operations had made me, so did not let me in on

his worries often and did not tell me about these appointments till he knew it was good

news’ (Sarah, daughter).

Relationship between information and support

The amount of information the participants often received affected the level of support

they needed. Being able to understand what was happening improved their experiences

and made the situation a little ‘less scary’. The participants often reported information

and support together and did not view them as two separate needs. Feeling well

supported was often reported in the context of receiving information rather than being

emotionally supported:

‘face to face support would have allowed me to make specific enquiries about his

cancer’ (Josie, daughter).

One participant explained how she tried to fulfil her emotional needs by learning as

much as she could about everything related to cancer, and she was able to gain

‘strength’ from increasing her knowledge. She also reported wanting to give others

information so they would not ‘run into the same lack of support’. However, feeling

well informed did not always help the participants to feel supported. Amy was satisfied

with the information she was given during her father’s treatment but she was

dissatisfied with the level of support she received during this time. Thus, while

information and emotional needs are sometimes linked, they can also occur in isolation

of each other:

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‘I would say then that in terms of the information we received during his treatment as to

the risks etc I was definitely satisfied but in terms of the levels of support received then

no, I was not satisfied’ (Amy, daughter).

Discussion

When people are diagnosed with cancer their family members are also affected.

Previous research has focused on the experiences and needs of the main caregiver,

suggesting that support and information are vital when a family member is experiencing

cancer (Kim et al., 2015; Northouse et al., 2012; Swick et al., 2012). Our findings

provide insight into the experiences and information and support needs of family

members of cancer patients.

The emotional impact of the cancer was great throughout the cancer trajectory, but

greatest at the time of diagnosis. This severe impact of cancer was irrespective of the

participant’s relationship with the cancer patient (e.g., sister or mother-in-law).

Although, the impact of losing a father to cancer was demonstrated in particular by two

participants; highlighting the difficulties faced by adult children. Thus, it is important

that individual needs are considered rather than a person’s age or caring status. The

participants’ use of emotive language throughout their interviews suggested the impact

was severe for the family members in this study. Emotional distress has been reported

among family carers of cancer patients (Wheelwright et al., 2015) and the present study

demonstrated how all family members can experience psychological distress.

Within this study the family members of cancer patients proactively sought information.

The main sources of information the participants used were healthcare professionals,

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leaflets and the internet. All of these sources had advantages and disadvantages,

impacting on the participants’ overall experiences of cancer and their levels of

satisfaction with the information they received.

The participants’ need for information may be explained through the Cognitive

Appraisal Theory of Stress and Coping (Lazarus and Folkman, 1984). A person’s

psychosocial adjustment and how well they cope with a situation are influenced by

personal, illness-related and social factors which are antecedent conditions mediated by

their cognitive appraisals. Folkman and Lazarus (1980) suggested controllability is

critical in the appraisal of stressors. Consequently, one of the most universal forms of

coping is information seeking (Cohen and Lazarus, 1979; Hamburg and Adams, 1967).

We did not measure adjustment to the cancer within the current study, however the

participants’ needs appeared to be affected by their uncertainty about the diagnosis.

Moreover, the lack of practical information meant that many of the participants were

dissatisfied and did not feel in control of the situation. Information needs were

particularly high following diagnosis and the participants often reported that their needs

remained unmet at this time. Their satisfaction with information increased as the cancer

patient embarked upon treatment.

The need to understand what was happening was prevalent throughout the interviews

and gaining accurate and extensive information can help families to feel better

equipped. Relevant information helps them to have a better understanding of symptoms

and prognosis promoting better health practices. Consequently, information-seeking can

divert attention from distressing thoughts and allow them to focus on the more practical

and useful matters, this is known as attention deployment (Lazarus et al., 1974). Thus,

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information-seeking behaviours do not allow time for rumination and appear to provide

an escape from the stress of seeing a loved one go through cancer. In the present study,

many participants discussed being so preoccupied with trying to get through each day

they were often not aware of the indirect effects the cancer was having on them

personally. It was only following the death of the cancer patient when information was

no longer required that some of the participants had time to reflect on their experience.

In some cases, this was when the distress was particularly prominent. Thus, other

adaptive coping mechanisms need to be put in to place to minimise the psychological

effects following the death of the patient.

