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How does involvement of a hospice nurse specialist impact on the experience on informal caring in palliative care? Perspectives of middle-aged partners bereaved through cancer R. BORLAND, MSC NURSING, BSC (HONS) SPECIALIST PRACTICE (PALLIATIVE CARE), RN, ONCOLOGY AND PALLIATIVE CARE FACILITATOR, Nursing Home Support Team, Belfast Health and Social Care Trust, Belfast, M. GLACKIN, MED, D.A.S.E. RN, LECTURER, School of Nursing and Midwifery, Queen’s University Belfast, Medical Biology Centre, Belfast, UK, & J. JORDAN, DPHIL, BA (HONS) SOCIAL ANTHROPOLOGY, INDEPENDENT RESEARCHER

BORLAND R., GLACKIN M., JORDAN J. (2014) European Journal of Cancer Care 23, 701–711 How does involvement of a hospice nurse specialist impact on the experience on informal caring in palliative care? Perspectives of middle-aged partners bereaved through cancer The aim of this study was to retrospectively explore partners’ understandings and experiences in relation to caring for a loved one with a terminal illness, with a particular focus on the role of the hospice nurse specialist (HNS). Participants were purposively sampled and recruited through HNS gatekeepers. Seven middle-aged, bereaved partners participated in semi-structured, qualitative interviews. The interviews were audio recorded and transcribed verbatim and data were analysed using thematic content analysis. Five main themes emerged regarding the impact of the HNS on informal caring: ‘the ambivalence of caring’, ‘the HNS as a “confidante” in caring’, ‘the HNS as a “champion” in support’, ‘the work of the HNS – an unseen benefit’ and ‘being prepared for death and bereavement’. Findings from this study offer new insights into how involvement of a HNS impacts on the ability of carers to perform their role as an informal caregiver. Results highlight a crucial need for carers to have a clear understanding of all aspects of the HNS role so that full benefit is derived from their input. Recruitment of experienced and knowledgeable nurses is paramount, but equally important for carers is the supportive aspect of the role for which nurses need to demonstrate excellent communication skills and an intuitive, caring approach.

Keywords: bereavement, carers, hospice nurse specialist, supportive care.

INTRODUCTION To date, research focusing on specialist palliative care nursing services has prioritised description of the nursing role as well as examination of patient and carer

Correspondence address: Marie Glackin, School of Nursing and Midwifery, Queen’s University Belfast, Medical Biology Centre, 97 Lisburn Road, Belfast BT9 &BL, UK (e-mail: [email protected]). Funding: This study was funded as part of an MSc Student Bursary by the Northern Ireland Research and Development Office.

Accepted 18 December 2013 DOI: 10.1111/ecc.12183 European Journal of Cancer Care, 2014, 23, 701–711

© 2014 John Wiley & Sons Ltd

satisfaction (McLoughlin 2002; Lewis & Anthony 2007). There has been little consideration of how and in what specific ways interventions by specialist nurses impact on the experience of informal caring. The majority of carers willingly embrace this role, viewing it as an expression of their love, duty and respect for their loved one (Broback & Bertero 2003; Buckner & Yeandle 2007). Not only do most terminally ill patients desire to be cared for at home (Collins 2004; King et al. 2004) but carers are strongly motivated to fulfil this wish (McLoughlin 2002). However, the cost to their physical, emotional, social and spiritual well-being can be considerable (Murray et al. 2003; Andershed 2006).

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This study aimed to overcome this identified gap in the research literature by exploring how the role played by specialist palliative care nurses impacts on lay caring. Accordingly, carers were provided with an opportunity to discuss their experience of caring for a dying loved one at home, with a particular focus on the involvement of a hospice nurse specialist (HNS). A systematic review of the literature (Andershed 2006), addressing the needs of relatives in end-of-life care, found that most carers find themselves in unknown territory, with their new role constituting an overwhelmingly intimidating experience. Worries about a lack of knowledge concerning the disease itself, future developments and the responsibility of monitoring pain and other distressing symptoms (Osse et al. 2006; Bee et al. 2008) are, however, typically accompanied by a strong sense of reward, based on a carer’s perceptions of fulfilling their responsibilities as well as their loved one’s wishes (Wong & Ussher 2009). Notwithstanding their powerful incentive to fulfil the caring role, the physical and emotional toll on carers can be substantial. Lack of sleep, as well as generalised burnout (Andershed 2006), are compounded by the strain of trying to come to terms with their loved one’s illness and the palliative nature of the disease (Broback & Bertero 2003). Consequently, many carers are propelled into a prolonged state of chronic sorrow in which they are always fearful, constantly alert and feeling unprepared for, and uninformed about, likely future developments (Murray et al. 2003; Runciman 2003). Socially, carers describe loneliness and isolation, as previous leisure time either disappears or is greatly reduced (Zabalegui et al. 2008). Concerns about leaving their loved one for any length of time are accompanied by feelings of guilt about wanting time away to pursue ‘normal’ activities (Broback & Bertero 2003). Additional guilt can result from their resentment that attention is being focused entirely on their loved one, with little or no acknowledgement of their own coping burden and requirements (Runciman 2003). The need for many carers to either reduce or stop work altogether in order to perform their caring role induces further isolation and loss of the self-esteem, in part through the removal of the role identity associated with employment (Haley 2003). As the above evidence suggests, the unrelenting nature of the provision of informal palliative care in the home results in constant contact between carers and their loved ones. This potentially stressful environment challenges and stretches their relationship as it alters previously accepted roles. Male carers, who tend to see themselves as the protector, may struggle with being 702

unable to make the illness go away, so that the transition to carer and watcher proves particularly emotionally difficult (McLoughlin 2002). Pre-bereavement experiences have been shown to correlate with those post-death, so that the more positive the care and death of their loved one is perceived to have been, the better carers’ coping in bereavement (Parkes 1996; Main 2002; Wong & Ussher 2009). Spousal carers are considered to be most vulnerable to maladjustment in bereavement due to the degree to which they can devote themselves to the care of their partner, often ignoring their own health (Haley 2003; Ferrario et al. 2004).

