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Challenges of participatory research: reflections on a study with breast cancer self-help groups.

OBJECTIVE: To review and discuss issues related to participatory research, as they apply within the arena of cancer control. DESIGN: A participatory research study with breast cancer self-help groups is referred to for description and discussion purposes. That study employed primarily individual and group interviews to assess benefits and limitations of self-help groups. SETTINGS: Four breast cancer self-help groups in Ontario communities provided the core involvement in the participatory research project. RESULTS: The values and practices of mainstream academic research often conflict with those of research emphasizing participation and control of communities under study, leading to a variety of challenges for the latter approaches. Practical constraints faced by many community groups have important implications for participatory research approaches. CONCLUSIONS: A balance needs to be found for participatory research within cancer control - one that ensures that the core aims of participatory research are maintained, while simultaneously acknowledging the various challenges that make a fully participatory project unrealistic. Steps can be taken to achieve a workable balance.

Journal Article↗

Stress factors and coping strategies of parents with children treated by hemodialysis: A qualitative study.

The purpose of this study was to describe the common stress factors and coping strategies of parents whose children had been treated by hemodialysis. This study was conducted by using focus group interviews. The sample was composed of 31 parents. Five focus groups were made up from these parents. Data were analyzed by using the manifest content analysis method. According to the results, common stress factors of parents included financial and bureaucratic problems, growth and development of ill children, fluid-diet restriction and educational problems of children, lack of social support, and anxiety about losing their children at any moment. Coping strategies of parents were to give their attention to the positive side of matters, to share their feelings with their spouse or other parents, to cry, or pray.

Adaptation, Psychological↗

Impact of maternal activity restriction for preterm labor on the expectant father.

OBJECTIVE: To describe the impact on expectant fathers of their partners' activity-restricted pregnancies. DESIGN: Qualitative. SETTING: Private physician practices and two teaching hospitals in a large southern city. PARTICIPANTS: Self-selected sample of 15 fathers recruited within 2 weeks of initiation of their partners' activity restriction for high-risk pregnancy (phase 1) and 15 fathers recruited 1-2 years after a previous experience with their partners' activity-restricted pregnancies (phase 2). DATA COLLECTION: In phase 1, two semistructured interviews during the period of activity restriction and one interview after the birth. In phase 2, one semistructured, focus group interview. RESULTS: Fathers reported high levels of worrying immediately after diagnosis of their partners' preterm labor and initiation of activity restriction. Later, fathers also reported distress related to responsibility for child care, household management, and maintaining a supportive environment for their partners. Fathers reported few sources of personal support and little or no contact with health professionals during their partners' activity restriction. CONCLUSIONS: Activity restriction during pregnancy may have a significant psychological impact on expectant fathers. High levels of emotional distress may result in family disruption. Systematic nursing assessment and intervention may prevent or ameliorate distress.

Adaptation, Psychological↗

A multi-year evaluation of a parent support centre.

This paper summarizes the results of a multi-year evaluation of a parent support centre project. Qualitative data gathered both from a series of individual interviews with participants and from a series of focus-group interviews with both participants and workers are presented. The developmental process of the project is detailed. Positive outcomes with regard to individual changes in social support, parenting, and self-esteem are described. The accomplishments of the project's goals regarding participant satisfaction with activities and programs and the development of indigenous leadership are noted; however, the project was deemed less successful with regard to ongoing recruitment of participants. Implications for practice are discussed.

Adult↗

Steps to soulful living (steps): a weight loss program for African-American women.

