Course material

1. Complete Medical evidence based Disc (WALDEN)
Transnational Mothers Crossing the Border and Bringing Their Health Care Needs
Sternberg, Rosa Maria, PhD, RN;Barry, Charlotte, PhD, RN Journal of Nursing Scholarship;
Mar 2011; 43, 1; ProQuest Central pg. 64 Reproduced with permission of the copyright
owner. Further reproduction prohibited without permission. Reproduced with permission
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permission. Reproduced with permission of the copyright owner. Further reproduction
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without permission. Complementary Therapies in Clinical Practice 16 (2010) 132–137
Contents lists available at ScienceDirect Complementary Therapies in Clinical Practice
journal homepage: www.elsevier.com/locate/ctnm Emerging from depression: The
experiential process of Healing Touch explored through grounded theory and case study
Rosalie Van Aken*, Beverley Taylor Southern Cross University, P.O. Box 157, Lismore, NSW
2480, Australia a b s t r a c t Keywords: Depression Healing Touch Grounded theory Case
study This study aimed to explore and analyse the experiential process of Healing Touch
(HT) for people with moderate depression. Grounded theory and case study were chosen as
the most appropriate methodology to address the objectives of the research. The grounded
theory analysis uncovered the basic psychosocial problem, the stages of the process of
emergence from depression and the strategies used within that process. The middle range
theory describes the experiential process for people with moderate depression in four
stages: belief in practitioner, self and future self, integrating all aspects of self, accessing
inner strength and resources and engaging with life. The case study aspect of the research
entailed placing the information gathered during the HT sessions on a trajectory for each
person thereby honouring each individual’s process. Ó 2009 Elsevier Ltd. All rights
reserved. 1. Introduction There is an increasing concern about the incidence of depression
and the costs in terms of human suffering.1 It is reported that depression affects over 300
million people worldwide and accounts for 10% of productive years lost.2 The burden of
depression on the individual and society is of major concern. In a study modelled on the
World Health Organisation Burden of Disease Study, Mathers, Vos, Stevenson and Begg3

2. found that depression was the top ranking cause of non-fatal disease burden in Australia
causing 8% of total years lost to disability. There is a general increase in the numbers of
people choosing complementary therapies to use alongside conventional medical
treatment. In fact Jonas and Levin4 assert that visits to complementary therapists in the US
increased from 400 million in 1990 to 600 million visits in 1997. One prevalence study
found that rates of use of complementary therapies to be 40% in the US, 25% in the United
Kingdom, 50% in Australia, Germany and France with these numbers predicted to rise.5
Jorm, Christensen, Griffiths, and Rodgers6 state that a survey, in the US, indicated that
people with depression have a higher use of complementary therapies than the general
population. Badger and Nolan7 found, in their United Kingdom study, that two thirds of
participants used complementary therapies in their recent depressive illness.
Complementary therapies used to treat * Corresponding author. Tel.: þ61 2 6620 3128. E-
mail address: rosalie.vanaken@scu.edu.au (R. Van Aken). 1744-3881/$ – see front matter Ó
2009 Elsevier Ltd. All rights reserved. doi:10.1016/j.ctcp.2009.11.001 depression are herbs,
diet, exercise, self-help and hand mediated energy therapies, such as Healing Touch (HT).6
This research focused on HT. 2. Healing Touch Healing Touch is a philosophy and an ancient
healing art. It is defined as an energy based therapeutic approach to healing, which uses the
hands to balance and harmonise the human energy system, thereby placing the client in a
position to self-heal.8 Healing Touch is a nursing education program in the US and Australia,
although anyone can learn the techniques as they are simple and non-invasive. Health care
professionals, members of the allied health care team and pastoral care workers use HT
extensively in their practice.8 In Australia, HT is used in many diverse settings, such as
hospitals, nursing homes, HIV-AIDS clinics, hospices, private practices and family homes.9
Anecdotal and research evidence support the use of HT in reducing anxiety and stress,
restoring and maintaining vitality, enhancing spiritual development, promoting self-
empowerment, supporting the life transition process, preparing for medical treatments and
procedures and accelerating wound healing.10 3. Literature The literature highlights that
depression has been recognised as a condition of humanity since the beginning of time.11
Over the last decade there has been a sharp increase in the reported numbers of R. Van
Aken, B. Taylor / Complementary Therapies in Clinical Practice 16 (2010) 132–137 people
with depression and the extent of disability caused by chronic disease in combination with
the loss of life through suicide has bought the issue to the forefront of health authorities’
agendas and to the attention of health professionals.12 The Beyond Blue strategy in
Australia and the Strategic Plan for Mood Disorders in the US are some of the responses to
these concerns.12,13 The number and types of available treatments for depression
indicates the complexities of not only the disorder, but also the individuality of the sufferer.
There has been a concerted effort to provide information about depression in response to
the finding that only 50% of people with depression seek treatment.14,15 Solomon11
relates how he received hundreds of letters from people in nine countries sharing the
alternatives that had been effective for relieving depression for them. There has been
research in some areas of complementary therapy for treating depression, such as herbs,16
exercise17 and diet.6 For example, one randomised control study of St. John’s Wort found it
as effective as antidepressant medication for people with moderate depression.16 Phillip,