Support in the caring role Carers’ anxieties over the ‘trial and error’ development of care-related knowledge and skills (Armes & Addington-Hall 2003; Broback & Bertero 2003) help explain the results of two systematic reviews (Andershed 2006; Bee et al. 2008), both of which posited a clear relationship between the provision of knowledge and improved functioning as a carer, including in relation to enhanced feelings of control, ability to cope and to make informed choices. Conversely, the same reviews demonstrated how carers in receipt of minimal information are more anxious, feel more isolated, disillusioned, frustrated and, taken overall, have greater difficulty coming to terms with and coping with their role as carer. Indeed, for some carers, an awareness of their lack of relevant skills, particularly around the provision of effective symptom control, results in a preference for institutional death (Brazil et al. 2005). Felt vulnerability increases during out of regular working hours, as anxieties about coping in an emergency intensify (Exley & Tyler 2005; Bee et al. 2008).

The role of the specialist palliative care nurse Despite the fact that specialist palliative care nursing in the UK has been established for over 30 years, McLoughlin (2002) found that patients, carers and professionals still lack understanding of the service, often not knowing, or having misconceptions about, what to expect. Negative perceptions are related to underlying assumptions, including: an association of the nursing role with death and dying (Beaver et al. 1999; Chapple et al. 2005); that an overly large body of professionals will be involved in care (Corner et al. 2003); and, services are directed exclusively at care of the patient (McLoughlin 2002). On the whole, however, research has confirmed that specialist palliative care nurses are highly valued by those © 2014 John Wiley & Sons Ltd

Impact of HNS role on bereaved carers

with a terminal illness and their families (Jarrett et al. 1999; Collins 2004; Chapple et al. 2005). McLoughlin (2002) found that patients and carers were generally very willing to accept their involvement in, and expertise concerning, care, with the majority claiming an increased quality of life as a result. One of the very few studies to explore in-depth the issue of carer experiences of specialist nursing services (Corner et al. 2003) showed how patients and carers positively differentiated between the approach to care adopted by Macmillan nurses and that of other nurses and healthcare professionals. The former were perceived to spend more time, provide enhanced comfort and promote a sense of confidence and security. Other research has shown the value placed on their advice concerning financial and other entitlements as well as help in facilitating/co-ordinating home care (Chapple et al. 2005; Wong & Ussher 2009). Conversely, families lacking the involvement of specialist nursing services have been shown to provide inferior symptom control, and to lack appropriate support and information. These carers see themselves as having no one to talk to and, consequently, feel isolated (Ingleton et al. 2004). Although useful in demonstrating the place and understandings of specialist palliative care nurses, the above studies fall short of identifying the processes through which observed outcomes, attributed to these nurses, are achieved. Consequently, the aim of the study reported here was to retrospectively explore partners’ experiences of caring for a loved one with a terminal illness, with a particular focus on the role of the HNS as this was understood to have impacted on these experiences.

Sampling and recruitment Participants were purposively sampled, enabling the involvement of individuals with a unique insight into caring for a dying loved one at home (Ritchie & Lewis 2006). A total of seven participants were involved, considered acceptable in the face of recruitment difficulties and time restraints. These seven participants varied by age, gender and length of time of caring. These data are summarised in Table 1. Hospice nurse specialists acted as ‘gatekeepers’, only referring bereaved carers they considered sufficiently physically and emotionally robust to participate. Once HNS colleagues had identified potential participants, they were contacted by telephone to ask if they wished to receive information about the study, and agree to their name and address being passed to the researcher. As and when this initial consent was given, the researcher posted a written letter of invitation, which included an ‘opt out’ form. In the absence of receiving this opt out form after 7 days from receipt of the initial letter of invitation, a Participant Information Sheet along with a written consent form were posted out, again including an ‘opt out’ option. If the ‘opt out’ option was not returned within a further 7 days, potential participants were contacted by telephone. During this conversation, further information about the study was provided, questions from potential participants were answered and, if appropriate, a date and time for interview was arranged. As HNS colleagues struggled to obtain sufficient numbers of potential participants within the target age range, the upper limit was increased to 70 years of age. Table 2 sets out the inclusion and exclusion criteria.

METHODOLOGY An interpretative research design, involving the use of qualitative methods of data collection and analysis, was employed.