BACKGROUND: The disproportionate disease burden experienced by African-American women can be explained partially by the higher rates of obesity in this population. African-American women who can benefit from weight loss may be less likely to attempt it and may have relatively less success in using traditional weight loss programs compared to White women. Steps to Soulful Living (Steps) was a pilot study to test the effects of a culturally adapted weight loss program on weight loss in African-American women. METHODS: Sixty-six African-American women participated in a 6-month weight loss program that included weekly group meetings and supervised exercise sessions. Mean baseline body mass index was 39 kg/m2, and mean baseline weight was 107 kg. Cultural adaptations, defined as program adjustments, made in response to women's preferences as expressed in focus group interviews included changes in intervention format, the content of the group meetings, and the location and format of the exercise sessions. RESULTS: Seventy-six percent of the participants attended at least 50% of the 26 weekly sessions, and 56% attended at least 75% of the sessions. Average hours of exercise per week approximately doubled during the program in comparison to baseline levels. Mean weight loss at 26 weeks was 3.7 kg, categorizing those who were lost to follow-up as having zero weight loss. Participants who attended at least 75% of the group meetings lost a mean of 6.2 kg at six months. Those who attended fewer meetings lost a mean of 0.9 kg. CONCLUSIONS: This 6-month program was associated with relatively larger weight losses, particularly among participants with high attendance, than have usually been observed in culturally adapted programs for African-American women.

Adult↗

Selection of physical therapy students: interview methods and academic predictors.

The purpose of this study was to determine which preprofessional academic and personal characteristics were related to academic and clinical success in a physical therapy program. Individual interviews used for the class of 1982 (N = 25) and group interviews for the class of 1983 (N = 31) were studied to determine which interview type was the stronger predictor of later performance. Correlations of grade point averages (GPAs) and interview scores with academic and clinical grades were calculated. Stepwise regressions were performed to identify the stronger relationships. Preprofessional science and cumulative GPAs for the class of 1982 were moderately, but significantly correlated with cumulative GPAs in the program (r = .54, p less than .05, and r = .50, p less than .05, respectively). Only science GPA for the class of 1982 was retained in the stepwise regression (R2 = .31, p less than .006). All other correlations were low, and correlations for the class of 1983 were lower than for the class of 1982. Neither the academic nor personal characteristics studied were strong predictors of performance in the professional physical therapy educational program.

Achievement↗

Characteristics of the residency interview process preferred by medical student applicants.

This study elucidates the characteristics of the interview day preferred by medical students applying to family practice residencies. Interviews and informal meetings with residents were regarded as being the most helpful, followed by interviews with the director or faculty. Perceptions of other components of the interview day are also described. October was the month most students preferred, and two interviews each lasting 20 to 30 minutes were considered ideal. Group interviews were regarded negatively. The results of this survey are generalizable to other residency programs and could be helpful in planning the interview day.

Attitude of Health Personnel↗

Coping with headache.

OBJECTIVE: To describe self-initiated actions and cognitive strategies used for coping by women who suffer from episodic tension-type headache. DESIGN: Qualitative data from focus-group interviews were analysed according to Giorgi's phenomenological approach, inspired by Lazarus's theory of coping. SUBJECTS: A total of 15 women with tension-type headache, 20-60 years old, were recruited to three different focus groups through newspaper advertising. RESULTS: To cope with episodic tension-type headache, rhythm and balance in actions like eating, drinking, and sleeping were essential. Several women used thermal modulation. Exercise was important. Taking charge of their own time, pace, and level of commitment and accepting the fact that they had to live with their headache were cognitive strategies used. IMPLICATIONS: The general practitioner should identify the woman's choice of actions and cognitive strategies to manage her headache, and support her coping skills.

Adaptation, Psychological↗

Focus groups: an exciting approach to clinical nursing research.

The focus group interview is an exciting qualitative research design that is gaining popularity among nurse clinicians and researchers. This article provides a practical approach to designing and implementing focus groups. The authors' own research experience with post-coronary angioplasty patients is used as a model.

Adult↗

Caregivers' use of spirituality in ethical decision-making.

