Jan Walker

In the system : the lived experience of chronic back pain from the perspectives of those seeking help from pain clinics

Narrative accounts of their lived experiences were collected from twenty back pain patients who were seeking help from two pain clinics in the UK. Following analysis using a phenomenological approach, five themes emerged which tell a typical story of back pain. One prominent emergent theme, in the system, is reported in which participants tell how they became entrapped within the medical, social security and legal systems. These systems, designed to treat or support those who are ill or disabled, effectively rendered participants powerless, helpless and angry. It is suggested that these accounts may help clinicians and researchers to gain a better understanding of the origins and nature of the negative attitudes exhibited by many back pain patients who seek help from pain treatment centres.

The stigmatisation of people with chronic back pain

Purpose. This study responded to the need for better theoretical understanding of experiences that shape the beliefs, attitudes and needs of chronic back patients attending pain clinics. The aim was explore and conceptualise the experiences of people of working age who seek help from pain clinics for chronic back pain. Methods. This was a qualitative study, based on an interpretative phenomenological approach (IPA). During in-depth interviews in their homes, participants were invited to ‘tell their story’ from the time their pain began. Participants were twelve male and six female patients, aged between 28 and 62 years, diagnosed as having chronic benign back pain. All had recently attended one of two pain clinics as new referrals. The interview transcripts were analysed thematically. Findings. Stigmatisation emerged as a key theme from the narrative accounts of participants. The findings expose subtle as well as overt stigmatising responses by family, friends, health professionals and the general public which appeared to have a profound effect on the perceptions, self esteem and behaviours of those interviewed. Conclusions. The findings suggest that patients with chronic back pain feel stigmatised by the time they attend pain clinics and this may affect their attitudes and behaviours towards those offering professional help. Theories of chronic pain need to accommodate these responses, while pain management programmes need to address the realities and practicalities of dealing with stigma in everyday life.

The experience of chronic back pain: Accounts of loss in those seeking help from pain clinics

Background This study responded to the need for greater understanding of the experiences that help to shape the worldviews of chronic back patients as they seek help from pain clinics.

Expectations of independence and life satisfaction among ageing spinal cord injured adults

PURPOSEnThe present study offers information about independence and life satisfaction over the lifespan for individuals with traumatic spinal cord injuries.nnnMETHODSnThe study uses the health expectancy methodology to estimate expectations of the remaining years of life that may be spent in states of independence and satisfaction with life.nnnSUBJECTSnThe cohort studied had all incurred a spinal cord injury between the ages of 25 and 34, between the years 1945 and 1990 in central and south-eastern Ontario.nnnRESULTS AND CONCLUSIONSnThe study found that levels of independence and quality of life in the sample conformed closely to those found in other similar studies with the spinal cord injured population: 22% reported their own functional status as dependent, and 22% reported fair to poor life satisfaction. Expectations of independence appeared to decline steadily over the five decades studied, while expectations of modified independence increased proportionally. Estimates varied significantly for those with paraplegia vs. quadriplegia, and those with complete vs. incomplete lesions. Expectations of life satisfaction appeared to change after the 30 year mark; at that point, the balance changed so that expectations of dissatisfaction outweighed expectations of satisfaction. Multiple regression showed that independence was related to lesion level, completeness and recency of injury, and both independence and satisfaction were related to marriage and employment.

The Transition from Well Person to “Pain Afflicted” Patient: The Career of People with Chronic Back Pain

This article aims to show how people with chronic back pain manage the status passage from being well persons to becoming “pain afflicted” patients and how they see their own progression through the pain career path. This is examined through in-depth narrative interviews. The data were processed through thematic analysis. It was found that during the transition, a change in perceived identity occurs and that people grieve over the loss of their former selves, their future, social relationships, and occupational careers. The article also reflects on the value of narratives in revealing transformations over time. This technique is intended to capture evolving self-understandings of personal identity as persons negotiate the path through complex and critical life events.

Music lessons on prescription? The impact of music lessons for children with chronic anxiety problems

The aim of this study was to examine the potential role of music lessons as part of a treatment programme for children diagnosed as having severe chronic anxiety disorders. The findings are presented as a series of individual case studies based on the recorded observations of the children, parents, music‐teachers and family therapists. Over the period of a school year five children were recruited to receive lessons on an instrument of their choice from an experienced professional music‐teacher. Music lessons were credited with improvements in feelings of efficacy and self‐confidence, increased social ease and independence, new opportunities to express creativity and emotional feelings, and control over intrusive thoughts and feelings. Normalisation of the therapeutic environment, combined with freedom from parental pressure to succeed, appears to emerge as a key feature of the success of the project. The findings indicate that music lessons on prescription may offer a useful complement or alternative to therapy for difficult and complex childhood anxiety disorders.