Data collection Data were collected using semi-structured interviews. A core topic guide ensured that key areas of research interest

Table 1. Demographic data for carers

Code

Gender

Age

Main carer

A1 A2 A3

Male Male Male

67 68 61

Wife Wife Wife

A4 B1

Male Female

50 50

Wife Husband

A5 A6

Male Male

60 57

Wife Wife

Diagnosis

Treatments

Time from diagnosis to death

Lung cancer Oral cancer Bowel cancer with liver metastases Throat cancer Unknown primary with Bony metastases Malignant melanoma Pancreatic cancer

Chemotherapy and radiotherapy No treatment Surgery and chemotherapy

2.5 years 5 months 8 months

Home NI Hospice Home

Surgery and radiotherapy Chemotherapy and radiotherapy

1.5 years 1 year 4 months 3 months 6 months

NI Hospice NI Hospice

Radiotherapy No treatment

Place of death

NI Hospice Home

NI, Northern Ireland.


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Table 2. Inclusion and exclusion criteria Inclusion criteria

1. Aged 35–65 years – to reflect the UK national carer age profile, which peaks at 45–59 years (Dahlberg et al. 2007) 2. Bereaved for a minimum of 6 and a maximum of 12 months – to ensure participants were not in the initial, emotionally raw period post bereavement, while enhancing the possibility for good recall of relevant experiences; bereaved partners were selected as they were likely to have more time available to undertake an interview, compared with active carers 3. Primary responsibility, as a ‘partner’, for the informal care of a person with a terminal illness – a partner was defined as ‘the person you are married to or are living with as if you were married to them [Cambridge Advanced Learners Dictionary (2008)] 4. Resident in one Trust in Northern Ireland

Exclusion criteria

1. Known to the hospice nurse specialist for less than 3 months – to ensure that participants had sufficient time to become fully aware the role of the HNS 2. Been on the researcher’s own caseload – to minimise risk of bias 3. Had a cognitive impairment – to ensure informed consent and clarity in understanding and answering of the questions

HNS, hospice nurse specialist.

were discussed, while allowing participants the opportunity to raise issues they considered relevant (Polit & Beck 2004). Following Denscombe (2005), face-to-face interviews were employed to facilitate the collection of the very personal and potentially painful and/or sensitive issues associated with caring for a dying loved one. With the consent of the participants, interviews were audio recorded. Field notes were written immediately after each interview; these recorded relevant details learnt through watching participants as well as listening to them.

Data analysis An iterative process was employed, whereby initial data analysis was undertaken after the first two interviews were completed. This early analysis was used to ask questions of the data, make initial interpretations and guide the conduct of subsequent interviews (Pope et al. 2000; Donovan & Sanders 2005). Thereafter, interview data were subjected to thematic content analysis, involving the following process. After repeatedly listening to the audio recordings of each interview, RB transcribed each verbatim, reading the transcripts on numerous occasions in order to foster a close familiarity with their content (Braun & Clarke 2006). Working systematically through the entire data set allowed early codes to be assigned to specific segments of narrative, which identified interesting features or particular issues. Through subsequent comparison of the data within and across transcripts, these early codes were progressively collapsed into higherorder themes, as similarities or overlaps in their meaning were identified. These themes were refined within a final analytical framework as the ‘essence’ of each was clarified, and relationships between them confirmed (Braun & Clarke 2006). Reliability of analysis was further enhanced through the sharing of a number of transcripts between 704

members of the research team, enabling the full possibilities of analytical insight to be achieved (Polit & Beck 2004; Green & Thorogood 2009). A number of measures were developed to deal with potential emotional distress. Participants were reminded that they could stop the interview at any time or decline to answer any questions. During the interview participants’ emotional well-being was monitored and they were advised that they could have a family member present to provide support. Finally, participants were offered follow-up support from the Northern Ireland hospice multi-professional team. Full ethical approval and research governance approval was given by all relevant bodies.

FINDINGS Five themes were identified: ‘the ambivalence of caring’, ‘the HNS as a “confidante” in caring’, ‘the HNS as a “champion” in support’, ‘the work of the HNS – an unseen benefit’ and ‘being prepared for death and bereavement’.

The ambivalence of caring Participants described the very stressful nature and ‘awfulness’ of the situation they found themselves in, such that they understood the entirety of their lives to have been profoundly and irrevocably changed. Our whole lives changed. It was like entering a new world. Nothing normal continued. (A6) They highlighted the relentless nature of their caring role, typically involving the provision of care from early morning until late at night, and the physical exhaustion that resulted. In some cases, this exhaustion, coupled with the frequent visits made by various professionals involved © 2014 John Wiley & Sons Ltd


in their loved one’s care, meant that participants no longer saw their home as a place of rest and ‘escape’. Rather, it became an environment in which they were unable to relax and in which the agenda was largely set by others. Breakfast time, I was up at the crack of dawn. Every day was busy. I had to make sure that she got her tablets on time . . . and she needed to eat in between. I had to sit on the toilet to help her in and out of the bath and then dry her. I had to dress her and undress her. She was up two or three times during the night. (B1) The house wasn’t your own ‘cause they (the district nurses) were in all day long, so they were, But he wouldn’t let me send for the nurse or anything through the night. He wouldn’t let me annoy them. Aye, I never got any sleep. I still don’t think I sleep right now. (A2) At the same time, participants stressed their commitment to caring for their loved one, drawing on their love as a source of inspiration and dedication. Furthermore, they highlighted the personal satisfaction realised from being able to provide such care, despite its toll on their physical health and their realisation that it could only ever be palliative in nature. Their sense of reward stemmed from being needed as well as from the actual provision of informal care and was especially evident in cases where the participant had been able to facilitate their loved one’s wish to die at home. Love has a lot to do with it, as in, she would do it for me, so I’m definitely doing it for her. She said to me, after we found out, ‘I need you more than ever now’. I would have done anything. (B1) . . . (the hospital). It was far too busy. They knew his diagnosis but they didn’t have time for the likes of him . . . he just wanted home. He was always content with me, he felt secure with me . . . there’s a security for people when they’re at home. (A3)

