‘it’s not the same as him being at home’: creating caring partnerships following nursing home...

`It's not the same as him being at home': creating caring

partnerships following nursing home placement

MIKEMIKE NOLANNOLAN PhD, RGN, RMN

Research Dean and Professor of Gerontological Nursing, School of Nursing and Midwifery,

University of Shefeld, Samuel Fox House, Northern General Hospital, Herries Road, Shefeld

S5 7AU, UK

CHERYLCHERYL DELLASEGADELLASEGA PhD, GNP

Associate Professor of Nursing and Biobehavioural Health, School of Nursing, Pennsylvania State

University, Pennsylvania, USA

Accepted for publication 28 February 1999

Summary

Admission to a nursing home is a major life event for both older people andfamily carers.

Despite a policy of community care in both the UK and the US, entry tonursing homes will be an increasingly common event.

Family carers are often the key decision makers but little is known about theirexperience of placement, especially adjustment after the event.

Antagonistic relationships can often develop between staff and relatives, as theformer seek to take over care and the latter to develop new roles.

There is a need to create a partnership between staff and family so that the careof the older person is improved and the carers' need to remain involved is

acknowledged.

Keywords: family carers, nursing home placement, partnership.

Introduction

Although placing a relative in residential or nursing home

care is known to be a stressful period for carers, their

needs after admission often receive little attention as it is

assumed that stress will abate (Lewis & Meredith, 1989;

Ritchie & Ledesert, 1992). However, it is now increasingly

recognized that this is not the case. The majority of

carers visit the home regularly (Ross et al., 1993, 1997;

Aneshensel et al., 1995; MacDonald et al., 1996) and far

from relinquishing care adopt new, but still potentially

stressful, roles (Buckwalter & Hall, 1987; Pratt et al.,

1987; Ritchie & Ledesert, 1992; Woods & MacMillan,

1992; Aneshensel et al., 1995; Dellasega & Nolan, 1997).

They may also contribute to the life of the home with

Rowles & High (1996), for example, suggesting that carers

participate in decision-making and help to educate staff

about the needs of the cared-for person.

The purpose of this article is to consider, from a cross-

national perspective, the experiences of family carers who

have placed a relative in a nursing home in the UK and the

US.

Correspondence to: Dr M. Nolan, University of Shefeld School ofNursing and Midwifery, Samuel Fox House, Northern GeneralHospital, Herries Road, Shefeld S5 7AU, UK.

Journal of Clinical Nursing 1999; 8: 723730

1999 Blackwell Science Ltd 723

Literature review

In order to appreciate how carers adjust postplacement, a

number of authors have suggested that the transition to a

nursing home could be eased by promoting an under-

standing of relocation as a phase in the normal caregiving

trajectory (Schneewind, 1990; Nolan et al., 1996b). These

authors argue that it is possible to identify key transition

points in a caregiver's history and that these can serve as

markers for the type of care and support which will be

most helpful to carers at a particular point in time.

Nolan et al. (1996a) suggest that it is during the nal

two transition stages that family carers are least well

served by professional services. `Reaching the end' is the

stage during which carers recognize that they can no

longer continue in their current role. Although this

realization may occur over a prolonged period, nal

decisions are usually precipitated by some form of health-

related crisis (Victor, 1997) so that a nursing home place

often has to be selected rapidly, usually against a

background of pressure to vacate an acute hospital bed

(Victor, 1997; Cotter et al., 1998). This often leaves little

time for carers to identify a suitable home and establish

relationships with staff. `Reaching the end' does not

usually mark the end of caregiving and often involves

establishing new caring roles. This is where the phase of

establishing a `new beginning' is entered, one of the key

tasks of which is to negotiate these new caregiving roles.

