Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer—a multicentred study
Measure Yourself Concerns and Wellbeing (MYCaW) is a validated person-centred measure of the concerns and wellbeing of people affected by cancer. Research suggests that the concerns of informal caregivers (ICs) are as complex and severely rated as people with cancer, yet MYCaW has only been used to represent cancer patients’ concerns and wellbeing. This paper reports on the development of a new qualitative coding framework for MYCaW to capture the concerns of ICs, to better understand the needs of this group.
This multicentred study involved collection of data from ICs receiving support from two UK cancer support charities (Penny Brohn UK and Cavendish Cancer Care). Qualitative codes were developed through a detailed thematic analysis of ICs’ stated concerns.
Thematic analysis of IC questionnaire data identified key themes which were translated into a coding framework with two overarching sections; (1) ‘informal caregiver concerns for self’ and (2) ‘informal caregiver concerns for the person with cancer’. Supercategories with specific accompanying codes were developed for each section. Two further rounds of framework testing across different cohorts allowed for iterative development and refinement of the framework content.
This is the first person-centred tool specifically designed for capturing IC’s concerns through their own words. This coding framework will allow for IC data to be analysed using a rigorous and reproducible method, and therefore reported in a standardised way. This may also be of interest to those exploring the needs of ICs of people in other situations.
KeywordsSupporter Carers Cancer MYCaW Concerns Person centred Long-term conditions Informal caregiver
The term ‘informal caregiver’ (IC) refers to a spouse, family member or friend, who may provide care to an individual who has acute or chronic needs . They may be involved in the management of medical tasks, financial and emotional support and co-ordination of care, amongst many others , thus play a pivotal role in how well patients manage their illness [3, 4, 5].
The prevalence of cancer survivorship is rising globally. In the UK, there is a 3.2% annual increase in cancer survivorship as the development in medical treatment for people with cancer advances . Increasing alongside the rising number of people with cancer is the number of people who are ICs. It is estimated that 1.1 million people are now acting as ICs to someone with cancer in the UK  and that 7% of carers in the USA are caring for a person with cancer, which is estimated to be 2.8 million people . There is a paucity of data on prevalence of ICs globally despite the many research studies conducted around the world that reveal the similarity in unmet needs of informal caregivers of people with cancer [e.g. 9, 10, 11, 12].
The emotional, social and financial stress cancer places on a caregiver is known as caregiver burden. Caregiver burden is multifaceted, for example, Stenberg (2010)  identified that caregiver burden was significantly associated with direct and indirect care duties for the cancer patient, whilst Tan et al.  demonstrated a significant relationship between emotional distress, quality of life of the caregiver and caregiver burden. The level of burden is known to persist over time after diagnosis , and increasing levels of caregiver burden is the cause of distress and illness for many ICs [13, 15, 16, 17].
A significant body of evidence suggests that there is a symbiotic relationship between the levels of stress experienced by people with cancer and their ICs [13, 18, 19, 20, 21]. Factors which may account for the distress posed include negotiating roles from partner to carer in relationships, reprioritisation of lifestyle and responsibilities related to employment and childcare. Psychological difficulties may become prolonged because of the IC’s sole focus on the cancer patient’s needs and therefore disregard of themselves [22, 23]. The role of the IC can fluctuate in correlation with the different stages of the person with cancer illness and their needs [24, 25, 26]. Cameron (2002) , for example, reports that during the patient’s early stage of treatment, the caregiver’s psychological state of mind is greatly affected but psychosocial and physical concerns may predominate in later stages of cancer progression, e.g. factors such as social support, employment and the role of supporting and providing quality of care for the cancer patient.
Current provision of support for informal caregivers in the UK
‘Early and adequate support’ for ICs can improve their own health and wellbeing outcomes and those of the person they are supporting . Despite the excellent biomedical treatment for people with cancer, inadequate provision for the needs of ICs in the UK means that cancer charities are currently the main providers of informal support and information for this population. Approximately half of ICs receive no support at all . A further report from the Macmillan Cancer Support revealed four in five ICs (n = 386) felt that their caring role affected them, most commonly their emotional wellbeing, social life and relationships . More recent strategic developments in the UK have prioritised the need to work in collaboration with voluntary organisations and general practice to identify innovative ways to support carers generally .
