I S S U E S A N D IN N O V A T I O N S IN N U R S I N G P R A C T I C E

Parents and partners: lay carers’ perceptions of their role in the

treatment and care of adults with cystic fibrosis
Karen Lowton* BSc MSc PhD RGN
Research Fellow, Department of Palliative Care and Policy, Guy’s, King’s and St Thomas’ School of Medicine, King’s College
London, London, UK

Submitted for publication 12 October 2001

Accepted for publication 9 April 2002

Correspondence: LOWTON K. (2002) Journal of Advanced Nursing 39(2), 174–181

Karen Lowton, Parents and partners: lay carers’ perceptions of their role in the treatment and care
Department of Palliative Care and Policy, of adults with cystic fibrosis
Guy’s, King’s and St Thomas’ School of
Background. Cystic fibrosis (CF) is the most common autosomal recessive genetic
Medicine,
disease in Caucasian people, traditionally conceptualized as a condition whereby
King’s College London,
Cutcombe Road, sufferers died in childhood. However, the current median survival age of 30 and a
London SE5 9RJ, predicted median survival age of 40 for those born with the disease over the last
UK. decade ensure that families members will assist hospital staff with treatment and
E-mail: karen.lowton@kcl.ac.uk care well into most patients’ adulthood.
Aims. This study explores the perceptions and experiences of lay care-giving
*At the time of the research a doctoral amongst parents and partners of adults with CF who were being treated at a spe-
student at Royal Holloway, University of
cialist CF centre in England.
London, London, UK.
Methods. Thirty-one relatives of adults with CF were interviewed in their own
homes using an interview topic guide. All interviews were audiotape recorded and
transcribed verbatim. Analysis of data was assisted by ATLAS-ti, a software
package for qualitative research.
Findings. Two main themes surrounding lay carers’ role in treatment and care were
identified. Firstly, the notion of lay carers giving
expert care, both in hospital and at
home was recognized. Parents’ expertise was greater than that of partners until the
patient required intensive hospital interventions, when partner expertise increased.
Secondly, the degree of lay carers’ felt inclusion in the hospital consultation
appeared to depend on the nature of their relationship with the patient and the
patients’ health state.
Conclusion. Lay carers are routinely performing tasks for adults with CF that were
once the remit of trained nurses. Families need higher levels of nursing and social
support when certain treatments are used at home. Attention needs to be directed to
how lay carers of adult patients can be included in hospital consultations.

Keywords: cystic fibrosis, adults, chronic illness, qualitative research, interviews,

family caregivers, expertise, emotion work, home, hospital

Caucasians in the United States of America (USA) (Hammond

Introduction
Cystic fibrosis (CF) is most commonly found in populations of
European origin. The annual incidence of CF in the United
Kingdom (UK) has been estimated at 1:2415 births (Dodge
et al. 1997). A similar incidence of 1:2521 is described amongst
et al. 1991) and a lower frequency has been reported in other
ethnic groups, for example an estimated occurrence of 1:6902
people amongst native Brazilians (Cabello et al. 1999). It was
predicted that 7750 people would be living with the disease in
the UK in the year 2000 (Dodge et al. 1997).

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2002 Blackwell Science Ltd

Issues and innovations in nursing practice
When the condition was first described in 1938 (Anderson
1938), 70% of children died before their first birthday.
Today, because of better understanding of the disease and the
effects of modern treatment and health care (Hodson 1989),
children born in 1990 are predicted to have a median life
expectancy of 40 years (Elborn et al. 1991). Despite this, the
majority of sociological work continues to centre on children
or adolescents affected by CF and their families (see for
example, Bluebond-Langner 1991, Eiser et al. 1995).
Despite a focus on gene therapy research, current treatment
for CF is palliative, not curative, and aims to relieve symptoms
and enhance patients’ quality of life. The main symptoms of
the disease – chest infections and digestive problems – are
treated with daily chest physiotherapy to clear the lungs; oral,
nebulized or intravenous (i.v.) antibiotics; and pancreatic
enzymes. Additional problems such as infertility (Sawyer
1996) and CF-related diabetes (Dodge & Morrison 1992) also
require care and understanding from professionals and lay
carers alike. The availability of specialist centres (Conway
et al. 1998, Mahadeva et al. 1998), and avoidance of others
with infection (Taylor et al. 1993) are thought by doctors to
have influenced patients’ level of health considerably. Current
policy recommendations suggest that treatment for all indi-
viduals with CF should be given at this type of centre (Cystic
Fibrosis Trust, British Thoracic Society 1996). When routine
treatment fails, patients may be offered organ transplantation
(Smyth et al. 1991), although many will die whilst waiting for
donor organs to become available (Keller 1998).