This is known to be a particularly difcult period for

family carers, with potential stress being exacerbated by

the fact that after several years of being an `expert' in the

care of their relatives, carers are now `relegated to the role

of visitor' (Buckwalter & Hall, 1987), lose their sense of

being in control (Pratt et al., 1987) and frequently feel

alone and unrecognized (Pillemer et al., 1998). Ambivalent

emotional responses to placement can be heightened

subsequent to admission so that feelings of guilt and

failure are commonplace (Bloomeld, 1986; Buckwalter &

Hall, 1987; Pratt et al., 1987; Woods & MacMillan, 1992;

Ross et al., 1993; Kammer, 1994; Aneshensel et al., 1995;

Gladstone, 1995). To compound matters family carers are

often faced with a host of uncertainties, such as how often

to visit the home; how much help to provide; how to

initiate relationships with staff; how to sustain their

relationship with their relative; and how to reclaim their

role and identity (Aneshensel et al., 1995). Dellasega &

Mastrian (1995) suggest that role redenition is a crucial

task for carers following placement of a relative in care and

Kellet (1996), in an Australian study, identied four

themes that encapsulate the way families seek to maintain

a sense of attachment to their relative. These were:

engaged involvement to reduce role loss and createnew ways of caring;

worth ensuring that their specialized knowledge of theolder person is used as a basis for planning quality care;

concern about how to negotiate boundaries betweenthemselves and staff in the home;

continuity how to remain involved and continue toshare a fruitful relationship with the older person.

The role of relatives following placement

Similar themes to the above can be identied in much of

the literature relating to the involvement of relatives post-

placement. Difculties in replacing caregiving and a sense

of role loss have been described on a number of occasions,

and have been recognized for at least 15 years (Robinson &

Thorne, 1984; Ritchie & Ledesert, 1992; Zarit & Whit-

lach, 1993; Aneshensel et al., 1995; Dellasega & Mastrian,

1995; Gladstone, 1995). Furthermore, carers' sense of

ownership of expert knowledge and their desire to convey

this to staff as a basis for care planning is increasingly

apparent (Robinson & Thorne, 1984; Bloomeld, 1986;

Bowers, 1988; Ross et al., 1993; Pillemer et al., 1998),

with perhaps the most complete account of differing types

of knowledge and care being provided by Bowers (1988).

She suggested that carers see one of their main roles as

being to monitor the quality of care that their relative

receives. This requires achieving a balance between the

technical aspects of care, largely seen as the province of

staff, and the personal, biographical knowledge of the

carer. Carers expect staff actively to seek such knowledge,

for example, regarding the older person's likes and

dislikes, hopes and aspirations, and to incorporate this

into their care planning. It is this blending of technical and

biographical knowledge that is the primary aim of

`preservative' care, which is intended to maintain the

dignity and self-esteem of the older person.

The notion that carers monitor the quality of care

received from formal services has been described a

number of times prior to entry to care (Twigg & Atkin,

1994; Nolan et al., 1996a) and it is quite apparent that this

remains a key role following admission, with concern over

quality of care being one of the main anxieties carers

report (Ritchie & Ledesert, 1992; Woods & MacMillan,

1992; Gladstone, 1995; Ehrenfeld et al., 1997).

Relationships between relatives and staff

The above combination of potential stressors, but also the

positive contribution that carers can make, suggests that

attention to the needs of family carers following placement

724 M. Nolan and C. Dellasega

1999 Blackwell Science Ltd, Journal of Clinical Nursing, 8, 723730

is an area of practice that merits attention. Unfortunately

the literature indicates that interactions between staff and

carers are often far from ideal, and indeed can be a source

of considerable conict, especially when families are still

struggling to deal with the stress of placement (Drysdale

et al., 1993). Historically relatives who wish to play a

signicant role in care have tended to be seen as

interfering (Robinson & Thorne, 1984; Darbyshire,

1987) and as a result adversarial and competitive relation-

ships with staff can develop rapidly (Buckwalter & Hall,

1987; Ehrenfeld et al., 1997; Pillemer et al., 1998) so that

tensions between staff and family carers are another

frequent concern expressed by relatives (Pratt et al., 1987;

Woods & MacMillan, 1992; Gladstone, 1995; McDerment

et al., 1997). Therefore while the creation of positive

relationships between staff and relatives is a key factor in

reducing potential conict (McAuley et al., 1997; McDer-

ment et al., 1997) this aspect of care rarely receives

priority.

Wagner (1997) suggests that staff/relative relationships

are `overlooked, almost suppressed' and following a recent

major study McDerment et al. (1997) concluded that

there is a general lack of awareness of the signicance of

relatives and friends among staff, to the point that these

groups seem to be `occupying separate planets, each with

their own solar systems'. As a consequence there was little

understanding of family dynamics or the complex emo-

tions carers experience, nor was there evidence of an open

climate and a positive attitude towards relatives (McDer-

ment et al., 1997). Despite such obvious decits no

coherent policy for dealing with relatives emerged from

the study and attention was rarely turned to this aspect of

the home environment until something went wrong.

