Support Care Cancer DOI 10.1007/s00520-012-1434-7
ORIGINAL ARTICLE
A qualitative exploration of the role of primary care in supporting colorectal cancer patients Susan Hall & Nicola Gray & Susan Browne & Sue Ziebland & Neil C. Campbell
Received: 2 November 2011 / Accepted: 27 February 2012 # Springer-Verlag 2012
Abstract Purpose To explore experiences and support needs of people with colorectal cancer, with a focus on identifying opportunities for primary care interventions. Methods We conducted a new qualitative analysis of an existing dataset, comprising semi-structured interview transcripts from 39 people with colorectal cancer from across the UK, interviewed in 2001–2002 for www.healthtalkonline.org. Then, we conducted semi-structured interviews with 30 people with colorectal cancer from North East Scotland and Glasgow in 2009 and analysed these new data to explore themes and challenge hypotheses that emerged from the Healthtalkonline data. Results Formal sources of support, including that from primary care, were valued by those who received them, but provision was described as sporadic both in 2002 and in 2009. However, more of the 2009 participants gave descriptions of specialist nurse and community nurse involvement, and telephone contact from general practitioners, which were welcomed. Improvements in meeting information needs, particularly on the issues of diet and sex, were identified by 2009. A recurring issue reported by patients S. Hall : N. Gray : N. C. Campbell (*) Academic Primary Care, University of Aberdeen, Polwarth Building( Foresterhill Aberdeen AB25 2ZD, UK e-mail:
[email protected] S. Browne General Practice and Primary Care, University of Glasgow, 1 Horselethill Road, Glasgow G12 9LX, UK S. Ziebland Department of Primary Health Care, University of Oxford, Rosemary Rue Building, Old Road Campus, Roosevelt Drive( Headington( Oxford OX3 7LF, UK
was the distress experienced by their own friends and family; some patients found themselves having to provide, rather than receive, emotional support at this difficult time. Conclusions There have been improvements in support for people with colorectal cancer since 2002, with more specialist and community nurse involvement, and telephone contact from general practitioners, but provision remains piecemeal. Patients would benefit if their families received support, and primary care may be in a good position to provide this. A proactive approach from general practitioners in the post-discharge period is valued. Keywords Cancer . Family Medicine . Qualitative research . Social care
Introduction Nearly 250,000 people in the UK were living with a diagnosis of colorectal cancer in 2008, with 90% more than a year from diagnosis [1]. Numbers are increasing due to higher incidence in an ageing population and improved survival; over the last 30 years, survival has more than doubled with approximately half now surviving 5 years [2, 3]. Many of these people will need social and psychological support at some time during their cancer journey. In 1996, Helgeson and Cohen identified three broad types of support: emotional, informational and instrumental [4]. Emotional support provides empathy, comfort and reassurance and aids adjustment to cancer [5]. Informational support may help patients to understand their illness, possible causes and types of treatment available. Instrumental support assists with day to day practical issues, such as domestic chores, transport and finance [4]. Support may come from a variety of sources including partners, friends, colleagues, support
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groups, charitable organisations, other people with cancer and medical professionals, both specialist and primary care [4–8]. Specialist nurses and Internet sites are more recent sources. However, recent surveys show that a third of people with cancer have important unmet support needs [9, 10]. Good support helps patients in several ways, improving health-related quality of life and mental health, and may even lengthen survival [5, 11, 12]. It is, therefore, worth exploring whether there are opportunities for primary care to provide beneficial support during and after colorectal cancer treatment. In the UK, primary care’s role in cancer has been described as “pivotal” repeatedly, with one of its key functions being provision of support [13]. Exactly what support primary care is best placed to provide and whether it is beneficial is less clear [14]. This study set out to explore the experiences and support needs of people with colorectal cancer through comparison of two sets of qualitative interview data reporting experiences several years apart, and to use the findings to identify opportunities for supportive primary care interventions with potential to benefit people with colorectal cancer.