3. Kohnen and Hiller16 concluded that a prescribed dose of St. Johns Wort could be
considered as an alternative first choice of treatment for people with moderate depression.
There has been little research published on energy based therapies for depression.
Although no published study could be located addressing the topic of Therapeutic Touch
(TT) and depression, there have been several studies where participants reported an
increased feeling of well being,18 reduction in grief19 and changes in mood.20 Bradway21
performed a quantitative study, in 1999, on the effects of HT with 30 participants, who
scored in the moderate to severe range for depression on the Beck Depression Inventory
(BDI). The results demonstrated that members of the treatment group were significantly
less depressed than the control group after the three week treatment period and they
remained less depressed after a further four weeks.20,21 No published qualitative studies
were found on 5 databases that directly addressed the area of energy medicine and
depression, for example TT, HT and depression. 4. Methodology The focus of this inquiry
was to explore the perceptions of participants, with moderate depression, of their
experience and the process of Healing Touch. To obtain the participants’ perception
qualitative strategies were chosen, specifically grounded theory and case study. Several
authors have explored the issues of research into complementary therapies.21–24 All three
articles highlight the idea that although conventional/modern medicine uses randomised
control trials as a research tool, qualitative approaches are more appropriate when
studying complementary therapies. 4.1. Grounded theory Grounded theory is a research
methodology with the primary purpose of developing a theory systematically from an array
of data, gathered in the natural setting24,25 through the process of constant comparison
analysis.25,26 There is a prescribed set of procedures within grounded theory to guide the
researcher, which provides a rigorous framework for the research process, so it is seen as
both method and methodology.27 Grounded theory provided data and theories relevant to
the area of research28 while remaining respectful of the participants29 and giving them a
voice. The goal of this study was not to verify or test existing theories but to understand the
process for people with depression30 133 experiencing HT. Therefore grounded theory
allowed the development of a substantive theory of the process and experience for the
participants. 4.2. Case study The researcher decided to gather data in the broadest possible
manner, therefore, the case study approach as described by Merriam31 has been chosen as
the most appropriate to support grounded theory. Merriam31 believes that qualitative case
study research that focuses on discovery, insight and understanding from the perspective of
the participant, offers the greatest contribution. The case study method carried out in this
research provided not only the participants’ ‘stories’, it also gave an account of the
experience of Healing Touch, energetic, emotional, mental and physical for the participants
over time. 5. Data collection Data collection took place over a period of six months with
three groups of participants until data saturation occurred. It was also useful to have three
groups of participants to allow for the pauses in data collection to commence analysis
before collecting more data, as well as for accessing the diversity of the participants and
their backgrounds.32 Full ethical processes preceded the commencement of the project.
Fifteen participants were self-referred, with moderate depression being verified by the BDI
during the first session. Each participant was given a diary to use throughout the data

4. collection period. Five weekly sessions of HT were scheduled for each participant, which
included a pre-session check in, energy assessment, HT interventions, post-energetic
assessment and postsession check in. The Healing Energy and Life Through Holism tool
(HEALTH) tool was utilised to collect data.33 Philpy and Hutchison33 describe the HEALTH
tool as a ‘modular holistic assessment tool that reflects most known aspects of physical,
emotional–mental, social and spiritual human beings, the Healing Touch process and the
environment.’ (p. 21). This tool contains detailed history, intake, assessment pre- and post-
session, and check in pre- and postsession forms. HT interventions were chosen by the
researcher on the basis of the study by Bradway21 and extensive personal experience
working with people with depression. One or a combination of the following techniques was
used: chakra connection,34 magnetic clearing,35 chakra spread,8 modified mind clear,36
and magnetic passes both hands in motion and hands still.35 Each session lasted
approximately an hour and would include two or three of the above techniques. On the sixth
week an unstructured interview took place and a further BDI was completed for all
participants. Diaries were also reviewed during the last session. Only two participants
shared what she/he had written. Although three of the participants stated that they found it
useful to write down their experiences, they did not feel comfortable sharing their diary.
The remainder of the participants said that they did not write down any feelings and
thoughts. 6. Data analysis Two techniques were used for data analysis in this study. The first
was constant comparative analysis from grounded theory concentrating on the process of
HT and depression. The second was case study concentrating on the individual experience
of HT for each participant. 134 R. Van Aken, B. Taylor / Complementary Therapies in
Clinical Practice 16 (2010) 132–137 6.1. Grounded theory Throughout the data collection
period constant comparative data analysis was performed. This approach to data analysis is
a cyclical process where the data analysis guides further data collection, so this analysis
method can be seen as a way to generate data as well as analyse it. As the data was collected
from the HT sessions and the first two interviews, the transcripts were typed and the data
was coded. The process of sorting the increasing number of codes into concepts, which are
the precursors to the categories, was then commenced. Glaser37 named this process
substantive coding. The concepts were then named and used as headings under which to
collect the codes. Once there was no new material surfacing, the process of further sorting
these concepts into categories began. This required more theoretical processing where
literature was used to begin to make these connections on a more theoretical level. Glaser37
named this process theoretical coding, where the various concepts are used to begin
integrating them into a theory. Categories are analytical and involve conceptualisation of
key features of incidents that took place in the data.38 For example, the category integrating
all aspects of self reflects the codes within that category and also reflects a key step in the
path to emerging from depression. interviews. The trajectory presented at a glance, views of
the experience for each participant. As stated by Elliott39 ‘a case study research approach
enables a detailed examination of a single ‘case’ or ‘unit’ within a real life and contemporary
context using multiple data sources’ (p. 35). This created a large amount of data to condense
into an easy to scan format. It was interesting to note that all of the participants
demonstrated a reduced score in the BDI at the completion of the research. Although the