Hospital at home (HaH) services are currently provided
throughout a number of medical specialties in the UK, whereby
patients with previously defined inpatient needs are cared for in
their own homes (Hibberd 1998). In effect, continuous
hospital care is replaced by a domiciliary service in which the
carer is required to fill gaps in professional care by providing
assistance to the patient, thereby further developing the role of
the lay carer. Cystic fibrosis is one of the medical specialties
where HaH care is becoming routine, particularly in the
administration of i.v. antibiotics during acute chest infections.
However, current literature gives no clear policy definition of
what the lay carer’s role is expected by the hospital to include
for any disease group (Monalto & Grayson 1998).
A carer has been defined as
someone who gives sustained,
close, direct mental and physical attention to the person being
cared for (James 1992, p. 489). Caring for close friends or
relatives involves more than carrying out discrete tasks
(Stacey 1988); the adult with CF’s close family may provide
support and assistance in a number of ways. Although lay
caring for children with CF has been documented well in the
nursing, medical and sociological literature, recent research
(Coyne 1995, 1997) does not acknowledge that there are

2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(2), 174–181
Parents and partners of adults with cystic fibrosis
carers for adults as well as children with CF who need
support in the home.
The study
Aim
This paper reports findings from a wider study concerning the
perceptions of health and risks of treatment amongst adults
with CF and their lay carers. The focus of the paper here is to
examine carers’ perception of their role in the treatment and
care of adults with CF. Data from carer interviews only is
therefore reported.
Method
Participants
Letters were sent to 183 patients aged from 18 to 40 years
living in Southeast England and attending one specialist CF
centre. Overall, 26% (47) of those approached agreed to take
part, after follow-up and reminder letters. All patients who
participated in the study were asked to nominate an indi-
vidual who provided them with most support as their main
lay carer. Thirty-one carers of this adult patient group were
involved in in-depth interviews during 1997/8. Those inter-
viewed were not chosen to be representative of carers of
adults at the specialist clinic, but rather so that they might
provide information on the diversity of experiences of caring
for an adult with CF.
The group of nominated lay carers was divided between
parents and partners of patients; 11 female and nine male
patients chose partners, and six female and five male patients
nominated parents as their lay carer. The mean age of those
choosing partners was 31Æ5 years for women and 35Æ1 years
for men, compared to 23Æ0 years for women and 26Æ2 years
for men for those choosing parents. Table 1 shows the
numbers of parent/partner interviews.
Setting and procedure
Carers were interviewed separately in their own homes using
an interview topic guide. Interviews lasted on average for
one hour. In three out of 20 cases, the patient’s nominated
partner appeared to be only marginally involved in their care.
Interviews with these partners tended to be short (around
20–30 minutes). The interview topic guide covered carers’
perceptions of the health and quality of life of an adult with
CF, the risks of treatment and care, carers’ relationships with
health care providers and how carers saw their own role in
providing care and support to the adult with CF. Only data
regarding carers’ role perceptions are presented here.
175
K. Lowton
Nominated carer Male patients Female patients
Male partner – 11
Female partner 9 –
Mother 1 5
Father 1 –
Mother and father together 3 1
Total 14 17
Ethics
Approval was obtained for this study from the hospital ethics
committee. Participants were assured of confidentiality in
relation to their family member and the hospital and that
identities would be protected in research reports.
Data analysis
Interviews were audiotape recorded and transcribed verbatim
by the author. The project supervisor, an experienced social
scientist, listened to a selection of tapes. Transcripts were
analysed using the ATLAS-ti software programme for qualit-
ative data. The analysis was performed in a series of stages.
Codes were attached to a segment of data such as a word,
phrase or sentence. Codes were then grouped into categories,
the conceptual foundation for analysis as described by Dey
(1993), in discussion with the project supervisor. The majority
of conceptual categories had started to be developed during
the course of the research and these were discussed with re-
spondents during their interviews. Categories were subse-
quently developed analytically (Strauss 1987) with two
themes arising. The first theme consisted of lay carers of giving

