Perceptions of Touch in People With Cancer
Perceptions of Touch in People With Cancer
This study is a qualitative, phenomenological research design. The research question is the
 lived experience of adult oncology patients undergoing chemotherapy being touched and
 touching. The researcher will conduct minimally-structured interviews with a set of follow-up
 interviews to verify interpretations and ascertain additional participant reflections on the
 phenomenon of touch. The purpose of this study is to describe the sensation of touch in adult
 oncology patients who are actively undergoing chemotherapy treatment. The primary objective
 is to identify the essences of multiple meanings of touch to these patients. The importance
 of touch in physiological development, learning patterns, and stress reduction has been
 demonstrated in humans and animals through years of research (Field, 2000). Based on research
 which indicates touch therapies provide a significant amount of symptom relief and reduction
 in anxiety, a growing number of hospitals and clinics are integrating massage therapy into
 services provided to patients in order to ameliorate many symptoms of diagnosis and/or
 treatment-related discomfort. Examples are the integrative medicine programs at Memorial
 Sloan-Kettering Cancer Center and George Washington University Medical Center which include
 touch therapy modalities. Research focusing on the embodied experience of sensory phenomena
 such as touch is important to provide the basis for more effective care. No studies to date
 have focused on the self-reported experience of the cancer patient with regard to what touch
 means to these individuals, particularly those actively in treatment with intravenous
 chemotherapy. The embodied sensation of touch in these people is important to understand in
 order to provide more effective touch-based interventions and also to increase awareness of
 direct care staff, including nurses, of the profound and complex effect that all forms of
 touch have on those who are physically and psychically vulnerable.
The importance of touch in physiological development, learning patterns, and stress reduction
 has been demonstrated in humans and animals through years of research. Based on research
 which indicates touch therapies provide a significant amount of symptom relief and reduction
 in anxiety, a growing number of hospitals and clinics are integrating massage therapy into
 services provided to patients in order to ameliorate many symptoms of diagnosis and/or
 treatment-related discomfort. Examples are the integrative medicine programs at Memorial
 Sloan-Kettering Cancer Center and George Washington University Medical Center which include
 touch therapy modalities. Research focusing on the embodied experience of sensory phenomena
 such as touch is important to provide the basis for more effective care. No studies to date
 have focused on the self-reported experience of the cancer patient with regard to what touch
 means to these individuals, particularly those actively in treatment with intravenous
 chemotherapy. The embodied sensation of touch in these people is important to understand in
 order to provide more effective touch-based interventions and also to increase awareness of
 direct care staff, including nurses, of the profound and complex effect that all forms of
 touch have on those who are physically and psychically vulnerable. The stress of the
 diagnosis and treatment heightens patients' awareness of many taken-for-granted aspects of
 daily interaction, including touching and being touched. The side effects of certain
 chemotherapy treatments can create neuropathies that make the sense of touch diminished or
 painful, even to the extent that putting on socks and shoes or taking a pulse or blood
 pressure can become excruciatingly painful experiences. By allowing people who are actively
 undergoing treatment for cancer to express the meaning of touch in their lives, a fuller
 understanding of the multiple dimensions of the experience can be achieved. Using this
 understanding, more effective nursing and touch interventions can be designed to enhance
 patient comfort. One author notes a multitude of terminologies to distinguish types of
 nursing touch in her literature review. She observes that, "it is possible that touch is so
 integral … that the need for serious research is not recognized … it is clear that more
 research, and qualitative research in particular, is needed to better understand the effects
 and meaning of touch…" (p. 849). Chang (2001) stresses the need to treat physical touch in a
 "holistic way" (p. 821) to positively impact the patient. She also stresses the meaning of
 physical touch is "dependent on reciprocal expectations about touch," (p.826). Based on the
 importance of Chang's delineation of multidimensional aspects of perceptions of touch and the
 mutual nature of the expectations, additional study is warranted to elucidate the perceptions
 of touch in patients. This understanding can be used to facilitate increased quality of life
 in patients with cancer through better education of health care providers and integration of
 complementary modalities in a safe, effective plan of comprehensive care.

 The research design will be a phenomenological qualitative design. The purpose of
 phenomenological research is the description of the experiential meanings we live as we live
 them. The research question is the lived experience of adult oncology patients undergoing
 chemotherapy being touched and touching. The researcher will conduct minimally-structured
 interviews with a set of follow-up interviews to verify interpretations and ascertain
 additional participant reflections on the phenomenon of touch.

 Data will consist of participant interviews recorded and transcribed by the researcher.
 Following the methodology of Colaizzi (1978), the interviews are read multiple times to
 immerse the researcher in each participant's text and achieve a collective impression or
 feeling for the whole. Following this, significant statements are selected from each
 interview which pertain to the phenomenon under investigation. Meanings of these statements
 are formulated hermeneutically (i.e., interpreted) by the researcher. These meanings are then
 grouped according to themes identified by the researcher. All meanings must be considered. An
 exhaustive description of the phenomenon under investigation is then written which focuses on
 the universal, essence that lies on the other side of the concreteness of lived meaning. The
 researcher then returns to the participants for validation of the meanings, clusters, and
 descriptions. Finally, new data obtained from participants are incorporated into the
 structure of the research. Prior to conducting interviews and throughout the entire research
 process, a log is kept of the researcher's presuppositions about the investigated topic. This
 acknowledgement of the researcher's viewpoint assists in setting these pre-conceived ideas
 aside in order to come to direct terms and meanings as lived by the participants. One
 author's contribution to the methodology comes in his approach to the interpretations of the
 text. He describes the following components of phenomenological interpretation: 1. turning to
 the nature of lived experience, 2. investigating the lived experience, 3. hermeneutical
 phenomenological reflection, 4. hermeneutical phenomenological writing, 5. maintaining a
 strong and oriented relation, and 6. balancing the research context by considering parts and
 whole. These interpretive relationships are not linear steps; they form a guideline for all
 phenomenological reflection and writing.