McDerment et al. (1997) argue that participation of

relatives in the life of a home is different from simply

visiting and that it requires a proactive and planned

approach based on:

recognition of the potentially competitive relationshipsbetween staff and visitors;

accessibility of staff; mutual clarication and understanding of roles and

expectations;

effective two-way communication.A number of authors have argued that nurses are in an

ideal position to facilitate more positive interactions

between staff and family carers (McLeod & Schwartz,

1992; Ross et al., 1993, 1997) with the suggestion being

that attention to the needs of families should be viewed as

an important and integral part of care (Pratt et al., 1987;

Aneshensel et al., 1995; Gladstone, 1995). In order to

maximize such opportunities it is advocated that contact

should be initiated prior to admission (Buckwalter & Hall,

1987; Ehrenfeld et al., 1997) with obtaining the views of

families forming a core component of the admission

process (Ross et al., 1997). In this context transition into

the home is a key phase in the adjustment process

(McDerment et al., 1997). Several dimensions of the

interface between home and family have been identied as

potentially fruitful areas for intervention by staff, includ-

ing:

Creating a welcoming environment, which encouragesand supports visiting, and working with carers to

maximize their involvement and facilitate a sense of

purpose (Pratt et al., 1987; Anderson et al., 1992;

Ritchie & Ledesert, 1992; Ross et al., 1993, 1997;

McDerment et al., 1997).

Recognizing and clarifying roles and responsibilities forboth groups (Buckwalter & Hall, 1987; Pratt et al., 1987;

Ross et al., 1993; McDerment et al., 1997).

Valuing and accessing the carer's knowledge andexpertise and utilizing this as an important component

of planning care (Buckwalter & Hall, 1987; Pratt et al.,

1987; Anderson et al., 1992; McLeod & Schwartz, 1992;

Ross et al., 1993, 1997; McDerment et al., 1997).

Helping carers to create a positive perception of theadmission, acknowledging their need to both receive and

provide help, dealing with emotional reactions and

being alert for signs of depression or lowered mood

among carers (Pratt et al., 1987; Ross et al., 1993, 1997;

Gladstone, 1995; McDerment et al., 1997).

The available research suggests that such proactive

interventions are rarely implemented and that there is

considerable scope for improvement in managing the

interface between relatives and staff in nursing homes.

This paper describes one component of a study which

explored the experiences of family carers before, during

and after placement of a relative in a nursing home. The

focus here is on carers' experiences after nursing home

entry.

Method

Data were gathered from family carers in the UK and US

using two formal instruments to conduct a detailed

structured interview. The instruments, which were

developed for the purpose of this study, were the Caregiver

Information Form (CIF) and the Placement Response

Scale (PRS). In addition to the structured components of

the data collection, a number of open-ended questions

were included in the interview.

The CIF asked participants to provide in-depth demo-

graphic and descriptive data about themselves and the


Care of older people Caring partnerships after nursing home placement 725

elderly person, along with information about the context

of the admission, for example: events precipitating

admission; the amount of information and advice received;

the degree of participation in decision-making and so on.

Four open-ended questions asked for the carer's feelings

about the admission (best and worst aspects), and how

things could have been improved throughout the process.

The second instrument used was the PRS, a 57-item

Likert scale that asks respondents to rate the stressfulness

and applicability of a series of events and responses related

to placement. Three separate subscales were incorporated

relating to events before, during, and after the admission.

For each item, respondents were asked to indicate how

much they agreed (strongly agree to strongly disagree on a

ve-point scale) and how stressful they found each item

(not stressful to extremely stressful).

The PRS was developed from an extensive review and

synthesis of existing literature on placement, as well as

considerable pilot and developmental work. A number of

key concepts provided the theoretical underpinning for

each subscale, including: crisis escalation; singularity

(making decisions alone); emotional turmoil (Dellasega &

Mastrian, 1995) and anticipation; participation; informa-

tion and exploration (Nolan et al., 1996b).