expert care both in hospital and at home. Secondly, the theme
of carers’ felt inclusion in the consultation was established.
Findings
During their interviews, parents of four adults with CF stated
that they had believed that their role as a carer would last
only until their offspring died in early childhood. Indeed, it
was common in the late 1960s and 1970s, when most
patients in the study were born, for a prognosis of death in
infancy to be given by doctors diagnosing the disease.
However, all parents in this sample continued to care at
some level for their child throughout their adult life.
Expert lay carers
The concept of
expert lay care included carers’ notions of
being knowledgeable about CF treatment requirements and
their relative’s health state, being informed of medical
progress regarding CF and advising dependants when they
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2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(2), 174–181
Table 1 Carers interviewed by relation-
All patients ship to patients
11
9
6
1
4
31
needed certain treatments such as i.v. antibiotics. When
discussing the care that they gave, parents appeared to be
more
expert than partners in providing assistance to their
relative, most likely because they had been caring for that
child since birth. The parents of two sons with CF described
the learning process that began for them when their eldest son
was diagnosed with CF:
Well, really experience over the years, originally from pamphlets
from the [CF] Trust, and then really just experience over the years, of
different times both James and Oscar have been ill, and they’ve gone
into hospital, what have you.
The level of parents’ expertise was said by carers often to lead
to disagreements between themselves and health care profes-
sionals. The mother of an 18-year-old woman with CF
described her experience of her daughter having an intraven-
ous cannula, a
long line, being inserted:
I mean there’s [consultant] saying to me,
Ill put a long line in, that’ll
last her at least a week to 10 days’ and I said,
No it wont.’ and he
thought I was talking out the top of my head. And he put the long line in,
and it broke down in 48 hours, and he said to me,
Im sorry, I should
have believed you.’ I said,
Well, Im not trying to tell you your job, but I
know her, and I just knew it wouldn’t work, because she tissues.
Jargon such as
she tissues was used comfortably by the
majority of lay carers throughout their interviews and further
serves to illustrate the expertise that these carers possessed.
This expertise could be used to help others with CF as well as
their own relative. The mother of a 21-year-old man stated
that her expertise enabled her to identify the side-effects of a
different strength of a pancreatic enzyme that he had been
given and which was causing numerous side-effects. This
mother stated that her observation had enabled many more
patients with these symptoms to be recognized by doctors
subsequently, and she believed that this was an important
role that could be played by all lay carers of people with CF.
This level of experience was most commonly expressed by
parents, who had a longer history of caring, rather than by
partners.
The work of parent carers was wide-ranging. They stated
that they fetched prescriptions, prepared and cleaned out
Issues and innovations in nursing practice
nebulisers, performed physiotherapy and prepared and
administered i.v. antibiotics. Many parents with children
still living at home voiced the hope that partners would one
day take over the caring role, as the mother of an 18-year-old
daughter stated:
Well, it is very much a teamwork thing, and I would hope that
eventually, if and when she pairs up with somebody on a fairly
permanent basis, that, well, I think if he is the right one then he will
possibly, to a certain extent take over the caring role that I have.
However, the introduction of partners into patients’ lives did
not necessarily mean that they immediately took over the role
of parents as
carers. Like many partners, the wife of a
35-year-old civil servant stated that, although she was very
supportive of her husband, she did not participate in
supporting him to the same degree that his parents had. In
her case this decision was consciously made:
When we first got married his dad used to get his medicines for him
and everything, or his mum, and they used to do a lot for him. And
then after we got married I started to do that, and in the end I thought,