The HNS as a ‘confidante’ in caring

For many, witnessing their loved one fade away before their eyes, while feeling incapable of preventing this decline, was agonising. He was just fading away to nothing. I lifted the blankets one night and I nearly died when I saw his leg, it was just like my finger. It’s just sitting there and you’re watching him . . . you could have cried your eyes out. (A2) Integral to this caring ‘burden’ was a sense of having to keep going for the sake of their loved one, neither wanting to let them down in terms of providing ‘round the clock’ care nor wanting to let them discover the extent of their tiredness and emotional distress. I had to keep strong to keep him up. I found he would feed off me. If I kept up and bright, it helped him. I knew that. I was his support. You know, I never broke down in front of him. (A3) Although many of the participants had family and friends available to provide emotional support, their accounts portray a clear sense of being unwilling and/or unable to confide in those closest to them. Accordingly, they appreciated the involvement of the HNS in quite profound ways, such that they came to think of a meaningful relationship with her/him as vital to their well-being. An important aspect of this relationship was participants’ developing acceptance of the HNS’ active involvement in their own and their loved one’s lives. This acceptance was based on a number of factors including: the calm and empathetic approach adopted by the HNS; the latter’s acknowledgement, sometimes prioritisation, of the carers’ needs; and, their expert advice in relation to, as well as care of, their loved one. There was just something about her. Just so gentle. I don’t know . . . I just liked her right away. She was a saint, just lovely that girl. (A2) I stood there one day crying and she stood up with me and talked about our little dog who had died. She said ‘you haven’t even got over Sam’s (the dog’s) death yet and here we are talking about . . . (the patient) . . . and she was right. (A5)

Carers repeatedly made reference to the huge emotional weight of caring for their terminally ill partner. Many expressed persistent anxiety, fearful of the uncertainty of what lay ahead, and awareness that no matter what happened they would have to be able to cope.

More particularly, participants outlined an awareness of the HNS as possessing expert skills in sensing the needs of both their loved ones and themselves.

It was very, very hard. It was very stressful, frightening. There was a fear in you as well, frightened of what you would have to face and you knew you would have to face it. (A3)

I say that they are very good at picking up on ‘wee’ things. They don’t just see a person, they see what’s in their head . . . They can tell if you’re not in good form, they can just sense that . . . I thought if they can sense


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things that’s good ‘cause if she (the patient) needs something they can help her. (B1)

home. I couldn’t enjoy myself ‘cause I always wanted back to see that he was alright. (A2)

(The HNS) told me I needed counselling. I thought to myself ‘you’re wasting your time, it’s . . . (the patient) who’s sick. . . . you know I was totally wrong ‘cause I did need help after he died. I think she had already picked up that I was in denial. (A5)

In terms of practical support from friends and family, this varied considerably. Family was most closely involved, although, even here, there were felt gaps.

This appreciation of the particular skills and approach of the HNS meant that participants became increasingly more confident and at ease discussing their concerns. The presence of an empathetic confidante who could also provide practical support was a significant source of comfort, reassurance and emotional well-being. I always took comfort from them coming out even if they told me nothing I didn’t already know. I just liked them to come. I don’t know . . . It was reassuring or something, it was reassuring, aye. Just being able to talk. You could ask them and they would give you the answer. (A6) Participants came to see the HNS as someone who genuinely cared about them. Ultimately, this unique approach was effective in helping them to fulfil their caring role more effectively. They always asked about me too. Sometimes I would come in here and I’d leave them (the patient and the HNS) in there ‘cause maybe she needed to talk to her. . . . but they always came in here and asked how I was . . . they always made a point of that. . . . then I knew somebody cared . . . and that made a difference. (B1) The HNS as a ‘champion’ in support Participants talked regularly of their experience of social isolation. This isolation was, in a large part, due to the rarity with which they were able to take a break from caring. Even when such breaks were possible, the associated guilt and felt pressure to return to their loved one, rendered them of little or no value. This sense of never being free from caring encouraged a sense of having no life of their own and of having no ‘escape’ from the situation. When I went out he hated being left on his own and he used to say ‘will you be long?’ He used to phone me. You couldn’t stay out long, you had to be back right and quick. Maybe he was frightened being left on his own. (A1) I wasn’t able to go anywhere. I was just stuck in the house. Well, I wouldn’t have left him anyway. I just had no life! Even if I went to see my niece, I had to get 706