Based on these concepts an item pool was created to

form the basis of the PRS. The initial draft item pool was

sent to ve expert gerontological nurses for a consideration

of relevance and content validity. As a result of feedback a

number of items were deleted as being repetitive and it

was suggested that more items of a positive valance should

be included. The revised scale was then sent to a literacy

expert for consideration of the semantic structure and

interpretability of the scale. Subsequently, the procedures

suggested by Waltz et al. (1991) were followed and both

the revised PRS and the CIF were sent to 11 gerontolog-

ical experts, both clinical and academic, who were

provided with a denition of the purpose of the scales

and the key concepts they were intended to capture. Items

were rated on a three-point scale: )1, items denitely notrelevant; 0, unsure as to relevance; +1, items denitely

relevant. None of the items were seen as irrelevant or of

questionable relevance and therefore all were retained.

Finally, two family carers gave detailed comments as to

the relevance and ease of comprehension of the scales.

Statistical analysis of the scales using data from the

present study suggested excellent internal consistency

with a Cronbach's Alpha of 0.89 for the PRS `preadmis-

sion scale', 0.88 for the `during admission scale' and 0.90

for the `after admission scale'.

Following this extensive pilot and development work it

was necessary to identify a sample. Carers were initially

contacted about the study by key personnel in the study

site nursing homes. These were social workers in the US

and home owners or the senior nurse in the UK. These

personnel identied family members who were going

through the process of admitting an elderly member to the

nursing home, and briey explained the study. Interested

family members were then referred to research assistants

who had been trained in the study procedures. Consent

was obtained, and an in-person or telephone interview was

scheduled at the carers' convenience. The non-random

and opportunistic nature of the sample needs to be

recognized, as does the limits this imposes on generaliza-

tion.

Data were collected from 54 carers in the US and 48 in

the UK, which represented approximately 90% of those

approached. The majority of responses comprised xed-

format questions and these data were coded and loaded for

computer analysis using SPSS.PC. Answers to qualitative

questions were recorded verbatim and subjected to

detailed content analysis (Morse & Field, 1996).

Results

In terms of its composition the sample shared both

similarities and differences. The mean ages of carers and

older persons were virtually identical (carers US 60, UK

61; older people US 80, UK 82) as was the gender of

carers (US 20% male, 80% female; UK 21% male, 79%

female). Mean duration of caring was also very similar

(US 7.8 years, UK 7.5 years). On the other hand there

were signicant differences in the gender of the older

person (US 50% male, 50% female; UK 23% male, 77%

female: v2 7.97, 0.005). This was largely attributable tothe higher proportion of `other relatives' in the UK

sample, particularly aunts. This, however, is not typical

of family carers in the UK, the majority of whom are

spouses or children (Green, 1988). There was also a far

higher incidence of dementia in older people in the US

sample (US 51%, UK 19%: v2 11.38, 0.001). Thesevariations should be borne in mind when interpreting

the results, although analysis indicates that differences

in relationships and gender did not appear to play a

signicant role.

The post-placement subscale of the PRS contained 21

items addressing a range of issues primarily to do with

emotional reactions post-placement, maintenance of care-

giving roles and family relationships. These data reveal

large and sometimes highly signicant differences in a

number of key dimensions.

The ambivalent emotional reactions caused by placing a

relative in a nursing home have been described in the



literature a number of times and frequently involve

feelings of both relief and guilt. While such feelings are

not universal they are commonplace and frequently

enduring. Feelings of guilt were supported in the present

study with 5 out of 10 UK carers and 4 out of 10 US

carers feeling guilty that they were unable to continue

caring. Again consistent with the literature, the majority of

carers in both countries (UK 75%, US 66%: not

signicant, NS) were likely to report a sense of relief,

but those in the UK were less likely to feel that they had

let the older person down than carers in the US (UK 31%,

US 56%: v2 18.98, 0.005). Given this it is perhaps notsurprising that regret at admitting the older person was

more prevalent in the US sample (US 83%, UK 17%: v2

55.3, 0.00000), but paradoxically US carers were simul-

taneously more likely to feel positive about the admission

than carers in the UK (UK 56%, US 78%: v2 12.72,0.02). The majority of carers in both countries did,

however, consider that they had made the right decision

(UK 77%, US 88%: NS).

These variations were unaffected by gender or diagnosis

of dementia but the differences may, in part, be due to the

nature of the caring relationship. There was a signicantly

higher percentage of `other relatives' in the UK, whereas

carers in the US were almost exclusively close family (i.e.

spouses or children). Close relatives had a greater

perception of having let the older person down (NS)

and tended to regret the decision (0.05). These differen-

ces, while signicant, do not account for the substantially

greater variation by country. Clearly then, although there

is some confounding of the results by caring relationships,

genuine differences between the countries in emotional

responses to placement are apparent. The inuence of

needing to spend private funds for nursing home care may

also have had an impact on the US carers' responses.