The participants relied on information from healthcare professionals, but an interesting

finding from the present study was that many of the participants found online forums to

be the most valuable source of information and support. The exchange of information

on online sites proved crucial to some of the participants. This is in line with previous

research that has demonstrated how the internet can be used to share and find

information (Baker et al., 2003; Kalichman et al., 2002). People are able to participate

anonymously (Wagner et al., 2004) and clarify information to gain a greater

understanding (Preece, 2000). The significant value placed on the exchange of

information within these communities suggests experiential information and support are

important for family members of cancer patients and can influence their experiences.

The participants were satisfied with the support they received from those within the

online communities. Thus, despite feeling dissatisfied with some of the information and

support they received from healthcare professionals, there were other ways in which to

meet their needs.

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The importance of experiential support has been demonstrated among patient

populations (Ziebland and Wyke, 2012) and has become recognised as a source of

knowledge and support within healthcare practice (Locock and Brown, 2010). The

current findings suggest the benefits of experiential support extend beyond that of the

patient and aid family members too. Experiential support can act as a form of active

involvement allowing people’s experiences to be articulated and transformed into a

mode of action. Consequently, their experiences are no longer submissive and they can

actively participate in a social context helping with feelings of social isolation.

However, it is important that internet communities do not replace formal information

and face-to-face support as some of the participants were restricted due to their limited

computer skills and work commitments. Instead, formal support should be

complemented by the internet and experiential support to allow optimal support and

information for family members.

The resources of this study are important when thinking of psycho-educational

programs for persons having a family member with cancer. It is important for psycho-

educational programs to highlight the effects of having a family member with cancer;

educating family members about how important their needs are and what services are

available to them and the patient. Thus, developing a time and cost-effective strategy

may alleviate some of the strains placed on the healthcare system as families would feel

better informed and supported, and fewer long-term complications may be experienced.

The importance of having a relationship with healthcare professionals is well known

among patient populations (Wagner et al., 2010). This study has identified the

importance of such a relationship with other family members also. Perhaps, there needs

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to be an organisational shift with a multifaceted approach to cancer care where policy

makers, healthcare professionals and key stakeholders (e.g., service users and their

family) explore potential initiatives to improve communication and support for

relatives. In turn, this may impact on the experiences of the family members of cancer

patients.

Strengths and limitations

Participants were recruited from online communities which restricted the participant

profile to those who use the internet. Therefore, it is possible that the participants in the

current study had a higher proportion of unmet information and needs, and more

negative experiences when compared to those not using online communities.

Nevertheless, we have identified a number of experiences and needs of family members

which previous studies have not explored. Moreover, the use of distance interviewing

via e-mail enabled us to contact participants from a wide range of geographical

locations demonstrating the similarities in experiences and information and support

needs across different countries. However, we relied on the participants’ literacy skills

and had an assumption of shared meanings which may have varied between sub-

cultures. The qualitative and inductive nature of the study meant that the meanings the

participants assigned to support were very subjective and sometimes different.

Nevertheless, the subjective meanings applied to the term ‘support’, and the inductive

nature of the analysis, have provided valuable insight into what support meant to family

members of cancer patients. Finally, one participant spoke of the financial implications

which could be considered embarrassing and sensitive, and they may not have divulged

this information if the interviews were conducted in person.

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Future research

As many of the participants discussed the importance of online forums in terms of

receiving information and support, it would be valuable to explore: how those who do

not have access to the internet meet their information and support needs; and whether

experiences and needs differ between those who do use online forums compared with

those who do not. In addition, understanding the experiences of healthcare professionals

in relation to speaking with family members of cancer patients who are not the primary

caregiver will be important in gaining a holistic understanding of how to improve

services and experiences.

Conclusion

The impact of being a family member of a cancer patient was severe and demonstrated

throughout this study. It is difficult to know whether receiving information helps a

person to adjust due to the information or supportive elements. Within the current study,

information and support were often discussed simultaneously by all of the participants.

This may partly explain why information is often seen as a supportive tool and, when

the participants were satisfied with the information they received they frequently

reported feeling satisfied with the support offered too. Whilst information aids family

members of cancer patients in the management of the illness and practical aspects of

caring, it also helps them to deal with their own feelings of vulnerability. However,

sometimes the participants reported feeling satisfied with the information they received

but not the support. Therefore it is important to recognise that whilst information and

support sometimes complement each other, both need to be addressed and can influence

the overall experiences of the family members of cancer patients. Our findings were

similar across all of the participants and did not vary by relationship to the patient or by

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country. We have demonstrated that information and support needs are particularly high

following diagnosis, but these needs remained largely unmet which impacted on the

overall experiences of the family members.

Declaration of conflicting interests

The authors declare that there is no conflict of interest.

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