There was always somebody here. The girls were here every day and the two son-in-laws. They didn’t have to do things . . . just being here. (B1) Sometimes the children, they didn’t realise he was as ill as he was and my daughter would say to me ‘Mum, that’s ridiculous’ as I would be standing over him saying ‘would you like this or that?’ and he’s say ‘I don’t know’. (A3) Professional support came from a number of sources. District nurses were talked about very positively; their role was associated most closely with the provision of patient care, as well as the administration of, and advice on, medications. The district nurses were very good to him. They came every other day to do his dressings. (A4) The district nurses came out over the last two weeks to give him his medication because he was very restless and in a lot of pain. They came out as soon as we phoned them, sometimes three times a night. (A1) Other professional carers were mentioned less frequently. Occupational therapists and physiotherapists were discussed primarily in the context of providing expert advice as well as specialist equipment, and GPs as providing practical support, such as referral to hospice and other services. Significantly, all participants who had been in employment prior to their loved one becoming ill had stopped work to provide full-time care. Although all were happy to have done so, inevitably, the consequent loss of income added to the ‘burden’ of caring by introducing additional financial worries. In this context, support from the HNS in, for example, providing advice concerning available financial entitlements, as well as accessing relevant application forms and other documentation, was acknowledged by participants to be vital in reducing their worries over personal finances, both short and longer term. It was concerning me the longer it went on ‘cause I kept thinking I really need to go back to work . . . and then I thought I couldn’t go back to work . . . I was thinking how long can I go on . . . But then we got DLA so it was alright . . . and then the Hospice nurse got money for oil and stuff like that. (A6) © 2014 John Wiley & Sons Ltd


As the above quotes suggest, participants talked about various professional carers in relation to their care of their loved one. In contradistinction, the HNS was discussed in terms of support provided for their loved one as well as themselves as carers. Significantly, the latter support was understood to stand apart from that provided by other professionals. The contribution made by the HNS in terms of directly supporting participants was considered to be invaluable to their sense of personal well-being and consequent ability to cope in their caring role. You have no idea what the hospice did for me, you honestly have no idea the support that they gave me. I think it was because they have turned out to be friends to me. (A5) I mean the district nurses are fine but they have a wide range of things to deal with. I knew the hospice nurse knew all about end of life care as they are specialised in that. (A6) Participants’ accounts confirmed the profound sense of security they gained from the HNS’ comprehensive knowledge and expertise concerning all aspects of palliative care. This sense of security was repeatedly portrayed as complete and unquestioning faith, with the resultant sense that some of the burden and concomitant stress of caring was removed. The Hospice people knew what they were doing. I wouldn’t question them one bit. I wouldn’t even think about it. (B1) . . . (the most important aspect of the HNS role) . . . the feeling that I had a source of expertise available to me. If I had a problem I knew where to go. I always felt they could give me the answer. (A6) Furthermore, the role of the HNS in facilitating access to additional services and other resources was apparent to many participants, including their ‘behind the scenes’ liaising with other healthcare professionals. She came out to see how . . . (the patient’s) condition was progressing . . . Then she made an appointment with the consultant over in the hospice for . . . (the patient) to go to see. She and our doctor had quite a lot of contact I think. (A5) She came out and visited to see how his pain was getting on and to check that he was getting the proper pain relief. She would have organised his pain relief to control it up or down, you know, control what was right for him. She would have contacted the surgery © 2014 John Wiley & Sons Ltd

and they would have made him out the medication. (A4) The sense of security participants gained from the involvement of the HNS held even in the absence of any tangible input. The certainty of support, even if not actually accessed, was crucial to their sense of being able to cope. As such, the mere idea of provision actually manifested a material effect. I do think it was good that they were there and I could ring them. I always had their number and I did ring them. I found it reassuring that I had a source that I could ring, at any given moment. (A6) She gave us her card. If I didn’t know what to do, I would just say ‘well, she’s just at the end of a phone’. That wee bit of paper does a good thing. (B1)

The work of the HNS – an ‘unseen’ benefit The previous theme established participant’s awareness and appreciation of the work, often ‘hidden’, undertaken by the HNS. However, awareness of the full role played by the HNS in the provision and co-ordination of care, was not consistent. Accordingly, some participants continued to see the HNS as solely for the benefit of the patient, while others clearly understood that their remit extended to include care of the carers also. She (HNS) came to organise the night nurses, to come in when he got ill and to help me to get a rest. But I never needed that. (A3) We didn’t really know at the time what they did or how ill he was. (A4) In addition, there was an apparent lack of knowledge concerning services provided by the Northern Ireland (NI) Hospice, as well as confusion over the respective remits of the various local cancer charities. Such lack of clarity meant that some participants understood the services provided by some of the charities as not available to themselves and/or their loved one. In general, the involvement of the HNS, as well as other NI Hospice services (e.g. inpatient and complimentary therapy services), served to promote a clearer understanding. I never knew hospice nurses came out. I just thought Hospice was the building . . . I don’t think . . . (the patient’s) colleagues knew the difference either. The public need to know more about the differences. Maybe calling it ‘Hospice in the community’. (B1) 707

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Being prepared for death and bereavement

DISCUSSION

One of the main anxieties identified by participants stemmed from uncertainty about what the future held. The majority talked about their lack of prior experience of caring for a terminally ill person and consequent lack of appreciation of what to expect. In this context, the involvement of the HNS was seen as crucial in providing the necessary practical skills and instruction and, though such ‘education’ over an extended period of time, the confidence to put these skills into ever greater effect.