If attention is turned to caregiving roles following

admission, other signicant differences emerge, which

again appear largely attributable to cultural factors. Such

factors relate to feelings of control, responsibility, contin-

ued involvement and time usage. Carers in the US appear

to nd it much more difcult to relinquish control of

caring (US 58%, UK 4%: v2 54.4, 0.00000) andresponsibility for caregiving (US 61%, UK 8%: v2 38.5,0.0000). These differences are unrelated to gender,

diagnosis or relationship. Similarly, difculties in replac-

ing caregiving (US 61%, UK 17%: v2 58.21, 0.00000) arefar more prevalent in the US, with again no such

differences being related to other potential explanatory

variables. Carers in both countries considered it important

to continue doing things for the older person (UK 87%,

US 87%: NS).

It seems then that the US carers face greater post-

placement conict, nding it difcult to relinquish control

and responsibility, perhaps, again, because of a more

`consumerist' orientation to care in the US. While both

samples see it as important to continue doing things for

the older person, carers in the UK are apparently quite

happy to pass the main responsibility and control with

staff. The latter set of circumstances would appear to be

far more conducive to establishing equitable relationships

with the home and to subsequent better adjustment among

carers, as previous work shows that carers who nd it

difcult to relinquish control have poorer long-term health

(Aneshensel et al., 1995; Ross et al., 1997).

On the other hand, both samples generally had a more

positive perception of homes post-placement (UK 52%,

US 60%: NS), felt comfortable visiting the home (UK

69%, US 68%: NS), and perceived the staff as helpful

(UK 86%, US 87%: NS). This may, in part, be due to the

reluctance of carers to complain post-placement and also

to the fact that, as attested in the literature, carers often

nd it difcult to establish new roles (Aneshensel et al.,

1995; Dellasega & Mastrian, 1995).

However, despite these largely positive perceptions of

the home and the staff, the qualitative data indicate that

carers still experience considerable difculties post-place-

ment. Many carers expressed feelings of loss, guilt and

concern over the quality of care, possibly indicating that

interactions between staff and relatives were maintained at

a polite but relatively supercial level. An indication of

some of these difculties is provided below:

I have lived with my mother all my life and it's the

terrible sense of loss now she is no longer there.

I just have this awful guilt. I don't know if it was the

best thing for my mother but I had no other

alternative.

I always think that other people will think you've

failed if you put your mother in a home and I

suppose I do deep down. But I couldn't carry on any

longer.

I miss looking after her, I'm lonely and miss her

company. I don't have a life with my wife anymore,

our life together is over.

I'm not able to see him as often as I'd like and I'm

worried that the home isn't right for him, lots of

them are confused and he isn't.

It's really terrible to see her in that state. She's not

being looked after or having her hair done as she

wants it.

The place isn't looking after her properly. Someone

has to feed her but she's just left to get on with it.

I don't think that's good enough.



Carers from the US expressed nearly identical regrets:

To part with my husband after 46 years of always

being together I feel as if I let him down, not taking

care of him in his time of need.

I feel I could have kept him at home a little longer had

I not just gone through a similar ordeal with my

mother.

I was reluctant but resigned.

The tensions in these sentiments are evident and

resonate closely with major themes identied in the

literature about ongoing emotional ambivalence, concerns

about the quality of care and the value accorded to

personal, biographical knowledge. Therefore, although the

quantitative data suggest a somewhat different picture in

the UK as compared to the US, it is clear that there is still

room for considerable improvement to current practice in

both countries. It is of interest that the US carers all had

the option of attending a support group specically for

family members after the placement had occurred. These

groups, which were professionally led, were voluntary, but

many respondents attended at least once, and identied

the interaction as very helpful once the placement had

occurred, suggesting that others might benet from the

same experience:

Get into a support group where you can meet

others with the same problems. Most friends and

family not living with the person cannot comprehend

what you are dealing with every day.

As much as you love the elderly person you must do

things to take care of yourself too. If you're gone,

then there's no one.