In order to deliver new ways of supporting ICs, the needs and concerns of this group must be fully understood. Several patients reported outcome measures developed can measure caregiver burden and levels of quality of life and wellbeing in cancer caregivers. A systematic review of patient-reported outcome measures for cancer caregivers identified 16 domains and 5 overarching themes that represented the total criteria of current caregiver outcome measures . The themes included lifestyle disruption, wellbeing, health of the caregiver and managing the situation and relationship. There was, however, no single outcome measure that covered all of these criteria relevant to ICs.
Given the negative impact that is experienced by a large proportion of ICs, there is an urgent need to identify their unmet needs and provide appropriate support. MYCaW is a validated patient-centred outcome measure that quickly captures all the concerns of people with cancer in a way that is not possible with a predetermined list of items . Our previous research has comprehensively mapped the concerns and wellbeing of people with cancer internationally, using Measure Yourself Concerns and Wellbeing (MYCaW) [32, 33, 34]. This ensures that service users’ perspectives are represented in the routine data monitoring, evaluation and research .
The current MYCaW coding framework only represents cancer patients’ concerns. MYCaW data gathered in a service evaluation of the Living Well course at Penny Brohn UK (PBUK) revealed that the concerns of ICs were as complex and severely rated as those of people with cancer . The aim of this paper is, therefore, to report the development of a new MYCaW coding framework for the analysis and reporting of the concerns of ICs of people with cancer.
Penny Brohn UK (PBUK) is a leading UK charity specialising in ‘whole person’ support for people with any cancer and their ICs. PBUK contributed to the National Cancer Survivorship Initiative (NCSI) vision  and has implemented a free Living Well with the Impact of Cancer course. This course provides clients with a range of self-management tools, advice, information and support to help manage the impact of cancer, complementary to medical treatment. The information and techniques provide support for the whole person: physically, psycho-emotionally, spiritually, relationships, community, environment and practical issues.
Cavendish Cancer Care is an independent UK charity supporting families affected by cancer and helped to develop MYCaW . They offer support through a tailored package of care to address particular needs and concerns of people with any cancer, and their ICs. Specifically, they provide emotional and practical support alongside an extensive range of therapies. This service also runs a dedicated Children and Young People’s Service to provide whole family support, and a Cancer Buddies programme in which volunteers who have experience of cancer help others affected by cancer.
Phase 1—exploring the concerns and needs of ICs
Analysis of ICs’ data from an earlier service evaluation  highlighted concerns about providing support, relationships, physical and mental health of the patient and their own (ICs) physical and mental health. To understand the breadth of concerns experienced by ICs, an online survey of 12 open-ended questions was administered via SurveyMonkey. Participants were not restricted in the length of their answers. The questionnaire was administered between 24 January 2014 and 28 February 2014.
ICs were eligible for phase 1 if they had attended a residential Living Well with the Impact of Cancer course at PBUK’s National Centre (Bristol, UK) in 2013 and provided their email contact details. Suitable participants were sent an invitation email by RJ at PBUK explaining what the research entailed, a link to the survey and a unique code (given by PBUK) to access the questionnaire. Pseudoanonymised data was received as the survey response, but any concerns that researchers had about the content of responses could be followed up by the medical doctor at PBUK, if deemed necessary using the unique code. A total of 70 ICs were contacted; non-responders were not followed up due to time constraints.
Survey data was reviewed and anonymised where necessary. Thematic analysis was carried out by NC and MP, to identify primary themes and categories. A preliminary coding framework and corresponding codebook was then developed (as in Polley et al. 2007 ) for piloting in phase 2.
Phase 2—piloting the caregiver coding framework
The caregivers coding framework was piloted using retrospective anonymised MYCaW concerns from 76 ICs who attended a Living Well course at PBUK (either residential at the National Centre or non-residential at other UK locations). ICs’ concerns were independently coded by RJ and NC and compared. RJ and NC talked through disagreements so that the codes could be amended and new codes added to the framework.