experience and included questions about support needs and sources of support. Recruitment continued until data saturation had been reached (i.e. new interview data no longer added to themes or codes). Participants had consented to use of their data in further research and care was taken to anonymise data and protect confidentiality, including allocation of new identity codes using random numbers. Secondary analysis of Healthtalkonline (2002) data A new analysis of the 2002 interviews was conducted, starting with the original transcripts. Full transcripts of the interviews were read multiple times to facilitate familiarisation with the data, and QSR NVivo software was used to code, sort and retrieve data [19]. Initial inductive analysis identified unmet support needs as a recurrent theme, and further analysis was conducted with reference to literature and theory on support for people with cancer [4–8]. After discussion with the multidisciplinary research team, mentions of general practitioners and primary care, along with unmet care needs, were also sought. Unmet support and information needs were identified and selected for further exploration during new interviews.
Methods
Contextual changes between 2002 and 2009
Healthtalkonline (2002) data
A new set of interviews were conducted in 2009 for two main reasons. First, it enabled us to explore themes identified from the 2002 data and whether there were opportunities for primary care intervention. Secondly, they allowed us to retest the findings from 2002 in what had become a new context. By 2009, several changes had taken place to the National Health Service (NHS). The entire population remained registered with a general practice for primary medical care, all of which was free at the point of need (paid from taxation), but a new contract for general practitioners was introduced in 2004 [20]. This removed general practitioners’ previous 24 h contractual obligation, so out-of-hours care for most patients was now provided by new organisations, reporting directly to NHS Boards. The new contract introduced incentive payments for health promotion and chronic disease management, but less than 1% of these were for care of patients with cancer. Secondary care also changed during this time with establishment of cancer networks, a continued drive towards earlier discharge from hospital and increased numbers of, and roles for, clinical nurse specialists [21–23].
First, we conducted a reanalysis of interview data originally collected for the Healthtalkonline colorectal cancer website [15, 16]. Healthtalkonline data were selected from data that were available online and in print, as their methodologies in data collection and primary analysis were robust [16–18]; the interview schedules were relevant to our aims, and full transcripts were available from the University of Oxford, which holds the copyright for the interviews. Methods of the Healthtalkonline module have been published previously by Rozmovits and Ziebland, 2004 [15–17]. Thirty-nine UK residents with colorectal cancer were recruited and interviewed during 2001–2002 (Table 1). Non-probability, maximum variation sampling was used to ensure a wide range of experiences and views from people at different stages of the disease. A combination of narrative and semi-structured sections in the interview aimed to cover the whole Table 1 Characteristics of participants in 2002 and 2009
Sex
Male Female Age range (years) Place of residence
2002 Participants
2009 Participants
20 19 33–87 Throughout the UK
17 13 37–85 Northeast Scotland and Glasgow
Participants (2009) In 2009, a new, non-probability, maximum variation sample of 30 colorectal cancer patients resident in Northeast Scotland and Glasgow were recruited when attending colorectal cancer clinics and via a colorectal clinical nurse specialist (Table 1). These geographical areas include both urban and
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rural, and affluent and deprived communities, and sampling was conducted to ensure representation from these groups. Participants were recruited at different stages after completion of initial treatment up to 5 years after diagnosis and efforts made to ensure representation from people with different disease stage and treatment. Ten lived alone and the others with partners or family, some of whom were elderly or disabled. All participants gave their informed consent prior to their inclusion in the study. Interviews and analysis (2009) Interviews (by SH and SB) were conducted in locations selected by the participants, usually their own home, although one participant selected a café. They were used to explore and challenge hypotheses and possible areas for primary care intervention that had emerged from the Healthtalkonline data. A semi-structured interview schedule covered information needs, support for patients and their families and support from primary care and other professionals. Again, recruitment continued until new interview data no longer added new themes or codes to the analysis. Data were analysed by SH and SB using the same methods as for the earlier dataset.