Strengths and limitations of the study

I was quite confident in (the HNS). I could ask her things and she would know. ‘If this happens, what would I do? It gave me more confidence ’cause I was quite frightened. (A5) Participants acknowledged the value of the HNS’s experience in caring for others in similar situations, and the consequent ability to anticipate the likely trajectory of their loved one’s illness and to provide appropriate guidance. This sensitive direction, together with the provision of timely, appropriate information resulted in participants feeling more in control, less afraid and better prepared. She knew what we were going to go through, we didn’t. It was the first time for us. She understood what you were going through. She was very understanding. She gave us information about how long he would have to go, so you were expecting it. She more or less prepared you. (A1) She was preparing me for the toughest day of my life. . . . she I think was preparing me for when he was dead. She was seeing the whole picture, I was seeing day to day. She was preparing me, I wasn’t prepared. (A5) Participants talked about the crucial role played by the HNS in assisting their loved ones to fulfil the fundamental human experience of living and dying, always with dignity. This awareness, alongside their own enhanced ability to cope, not only helped sustain them through active caring but also once this caring role had finished. People think that if you talk about Hospice it means death, but it’s not death, it’s helping you to cope with things that make them (the patient) feel comfortable, so that their dignity is still there. Yes, that’s the main thing. I have no regrets of how I coped. I do not have . . . they helped me to do the best I could. In my heart, I know I did my best. (B1) 708

This was a small scale qualitative study conducted among middle-aged, bereaved carers known to the HNS service in one Trust area in Northern Ireland, with only one male participant. As a result of this relatively small sample no claims of statistical generalisability can be made. Notwithstanding, transferability of our findings is valid, as they contribute to a greater understanding of similar contexts of lay and professional caring (Green & Thorogood 2009). Our research has been particularly valuable in generating new knowledge concerning precisely how HNSs support and otherwise enable lay carers to fulfil their caring role, as well as prepare them for death and bereavement. To date, there has been a paucity of evidence concerning the social and psychological processes through which these outcomes are achieved. The primary researcher (RB) has been a HNS for many years, thus possessing a comprehensive understanding of the topic under investigation and having expert skills in sensitive, one-to-one encounters. However, this background also produces potential bias, in that an understanding of the HNS as having a positive influence on patient and carer experiences informed the study. Note-taking after interviews provided an opportunity to explicitly record ongoing responses to participant’s accounts and regular discussion of study progress with supervisors (MG and JJ) allowed for the expression and discussion of these responses as they might impact on analysis. Additionally, selection bias could have encouraged the HNS gatekeepers to choose participants who would speak positively about the role and input of HNS. In that a range of responses was obtained, with participants commenting both positively and negatively on HNS involvement, it would appear that the interviews were effective in obtaining a range of experiences and concomitant understanding. Several participants had loved ones admitted to the NI Hospice for terminal care. Consequently, their experience and concomitant knowledge of HNS support was limited. Additional benefit may have been achieved by learning exclusively from those who had experienced specialist palliative nursing services in the home environment throughout the entire trajectory of their loved one’s illness and subsequent death. Furthermore, research investigating how specialist nurses impact on the caring role of lay carers of all ages, involving more male participants and non-cancer diagnoses is recommended. © 2014 John Wiley & Sons Ltd


The singularity of HNS care This research focused on how and in what ways interventions by HNS impacted on the experience of informal caring. Taken collectively, the findings highlight three main issues. First, in line with previous research, our study identified ambivalence as a core attribute of caring (Andershed 2006; Zabalegui et al. 2008; Wong & Ussher 2009). As such, its stressful, unrelenting and isolating, yet rewarding and fulfilling nature was confirmed. Second, our study highlighted the valuable outcomes achieved by HNS in both mitigating negative, and facilitating positive, experiences of caring. Finally, our study provided rare evidence concerning how (i.e. the social and psychological processes through which) these beneficial outcomes are achieved. These processes are intimately bound up with participants’ understanding of the HNS as qualitatively different from other professional carers. First, consistent with Corner et al. (2003), participants in our study highlighted the uniquely empathetic approach to care provision, as well as expert knowledge and skills, of the HNS. Accordingly, all (except for one) talked explicitly about the HNS as the singular provider of support for them, including, but not exclusively, in their own role as lay carers. Participants characterised the HNS as the professional carer who explicitly sought insight into their personal emotional and physical well-being and offered the means by which these could be enhanced. The concern and support offered by the HNS confirmed themselves as someone who mattered and validated the gamut of emotions they experienced as they cared for their loved one. In this context, it was crucial to alleviating their felt guilt concerning, for example, needing time away from their loved one. In addition, knowing there was someone in whom they could confide (away from family and friends) afforded them a (perceived) emotional ‘outlet’. Here was someone who was not only aware of the burden they carried but was also willing and able to help. Second, participants emphasised the multi-faceted nature of this help, ranging from expert clinical care, through arranging for additional services, to providing a listening and empathetic ear. In short, the HNS was understood as the sole ‘all-round’ provider of support, with a manifest interest in the well-being of both carer and loved one. It was the sense of having someone who could act on behalf of, intercede or otherwise support them in a whole range of anticipated and unanticipated ways that facilitated participants in coping with the burden of caring. That burden remained but was now shared in ways that could only be achieved through the ongoing presence as well as active intervention of the HNS. In this regard, © 2014 John Wiley & Sons Ltd