Discussion

It is important at this point to reiterate the caveats about

the nature of the sample and to recognize the limitations

these place both on generalizing from the results and on

drawing inferences about the extent of signicant

differences. Notwithstanding this, the results do suggest

some interesting points of contrast between the reactions

of carers to placement in the US and the UK which merit

further and more detailed study using more representative

samples.

However, despite variations, it is also apparent that

many experiences are shared and that the data from the

present study support and reinforce the major themes

identied in the literature.

In both countries, family members experienced regret

and ambivalence over their role in admitting an elder to

the nursing home. A transparent, proactive approach to

discussing how one plans for care during the later years is

needed to help families feel more condent of their

decisions. Similarly, once the decision has been made,

validation is extremely important. While in a previous

study this validation came from friends, staff in both acute

and long-term care facilities can promote an alliance with

families early on by verifying the `correctness of the

decision' (Dellasega & Mastrian, 1995). Thereafter, it is

certainly important that staff seek to create a welcoming

environment that supports and encourages carers to

become involved if they so desire. There also needs to

be clarication of mutual roles and responsibilities so that

carers' knowledge is sought when planning care and in

particular that carers' emotional reactions are recognized

and, where possible, addressed. In short, working with

carers to create caring partnerships should be seen as an

important and legitimate part of life in nursing homes.

The support group environment appears to be one

excellent milieu for accomplishing this.

Creating equitable relationships is, of course, a two-way

process and there is growing recognition that staff and

organizations have needs which must also be acknowl-

edged. This is often particularly relevant to care staff who

provide signicant amounts of direct support but can feel

that their contribution is not fully recognized. Many

family members are unaware of the different levels of care

offered in the nursing home setting, as well as how the

extended care facility differs from an acute hospital. This

may lead family members to develop unrealistic expecta-

tions of staff. Heiselman & Noelker (1991) for instance, in

a study of nursing assistants' perceptions of the respect

they receive from relatives, found that many did not feel

valued and were frequently accused of delivering poor care

by relatives. Such staff would like to be treated politely, to

be given respect for their competence, and to have the

relationships they have established with residents

acknowledged. As McDerment et al. (1997) point out,

staff are often working under considerable resource

constraints and there is a need to help relatives appreciate

what is attainable and realistic within the limitations

imposed by care in a group environment. Therefore,

interventions which focus only on the perceptions of

relatives are unlikely to be optimally effective (Pillemer

et al., 1998).

A number of studies have described efforts to improve

and enhance, in one way or another, staff/relative

relationships and involvement. These have ranged from

specic interventions aimed, for example, at helping

relatives communicate more effectively with residents

who have speech decits (Shulman & Mandel, 1988) or to

interact more effectively with residents with cognitive

impairment (Hansen et al., 1988), to programmes intended



to create greater cooperation between staff and families at

a more generic level. Anderson et al. (1992) for instance

designed a simple experiment conducted in two groups of

six homes in which one group (experimental) introduced a

system whereby staff actively sought biographical infor-

mation from family carers and used this as a basis for care

planning. Relatives were also encouraged to participate in

setting joint goals. In the other (control) group normal

practice was maintained. Evaluation suggested that in the

experimental group a number of benets were apparent

including: simpler and more obtainable care goals; greater

family involvement; reduced use of medication and more

individualized care. Benets also emerged for staff, who

reported less burnout and fatigue, improved attitudes

towards residents/relatives and increased job satisfaction.

In another example of a partnership approach between

staff and relatives Pillemer et al. (1998) outlined a

comprehensive training approach. This was based on

parallel, but initially separate, workshops for staff and

relatives where a number of issues were shared. The

evaluation suggested benets in three broad areas:

new insights into the needs of relatives/staff; changes in behaviour towards relatives/staff; observed changes in behaviour by relatives/staff.

Although the authors were positive about their results

they sounded a note of caution, highlighting the organi-

zational commitment that is needed so that staff can be

released from their duties to attend the workshops.

Furthermore, as new relatives arrive and staff turnover

results in differing staff groups there is a need to provide

the programme on a rolling basis. This has obvious

implications in an environment where resources are

already constrained.

As Aneshensel et al. (1995) point out, it is important to

recognize that not all families experience difculties with

nursing home staff. However, recent work, including the

present study, would suggest that a considerable propor-

tion do (McDerment et al., 1997). As a consequence of the

limited attention that staff/relative relationships receive

there is a tendency to adopt entrenched positions which

characterize one group as `impossible relatives' and the

other as `incompetent staff' (McDerment et al., 1997).