Phase 3—refining the coding framework
Phase 3 was used to determine if the coding framework would cater for MYCaW concerns from ICs from a different cancer centre and/or in a different geographical location. The revised framework from phase 2 was next tested on data from 144 informal caregivers who had either attended a Living Well course at PBUK between June 2015 and March 2016, or who had received support from Cavendish Cancer Care between April 2015 and March 2016. Two hundred eighty-eight MYCaW concerns were independently coded by four researchers (RJ, MP, CF, MS). Minor disagreements were identified and discussed in depth. Minor changes to the coding framework and codebook were made until all concerns reported by the ICs could be incorporated.
We collated data from 2 organisations and we do not have full control to deposit all the data.
Participant characteristics for each of the three phases of development of the informal caregiver coding framework for MYCaW. Total N = 241
Mean age (years) (range)
Age range (years)
PBUK, National Centre, Bristol UK
29 to 73
PBUK, National Centre, Bristol UK (62%)
26 to 74
Other UK locations (38%)
PBUK, National centre (77%)
32 to 72
Other UK locations (23%)
Cavendish Cancer Care, Sheffield, UK
17 to 87
Phase 1—exploring the concerns and needs of informal caregivers
To explore the breadth of concerns that ICs experienced, responses, ranging from 1 to 15 sentences, were analysed. Many responses provided rich and raw accounts of ICs’ experiences. All responses were coded deductively and analysed using a thematic approach . Three responses indicated the respondent was having difficulty coping, so the participants were identified and contacted by the medical doctor at PBUK.
Informal caregiver concerns for self
“The drugs, stress and change of lifestyle of becoming a carer made me unwell and led me to gain weight.”
“I was very angry about everything. I knew I was being unhelpful but was overwhelmed by emotions”
“My concern has been that I can’t suggest that some things my wife wants to do maybe a step too far and unhelpful in her condition for fear of her feeling unsupported. […] I have at times felt under pressure because I want to do all I can to support my wife.”
“It feels like a double-edged sword: he dies and it is tragic and I lose the love of my life or he lives and I have to dedicate my life to caring for him”
“My husband and I were always very active but now he can’t do much so I just stay in with him so he’s not alone. Also I left my job a few months ago to be with him […] and just feel I have to do everything for my husband to make his last days happy no matter how worn out I am […], now it’s just housework mainly and preparing food”.
“… on top of coordinating all the ever changing drugs, appointments, results, briefing/updating the different medical specialists teams he requires”
Concerns about the informal caregiver-person with cancer dyad
Five themes were identified relating to the impact of being an IC on the dyad (lower half of Fig. 2). These included relationships, the physical health of the person with cancer, the psycho-emotional health of the person with cancer, practical concerns and concerns relating to end of life of the person with cancer.
“… sometimes her behaviour opens up old wounds and I get angry again. I never show it to her though – but I try to encourage her to talk, and rest – though she is quite resistant to “authentic emotion”, preferring to try to be brave.”
“… His very poor prognosis led me to start to distance myself emotionally sort of preparing myself for losing him. Thinking of a future without him was unspeakable.”
“My main concern is about the increasing amount of pain and symptoms he has which at times comes from all directions and of course I do not want him to suffer a painful death.”
“Being diagnosed as terminally ill made her very depressed and down and sometimes short tempered and moody.”
Finally, there were many practical concerns that were raised:
“The financial costs of changing clothing sizes, the need for him to eat the best quality of food and the cost of keeping the house continually heated throughout the year.”
These themes were developed into a coding framework with an accompanying coding guide, which was then piloted on retrospective MYCaW concerns data in phase 2.
Phase 2—piloting the new caregiver coding framework
MYCaW concerns from 76 informal caregivers at PBUK were used to pilot the new coding framework. Three additional codes were independently identified by both researchers (RJ, NC) and added to the framework. These were ‘spiritual wellbeing’ to address references to faith or purpose and meaning in life; ‘concerns about other family members’ such as the effect of the cancer diagnosis on siblings and children; finally, ‘lifestyle information’ to address concerns on where to find reliable information on stress management, nutrition and exercise.