5. purpose of this research was not intended to prove that there would be a reduction in
depressive symptoms it is important to note the changes. The largest change was 27 points
and the smallest 10 points. 6.3. Development of theory The patterns noted in the case study
section both energetic and shared experiences were added to the codes and categories
developed from the constant comparative processes. In keeping with the constant
comparative method, data analysis and collection occurred simultaneously with the codes,
categories and constructs, uncovered in the early analysis, guiding the ensuing data
collection. Simultaneously, the literature was examined to support the categories as they
surfaced. 7. Results 6.2. Case study In the case study section of the analysis schematic
trajectories were produced for each participant, thus the individual experience of HT for
each participant was preserved in addition to the overall process being elucidated in the
constant comparative analysis. The data for the trajectories came from the HEALTH tool
personal history profile, from conversations, from HT sessions and The core problem or
basic psychosocial problem, disconnection, became clear very early in the process and the
literature was then examined for supporting evidence. The core category or basic
psychosocial process, emerging from depression, really only became clear once all of the
material, codes, concepts and categories had been placed on boards. The core category
became apparent after the material had been organised and reorganised Fig. 1. Overview of
the basic psychosocial problem, participant data, codes, concepts, categories and basic
psychosocial process or core category. R. Van Aken, B. Taylor / Complementary Therapies
in Clinical Practice 16 (2010) 132–137 several times. Glaser37 describes the core category
as that which ‘accounts for most of the variation in a pattern of behaviour’ (p. 93). See Fig. 1,
for an overview of the basic psychosocial problem, participant data, codes, concepts,
categories and basic psychosocial process or core category. 7.1. Basic psychosocial problem
The issue of disconnection was a recurring theme in this research although the word itself
may not have been used. For example, one of the participants, Tansy stated: ‘twelve months
ago my research was so important, now when my supervisor attempts to discuss it with me
I cannot relate to what he says’. From the literature, Solomon11 shares his feeling of
disconnection during a depressive episode as ‘loss of feeling, a numbness had affected all of
my human relationships’ (p. 45). He goes on to reveal that he attempted to allay these
feelings by attending parties which he did not enjoy, meet with friends with whom he felt
unable to connect even purchased items which provided no pleasure and concludes ‘I felt
the disconnection slowly but relentlessly increasing’11 (p. 45). 7.2. Codes, concepts and
categories The codes, categories and concepts are presented in linear fashion for
convenience but it is important to keep in mind the back and forth activities. Within each of
the four categories there were two concepts and four codes. The four codes within the
category of believing in the practitioner, self and future were understanding, safety, trust
and positive anticipation. The codes of understanding and safety were grouped under the
concept of sense of presence. The codes of trust and positive anticipation were clustered
under the concept spirit of hope. The two concepts came together under the category of
believing in practitioner, self and future. Within the category integrating all aspects of self
the codes were body awareness, spiritual awareness, mental harmony and emotional
harmony. The codes of body awareness and spiritual awareness were grouped under the

6. concept of sense of connection. The codes of mental harmony and emotional harmony were
clustered under the concept sense of congruence. The two categories came together under
the category of integrating all aspects of self. The four codes within the category accessing
inner strength and resources were found to be heartened, healing, clarity and acceptance.
The codes of heartened and healing were clustered under the concept of sense of
wholeness. The codes of clarity and acceptance were grouped under the category sense of
knowing. The two categories came together under the concept of accessing inner strength
and resources. The final category of engaging with life also had four codes which were the
ability to be involved, looking outside, motivation and embracing change. The codes of the
ability to be involved and looking outside were grouped together under the category of
sense of readiness. The codes of motivation and embracing change were clustered under the
category sense of direction. The two categories came together under the concept of
engaging with life. 7.3. Basic psychosocial process Once the codes, concepts and categories
were clear and the literature in those areas had been overviewed, the basic psychosocial
problems and basic psychosocial process was sought. The basic psychosocial problem has
been discussed earlier in this 135 section. All data were again reviewed to search for the
basic psychosocial process. Much of the interview data pointed to a process of moving out of
depression. For example Annabel described depression as a dark and damp tunnel. In the
final interview she stated: ‘Then the periods of light in the tunnel became more frequent
and the dampness had disappeared and I could feel firm ground under my feet.I can’t
remember when it happened but I could see.well see the end of the tunnel and one day I
was outside the tunnel in the sunshine’. When reviewing the four categories believing in
practitioner, self and the future, integrating all aspects of self, accessing inner strength and
resources and engaging with life, the possibility that this was a process leading the person
from being depressed to not being depressed became evident. Therefore the four categories
become stages of emerging from depression. The naming of the basic psychosocial process
or core category as emerging from depression became clear. 7.4. Theory of emerging from
depression In terms of a middle range theory generated by this research by grounded
theory methods and processes, it can be claimed that the experiential process of Healing
Touch sessions, for people with moderate depression, occurs in four stages. The first two
stages partially address the basic psychosocial problem of disconnection from self/others
and the world. Firstly, believing in the practitioner, self and the future provides the
opportunity to experience understanding, safety, trust and positive anticipation. This first
stage can be seen as the person opening to the reconnection to self through a sense of
presence and spirit of hope. Secondly, integrating all aspects of self continues the
reconnection process with the experiences of body awareness, spiritual awareness, mental
harmony and emotional harmony. In the second stage the person is preparing to begin to
emerge from depression process through a sense of connection and a sense of congruence.
The final two stages complete the process of emerging from depression and reconnection
with self, others and the world. The third stage, accessing inner strength and resources,
allows the experience of feeling heartened, healing, acceptance and having clarity. During
this stage the person is able to mobilise their inner strength through a sense of wholeness
and a sense of knowing. In the final stage the person begins engaging with life with the