Results Data from both sets of respondents supported previous findings on the benefits of support from a variety of sources and confirmed examples of un-met needs [4–10]. Most emotional and instrumental support came from relatives and friends [8]. Elements of support (mostly informational and emotional) were also received from oncologists and oncology nurses, primary care, counsellors and support groups. All of these varied with the patient’s position in the treatment pathway and what was available locally. Three support related themes relevant to primary care emerged: firstly, perceptions of existing support from primary care; secondly, un-met information needs; and thirdly the patient as supporter to their own family and friends. Quotations are annotated as follows: A0Northeast Scotland, G0Glasgow, HT0Healthtalkonline; Interview Year; M0Male, F0Female; age group at diagnosis. Perceptions of support from primary care Participants’ experience of support from their primary care team before and after surgery was variable. In 2002, some gave positive reports, with general practitioners providing support that, whilst general and non-specific, was valued, “I mean I had good GP [general practitioner] support I have to say and, you know, I could go any time and
talk about it … just have the kind of support I needed”. HT36 2002F 50s. However, others expressed disappointment that more support had not been provided by general practitioners or other staff in the community. “I didn’t have any contact with the GPs unless I went because I’d got a twinge or something that worried me. …there wasn’t a specialist nurse to help me through this. And a lot of people still get very little or no support afterwards, which I think is a shame” HT25 2002F 40s. There was similar variation in 2009, with participants giving examples of both good and poor support from primary care. “I’d first class care from my health centre but I felt after when I came home if, for example, any of the practice nurses would have paid a visit more for reassurance you know “Was I coping OK, was I straining where the operation had been?” …I felt if I had more reassurance that it would have been very helpful”. A013 2009F 80s This participant was specifically looking for information and reassurance from general practice, but others spoke more generally about support needs without being so specific about the provider. There was particular mention of two types of support that friends and relatives were not best placed to provide. First, participants wanted to speak to someone with knowledge and understanding of their medical condition. Second, they wanted to speak openly about things they felt might distress friends and relatives. “… having somebody to talk to because even family don’t, they know that you are going through an operation, they know that you have been through a lot but they don’t understand what it’s all about and you are frightened to tell them too much in case it frightens them,” G007 2009F 70s. The source of this support would, ideally, be someone with enough medical knowledge to provide information and, they hoped, reassurance about the symptoms and feelings they were experiencing. “Just somebody to talk to would probably have been the best thing, a helpline or a nurse who knows, that you could phone at any time and say ‘I’m a bit nervous about how I’m feeling’ and they could sort of put your mind at ease”. A009 2009M 30s These were not roles that necessarily had to be filled by primary care. Patient support groups were discussed but were rarely available. Support from stoma nurses was
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appreciated, and specialist oncology nurses were a welcome development for participants interviewed in 2009. For some participants, all their perceived support needs were met by their specialist oncology nurse. “I had wonderful assistance from the bowel cancer specialist nurses, … when I got home well they sort of didn’t shut me out as it were, I left with the card that I could phone them at any time if I had any problem and I still can” .G011 2009F 60s Participants’ experience of early cancer treatment was of it being hospital-based, and this was their expectation. Specialist oncology nurses could provide continuity from this early hospital-based care, but this depended on their availability. While there were more mentions of specialist nurses in 2009 than 2002, this only applied in some geographical areas. In other areas, support from specialist nurses was limited or absent. Two aspects of primary care were also more prominent in 2009 and welcomed by participants. First was the increased use of telephone. “My own doctor was away and a partner who was looking after his cases in his absence phoned me, she noticed I was going to have surgery and she wondered if I was feeling all right about that …but you know I just found that the whole attitude was … very supportive”. G013 2009F 70s Telephone contact was welcomed for showing interest and provided reassurance that their general practitioner was available, should there be need. It had been mentioned in 2002 as something that might be useful but was rarely experienced at that time. In 2009, it was viewed positively by those who experienced it, whether the call came from the general practitioner or specialist nurse. The second aspect of primary care that appeared more prominently in the 2009 interviews was community nursing. Community nurses were often mentioned in the postdischarge period when their main purpose concerned specific tasks like wound care. “After the surgery I came home, our local nurse from the doctor’s surgery here she came round weekly”. A003 2009M 50s “I had the nurses, the district nurse coming in to bathe my wound and re-dress it from the July right into the beginning of September, so you do, that’s when you find that you can actually ask them questions and they can give shall we say a little counselling as to how good you are getting on and what you should be trying to do and all the rest of it.” G011 2009F 60s As illustrated, this regular contact could provide the relationship and opportunity for more general support, advice and reassurance, all of which was appreciated.