the fact that the HNS facilitated a comfortable lead up to a ‘good death’ of their loved one played a crucial role in reducing participants’ felt burden of care. Finally, participants described not only the calm and empathic approach adopted by the HNS, but talked about their unique ability to ‘sense’ the needs of both their loved ones and themselves. This ‘sensing’ secured a deep level of trust and faith in the ability of the HNS to provide optimum care and support. In turn, participants gained confidence, their anxieties diminished and they were enabled to undertake their caring role more effectively. Such was the perceived empathy and all-encompassing competence of the HNS that, similar to the findings of Cohen and Wills (1985) and Bee et al. (2008), this perception alone achieved an enhanced sense of security and comfort, even in the absence of any tangible or material benefits being delivered. Participants’ descriptions of felt isolation confirm the findings of previous research that has identified the loneliness experienced by lay carers (Ferrario et al. 2004; Zabalegui et al. 2008). In this regard, Smith and Payne (2000) highlighted the disparity between carers’ reliance on family and friends for support, and limitations in the availability of this support, especially over time. Similarly, our findings identified wide variation in the quantity and quality of support, with a trend towards diminishment over time, leaving the carer feeling progressively more isolated. Carers’ sense of isolation suggests the significant benefits to be gained from involvement of the HNS as they are able to offer practical and emotional companionship. In this context, a potential extension of their role, namely to facilitate access to carer networks, may enhance the support already provided. A wide range of research has shown these networks to be effective in relieving the tedium and stresses of caring (Broback & Bertero 2003; Exley & Tyler 2005; Andershed 2006; Osse et al. 2006; Zabalegui et al. 2008). Our findings concerning participants’ understanding of the role of health professionals (such as district nurses and GPs) as predominantly focused on care of their loved one are broadly in line with those of previous work (see, for example, Andershed & Ternestedt 2000). Carers discussed how the frequent visits by multifarious healthcare professionals compounded a sense of lacking ‘control’ over life in their own homes. This finding highlights the need for more effective communication channels within and across professional groupings as this would promote more sensitive and structured service provision. Our study supports the evidence from previous research, namely that pre-bereavement experiences impact on those post-death (Parkes 1996; Main 2002; Wong & Ussher 2009) 709

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by demonstrating how specialist palliative care nurses were effective in achieving good outcomes for carers postbereavement. In this regard, participants talked about how the HNS helped ‘prepare’ them in terms of fulfilling their caring role, the death of their loved one and for bereavement itself. As a result of this ‘preparation’, participants understood themselves as better informed, more in control, less afraid, better prepared and, crucially, without regrets. The impact of lack of awareness concerning service remits has been highlighted previously (see, for example, Jarrett et al. 1999) as the basis of a failure to avail of appropriate support. Our findings reveal misconceptions and lack of clarity among participants concerning the meaning and nature of ‘hospice care’, the role of the HNS and the services provided. These findings are consistent with previous research that demonstrated, for example, a predominant association of ‘hospice care’ with death, dying and fear (Beaver et al. 1999; Chapple et al. 2005). Although some participants were aware of the extended range of services provided under the ‘hospice’ banner, such understanding was not universal (see also McLoughlin 2002).

Implications for practice and policy Our study has confirmed the value of the role played by specialist palliative care nurses and elaborated on relevant social and psychological processes. As the findings of our research demonstrate, for optimum benefit to be realised, healthcare professionals, patients and carers alike must fully understand all aspects of the HNS role. It is essential, therefore, that a clear explanation is provided at the point of referral into the specialist nurse service. Thereafter,

REFERENCES Andershed B. (2006) Relatives in the end-oflife care – part 1: a systematic review of the literature the five last years, January 1999–February 2004. Journal of Clinical Nursing 15, 1158–1169. Andershed B. & Ternestedt B. (2000) Being a close relative of a dying person. Cancer Nursing 23, 151–158. Armes P.J. & Addington-Hall J.M. (2003) Perspectives on symptom control in patients receiving community palliative care. Palliative Medicine 17, 608– 615. Beaver K., Luker K. & Woods S. (1999) The views of terminally ill people and lay carers on primary care services. International Journal of Palliative Nursing 5, 266–274.

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the HNS should substantiate all aspects of their role at repeated intervals throughout the palliative carer journey. Written documentation would play an important function in helping to sustain knowledge about the service in general and about local access arrangements specifically. At a public health level, a commitment to robust advertising of the specialist nurse service would enhance opportunities for the public to learn about the (availability of) services in their area. This public health messaging is a critical component of the drive to reduce the confusion concerning the various cancer and palliative care services uncovered by this study. The multi-faceted role occupied by specialist palliative care nurses carries significant implications for recruitment, highlighting the necessity to employ individuals who are not only experienced and knowledgeable in relation to palliative care, but also intuitive and caring, possessing highly developed communication skills. Managers must also acknowledge the clearly identified benefits of the individual HNS relationship with carers and the importance of the unique approach adopted by HNS nurse, ensuring that continuity of involvement and stability of staffing within community teams is prioritised. Although such specialist nurses are an expensive commodity, it is clear that their advocacy enhances carers’ confidence and ability to undertake caring, as well as cope both pre- and post-bereavement. The ‘knock-on’ effect, particularly in terms of preventing personal crises, unnecessary hospital admissions and psychological mal-adjustment for carers, not only carries clear implications for reducing costs to statutory healthcare services, but also helps advance the achievement of equity and quality care provision at the end-of-life.