Effects of Spiritual Healing for Women Undergoing Long-Term Hormone Therapy for Breast Cancer: A Qualitative Investigation

BACKGROUNDnSpiritual Healing is widely available and used, but is a neglected area for research and its biologic and psychologic mechanisms are not understood. The side-effects of long-term hormonal therapy for breast cancer are onerous and have been reported to lead to drug holidays that could diminish the long-term treatment benefits. It was investigated whether Spiritual Healing could support patients with breast cancer undergoing this treatment.nnnMETHODSnThe qualitative observation study took place in a specialist research facility in a general hospital. Spiritual Healing was provided by 4 healers registered with the National Federation of Spiritual Healers. Twelve (12) patients with breast cancer undergoing long-term hormone treatment and who found the effects onerous, self-referred themselves and were given ten weekly sessions of approximately 40 minutes each. Data collected included participants daily records, direct observations noted by healers, the researchers field diary and a one-to-one semi-structured interview.nnnFINDINGSnThe positive effects of Spiritual Healing included alleviation of the physical side-effects of their treatment, increased energy levels, enhanced well-being, emotional relaxation, and re-engagement with precancer activities. Although 1 participant admitted considering a drug holiday prior to joining the study, none of the participants felt tempted to stop their hormonal treatments while receiving Spiritual Healing.nnnCONCLUSIONSnThese qualitative findings indicate that Spiritual Healing has the potential to support patients with breast cancer in the maintenance of their long-term orthodox treatments. Further research is needed to test Spiritual Healing as a cost-effective complementary therapy, for those undergoing long-term cancer treatments.

Randomised controlled trials in the evaluation of non-biomedical therapeutic interventions for pain: The gold standard?

This paper offers a critical review of important issues in the implementation and interpretation of randomised controlled trials (RCTs) used to evaluate non-biomedical therapeutic interventions for pain. The analysis of methodological issues focuses on the validity, relevance and clinical importance of outcome measures; sampling and randomization bias; blinding procedures used to control for the placebo response and therapist influences, and treatment standardisation. A key issue is that pain management is inextricably linked to the establishment of a therapeutic relationship. In such circumstances, it is argued that the gold standard double-blind RCT is impracticable. Those relying on RCTs as sources of evidence need to be aware that an unblinded RCT can enhance placebo responses to the intervention and introduce important sources of bias. The challenge faced by healthcare researchers is to identify alternative research designs able to provide valid and reliable evidence that the proposed therapeutic intervention is capable of achieving cost-effective, clinically important and personally relevant outcomes in naturalistic settings.

The Development and Validation of an Outcome Measure for Spiritual Healing: A Mixed Methods Study

Background: Spiritual healing, probably the oldest documented paramedical intervention, is a neglected area of research. In order to conduct further research into the effects of healing, a valid and reliable outcome measure is needed that captures the experience of individuals receiving healing (healees) and is not burdensome to complete. We aimed to develop such a measure. Methods: A mixed methods design was used. Focus groups and cognitive interviews were used to generate and refine questionnaire items grounded in the experiences and language of healees (Study 1). The resulting questionnaire was tested and its formal psychometric properties were evaluated (Study 2). Participants were recruited from a spiritual healing sanctuary and via individual healers (including registered spiritual healers, Reiki practitioners, healers affiliated with churches). Results: In Study 1, 24 participants took part in 7 focus groups and 6 cognitive interviews. 29 common effects were identified and grouped into 7 discrete dimensions that appeared to characterize potentially sustainable effects reported by participants following their experiences of spiritual healing. In Study 2, 393 participants returned completed baseline questionnaires, 243 of whom completed the questionnaire again 1–6 weeks later. Exploratory factor analysis generated 5 subscales, based on 20 of the items: outlook, energy, health, relationships and emotional balance. These subscales demonstrated acceptable internal consistency, convergent validity and test-retest reliability. Three of the subscales and the whole questionnaire demonstrated good sensitivity to change. Conclusions: We have produced a psychometrically sound healing impact questionnaire that is acceptable to healees, healers and researchers for use in future evaluations of spiritual healing.

Experience of Proximate Spiritual Healing in Women with Breast Cancer, Who Are Receiving Long-Term Hormonal Therapy

BACKGROUNDnThis paper presents the research protocol for a pragmatic study of the experience of spiritual healing. This unique qualitative study seeks to identify any qualitative benefits of hands-on or proximate spiritual healing for women experiencing adverse reactions to hormonal treatments. Healing will be administered as adjuvant therapy for the long-term management of breast cancer.nnnDESIGNnA purposive sample of up to 20 women who have completed their initial treatments at least 6 months previously will be recruited through the Oncology Department at Southampton General Hospital. The study will take place at the Wellcome Trust Clinical Research Facility within Southampton General Hospital, where spiritual healing will be provided by healers who are National Federation of Spiritual Healers registered. Patients will be offered up to 10 weekly healing sessions.nnnOUTCOMEnPatients will be asked to keep a daily log noting any changes they have noticed during or after the healing sessions and their attributions of these. Audio recorded in-depth interviews will be carried out after completion of the final healing. Participants will also be invited to attend focus group meetings to discuss any effects of healing. Data will be analyzed initially using an ethnographic approach allowing further analysis using other appropriate qualitative methodologies. Depending on the findings, this study will also form the preliminary stage of a further study to develop and evaluate a healing-specific questionnaire.