Un-met information needs In line with previous reports the main sources of factual information were medical professionals [4]. Information on two topics was highlighted as desirable but deficient in 2002, but had improved by 2009. In 2002, many reported a lack of dietary advice and no contact with a dietician during hospital stays. This woman felt that she “Would have benefitted if somebody had given me a really comprehensive break down of a good diet for a bowel cancer patient” HT7 2002F 50s. This was of concern, especially but not exclusively, to those who had been fitted with either a temporary or permanent stoma. Advice given by ward nursing staff was sometimes reported as conflicting or inaccurate, and there was poor access to dietary advice once patients were at home. In contrast, the majority of the 2009 interviewees reported the availability of leaflets or diet sheets from the dieticians whilst in hospital. “Well I had very helpful information in the hospital about what applies and not applies to eating in the early stages”, G013 2009M 70s with many receiving continued support after discharge. “The dietician I saw for about 6 months afterwards until she was happy that my weight was going up”, A009 2009M 30s Sexual difficulties were reported by many participants in the 2002 interview group. A lack of openness on the part of the surgeons and oncologists regarding the effects of treatment was highlighted. Male and female patients voiced concerns about body image and the impact of surgery or stomas on their sexual relationships, which they felt had not been properly addressed by their medical team: “ … another concern which no one explained to me, and no one’s ever explained to me or tried to explain and that was uh the intimacy side, of, and the consequences of having colorectal surgery. Um, it did affect my um, sexual side of my marriage and I had to go and seek um, counselling for that” HT32 2002M 40s More 2009 participants reported the issues surrounding possible impotence, sexual problems and body image being addressed. Many received information booklets and some surgeons discussed the risks with patients before surgery, “What they do before you go into surgery is they go through all the things that may happen to you. I think the last one he said “We are down in that area where there’s a nerve that could make you impotent”. A011 2009M 60s
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However, discussion about sexual matters varied by location and was not universal. There were examples of patients who expressed reluctance to discuss such personal issues and others who regarded this information as not applicable to them. Despite this, most patients understood the importance of information about sexual matters being available to those “that could maybe do with help”. G009 2009F 70s Patients having to support others As previously mentioned, family members and friends were generally a great source of emotional and instrumental support around the time of diagnosis and throughout treatment, but there were many reports of the opposite. Respondents of both sexes in both interview groups described scenarios where “well-meaning” phone calls and visits from friends and relatives resulted in the caller or visitor breaking down and the patient actually having to provide the support. “I was consoling her because she was so upset and …, she was in tears.” HT10 2002M 50s. The emphasis in these reports was on the distress experienced by family members, friends and colleagues and the impact of this distress on the respondent. It is important not to take these accounts at face value; participants may wish to underline a position of stoic independence by pointing out that they are the ones supporting others. There were certainly examples of a proudly robust approach to recovery: “Well the district nurse can’t get over the fact that I can eh, do all this house and more, and hang curtains when I shouldn’t be: ‘You should have somebody in to do that.’ And then my son was here when doctor was up, and he said to the doctor ‘Will you talk to mum because she’s been out doing that garden?’ He says ‘I don’t talk to your mum because every time I say “don”t do“ she carries on and does it and she’s fine.’ He said, ‘So all I’m going to do is ask her to put her coat on and come and do mine under medical supervision!’” HT27 2002F 60s However, we think that this finding is not simply the result of the respondents’ positioning in the interviews because their reports of providing support to others were both common and detailed. In this example, a man’s decision on treatment was influenced by his wife’s distress: “I did contemplate not having the chemotherapy …I came home from the oncologist and I looked at my wife and she was falling apart …she couldn’t cope much more. I had to say yes deliberately purely to see my wife’s face brighten, not be so unhappy.” HT24 2002M 60s.