Bee P., Barnes P. & Luker K.A. (2008) A systematic review of informal caregivers’ needs in providing home-based end-oflife care to people with cancer. Journal of Clinical Nursing 18, 1379–1393. Braun V. & Clarke V. (2006) Using thematic analysis in psychology. Research in Psychology 3, 77–101. Brazil K., Howell D., Bedard M., Krueger P. & Heidebrecht C. (2005) Preferences for place of care and place of death among informal caregivers of the terminally ill. Palliative Medicine 19, 492–499. Broback G. & Bertero C. (2003) How next of kin experience palliative care of relatives at home. European Journal of Cancer Care 12, 339–346. Buckner L. & Yeandle S. (2007) Valuing carers – Calculating the Value of Unpaid Care. Carers UK. London, UK.

Chapple A., Ziebland S. & McPherson A. (2005) The specialist palliative care nurse: a qualitative study of the patients’ perspective. International Journal of Nursing Studies 43, 1011–1022. Cohen S. & Wills T.A. (1985) Stress, social support, and the buffering hypothesis. Psychological Bulletin 98, 310–357. Collins F. (2004) An evaluation of palliative care services in the community. Nursing Times 100, 34–37. Corner J., Halliday D., Haviland J., Douglas H., Bath P., Clark D., Normand C., Beech N., Hughes P., Marples R., Seymour J., Skilbeck J. & Webb T. (2003) Exploring nursing outcomes for patients with advanced cancer following intervention by Macmillan specialist palliative care nurses. Journal of Advanced Nursing 41, 561–574.



Dahlberg L., Demack S. & Bambra C. (2007) Age and gender of informal carers: a population-based study in the UK. Health and Social Care in the Community 15, 439–445. doi: 10.1111/j.13652524.2007.00702.x Denscombe M. (2005) The Good Research Guide, 2nd edn. Open University Press, Maidenhead, UK. Donovan J. & Sanders C. (2005) Key issues in the analysis of qualitative data in health services research. In: Handbook of Health Research Methods – Investigation, Measurement and Analysis (eds Bowling A. & Ebrahim S.), pp. 515–532. Open University Press, Maidenhead, UK. Exley C. & Tyler F. (2005) Bereaved carers’ views of a hospice at home service. International Journal of Palliative Nursing 11, 242–246. Ferrario S.R., Cardillo V., Vicareio F., Balzarini E. & Zotti A.M. (2004) Advanced cancer at home: caregiving and bereavement. Palliative Medicine 18, 129–136. Green J. & Thorogood N. (2009) Qualitative Methods for Health Research, 2nd edn. Sage Publications., London, UK. Haley W. (2003) The costs of family caregiving: implications for geriatric oncology. Critical Reviews in Oncology/ Hematology 48, 151–158. Ingleton C., Morgan J., Hughes P., Noble B., Evans A. & Clark D. (2004) Carer satisfaction with end-of-life care in Powys,


Wales: a cross-sectional survey. Health and Social Care in the Community 12, 43–52. Jarrett N., Payne S., Turner P. & Hillier R. (1999) ‘Someone to talk to’ and ‘pain control’: what people expect from a specialist palliative care team. Palliative Medicine 13, 139–144. King N., Bell D. & Thomas K. (2004) Family carers’ experiences of out-of-hours community palliative care: a qualitative study. International Journal of Palliative Nursing 10, 76–83. Lewis D. & Anthony D. (2007) A patient and carer survey in a community clinical nurse specialist service. International Journal of Palliative Nursing 13, 230– 236. Main J. (2002) Management of relatives of patients who are dying. Journal of Clinical Nursing 11, 794–801. McLoughlin P.A. (2002) Community specialist palliative care: experiences of patients and carers. International Journal of Palliative Nursing 8, 344–353. Murray S.A., Grant E., Grant A. & Kendall M. (2003) Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers. British Medical Journal 326, 368–372. Osse B.H.P., Vernooij-Dassen M.J.F.J., Schade E. & Grol R.P.T.M. (2006) Problems experienced by the informal caregivers of cancer patients and their

needs for support. Cancer Nursing 29, 378–385. Parkes C.M. (1996) Bereavement: Studies of Grief in Adult Life, 3rd edn. Routledge, London, UK. Polit D.F. & Beck C.T. (2004) Nursing Research – Principles and Methods, 7th edn. Lippincott Williams & Wilkins, Philadelphia, PA, USA. Pope C., Sebland S. & Mays N. (2000) Analysing qualitative data. British Medical Journal 320, 114–116. Ritchie R. & Lewis J. (2006) Qualitative Research Practice: A Guide for Social Science Students and Researchers. Sage Publications, London, UK. Runciman P. (2003) Family carers’ experiences: reflections on partnership. Nursing Older People 15, 14–16. Smith P.C. & Payne S. (2000) Family caregivers’ perceptions of social support in a palliative care setting. Palliative Medicine (Research abstracts) 14, 333–334. Wong W.K. & Ussher J. (2009) Bereaved informal cancer carers making sense of their palliative care experiences at home. Health and Social Care in the Community 17, 274–282. Zabalegui A., Bover A., Rodriquez E., Cabrera E., Diaz M., Gallart A., Gonzalez A., Gual P., Izquierdo M.D., Lopez L., Pulpon A.M. & Ramirez A. (2008) Informal caregiving: perceived needs. Nursing Science Quarterly 21, 166–172.

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