Phase 3—refining the coding framework
MYCaW informal caregiver coding framework
Informal caregiver coding framework
ICG 1. Psychological and emotional concerns of informal caregiver for themselves
a. Depression and low mood
c. The future
d. Sleep problems
e. Concerns about other family members
i. Fear and anxiety
k. Emotional problems
ICG2. Physical concerns of informal caregiver for themselves
a. Energy levels
b. Other physical symptoms to do with being a supporter
c. Physical problems not to do with being a supporter
ICG3. Informal caregi ver concerns about their changing identity
a. Having to adapt to new/different life circumstances
b. Wider social implications
ICG4. Informal caregiver concerns about providing support
a. Providing emotional support
b. Balancing life commitments whilst providing support
c. Maintaining own health whilst providing support
d. Providing other support
ICG5. Informal caregiver concerns about their general wellbeing
a. Spiritual wellbeing
d. Support and time for self
Section 2: Informal caregiver concerns for person wit h cancer
ICG6. Relations hip between informal caregiver and person with cancer
a. Impact on relationship
b. Change in roles within the relationship
c. Difficulty expressing emotions
ICG 7. Informal caregiver concerns about the physical health of person with cancer
a. Impact of conventional cancer treatment
c. Other physical symptoms related to cancer
ICG8. Informal caregiver concerns about the psychological and emotional health of person with cancer
a. Mood changes
b. Fear and anxiety
c. Other psychological or emotional Concerns
ICG9. Practical concerns about being an informal caregiver
a. Information on healthier lifestyle for person with cancer
b. Financial impact or difficulties
ICG10. Informal caregiver concerns about end of life
a. Psychological or emotional impact of end of life
b. Shared experience of mourning or loss and preparing for death
c. Coping after future death of person with cancer
d. Fear of person with cancer dying
Content of the MYCaW informal caregiver framework
We set out to explore ICs’ concerns and to use these data to devise a MYCaW coding framework specifically to represent their concerns. This multicentre study demonstrates the wide-ranging concerns of ICs, and the crucial ability of MYCaW to capture this data. Concerns ranged from ICs’ own psychological and emotional wellbeing and concerns about providing support to the person with cancer, to concerns around the physical health of the person with cancer (see Fig. 2).
The concerns identified are supported by previous research on the impact of a cancer diagnosis on spouses, friends and family members who are in an IC role as they readjust and adapt to the impact of cancer on their lives [12, 21, 22, 26, 39, 40]. Data collected in phase 1 of this research especially captured the reciprocal impact of concerns on the IC and the person with cancer. Appropriate provision of support for the ICs is, therefore, likely to also have reciprocal and positive effects on their own health and wellbeing and that of the person with cancer [41, 42].
The content of the coding framework was also compared against previously published data [11, 12, 28, 42]. Our coding framework fully captured categories identified in other published research, although a more extensive search needs to be carried out to confirm this. Moreover, we identified that ICs wanted to know how to obtain reliable information on lifestyle such as stress management and nutrition and relaxation techniques for themselves and the person they were caring for. This unmet need was also noted when developing the first MYCaW coding framework for people with cancer  and is a category that is not covered in the context of lifestyle changes in any of the outcome measures recently reviewed by Shilling et al. . Five outcome measures in the systematic review  ask people to rate levels of stress, and a further four refer to levels of distress, but this is a different context to ascertain whether people have reliable information to manage their stress levels.
Role of cancer support services
It is important that charities and other organisations providing support to ICs and people with cancer, in the UK and internationally, fully understand the needs of this group. Routine data collection in this way will enable provision of targeted support to ICs who are showing signs of known predictors of increased caregiver burden, and, therefore, increased risk of conditions such as anxiety and depression [43, 44]. The challenge remains as to how to routinely capture and quantify unmet needs in an acceptable and reproducible way, without interfering with the flow of a consultation.