7. experiences of the ability to be involved, looking outside, being motivated and embracing
change. The person is able to develop strategies to complete their emergence from
depression through a sense of readiness and sense of direction in this final stage. See Fig. 2
for an overview of the substantive theory of emerging from depression. 8. Discussion The
substantive theory, emerging from depression, has the potential to empower people with
moderate depression. Quinn40 asks the question ‘How can we turn all of humanity into
healers?’ (p. 556). She asserts that offering people the tools to be their own healers and to
work in ‘right relationship with ourselves and with our environment’ is an important
step40 (p. 556). For example, teaching people how to work with their own energy field with
hands on techniques and other strategies such as colour and nature would be a step toward
empowering the person to maintain biofield integrity. This could be a way of preventing
further depressive episodes. 136 R. Van Aken, B. Taylor / Complementary Therapies in
Clinical Practice 16 (2010) 132–137 Fig. 2. Overview of the substantive theory of emerging
from depression. For people with depression being aware that emergence from that
depression is possible and that an energy therapist may monitor the process and the person
can contribute to their own recovery is of benefit in itself. For example, Amber felt
empowered by the changes to the depressive state that she had had for 13 years and ‘knew’
that the condition could be controlled. The substantive theory has implications for the
treatment of people with depression using energy based therapies. It provides a clear map
for holistic nurses and Healing Touch practitioners to use when assisting people in their
emergence from depression. The implications of the theory of emerging from depression
have the potential to be used with other conditions, with similar energy patterns and by the
person themselves to prevent relapse. Holistic nurses and other practitioners caring for all
dimensions of the individual may use the theory of emerging from depression with any
condition where the energy field is closed. Chronic conditions such long-term pain may also
engender a disconnection from self so the Healing Touch techniques used in this study may
be applied to assist the person to become reconnected. People with depression may use the
theory by monitoring their own field and working with the HT techniques on themselves
and with each other. 8.1. Limitations This research is judged against qualitative criteria,
which is context dependent therefore no attempt will be made to access the trustworthiness
using quantitative criteria. Issues of credibility, auditability were addressed during the
research. The creditability of the theory itself was addressed using the criteria of Glaser and
Strauss.26 Even though the project did not attempt to analyse cause and affect relationships
the qualitative nature of the project could be seen as a limitation by researchers seeking to
make direct links between HT and depression. It was difficult to ascertain ahead of time the
exact number and frequency of HT sessions required. On reflection a follow up Healing
Touch session one month after the completion of the interview could have been offered.
This would have given the energy field of the participant a boost as well as maintaining
grounding and connection to the earth and the environment. I found that several
participants requested this follow up as they had what Desiree called ‘a flat spot’. Several
other participants felt they needed a top up and have continued to have Healing Touch
sessions. Even though the number of sessions proved beneficial the project did not attempt
to project an ideal number of maintenance HT sessions to maintain energetic balance. 8.2.

8. Future research Further research with different populations of people with depression
using the model, emerging from depression, will provide information on the usefulness of
the model in those populations. One group who could benefit from early intervention is
young people aged between 13 and 20, as this is the age group where it was found the rates
of depression is increasing at an accelerated rate worldwide.41 9. Conclusion With the
incidence of depression continuing to rise1 and the small number of people with depression
receiving treatment6 options for treatment are required. A range of complementary
therapies may well be offered in addition to the conventional treatments available. Hand
mediated energy therapies have been R. Van Aken, B. Taylor / Complementary Therapies in
Clinical Practice 16 (2010) 132–137 found to be effective in the area of general wellbeing18
and grief19 but only one study related directly to depression has been found. The study by
Bradway,21 while demonstrating the effectiveness of Healing Touch in alleviating the
symptoms of depression, left unexplored the experiential process for the participants. The
research presented in this article lays the foundation for the body of knowledge about the
experiential process of Healing Touch for people with depression. For the 15 moderately
depressed participants in this study disconnection from self was the basic psychosocial
problem and emerging from depression was a four stage process. These stages were,
believing in the practitioner, self and the future; integrating all aspects of self; accessing
inner strength and resources; and engaging with life. This project has been a journey of
discovery, healing, relationship and love. For someone who has been depressed the healing
of, relationship with and finally the love of self are vital for that emergence from depression
to occur. In conclusion a quote from Solomon11 on the topic of love and depression (p. 442)
‘Curiously enough, I love my depression. I do not love experiencing my depression but I love
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2003;289(23):3095–105. Review Conducting qualitative research with palliative care
patients: applying Hammick’s research ethics wheel Lisa S Whiting, Peter S Vickers Abstract
This paper discusses the particular ethical issues that are present when attempting to
undertake research involving patients accessing palliative care for cancer. It focuses on the
use of Hammick’s research ethics wheel (REW) in relation to a research study undertaken
by the authors. Applying the REW enabled the authors to identify and incorporate the
ethical issues and dilemmas inherent within such a study at a practical level. Ethical reasons
for undertaking research with such vulnerable participants are explained and justified with
reference to the REW. Ethical considerations are crucial to any research study involving
human participants, but particularly so when dealing with participants who are as
vulnerable as those in a palliative care setting. The use of the REW enabled the authors to
feel confident that all such concerns had been identified before data collection began. Key
words: Ethics l Palliative care l Qualitative research l Research ethics wheel T Lisa S Whiting
is Professional Lead, Children’s nursing, University of Hertfordshire, College Lane, Hatfield,
Hertfordshire, and Peter S Vickers is Visiting Lecturer, Children’s Nursing, University of
Hertfordshire, College Lane, Hatfield, Hertfordshire, United Kingdom Correspondence: Peter
Vickers p.s.vickers@herts.ac.uk 58 he ethical aspects of all research must be thoroughly
considered in order to establish the implications of the study. It is particularly important to
ensure safe research that seeks the participation of people receiving palliative care (Morse
and Field, 1996; Haber, 2002). This article will examine the ethical issues that should be
considered before undertaking research with this vulnerable group of individuals. Initially,
key factors will be highlighted; this will be followed by an introduction and discussion of the
research ethics wheel (REW) (Hammick, 1996) (Figure 1) a comprehensive tool that
facilitates the researcher’s scrutinization of underpinning ethical considerations. Ethical
issues became a prominent focus for the authors when we were commissioned to undertake
a qualitative research study (Vickers and Whiting, 2008) that considered the needs of adults
with cancer, and their families, who were accessing palliative care services in an area in the
east of England; this was undertaken by means of semi-structured interviews. The article
will also relate the discussion of the REW to the comple- tion of the Vickers and Whiting
(2008) study. It has been suggested that the undertaking of research within palliative care
is challenging (Arraf et al, 2004; Hopkinson et al, 2005; Keeley, 2008) and that it has a
specific moral dimension (Janssens et al, 1999; Hermsen and ten Have, 2001). Polit and
Hungler (2002) point out that conducting research with people who are dying is
problematic because their vulnerability results from the fact that they may be at high risk of
unforeseen and unintended side effects because of their particular circumstances.
Consequently, Polit and Hungler (2002) feel that these patients need a higher degree of
protection than is given by the general framework and ethical research guidelines. Karim
(2000) highlights seven particular concerns: �Patients often experience complex