As reported previously, women sometimes stated that their husbands found the emotional strain of support particularly difficult [18]. “It was almost like he had me dead and buried …he was getting miserable, you know he was just getting depressed and I thought I’ve got to sit and explain to him, you can’t live like that, if he goes on like that it’ll just drive him mad.” HT1 2002F 30s. In 2009, participants gave similar reports of close relatives being distressed and requiring support. The shock was often described as greater for the family than for the patient: “[My wife] was quite ill as well, apart from worrying about me she was worried about her mother, she was in a worse state than what I was. She was actually attending the doctor while I was recovering because of the pressure of me being ill”, A014 2009M 60s These accounts raise a question about whether support for family members might be doubly beneficial. The potential benefits of support and information for families was raised in the 2002 interviews: “I think probably there should probably be more sort of readily available counselling or whatever you’d like to call it, at least you know for family members because I think, I think the whole family feels lost and feels frightened by the disease”. HT9 2002F 30s. Its desirability was also apparent in the 2009 interviews. This woman talked about her elderly mother: “I also had my mother … and this was a great shock to her because I was the one who went to her, I was there at the end of the phone every day for her and she just couldn’t come to terms with it. She was worse than any of us really, so I think yes, bringing in the whole family because it affects people in different ways.” A004 2009F 60s. It is important to note that this was not universal. There were participants who did not think that close family members needed formal support. A substantial minority, however, worried about the burden their illness had placed on family members, and the psychological stress they experienced as “helpless bystanders”. In these cases, participants thought that close family members would have accepted, and benefited from, information and emotional support.
Discussion This study illustrates that the support needs of patients with colorectal cancer are complex and provision of support, variable. In this context, contact from primary care is
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valuable for patients. Telephone contact and community nurse involvement are both viewed positively, but there were examples in both datasets of no contact at all. Patients find themselves providing support for their families and would value help with this. The support from primary care that is valued includes elements from all three types described previously: emotional, informational and instrumental. Much of it concerns medical information, but also reassurance about experiences and future availability, and practical and emotional help supporting families. Relationship with other research Participants’ reports of no contact from primary care following discharge from hospital are in line with reductions in home visiting in the UK (22% of all consultations in 1971, 4% in 2003) [24]. Recently, their contract has focused the attention of general practitioners on meeting chronic disease targets and providing surgery-based clinics [20]. Other aspects of care, like visiting patients on discharge from hospital after cancer treatment, may have become sidelined. More positively, our findings suggest benefits to patients from contact with general practitioners, even if this is by telephone. Telephone contact was much more commonly mentioned in the 2009 interviews than those in 2002. Again, this is consistent with national trends: telephone consultations increased from 4% of general practitioner consultations in 1971 to 10% in 2003 [24]. Telephone consultations have been found to be shorter and less likely to identify problems than face-to-face consultations [25], and general practitioners may be wary of using them when dealing with complex problems like recently diagnosed cancer. We found them, however, to be viewed positively by patients and certainly preferable to no contact. The increased role of both specialist and community nurses was also viewed positively by participants, although specialist nurse involvement was dependent on their availability. Community nurses have been found by others to provide reassurance and support to patients with cancer [26, 27]. Our findings about the distress felt by family members are in line with previous reports [28–31]. Mellon et al. (2006) found that “care givers worry more about the survivor’s future …and report more distress than the cancer survivors themselves report”, and Vivar et al. (2009) said that “Care should not be addressed simply to survivors, but should include the general well-being of families” [30, 31]. Our research emphasises that some patients are shouldering the burden of support for their families at a time when they would benefit from support themselves. The reactions of friends and family have been shown to influence how patients cope and adapt to their cancer diagnosis and treatment [5, 32]. Good support, especially from those that the patient is most attached to—husbands, wives, partners and