Hang on a minute and I said to him,
You have got to do it because its
your illness and you have got to be able to look after it.’…And he does
it and he arranges it all, sorts it all out, makes sure it’s [the
prescription] there every month and he gets on with it basically, I don’t
get involved. Don’t know what it [medicine] is any more half the time.
The two types of carer, therefore, saw their role as being
qualitatively different; parents’ expertise and level of involve-
ment in care was greater than that of partners in the majority
of cases whilst the adult with CF was in relatively good health
requiring minimal routine treatment. However, when the
patient began to require intensive hospital interventions, the
level of partner
expertise increased, as did the amount of
time spent in providing care such as chest physiotherapy.
During her interview the wife of a 39-year-old patient spoke
of the physical work she performed whilst he was on the
waiting list for a heart-lung transplant. This patient’s
condition had deteriorated so badly that he spent most of
his time on the waiting list as an inpatient. As other parents
and partners also perceived, a shortage of physiotherapists
prevented the hospital from providing a basic level of care for
patients. This shortage required lay carers to perform roles
that should usually be carried out by health care profession-
als. Another quotation illustrates lay carers’ perception of the
hospital’s reliance on their expertise in performing physio-
therapy and administering i.v. drugs, even when their
relatives were in patients:
When [he] was in hospital for a long time the only criticism I would
have is the lack of physio[therapist]s, not the lack of them wanting to

2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(2), 174–181
Parents and partners of adults with cystic fibrosis
give him physio[therapy] but because he needed so much. I ended up
giving him physio[therapy] quite a lot and I was absolutely exhausted
working full-time and going to the hospital at 6Æ30 in the morning to
do his i.v.s, [then] coming back in the evening to do his i.v.s.
Indeed, this partner stated that she had taken over the on-call
physiotherapist’s role to such an extent that on one occasion
a doctor, assuming her to be the physiotherapist, berated her
for being late into the hospital one evening. Thus, the main
burden of care was seen by carers to be with the immediate
family, which, although often given willingly, was physically
and emotionally demanding.
Relatives reported presenting a
brave face to the patient
despite their own and hospital staff’s uncertainty of the
physical outcome. One father recounted a time when his 22-
year-old daughter was in hospital for the planned removal of
an infected line, something she had been resisting for many
months. The infection had spread to such an extent that he
reported fears amongst medical staff over the potential
outcome. He recalled:
It was like ER [television programme], they [CF clinic staff] went and
got the heart monitor and everything, plugged it all in, sweat was
pouring off her face and she was sitting there, and we were told to get
out and then we were told to come in. We wondered what on earth was
going to happen next. And she just turned round and said,
Am I going
to die? and she was really dead scared, and that’s really, what do you
say?
Of course youre not going to die.’ But when she was better we
referred back to that and said,
Remember that time? Well, now we can
tell you, we dont know what’s going to happen, or how it’s going to
happen, but that’s the reality of it, it may happen as quickly as that’.
This quotation highlights the limits of expertise of both the
lay carer and hospital staff. It also illustrates parents’
uncertainty inherent in caring for a chronically ill adult. In
this case, once she had recovered from the infection this
patient’s parents used their uncertainty about the outcome of
the disease and the possibility of death in an attempt to make
her become more adherent to her treatment.
In using a HaH scheme, carers have to learn skills that until
recently were the sole jurisdiction of health care profession-
als. In CF care the administration of i.v. antibiotics is set
against a background of daily routine treatment, thereby
adding greatly to the work already performed by patients and
lay carers. During periods of acute infection that were treated
at home, parents perceived their caring role as one which
included fighting for proper care when support for both
patients and carers was seen by them to be in disarray. The
mother of a 25-years-old woman described an episode when
she was on her 25th day of i.v. antibiotics at home (the usual
course of i.v.s is 7–10 days):
177
K. Lowton
And she was really poorly so I phoned up and got [consultant’s]
secretary, and I said,
Look, my daughters really unwell; I want to see
her [consultant] this afternoon in clinic. Is she in? Can I bring her
up?’ And I went up there and [senior registrar] was there and he
managed to get her in a high dependency bed in the end. I knew once
they saw her they’d realize she needed to be in. But having done
25 days of i.v.s and still not well, you know, it was getting ridiculous.
And I sort of bulldozed my way in that way.
Although parents stated that they took the lead in providing
care when their children were experiencing acute episodes of
infection, partners reported they were more likely to wait to
be asked by patients for their help in home treatment as the
husband of a 31-years-old woman explained:
KL: Do you help [her] with any of her treatments?
Interviewee: I have done in the past. I mean, obviously now, with the
nebuliser, I’ll mix it up for her, if she says to me,
Im just doing such-
and-such, can you mix it up?’ I’ll mix it up. I mean I have before, when
she’s come home and she’s had to do all the i.v.s with syringes, I’ve sat
there putting them in, you know, me arm’s aching from [injecting
them], but if [she] wants a hand with it she’ll ask me and I’ll do it.
It has been shown in this study that both parents and partners
can be considered to be providing expert care to varying
degrees, with partners providing more support to inpatients
as their health deteriorated. Lay carers’ felt inclusion in
consultations between the patient and the CF clinic on an
outpatient basis was also found to be qualitatively different;
it is to this issue that we now turn.
Inclusion in consultations
Just as
expert lay care developed through the diagnosis or
deterioration of patients’ health states, so the degree of
involvement stated by carers in their relatives’ hospital
outpatients’ consultations also changed. As their children
grew older, parents’ involvement with outpatients’ appoint-
ments was reported to decrease. On referral to the adult
clinic, parents said that they were included in consultations
in the same way as they had been in the paediatric clinic.
They then became
sidelined by the clinic, or reduced
contact themselves, as their child grew older and more
confident in their dealings with health care staff. Many
parents found this change difficult to adapt to, especially
when wanting to raise their own concerns and uncertainties
with doctors.
One man’s mother reported no longer accompanying her
son to his outpatients’ appointments. Although she felt that
she had been involved in the decision for him to go onto the
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2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(2), 174–181
transplant list when his health became distressing, she
reported now sitting outside in the corridor whilst her son
attended his regular outpatient appointments. She stated:
[It’s like] I haven’t got a view any more, yeah, I felt like that,
definitely. There was an occasion, not the last time I went up but a
few times ago, there one of the doctors really didn’t want to talk to
me at all, and I didn’t like that. I like to put over my bit.
For partners, the opposite experience to parents was found.
Instead of intense involvement leading to the feeling of being