11. symptoms as well as mental and physical exhaustion; they may not be in any condition to be
participants in a research study �The research, particularly if it raises potentially painful
issues surrounding death, may result in patients experiencing psychological distress
(Aranda, 1995) �Although willing to take part in the research, patients might find it
increasingly difficult to do what is being asked of them. Karim (2000) points out that there
may well be cognitive and physical deterioration that could affect their ability to complete
questionnaires, quality of life scales, or even to be interviewed. Cognitive deterioration may
also lead to a reduced decision-making capacity (Pereira et al, 1997), this is particularly
crucial in terms of giving informed consent �Patients who have not yet reached the
terminal phase of their illness could have other demands on their time, for example,
multiple outpatient appointments, as well as regularly moving between home, hospital and
hospice. This may mean that trying to find time for interviews or to complete
questionnaires could be problematic �Patients who are relatively well may not find it
International Journal of Palliative Nursing 2010, Vol 16, No 2 Review easy or convenient to
spend their valuable remaining time participating in a research study. In addition, family
members may raise objections since they themselves want to spend time with their relative.
Addington-Hall (2002) points out that questions have been raised about whether it is
ethically sound to ask patients accessing palliative care to participate in research, as this
could risk depriving them of energy and time. Conversely, it is important from a research
perspective to involve this group of patients in order to enhance future nursing practice �
Patients may be trying to distract themselves from their symptoms, and involving them in
research could focus them back on their illness and thoughts of dying �Finally, patients
might sign a consent form but only because they fear that refusing to do so may have
implications for the care they are receiving. As Randall and Downie (1999) point out, this
does raise the question as to whether any patient participation in health research can ever
be voluntary, because there will always be a potential fear that by not taking part, the
patient may be penalized in some way. Hammick (1996) comments that researchers have
an ‘obligation’ to assess the ethical implications of studies, and to aid this process she
devised the REW. This all-inclusive tool facilitates self-scrutiny of personal ethical
principles and will now be used as a framework to analyse and evaluate the diversity of
ethical issues and how they pertain to patients receiving palliative care. The wheel
comprises four quarters, each containing four segments, none of which assume more
importance than any other (Hammick, 1996). The four key aspects of the wheel will be
addressed in turn: �Principles of research using people �Duties of a researcher �Nature
of the outcome of the research �Practicalities of the research process. Principles of
research using people The first quarter of the wheel addresses the principles pertaining to
the use of people as participants. It covers four main areas which are addressed below:
Scientific basis According to the Declaration of Helsinki (World Medical Assembly, 1989),
research should ‘conform to generally accepted scientific principles’. Although authors such
as Hammick (1996) have discussed the value of studies conducted within the natural
sciences, she suggests that these International Journal of Palliative Nursing 2010, Vol 16, No
2 Review Scien tific B asis Kn ow led ge ility ipl es ct spe e al R u Eq Codes o f laws Respect
Aims uences Ha za rd s ty co nt iali ut nse ent O Co nfid N Conseq ici art -p on my Autono