This qualitative study examined ethical dilemmas faced by female caregivers of frail elders as well as the dominant role of caregivers' spirituality in addressing these dilemmas. Dilemmas are difficult decisions that involve conflicting values, e.g., freedom versus safety. In-depth interviews were conducted with thirteen ethnically diverse caregivers recruited from a home health agency and its parent hospital. Purposive sampling was used to obtain variation among research participants. Focus group interviews of home health staff, key informant caregivers, and interviewees provided guidance for the research design, reflection on findings and development of implications. In order to deal with ethical dilemmas, all caregivers used spirituality as (1) a philosophy of life, e.g., "This is what you do when you're family," (2) an aid to decision-making, e.g., through the use of prayer; and/or, (3) a way to transcend dilemmas, e.g., "no choice is hard." Implications include the importance of caregiver-driven assessment, professional self-reflection, and sustained formal services for caregivers.

Aged↗

To what extent are medical interviewing skills teachable?

Growth patterns of medical interviewing skills during a 6-year undergraduate curriculum are assessed by studying 563 medical students taken from five year-groups, interviewing simulated patients. In a cross-sectional, quasi-experimental design their skills are rated by means of the Maastricht History-taking and Advice Checklist (MAAS), an observation instrument which measures five categories of interviewing skills pertaining to initial medical consultations. The findings suggest that the skills for 'history-taking', 'presenting solutions' and 'structuring of the interview' are effectively learned. These learning effects result from a continuous small group teaching program with expert and peer review of videotaped encounters with simulated patients. The teaching effects of this program seem less for the skills pertinent to the phase of 'exploring the reasons for encounter' and to the 'basic interviewing skills', because the students' growing medical knowledge and the increasing ability to solve medical problems exert a counteracting influence on the acquisition of these easily deteriorating skills. The results might be helpful to curriculum planners in order to make their programs for medical interviewing skills more effective.

Cross-Sectional Studies↗

Qualitative evaluation of a diabetes advisory system, DiasNet.

We carried out a qualitative evaluation of the implementation of a computerized diabetes advisory system, DiasNet. Three patients with insulin-dependent diabetes used the system. The methodological frame of reference was the case study. Qualitative interviews were conducted with patients. In addition, 10 qualitative interviews were conducted with health-care professionals and one focus group interview was held. The study lasted for six months. The results showed that patients experienced greater confidence and a more personal rapport with the staff. DiasNet brought about changes in the tasks and duties performed by all professional groups in the diabetes team. From the perspective of the diabetes team, email facilitated a dialogue between the patient and the diabetes team which was independent of time and place.

Attitude of Health Personnel↗

Psychosocial issues in older adults' adjustment to vision loss: findings from qualitative interviews and focus groups.

Although more therapists are responding to the increasing need for visual rehabilitation services for older adults, little is reported in the literature about the emotional experience of vision loss, especially in the words of persons with low vision themselves. This paper reports findings from a qualitative inquiry involving focus groups and in-depth interviews with 15 older adults using or considering using low vision assistive devices (Copolillo & Teitelman, 2005). Although the study's original intent was to focus primarily on decisions about LVAD use, psychological and social implications of vision loss emerged spontaneously as a dominant area of concern for participants. From an analysis of 154 codes derived from transcripted data, three themes related to psychosocial experience were generated: (a) Emotional Challenges, (b) Negative Emotional Outcomes, and (c) Indicators of Emotional Adaptation. In this article, individual components of the themes are described using illustrative quotes, and potential practice implications for therapists are presented.

Adaptation, Psychological↗

" 'Just think of TB and Asians', that's all I ever hear": medical learners' views about training to work in an ethnically diverse society.

