Perceptions of Touch in People With Cancer
Condition: Cancer
Study type: Observational

Summary: 
      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.
    

Detailed description: 
      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.
    

Sampling method: Non-Probability Sample
Study population: 
        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.
      
Keywords: cancer; qualitative