sidelined, many initially had no dealings with the clinic other
than to drive patients to appointments. However, the degree
to which they were included in consultations changed,
particularly if the desire to begin a family was raised with
health care professionals and their involvement in services
such as genetic antenatal screening or in vitro fertilization
(IVF) was required. Once thus involved, partners felt that
they were more included at the clinic, especially if they had
also received medical care. One woman was married to a
33-year-old man with CF and had undergone a failed IVF
treatment in an attempt to start a family. She observed of her
relationship with staff:
Ever since then [the failed IVF attempt] they’ve always asked how
I am and they even, you know, [the IVF attempt was] a year ago, they
still sort of say, when I went up there last time, you know,
How are
you? and it’s nice because they remember that there’s been a problem
and they, it does make you feel like you, yeah, like friends, like a
family, yeah, it’s nice.
For partners in employment however, once hospital appoint-
ments became more frequent, a dilemma was often expressed
between accompanying the patient to these and working to
be able to support their family financially. One man had been
with his 26-year-old partner for 8 years at the time of his
interview and she was currently awaiting repeat lung trans-
plantation. He referred to the period when she was first put
on the transplant list due to her worsening health, where his
commitments were torn between providing an income and
supporting his wife and her brother:
From a very early stage in our relationship [she’s] not been working,
she was a student and she looked after her mum. She’s not worked so
of course the onus has been on myself to earn the money because this
place is quite a hefty bill every month. And up till about a month ago
we’ve had [her brother] and it was, from the early days, I had to
really get a job, to sort it out. Now I always feel insecure in moving
into a new job, so I couldn’t just say to the boss,
Do you mind if
I take a taxi ride with my wife to the hospital? because of them
[outpatients appointments] becoming more and more frequent. So,
whenever I could I went up with her, but obviously my job was more
Issues and innovations in nursing practice Parents and partners of adults with cystic fibrosis