12. Veracity n io pat Co International Journal of Palliative Nursing 2010, Vol 16, No 2 Ab enefit
Risk v B This segment of the REW states that everyone should receive equal respect and
treatment, a view supported by Beauchamp and Childress (2001). Burns and Grove (2005)
say that in any research, the selection and treatment of all participants throughout the study
must be fair. They suggest that a number of points be taken into consideration (Table 1).
The conduct of studies frequently prompts researchers to consider whether small gifts
should be given to participants as a token of respect and thanks. Interestingly, Gysels et al
(2008: 347) investigated the motivation of patients receiving palliative care to participate in
research studies; a Pr Scrutiny Equal respect inc ct es The REW suggests that a study should
only be conducted if it aims to increase the body of knowledge for a particular discipline.
Although Hammick (1996) acknowledges that replication studies are appropriate in certain
circumstances, the researcher should still be aiming to uncover new knowledge. She
emphasizes the necessity of carrying out a comprehensive literature search before
commencing a study to identify the scope of previous investigations—considerable time
was invested in our searching process, this yielded a range of pertinent literature (Ingleton
et al, 2003; Soothill et al, 2003; National Institute for Health and Clinical Excellence, 2004;
Slater and Freeman, 2004; Andershed, 2006). Despite this, it became clear that the practical,
physical and psychosocial needs of adults (and their families) who were receiving palliative
care warranted further examination within the unique geographical area within which the
research was to take place. Pr s tie li ica urc Knowledge Figure 1. The research ethics wheel
(Hammick, 1996) so Re researchers must be able to ‘defend the scientific principles of their
investigative work’, particularly when faced with ethics committee approval. It is therefore
crucial that, before commencing a study, researchers fully consider the methodological
approach that will be used; this study drew upon a hermeneutical phenomenological
approach (Heidegger, 1962); phenomenological research is underpinned by the idea that
the reality of any situation is that experienced by the participants. This approach was
therefore felt to be appropriate for the identification of the perceived needs of patients (and
their families) who were receiving palliative care. Semi-structured interviews were
conducted with patients and carers—it was thought that these methods would: �Yield the
richest and most valuable data �Allow the participants to explore, identify and express
their needs. ty Du me s the findings revealed that there were four key influential factors: �
Altruism �Gratitude and concerns about care �The need to have somebody to talk to �
The need for information or access to services. An affinity was certainly felt with the above
points; the participants and their carers all made it clear that they wanted to contribute to
the development of new knowledge and were certainly not expecting a ‘reward’. In fact the
provision of a gift could have felt uncomfortable and Table 1.The right to fair treatment
Points for consideration Degree of achievement for this study The participants should only
be Achieved. Clear inclusion and selected for reasons that are directly exclusion criteria
were formulated related to the issue being studied all participants were adults The
researcher and participant should have a specific agreement about the degree of
participation that is involved. This should be respected and not changed during the study
unless consent is obtained from individual participants Achieved. No alterations were made
to the degree of participation The researcher has a responsibility to be on time for

13. interviews and not to keep the participants waiting Achieved. The researchers arrived
approximately 10 minutes before each interview Any benefits that are promised such as a
copy of the findings must be provided Achieved. Summaries of the final report have been
distributed to those who requested a copy Adapted from: Burns and Grove, 2005 61 Review
inappropriate for this group of participants; each person was, however, sent a thank you
letter and a summary of the final report. Respect autonomy Hammick (1996) states that the
respect of people’s autonomy is a fundamental principle of research. She suggests that it is
closely linked to the issue of informed consent (a separate segment of the REW) and relates
to the researcher allowing participants to decide of their own free will whether or not to
become involved in the study. This is particularly important for those receiving palliative
care as their time is so precious. In our research, patients were randomly selected from a
database; they were then initially approached by their nurse who discussed the study with
them and provided written information; if the patient/ family wished to participate, they
were able to consider this at their leisure and contact the principal researcher via a self-
addressed envelope. The specialist palliative care team did not know which
patients/families were taking part in the study—an important factor, as this has the
potential to impact upon care and management. The duties of the researcher The second
quarter of the REW focuses on the responsibilities of the professional conducting the study
towards the people who are invited to participate. The four issues raised will be considered.
Veracity and consent Hammick (1996) discusses veracity and consent together. She says
that although they are closely related to the segment of the wheel entitled Table 2. Informed
consent: Information to be given to participants Information to be given to participants
Degree of achievement for this study Introduction of research activities. This should clearly
indicate how the study is to be conducted Achieved. Written and verbal information was
provided. In addition, the participants had the researchers’ contact details, should they wish
to clarify any issues Statement of research purpose. This should include both immediate and
long term goals Achieved, both verbally and in writing (the latter via the provision of an
information sheet) Selection of research participants. Details need to be included explaining
how and why the participants have been chosen Achieved, both verbally and in writing (the
latter via the provision of an information sheet) Explanation of procedures. Information
concerning how and when these are to be carried out, and in what setting, should be given
Achieved, both verbally and in writing (the latter via the provision of an information. sheet)
Description of potential benefits and risks to the individual participants Achieved, both
verbally and in writing (the latter via the provision of an information sheet) Disclosure of
alternative procedures or treatment Not applicable to this study Assurance of
confidentiality Achieved, both verbally and in writing (the latter via the provision of an
information sheet) Offer to answer questions. The researcher must make it clear how
he/she can be contacted Achieved. There was an opportunity to ask questions, initially with
the nurse, then with the researchers, both via telephone contact and prior to the conduction
of the interview. In addition, the participants had the researchers’ contact details, should
they wish to clarify any issues Non-coercive disclaimer. This should state that participation
is voluntary. However, the completion of a questionnaire can be taken as consent Achieved.
Written consent was obtained from each participant Option to withdraw Achieved. This was