More concerted efforts to address many of the issues

identied in the literature have the potential not only to

create more equitable relationships but also to inuence

the longer term adjustment and health of family carers,

with a number of studies suggesting that those carers who

continue to provide considerable care nd it more difcult

to create new roles and new beginnings and experience

poorer long-term emotional health and adjustment

(Aneshensel et al., 1995; Gladstone, 1995; Ross et al.,

1997). This is an area in which nurses can make a

signicant difference. To do so, however, there must be

adequate stafng, training and staff support mechanisms

(Nolan & Keady, 1996). There also has to be recognition

of the potential cost implications of improving relation-

ships between family and formal carers if the sort of

rolling programme advocated by Pillemer et al. (1998) is

to be introduced. In the UK at least this should be

factored into costing equations and resources allocated to

Social Service Department's accounting.

Conclusion

Global ageing has created a common situation in devel-

oped countries, where family members must increasingly

make difcult decisions about long-term care for their

elderly loved ones. Whether these decisions are made in

isolation or collaboratively, the results of having to make

such choices create distress that may persist long after the

admission has occurred. As resources for long-term care

must be increasingly stretched to meet the needs of a

growing frail older population, nancial issues will become

relevant for families in both private and socialized

healthcare systems. This is an area that requires further

investigation.

Nurses and other healthcare providers must work

together to meet the needs of older adults as they move

through the healthcare system. An important component

of addressing such needs is recognizing the vital role

played by family members and friends. Research and

testing of interventions is needed to provide support

during all phases of the placement process: from the point

of making a decision about care alternatives, through the

task of selecting a facility, and then nally, as they forge a

new relationship with not only the elder but the staff who

have become part of his/her life.

References

Anderson K.S.H., Hobson A., Steiner P. & Rodle B. (1992) Patients

with dementia: involving families to maximise nursing care.

Journal of Gerontological Nursing 18(7), 1925.

Aneshensel C.S., Pearly L.I., Mullan J.T., Zarit S.U. & Whitlach

C.J. (1995) Proles in Caregiving: The Unexpected Career.

Academic Press, San Diego.

Bloomeld K. (1986) Ask the family. Nursing Times 82(11), 2830.

Bowers B.J. (1988) Family perceptions of care in a nursing home.

Gerontologist 28(3), 361367.

Buckwalter K.C. & Hall G.R. (1987) Families of the institution-

alised older adult: a neglected resource. In Ageing and Health and

Family: Long-Term Care (ed. Brubaker T.H.). Sage, Newbury

Park, pp. 176196.



Cotter A., Meyer J. & Roberts S. (1998) Humanity or bureaucracy:

the transition from hospital to long-term residential care. Nursing

Times Research 3(4), 247256.

Darbyshire P. (1987) Ask the family. Nursing Times 83(37), 2325.

Dellasega C. & Mastrian K. (1995) The process and consequences of

institutionalising an elder. Western Journal of Nursing Research

17(2), 123140.

Dellasega C. & Nolan M.R. (1997) Admission to care: facilitating

role transition amongst family carers. Journal of Clinical Nursing

6, 443451.

Drysdale A., Nelson C. & Wineman N. (1993) Families need help

too: group treatment for families of nursing home residents.

Clinical Nurse Specialist 7(3), 130134.

Ehrenfeld M., Bergman R. & Alpert R. (1997) Family and staff

involvement in tending dementia patients in nursing homes.

Journal of Clinical Nursing 6, 505506.

Gladstone J.W. (1995) Elderly named persons living in long-term

care institutions: a qualitative analysis of feelings. Ageing and

Society 15, 493513.

Green H. (1988) Informal carers. General Household Survey 1985.

GHS No. 15, Suppl. 16. OPCS, London.

Hansen S.S., Patterson M.A. & Wilson R.W. (1988) Family

involvement in a dementia unit: the residents enrichment and

activity program. Gerontologist 28(4), 508510.

Heiselman T. & Noelker L.S. (1991) Enhancing mutual respect

among nursing assistants, residents and residents families.

Gerontologist 31(4), 552555.

Kammer C. (1994) Stress and coping of family members responsible

for nursing home placement. Research in Nursing and Health 17,

8998.