important because if we didn’t have any money that would have just felt more
sidelined by the CF clinic as their child grew older
compounded the problems we already had. whereas partners generally felt more included as the patients’
health deteriorated. A
hierarchy of obligations of who
Employed carers stated that they felt obliged to keep time off
provides lay care (Ungerson 1987) may help to explain the
from work
in reserve in case an emergency with their partner
finding of parents reporting feeling left out from consulta-
arose. This did not appear to be such a problem for parents
tions as partners become more involved. In the hierarchy of
living with adult children, as there were usually two potential
obligations, the partner is the primary carer for older married
carers who could provide support. In contrast, only three out
or cohabiting people. The secondary caring relationship in
of the 20 partners interviewed did not work or worked in the
that instance is that of the parent, with mothers more
home.
commonly being carers than fathers.
Lay carers may pose a threat to professional health care
Discussion workers as they both may be performing the same work
(Stacey 1988), although carers’ expertise may not be consid-
Many authors have called for a greater awareness of carers’
ered
true expertise by health professionals for two reasons
roles and needs (see, for example Jones et al. 1993, Ward &
(Robinson & Hunter 1998). Firstly, health professionals may
Cavanagh 1997). This paper has attempted to explore the
consider formal study the only way to gain expert status,
role of lay carers in caring for an adult with CF. All three
whereas carers have skills that are gained through experience
types of caring work identified by James (1992) – emotional,
(here caring for a relative with CF in the home) rather than
physical and organizational/managerial – were embedded in
through professional channels. Secondly, professionals may
carers’ accounts in this study and form the basis for the
argue that, as skills are gained in caring for one individual,
expert care that lay carers provided.
the generalisability of these skills to similar others in the
Day-to-day decision-making was the care that formed the
group may be limited. However, the quotation in the context
bulk of organizational or managerial labour. Physical care,
of the side-effects of a pancreatic enzyme refutes the
the most easily identified, consisted of a wide range of daily
suggestion that carer expertise is not generalisable, at least
tasks from fetching prescriptions to administering i.v. anti-
from the parents’ perspective. Although the extent of the
biotics. During acute periods of infection or when their
overlap of tasks between professionals and lay carers is
relatives’ health became distressing, both parents’ and part-
limited (Stacey 1988), this may not be the case in the context
ners’ emotional support of the patient was intensified
of CF, as more treatment that was once only administered
requiring a great deal of
emotion work (Hochschild 1983).
during inpatient stays is now given by patients and lay carers
Hochschild notes that emotional labour
requires one to
at home.
induce or suppress feeling in order to sustain the outward
Previous studies of parental participation in care of
countenance that produces the proper state of mind in others
children with chronic illness have shown that parents report
– in this case, the sense of being cared for in a convivial and
stress when their competency is felt by them to be questioned
safe place (1983, p. 7). Emotional care is a key factor in lay
despite their familiarity with the care and treatment of their
and professional care although is often invisible. Providing
child (Coyne 1995, 1997). This stress may be because of an
support to patients who may be dying is an example of
unclear delineation of health care professional and carer tasks
emotional labour, providing reassurance and psychosocial
when the patient is in hospital (Canam 1993). However,
support, with carers giving something of themselves, as
when the adult patient is attending the hospital on an
opposed to a prescribed response (James 1992). The caregiver
outpatient basis the situation appears to be similar.
burden demonstrated here that occurred when patients were
As fewer NHS beds are available in the UK (Hensher &
waiting for donor organs has been overlooked in studies that
Edwards 1999), treatment administered at home is becoming
concentrate on caregiver distress after transplantation had
more common. In the context of CF, home care is advocated
taken place (for example Canning et al. 1996).
by specialist CF clinic staff (Bramwell et al. 1995, Bramwell
However, the degree to which carers felt that they
& Harvey 1998) and builds on early calls for parents of
possessed expertise or helped with patients’ treatment
children with CF to administer their i.v. drugs (Ellis 1989).
differed, depending on the patients’ health state and carers’
The HaH service provided by the CF clinic in this study
relationship with them. The most notable difference between
appeared from carers’ accounts to have very few back-up
patients and partners was that, despite ongoing medical
staff. This may have been as a result of many respondents in
treatment in the home meaning that carers’ inclusion in
this study living outside the area covered by the clinic’s
giving care was required on a more frequent basis, parents
community CF nurses; inadequate community support whilst