14. verbally expressed as well as being included within the participant information sheet
Consent to incomplete disclosure. This is only relevant if participants are not to be totally
informed about the study as it may influence their behaviour This issue was not applicable
to the study Adapted from: Burns and Grove, 2005 62 International Journal of Palliative
Nursing 2010, Vol 16, No 2 Review { Unless participants are provided with all the facts
about a study, it is impossible for them to provide informed consent | ‘respect autonomy’,
this encourages the researcher to think about the ethics of a study from different angles.
Veracity is concerned with truth telling, and unless participants are provided with all the
facts about a study, it is impossible for them to provide informed consent (Hammick, 1996).
Additionally, truthfulness links with the principle of fidelity, or developing trust, necessary
for obtaining accurate data (Parahoo, 2006); consequently, every effort should be made to
build a rapport with the participants—in the authors’ study, this was done via the telephone
and in the patient’s home before the interviews were conducted. Parahoo (2006: 469)
describes informed consent as: ‘The process of agreeing to take part in a study based on
access to all relevant and easily digestible information about what participation means, in
particular, in terms of harms and benefits.’ Gaining the informed consent of participants is
essential (Locke et al, 2000; McHaffie, 2000) and has particular significance when those
receiving palliative care are participating in a study (Arraf et al, 2004; Parkes, 2006). Burns
and Grove (2005) suggest that certain details should be given to each person before consent
is obtained (Table 2). In the authors’ study, the consent process was an ongoing, dynamic
process, with written consent being obtained some weeks before the interview, and verbal
consent being ascertained the day before the interview, immediately before the interview
commenced, and at stages during the interview. It is also important to remember that
veracity extends further than informed consent, for example, Locke et al (2000) point out
the importance of reporting the findings truthfully and completely. Confidentiality This
segment of the REW is concerned with the issues of anonymity and confidentiality. Parahoo
(2006 :466) describes confidentiality as the: ‘assurance given by researchers that data
collected from participants will not be revealed to others who are not connected with the
study.’ While Burns and Grove (2005) state that all participants have the right to privacy,
anonymity and confidentiality, they do say that true anonymity only exists if the
participant’s identity cannot be linked, even by the researcher—clearly this is not feasible in
an interview. Parkes (2006) states that any information that may mean that a 4 participant
could be recognized, should be changed; as a result, pseudonyms were used in the writing of
the research report. Guaranteeing confidentiality means ensuring that only the researcher is
aware of the source of the information; the wishes of the participants were respected
throughout the study with care being taken to ensure that all data was securely stored. Risk
versus benefit This section of the REW relates to the researcher’s duty to ensure that the
participants are not involved in an investigation that will either benefit them or anyone else.
In addition, it considers the need to minimize the risks associated with the study, so
protecting the participants from unnecessary harm or discomfort. Richards and Schwartz
(2002) identified four areas of possible risk for participants in qualitative research: distress
and anxiety; exploitation; misrepresentation and identification of the participant in
publications. While care was taken to avoid all of these potential dangers, there was

15. particular concern that distress may be caused to the patients, not just because of the
nature of the research, but because the very effort of talking to an interviewer may
exacerbate their physical condition. Fitzsimmons and McAloon (2004) suggest that
researchers should be cognisant of the fact that they may need to intervene. Some patients
did become visibly tired, but none to the extent that the interview needed to be terminated,
although they were given the option of ending the interview at any time. In addition,
interviews were occassionally cut short if it was felt that the patient was becoming weary. It
is important to remember that all research should benefit the participants to some extent.
However, with many palliative care patients, this may not be the case, and in some
instances, they may die before any actions as a result of the research can take place: as
occurred with the discussed study. Janssens and Gordijn (2000) have suggested that it is
possible that research in palliative care may, therefore, be unethical, as patients will not
have the opportunity to benefit from the study. However, Addington-Hall (2002) point out
this is not unique to patients accessing palliative care; many people who take part in
research do not actually derive any personal benefit from it. Similarly many other patients
could experience psychological distress as a result of research and may be fragile and
exhausted as a result of their illness. In view of this, Casarett and Karlawish (2000) consider
that there is no reason why palliative care should be a special case if ethical principles and
guidelines are adhered to. International Journal of Palliative Nursing 2010, Vol 16, No 2
Review Outcomes of research The third quarter of the REW pertains to the effects that the
study may have once it is completed. It is acknowledged that studies involving patients
receiving palliative care could promote anxiety. However, Lee and Kristjanson (2003) stress
that without research taking place, there is a risk that nothing new is attempted and that
there could be a failure to scrutinize how the profession cares for dying people. In addition
they point out that without the use of research to demonstrate and justify the value of
palliative care services, then palliative care providers may find it increasingly difficult to
attract funding. From a social justice perspective, as Rawles (1971) suggests, all members of
the community could have an interest in the provision of good health care because they
have the potential for needing it in the future. However, in terms of palliative care, as
Seymour and Skilbeck (2002: 219) state, ‘this requires striking a fine balance between the
ethical duties of providing caring support, nurturing independence and autonomy, and
achieving research outcomes that are rigorous, while also being accessible and meaningful
to users.’ Following the completion of the discussed study and the writing of the report, the
commissioners of the study did agree to discuss the findings with the authors and to
consider the recommendations made. Consequences This segment acknowledges that there
will be unknown facts associated with any research and that the study should be stopped if
hazards are found to be greater than the advantages. Streubert Speziale and Carpenter
(2006) suggest that a study may provide the only opportunity for the participant to discuss
the identified topic. This is an important factor for consideration in palliative care, as
particularly sensitive issues may be addressed (for example, dying). Streubert Speziale and
Carpenter (2006) advocate that time be made available at the end of the interview in case
help or advice is required; this may be in the form of a discussion or through the provision
of a contact name and telephone number. While relevant details were given to participants,