close family members—is associated with a reduction in psychological distress and enhanced coping [5, 8]. Effective provision of emotional support and information to family and carers including advice about how to support the patient may be doubly beneficial by relieving patients of this burden and enabling family members to be more supportive of patients. Strengths and limitations of this study There are limitations attached to conducting secondary analysis, most importantly the fixed and limited nature of the dataset and need for participant consent [33]. It can, however, provide new perspectives on the original data and allow new research questions to be addressed [34]. By conducting the second group of interviews in 2009, we had the opportunity to explore perspectives raised in the original data, make contrasts and expand on emerging themes. The original Healthtalkonline participants were from all walks of life, at all stages of their colorectal cancer journey and recruited from across the UK, so are likely to represent a broad range of experiences. The more recent participants were recruited in 2009 from two NHS boards. Although more limited geographically, these areas encompass urban, rural, affluent and deprived communities. Participants were recruited both in the early treatment phase of their illness and in follow-up, so a wide range of experiences were represented. Research participants are volunteers, and thus the sample may be biased towards those who are willing to take part or who have a particular issue related to their illness and treatment. Some degree of reporting bias, emphasis or inaccuracy can occur. It is possible that, in an effort to maintain “normality” during a difficult period, people do not want to be considered cancer “victims” and may emphasise how they continue to function in their normal social role while understating their own support needs. Implications for clinical practice The increasing numbers of people with colorectal cancer and their families will continue to have support needs, but, presently, provision for this is piecemeal. Positive secondary care developments include involvement of specialist nurses, but gaps in provision remain. Aabom and Pfeiffer (2009) found that patients become dependent on specialists, knowing that their GP does not have specialist oncology knowledge [35]. A proactive approach is needed by general practitioners to maintain contact, especially if patients have psychosocial support needs or their disease progresses. Contact from general practitioners, even if only by telephone, appears beneficial, especially soon after diagnosis and initial treatment. Visits by community nurses are valued. Primary
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care appears well placed to help identify, provide or signpost appropriate support services [36]. Families remain important providers of both emotional and practical support, but the distress of family members can prove burdensome for patients. Previous research has shown that family members are reluctant to seek help from professionals for their own distress because they perceive doctors to be too busy with more important things to do [30]. Once again, a proactive approach appears to be needed. Whether primary care can support family members sufficiently to turn them from burdens to assets remains to be proven, but there is certainly potential.
Conclusion The support that patients with colorectal cancer need and receive varies, and there are plenty of gaps where primary care interventions would be welcomed. Proactive telephone contact after hospital discharge, community nurse involvement and help with distressed relatives are all valued by patients. Acknowledgements The authors acknowledge the contribution of the Health Experience Research Group at Oxford University and especially Linda Rozmovits who collected the original data for the Healthtalkonline Colorectal Cancer study. To all the recent participants, in both interview groups, who gave their time willingly, often with the express desire to “help someone else in the future”, thank you. Funding This work was supported by Cancer Research UK, programme grant number C542/A6502.
Ethics committee Ethical approval for this study was granted by MREC reference no: 06/MRE00/3, and it was conducted in accordance with the ethical standards laid out in the 1964 Declaration of Helsinki.
Competing interests Disclosures: none. The authors declare that they have no competing interests. In particular, they have no financial interest with Cancer Research UK other than research project funding. They have full control of all primary data and, subject to research ethics committee approval, agree to allow the journal to review anonymous data if requested.
Appendix The original analysis of Healthtalkonline data detailed the physical, psychological and social distress that patients experience from difficulties with bowel control [16]. A more recent study explored relationships between patients and spouses or cohabiting partners, highlighting their mutual support and reciprocity, along with some “traditional” gender differences [18]. Of most relevance to our aims was a study that combined a survey of follow-up regimes in 50
hospitals with an exploration of patients’ needs and preferences for follow up [17]. This paper reported wide variation in patients’ preferences, often depending on symptoms, and positive and negative experiences of their general practitioners. It suggested that general practitioners could have a greater role in follow up for some patients and provided a checklist of topics they may wish to learn about and discuss with patients.
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