 While the concepts of reliability and validity can not be applied to phenomenological
 research as they are for quantitative studies, the data trail and decisions regarding
 interpretation are to be documented fully so that thought processes in the identification of
 essential themes and meanings can be audited by outside reviewers. Trustworthiness of the
 data and interpretations is paramount in qualitative inquiry. Lincoln and Guba (1985) set
 forth four basic concepts to establish trustworthiness: truth value, applicability,
 consistency, and neutrality. They discuss the divergence of the naturalistic paradigm of
 qualitative research methods from the traditional or positivist paradigm of cause and effect.
 The four concepts take on the following respective characteristics: credibility,
 transferability (which requires contextual similarity), dependability, and confirmability.

 The first step of the study is the researcher's articulation of presuppositions regarding the
 phenomenon of touch. This is carried out throughout the process of the study to ensure the
 process of interpreting and defining essences of participants' experiences are not unduly
 influenced by the experience of the researcher. Following approval from the Institutional
 Review Board, participants will be recruited from physician, nurse practitioner, and
 physician assistant recommendations at the Regional Oncology Center and other central New
 York oncology clinics. Each patient will be asked by his or her practitioner if he or she
 wishes to take part in the study. If the person is interested, his or her phone number will
 be forwarded to the researcher by the practitioner. The researcher will then contact the
 patient to confirm his or her willingness to participate and understanding of the aims and
 procedures of the study. For each patient who is confirmed as desiring participation, the
 researcher will obtain informed written consent. Participants may withdraw at any time during
 this study until the interview is transcribed, in order to maintain the integrity of the
 study. All potential physical, social, legal, and other risks will be described and a phone
 number given to the participants to contact the researchers in case of questions. Each
 participant will be interviewed for approximately one hour in a private place and at a time
 which is convenient to the participant and researcher. Before beginning the interview, the
 participant will be asked to choose a pseudonym. A second interview will take place several
 months later (after the researcher has had sufficient time to fully immerse herself in the
 data). This will give the participants a chance to reflect on their interview and review
 interpretations of their information made by the researcher. Each interview will be taped and
 field notes taken by the researcher. These will be transcribed soon after the interview to
 allow initial impressions to be noted along with interview text. Subjects will be enrolled
 until saturation is reached (no new data obtained from initial interviews). Due to the need
 for saturation, the number of interviews can not be planned beforehand; however, the number
 is estimated to be between 8 and 12 participants. The interviews will be transcribed by the
 researcher or other transcriptionist. To protect confidentiality, the participants' names
 will not be attached to electronic or paper data; only pseudonyms will be used as interview
 and data identifiers. All data will be stored in a locked file container accessible only to
 the researchers. All audiotapes will be destroyed after completion of the research study. The
 confidentiality agreements will be kept securely in a separate, locked file cabinet also
 accessible only to the researchers. Participants' demographic information, including age,
 gender, ethnicity, educational level, and employment (current or before illness) will be
 collected and stored with the pseudonym.

 Interviews will consist of broad open-ended questions. In order to establish rapport and
 provide a foundation for more detailed questions, the initial questions will begin with the
 experience of discovering the cancer, diagnosis, the experiences of treatment, and social and
 personal consequences of the lived experience. Exploration of the initial diagnosis is
 important because of the life-changing nature of the diagnosis and the accompanying feeling
 of shock that many people experience at the moment of receiving the diagnosis (American
 Cancer Society, 2006). The questioning will then focus on the experience of being touched by
 others, first during the process of the diagnosis and treatment, then prior to this
 experience. Questions will also be formulated during the interview on the sensation of touch
 now and prior to treatment, including touching others. All questions will be broad to allow
 the greatest possible latitude of participant interpretation; however, a general list of
 questions will be formulated to ensure consistency and completeness of data collection across
 participants. In general, the interview is paramount in data collection because it is the
 intention of the researcher to be "minimally intrusive" while eliciting descriptions that are
 robust and complete in describing each person's perspective of the phenomenon. In this study,
 several broad questions will be asked at some point during each interview to ensure that
 similar baseline data are collected for each participant. Questions to be asked will be:

 -  Please tell me about some of the changes you have experienced since being diagnosed with
 cancer.

 -  Please tell me about how you have coped with the diagnosis and treatments.

 -  How have people around you reacted to your diagnosis?

 -  How important to you is being touched?

 -  Has your sense of touch changed in any way since you started chemotherapy?

 -  Has the amount of physical contact you have with others changed?

 -  Have you ever had any massage or other form of touch therapy?

 -  Please describe how it feels to be touched when you are going to the medical clinic or
 having procedures such as CT scans done.
Inclusion Criteria:

 -  Adults, at least 18 years old, who have been diagnosed with cancer (any form) and are
 in active treatment.

 -  Treatment must include intravenous chemotherapy (either as an outpatient or an
 inpatient) with or without surgery and/or radiation.

 -  Each participant will be fluent in English, able to hear and speak, fully alert and
 oriented, able to verbalize both concrete and abstract ideas, and able to comprehend
 and sign consent for participation.

 Exclusion Criteria:

 -  Anyone else