16. no one became unduly distressed by the interviews; in addition, it was evident that there
were already established support mechanisms for patients—as their diagnoses were not
new, although the authors did also put in place mechanisms for the support of patients that
were external to their carers within the palliative care services, if that was what was
desired. Researchers themselves may find the whole International Journal of Palliative
Nursing 2010, Vol 16, No 2 experience of conducting the research stressful and they also
may require psychological support; interestingly, both authors commented that we had not
found the actual interviews too distressing, but transcribing and reflecting upon the
experience was far more emotionally challenging than had been anticipated. We were able
to share these feelings and this was certainly beneficial. { Through research, clinicians will
be better able understand the needs of the community | Hazards This section shares
similarities with ‘risk versus benefit’. The researcher clearly has a duty to ensure that the
study does not carry undue risk; this study did not involve an alteration to the management
of care, so there were no additional concerns over and above those already highlighted.
Non-participation It is essential that participants feel able to refuse to participate in a study,
and that the issue is dealt with in a sensitive manner (Hammick, 1996). The building of a
rapport with the participants is important and will help them to feel confident to say ‘no’,
should they so wish; in addition, the opportunity to withdraw from the research should be
reiterated at each stage so that participants feel that they have ‘permission’ to do so. This
was fully adhered to; however it is interesting to note that the three participants who did
leave our study, did so before conducting the interview—in all cases, they left a message on
the researcher’s work telephone at a time when noone would normally be available (for
example, late on a Sunday evening); it was assumed from this that the person did not wish
to speak to someone and this choice was respected. Aims This segment of the model serves
to emphasize that the aims of the research project should be realistic and achievable; the
objectives of this study were carefully considered and identified—failure to do so could be
perceived as being unethical. Practicalities of the research process The fourth quarter of the
REW concerns the external environment. Codes and laws This segment of the model
stresses that researchers must adhere to codes of practice, legal obligations and regulations
(Hammick, 1996); both researchers are registered nurses and therefore a range of policies,
as well as nursing and research rules, needed to be adhered to (McHaffie, 2000) 65 Review {
Researchers themselves may find conducting research stressful, and also require
psychological support | in order to practice ethically.This included the Nursing and
Midwifery Code of Professional Conduct (Nursing and Midwifery Council, 2008) and
relevant NHS Trust policies from where the sample of participants were drawn. Ability In
order to meet many of the requirements mentioned in earlier segments of the REW, it is
important to identify that the researcher is suitably qualified and possesses the ability to
undertake the study (Hammick, 1996). It is imperative that researchers acknowledge their
limitations and bias, and that they strive to achieve the knowledge and skills that are
required for the investigation. Both researchers had been involved in previous studies, one
having undertaken research with vulnerable groups of patients and their families; while
additional training was not undertaken in relation to the development of interviewing skills,
time was spent discussing and planning the format of the interviews. Resources

17. Consideration must be given to the effect that the research may have on other work
commitments as well as the availability of time and materials which may be required. This
aspect should not be underestimated—the sense of responsibility towards the participants
is very powerful; at the same time, daily working tasks do need to be accomplished. Scrutiny
The final segment of the fourth quarter relates to scrutiny of the study. It is imperative that
the research is considered by independent sources; this is usually the relevant ethics and
research governance committees. This was duly undertaken, as well as internal and
external reviews of the research proposal; the procedure went smoothly without any
alterations to the research proposal being necessary—nevertheless the whole process took
18 months, as the researchers required honorary contracts and updated Criminal Record
Bureau checks. Within this segment of the model, Hammick (1996) also emphasizes the
obligation which researchers have to publish findings in an unbiased manner, so facilitating
the sharing of knowledge; without this she argues, health care cannot progress. Locke et al
(2000) concur that the dissemination of results is a central part of the research process; this
should be undertaken in a thorough manner to facilitate the potential implementation of
findings (Nieswiadomy, 2002). Two of the key strategies that are commonly used are 66
conference presentations and publication via journals (Polit and Beck, 2006). Conference
presentations (either via a poster or an oral report) have the advantage of providing
immediate communication of research as well as encouraging dialogue among conference
attendees and generating further understanding through the answering of questions
(Nieswiadomy, 2002; Polit and Beck, 2006). In addition, networking with other researchers
may result in useful suggestions regarding further study (Macnee, 2004). Nevertheless, the
largest number of professionals will be reached via a journal publication (Nieswiadomy,
2002). It is anticipated that both of these approaches will be used to disseminate the
findings from our research. Finally, and perhaps most importantly, it is advisable to report
findings to participants (Nieswiadomy, 2002; Macnee, 2004). Therefore, everyone who took
part in the study has been provided with a summary of the findings. Conclusion This paper
has used an established framework in order to provide a systematic analysis of the ethical
issues that should be considered when conducting research with participants who are
receiving palliative care, as is demonstrated in the author’s study of living with cancer.
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importance in establishing the veracity, rigour and ethical basis for research. Researchers
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