2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(2), 174–181 179
K. Lowton
on i.v. medication at home has been voiced previously by
parents responding to the Clinical Standards Advisory
Group’s (CSAG 1993) survey of CF care. Other HaH
schemes that have been reported have included home support
services such as physiotherapists and nurses, and have even
issued some patients with mobile phones (Shepperd et al.
1998a, 1998b), all of which were lacking for relatives and
patients in the present study.
The development of lay caring for people in the home has
been described as an
intermediate zone (Stacey 1988, p. 209)
between public and domestic realms, in which unthinking
and unrecorded effects of health and welfare policy disad-
vantage lay carers. Furthermore, disconnection from the
hospital through HaH care
can be experienced by families as
a profoundly alienating and isolating experience (Arras &
Dubler 1994, p. S21). Bywater (1981) found that mothers of
children with CF received virtually no support from commu-
nity agencies, a concern echoed again by Siddall (1994) and
alluded to here. More recently a call has been made for health
care professionals to attribute carers a separate status
alongside all chronically ill patients because of the stresses
intrinsic to the role of caring (Schofield & Bloch 1998). With
patients’ permission, it may be beneficial to include parents
and partners in routine hospital consultations, both to
highlight problems in their care of the patient and to receive
support from health care professionals who are often
themselves dependent on the lay carer’s help in managing
the patient.
Study limitations
The generalisability of results of this study may be affected by
the low response rate, although other types of sociological
investigation amongst this group of patients have reported a
similar low response (P. Alderson, personal communication).
Asking patients themselves to nominate a
carer for interview
may have biased the study in that a lay carer who wished to
participate was only able to if the adult with CF had agreed
to take part and had nominated that carer. It may be possible
therefore that carers were not nominated if patients felt
unsupported or antagonized by them. Although there were no
responses from patients stating this as a reason for nonpar-
ticipation, it is precisely the group not studied that may
illustrate the greatest social and health disadvantages (Naj-
man et al. 1992).
The tendency to choose partners or parents was most
probably a function of the age of the patients. Although twice
as many partners as parents were interviewed, a balance of
parent and partner excerpts has been used here to illustrate
the main findings. The situation of three partners not being as
180
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(2), 174–181
fully involved in the care of patients as other carers were is
interesting in itself as a relationship has evolved without
partners of patients appearing to take CF and its conse-
quences into account. Exploring during interviews the
reasons why these partners were not very involved in care
was deemed by the research team to be insensitive within the
context of the wider study and was therefore not attempted,
although identifying why individuals do not become involved
in care is as important as knowing how and why they do.
Conclusion
All but three carers interviewed here appeared to be routinely
performing tasks that were once the responsibility of nurses.
However, as patients’ health deteriorated or treatment
became ineffective, carers needed more nursing and social
support from outside the family. In this study, it was not how
the carer’s situation changed, but primarily how the patient’s
situation changed that affected the burden of care. Health
care professionals need to be aware of the extent of expertise
of lay carers and also that partners of patients will not
necessarily take over the parents’ caring role when adults
leave their parental home. This may leave patients both
physically and emotionally vulnerable and may require extra
support from the hospital at this time.
Acknowledgements
I wish to thank Dr Jonathan Gabe, Fran Duncan-Skingle,
Prof. Margaret Hodson and all the respondents for their help
in this research. I am grateful to the two anonymous reviewers
for their helpful comments. The study was funded by the
Economic and Social Research Council (ESRC) and Royal
Brompton and Harefield NHS Trust under the ESRC colla-
borative case award scheme (award number S00429637060).
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