MYCaW has been used internationally as an effective person-centred tool for capturing the concerns of cancer patients, across many complementary and integrative care settings [e.g. 45]. This new IC coding framework enables the same MYCaW questionnaire to be administered, but data for ICs are to be analysed to fully represent their needs. As with the existing MYCaW tool, data can quickly be coded into ‘Supercategories’ only, such as ‘psychological and emotional concerns of supporter for themselves’ and ‘relationship between supporter and person with cancer’, to suit organisations without dedicated resource for qualitative data analysis. More in-depth analysis of the supercategories can be carried using the 40 categories, if resource is available.
Limitations and strengths
This study has many strengths, including capturing data from a wide range of participants of varying ages, from two organisations and multiple locations in the UK. Both PBUK and Cavendish Cancer Care support people with any cancer type so it is likely that a range of cancer types are represented.
A rigorous independent coding process and further refining of codes occurred with each additional dataset to develop a coding framework that truly reflects the concerns and needs of ICs. This form of analyst triangulation allowed for multiple ways to view the data and thorough discussion on the coding process, in addition to strengthening validation of findings.
This framework is aimed at an adult population as opposed to an IC of a child, teenager or young person with cancer; hence, further work is needed to determine how representative the coding is for ICs of these groups. A further limitation is that the framework has only been tested on data from the UK and further international collaboration and testing of the framework is invited.
We were unable to ascertain the cancer type or grade/stage of people with cancer that were being supported across phases 2–3. This may, therefore, have impacted on the concerns identified by ICs and the content of the IC coding framework. Testing the coding framework on several datasets across two organisations, however, allowed for further refinement, therefore strengthening transferability of the coding framework to be used by different cancer organisations. We have not yet compared patient and IC’s MYCaW concerns or scores within dyads, although this would be a valuable next stage of research to understand the reciprocal nature of the dyad relationship in more detail. Finally, we have not compared MYCaW concern types or scores with any specific PROM used to measure caregiver burden. This research would provide more understanding as to whether MYCaW concern scores could be a quick predictor of caregiver burden in a clinical setting.
MYCaW is already an effective person-centred measure of the concerns and wellbeing of people affected by cancer and is used in many complementary and integrative oncology clinics. A qualitative coding framework has now been developed so that the concerns of ICs can be understood in the same holistic way. The external validity of this framework is improved by the inclusion of data from two UK organisations covering many different age groups, locations and cancer types (of the people being supported/cared for).
Despite the existence of several tools for measuring quality of life or burden in ICs, MYCaW is the only person-centred tool specifically designed for capturing the concerns of ICs through their own words. The accompanying IC coding framework means that this data can be analysed using a rigorous and reproducible method, allowing the data to be reported in a standardised way. This will allow the voice of ICs to be equally heard and recognised so that the crucial support they need can be designed and delivered in direct response to their needs. Further research on the content validity of the IC framework in other cancer support centres is welcomed.
The authors would like to thank all the participants who shared their experiences of being an informal caregiver and Michelle Griffiths for her support in formatting the manuscript.
Compliance with ethical standards
All procedures performed in phase 1 of this study was approved by the University of Westminster’s Faculty Research Ethics Committee and has been performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in phase 1. For phases 2 and 3 of this study, formal consent was not required.
Conflict of interest
CF and MK worked at Cavendish Cancer Care and HS and RJ worked at Penny Brohn Cancer Care whilst this research was being carried out.