Kellet U.M. (1996) Caring in nursing homes: the family perspec-

tive. Geriaction 14(4), 1823.

Lewis J. & Meredith B. (1989) Contested territory in informal care.

In Growing Old in the Twentieth Century (ed. Jeffreys M.).

Routledge, London.

McAuley W.J., Travis S.S. & Safewright M.P. (1997) Personal

accounts of the nursing home search and selection process.

Qualitative Health Research 7(2), 236254.

McDerment L., Ackroyd J., Tealer R. & Sutton J. (1997) As others

see us: a study of relationships in homes for older people. Relatives

Association, London.

MacDonald L., Higgs P., MacDonald J., Godfrey E. & Ward M.

(1996) Carers reections on nursing homes and NHS long-stay

care for elderly patients. Health and Social Care in the Community

4(5), 264270.

McLeod M. & Schwartz F.E. (1992) Working together: collabora-

tion among healthcare workers and families in long-term care.

Journal of Gerontological Nursing 18(8), 2630.

Morse J.M. & Field P.A. (1996) Nursing Research: The Application of

Qualitative Approaches, 2nd edn. Chapman & Hall, London.

Nolan M.R. & Keady J. (1996) Training for long term care: the road

to better quality. Reviews in Clinical Gerontology 6, 333342.

Nolan M.R., Grant G. & Keady J. (1996a) Understanding Family

Care: a Multidimensional Model of Caring and Coping. Open

University Press, Buckingham.

Nolan M.R., Walker G., Nolan J. et al. (1996b) Entry to care:

positive choice or fait accompli? Developing a more proactive

nursing response to the needs of older people and their carers.

Journal of Advanced Nursing 24, 265274.

Pillemer K., Hegerman C., Albright B. & Henderson C. (1998)

Building bridges between families and nursing home staff: the

Partners in Caregiving Programme. Gerontologist 38(4), 499503.

Pratt C., Schmall V., Wright S. & Hare J. (1987) The forgotten

client: family caregivers to institutionalised dementia patients. In

Ageing, Health and Family: Long-Term Care (ed. Brubaker T.H.).

Sage, Newbury Park, pp. 197213.

Ritchie K. & Ledesert B. (1992) The families of the institutionalised

elderly: a preliminary study of stress in a French caregiver

population. International Journal of Geriatric Psychiatry 7, 514.

Robinson C.A. & Thorne S. (1984) Strengthening family interfer-

ence. Journal of Advanced Nursing 9, 597602.

Ross H.M., Rosenthal C.J. & Dawson P.G. (1993) Spousal

caregiving following institutionalisation: the experience of elderly

wives. Journal of Advanced Nursing 18, 15311539.

Ross H.M., Rosenthal C.J. & Dawson P. (1997) Spousal caregiving

in the residential setting visiting. Journal of Clinical Nursing 6,

473483.

Rowles G. & High D. (1996) Individualizing care: family roles in

nursing home decision-making. Journal of Gerontologic Nursing

22(3), 2025.

Schneewind E.H. (1990) The reaction of the family to the

institutionalization of an elderly member: factors inuencing

adjustment and suggestions for easing the transition to a new life

phase. Journal of Gerontological Social Work 15(12), 121136.

Shulman M.D. & Mandel E. (1988) Communication training of

relatives and friends of institutional elderly persons. Gerontologist

28(6), 797799.

Twigg J. & Atkin K. (1994) Carers Perceived: Policy and Practice in

Informal Care. Open University Press, Buckingham.

Victor C.R. (1997) Community Care and Older People. Stanley

Thorne (Publisher), Cheltenham.

Wagner Lady (1997) Preface in As Others See Us: a Study of

Relationships in Homes for Older People. (eds McDerment L.,

Ackroyd J., Tealer R. & Sutton J.). Relatives Association,

London.

Waltz C.F., Strichland O.L. & Lenz E.R. (1991) Measurement in

Nursing Research. F.A. Davies, Philadelphia.

Woods R.T. & MacMillan M. (1992) Home at last: impact of a

local `homely' cared for dementia sufferers on their relatives. Paper

given at BSG Annual Conference, University of Kent, Canter-

bury.

Zarit S. & Whitlach C. (1993) The effects of placement in nursing

homes on family caregivers: short and long term consequences.

Irish Journal of Psychology 14(1), 2537.



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