UNLABELLED: The case for being able to respond effectively to cultural and ethnic diversity in health care is attracting increasing debate in medical education. However research exploring the perspectives of learners is lacking. AIMS: We sought medical learners' perceptions and their perceived training needs in relation to cultural and ethnic diversity in health care. METHODS: A series of nine focus group interviews was conducted with 55 medical learners, including undergraduate students in a UK medical school and a group of postgraduate general practitioners in training. Interview data were analysed using qualitative methods. RESULTS: Participants had a broad but superficial awareness of multicultural issues. This focused upon "difference" with students emphasizing their need to acquire knowledge of different beliefs and practices. Current teaching was perceived as inadequate and limited largely to ethnic patterns of disease. Most felt a need for greater training. They regarded development of particular communication skills, such as working with interpreters as helpful. Beyond avoiding stereotyping, learners rarely identified reflecting upon their attitudes or the issue of racism as important. Students anticipated a range of potential problems for further training, but sought learning that was relevant, practically oriented and stimulating. CONCLUSIONS: The study points to learners' experience of inadequate training but suggests a willingness to learn more. The possible predominance of a "difference" perspective might drive a narrow focus upon learning cultural knowledge at the expense of promoting a balance with self-reflection upon attitudes and developing generic skills. Educators might heed learners' views about how they should be taught successfully.

Attitude of Health Personnel↗

Communication between consultants and referring physicians: a qualitative study to define learning and assessment objectives in a specialty residency program.

BACKGROUND: Outpatient consultation constitutes a major part of medical practice. However, little is known about the skills which should be taught to residents in order for them to improve their consultant-referring physician relationships. PURPOSES: To specify the consultant skills which are required to ensure an effective communication between specialists and referring physicians. METHODS: A qualitative study based on (a) a literature search and (b) focus group interviews. RESULTS: Skills thus identified and described are classified in two groups: observable skills and principles/attitudes. CONCLUSIONS: The consensual specification of these abilities permits a greater efficacy in the teaching of consultant skills.

Ambulatory Care↗

Detection of intentional sub-optimal performance on a computerized finger-tapping task.

Twenty-four undergraduates were assigned to two groups to determine if the T3 computerized finger-tapping task could discriminate between persons motivated to perform optimally and those motivated to perform sub-optimally. Group HI was instructed to simulate a head-injured person undergoing an insurance evaluation, whereas group J was instructed to simulate an applicant undergoing a job interview. Group HI tapped slower, demonstrated less fatigue, less similarity between their right- and left-hand performance, and showed less of a speed advantage for the preferred hand. While group HI displayed less variability for the non-preferred hand, the groups did not differ on variability for the preferred hand. Therefore, the T3 successfully discriminates on multiple measures between persons simulating optimal and sub-optimal performance.

Adolescent↗

Adaptational process of parents of pediatric oncology patients.

This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus group interviews, observations, medical chart review, nurses' note, and researchers' reflexive journals. The findings suggest that parents adapt to their children's cancer by a dynamic process; i.e., they modify their coping tasks and related strategies as clinical events (e.g., diagnosis, side effects, relapses, or death) occur. This adaptational process consisted of five components: confronting treatment, maintaining family integrity, establishing support, maintaining emotional well-being, and searching for spiritual meaning. Related factors such as coping tasks are described.

Adaptation, Psychological↗

Decisions about prenatal testing for chromosomal disorders: perceptions of a diverse group of pregnant women.

We conducted a study to elucidate factors influencing women's decisions regarding prenatal genetic screening for and diagnosis of chromosomal disorders and to learn about their experiences with these tests and with the medical system. Using focus group interviews and questionnaire assessments, we obtained detailed impressions of a diverse group of 75 pregnant women. Participants varied with respect to race/ethnicity, religious background, and reproductive history, as well as in their decisions about use of prenatal screening and diagnostic testing. Substantial variation surfaced in attitudes toward testing. Factors influencing women's views included available resources, feelings about having a child with Down syndrome, moral beliefs, family and social influences, perceptions of one's own health, the difficulty of becoming pregnant, and willingness to put the fetus at elevated miscarriage risk. Such findings indicate that age-based policies regarding access to prenatal diagnoses that, among other reasons, are based on the balance of risks between bearing a child with a chromosomal abnormality versus procedure-related loss are incompatible with the range of concerns that women bring to this decision and the weight individual women may assign to the outcomes.

Abortion, Eugenic↗