- 1.Hudson PL, Remedios C, Thomas K (2010) A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliative Care 9(1):17Google Scholar
- 2.Ugalde A, Krishnasamy M, Schofield P (2012) Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study. Support Care Cancer 20(6):1175–1181Google Scholar
- 3.Janda M, Steginga S, Dunn J, Langbecker D, Walker D, Eakin E (2008) Unmet supportive care needs and interest in services among patients with a brain tumour and their carers. Patient Educ Couns 71(2):251–258Google Scholar
- 4.Kim Y, Schulz R, Carver CS (2007) Benefit finding in the cancer caregiving experience. Psychosom Med 69(3):283–291Google Scholar
- 5.Kim Y, Kashy DA, Spillers RL, Evans TV (2010) Needs assessment of family caregivers of cancer survivors: three cohorts comparison. Psycho-Oncology 19(6):573–582Google Scholar
- 6.Maddams J, Utley M, Møller H (2012) Projections of cancer prevalence in the United Kingdom 2010-2040. Br J Cancer 107:1195–1202Google Scholar
- 7.Macmillan Cancer Support/Ipsos MORI (2011) More than a million: understanding the UK’s carers of people with cancer. Available online: https://www.macmillan.org.uk/documents/cancerinfo/ifsomeoneelsehascancer/more_than_a_million.pdf. Accessed 23 Jan 2018
- 8.NAC and AARC Public Policy Institute Caregiving in the US Research Report (2015) Available on line: https://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Final-Report-June-4_WEB.pdf
- 11.Shilling V, Matthews L, Jenkins V, Fallowfield L (2016) Patient-reported outcome measures for cancer caregivers: a systematic review. Qual Life Res 25:1859–1876Google Scholar
- 12.Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology 19(10):1013–1025Google Scholar
- 13.Tan J-Y, Molassiotis A, Lloyd-Williams M, Yorke J (2017) Burden, emotional distress and quality of life among informal caregivers of lung cancer patients: an exploratory study. Eur J Cancer Care. https://doi.org/10.1111/ecc.12691
- 14.Girgis A, Lambert SD, McElduff P, Bonevski B, Lecathelinais C, Boyes A, Stacey F (2013) Some things change, some things stay the same: a longitudinal analysis of cancer caregivers’ unmet supportive care needs. Psycho-Oncology 22(7):1557–1564Google Scholar
- 15.Carlson LE, Ottenbreit N, St PM, Bultz BD (2001) Partner understanding of the breast and prostate cancer experience. Cancer Nurs 24(3):231–239Google Scholar
- 16.Haley WE (2003) Family caregivers of elderly patients with cancer: understanding and minimizing the burden of care. J Support Oncol 1(4 Suppl 2):25–29Google Scholar
- 17.Badr H (2014) Psychosocial interventions for patients with advanced cancer and their families. American Journal of Lifestyle Medicine 10(1):53–63Google Scholar
- 18.Baider L, De-Nour AK (2000) Cancer and couples-its impact on the healthy partner: methodological considerations. In: Baider L, Cooper CL, De-Nour AK (eds) Cancer and the family, 2nd edn. pp 41–52Google Scholar
- 19.Pitceathly C, Maguire P (2003) The psychological impact of cancer on patients’ partners and other key relatives: a review. Eur J Cancer 39(11):1517–1524Google Scholar
- 20.Shilling V, Starkings R, Jenkins V, Fallowfield L (2017) The pervasive nature of uncertainty – a qualitative study of patients with advanced cancer and their informal caregivers. J Cancer Surviv 11:590–603Google Scholar
- 21.Totman J, Pistrang N, Smith S, Hennessey S, Martin J (2015) ‘You only have one chance to get it right’: a qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer. Palliat Med 29(6):496–507Google Scholar
- 22.Northouse L, Templin T, Mood D (2001) Couples’ adjustment to breast disease during the first year following diagnosis. J Behav Med 24(2):115–136Google Scholar
- 23.Foster C, Myall M, Scott I, Sayers M, Brindle L, Cotterell P, Addington-Hall J, Hopkinson J, Payne S, Robinson J (2015) ‘You can’t say, “what about me?” I’m not the one with cancer’: information and support needs of relatives. Psycho-Oncology 24:705–711Google Scholar
- 24.Grbich C, Parker D, Maddocks I (2000) The emotions and coping strategies of caregivers of family members with a terminal cancer. J Palliat Care 17(1):30–36Google Scholar
- 26.Kim Y, Given BA (2008) Quality of life of family caregivers of cancer survivors: across the trajectory of illness. Cancer 112(Suppl):2556–2568Google Scholar
- 27.Cameron JI, Franche RL, Cheung AM, Stewart DE (2002) Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94(2):521–552Google Scholar
- 28.Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW (2010) Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin 60(5):317–339Google Scholar
- 29.Macmillan Cancer Support (2016) Under pressure: the growing strain on cancer carers. Available online: https://www.macmillanorguk/documents/campaigns/under-pressure-the-growing-strain-on-cancer-carers-macmillan-cancer-support-september-2016.pdf
- 30.Zollman C, Walther A, Seers H, Jolliffe R, Polley M (2017) Integrative whole person oncology care in the UK. J Natl Cancer Inst 52:26–28Google Scholar
- 31.Paterson C, Thomas K, Manasse A, Cooke H, Peace G (2007) Measure Yourself Concerns and Wellbeing (MYCaW): an individualized questionnaire for evaluating outcome in cancer support care that includes complementary therapies. Complement Ther Med 15(1):38–45Google Scholar
- 32.Polley MJ, Seers HE, Cooke HJ, Hoffman C, Paterson C (2007) How to summarise and report written qualitative data from patients: a method for use in cancer support care. Support Care Cancer 15(8):963–971Google Scholar
- 33.Seers H, Gale N, Paterson C, Cooke HJ, Tuffrey V, Polley MJ (2009) Individualised and complex experiences of integrative cancer support care: combining qualitative and quantitative data. Support Care Cancer 17(9):1159–1167Google Scholar
- 34.Jolliffe R, Seers H, Jackson S, Caro E, Weeks L, Polley MJ (2015) The responsiveness, content validity and convergent validity of the Measure Yourself Concerns and Wellbeing (MYCaW) patient-reported outcome measure. Integr Cancer Ther 14(1):26–34Google Scholar
- 35.Polley M, Jolliffe R, Boxell E, Zollman C, Jackson S, Seers H (2016) Using a whole person approach to support people with cancer: a longitudinal, mixed-methods service evaluation. Integr Cancer Ther:1–11Google Scholar
- 36.Polley et al. (2013) Service evaluation of living well with the impact of cancer courses, Penny Brohn Cancer Care. Available online:<http://www.pennybrohncancercare.org/> [Accessed Nov 2015]
- 37.Seers HE (2010) National cancer survivorship initiative, active and advanced workstream, living well subgroup scoping exercise: ‘Living well with, and beyond cancer’. Available online:<http://www.ncsi.org.uk/wp-content/uploads/Living-Well-Report.pdf> [Accessed Nov 2015]
- 38.Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101Google Scholar
- 39.Segrin C, Badger TA (2014) Psychological and physical distress are interdependent in breast cancer survivors and their partners. Psychol Health Med 19(6):716–723Google Scholar
- 40.Li QP, Mak YW, Loke AY (2013) Spouses’ experience of caregiving for cancer patients: a literature review. Int Nurs Rev 60(2):178–187Google Scholar
- 41.Kim Y, Kashy DA, Wellisch DK, Spillers RL, Kaw CK, Smith TG (2008) Quality of life of couples dealing with cancer: dyadic and individual adjustment among breast and prostate cancer survivors and their spousal caregivers. Ann Behav Med 35(2):230–238Google Scholar
- 42.Hodges LJ, Humphris GM, Macfarlane G (2005) A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their Carers. Soc Sci Med 60(1):1–12Google Scholar
- 43.Maguire R, Hanly P, Hyland P, Sharp L (2016) Understanding burden in caregivers of colorectal cancer and survivors: what role do patient and caregiver factor play? Eur J Cancer Care. https://doi.org/10.1111/ecc.12527
- 44.Guerriere D, Husain A, Zagorski B, Marshall D, Seow H, Brazil K, Kennedy J, Burns S, Brooks H, Coyte PC (2016) Predictors of caregiver burden across the home-palliative care trajectory in Ontario, Canada. J Palliat Care 24(4):428–438Google Scholar
- 45.Frenkel M, Cohen L, Peterson N, Palmer JL, Swint K, Bruera E (2010) Integrative medicine consultation service in a comprehensive cancer center: findings and outcomes. Integr Cancer Ther 9(3):276–283Google Scholar
Open Access This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (http://creativecommons.org/licenses/by-nc/4.0/), which permits any noncommercial use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.