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PubMed2005

Health care transition: youth, family, and provider perspectives.

OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT? METHODS: A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti. RESULTS: Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers. CONCLUSION: This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults' and family members' lack of preparation for successful participation in the adult health care system contributes to problems with HCT.

Adolescent↗
PubMed2002

Patients' beliefs: do they affect tuberculosis control? A study in a rural district of South Africa.

SETTING: A rural district of South Africa. OBJECTIVES: To describe the beliefs and experiences about tuberculosis of patients and community members and to suggest how these affect presentation to health services and treatment adherence. DESIGN: A descriptive study using structured interviews with individual patients, and focus group interviews with patients and community groups. RESULTS: There is a strong belief in this community that tuberculosis is the result of breaking cultural rules that demand abstinence from sex after the death of a family member and after a woman has a spontaneous abortion. People believe that the resulting disease can only be treated by traditional healers. This delays presentation to hospitals or clinics. There is also a belief in a 'western' type TB that can spread from sufferers or is due to environmental pollution or to smoking or alcohol excesses. A number of factors were cited that influenced adherence to treatment. These included the stigma of TB, the belief that there should be abstinence from sex while on treatment, difficulties accessing health services, long waits and unacceptable health worker attitudes. CONCLUSIONS: With the increasing rates of tuberculosis in South Africa, strenuous measures are needed to implement a good control programme that will increase the cure rate of tuberculosis patients. The results of this study suggest the need for health workers to learn about local beliefs that may influence presentation and adherence, and for traditional and western health workers to collaborate.

Adolescent↗
PubMed2000

Change in primary health care: new wine in old bottles?

Describes the findings from the first year of an evaluation of change at a PMS+ site in West Cumbria. The study has used qualitative methods including non-participant observation at the site; face to face interviews with 28 clinical staff; group interviews with administrative and secretarial staff; and the collection of documents. Analysis of the data against a set of "outcome indicators" shows that significant progress has been made towards implementing the model of primary care delivery described in the pilot proposal. Multidisciplinary working is developing in the clinical action groups and the establishment of a primary care emergency unit has changed general practitioner workloads. The new organisation structure is not yet working wholly as anticipated but recently initiated changes are intended to strengthen the role and authority of the management board.

Data Collection↗
PubMed2001

[Measurement of quality of care and the "soft values" at a pediatric department].

INTRODUCTION: Medical care must be provided in accordance with high professional standards and patients' needs and priorities. MATERIALS AND METHODS: In this study, interviews with parents and focus group interviews with the health care staff (doctors and nurses) were conducted in order to set quality standards and define related indicators for emergency admittance to a paediatric department. According to the standards, the quality of care was measured with the indicators developed. One hundred and fifty episodes of care were assessed by questionnaires covering parent satisfaction, registration of waiting times, and investigation of case records. RESULTS: In 17% of the episodes, there were waiting times of more than 2 hours before seeing a doctor. Various quality problems were identified. Thirty-one medical standards of the episodes of care were assessed in a structured audit process. The results of the clinical audit showed that some standards were met only in 50% of the episodes. DISCUSSION: Quality development must be implemented on a documented basis. Improvements have been implemented according to the results.

Adult↗
PubMed2004

The impact of cervical cancer and dysplasia: a qualitative, multiethnic study.

STUDY PURPOSE: Cervical cancer (CCA) remains a health challenge nationally and globally. In the US, more than 12,000 women are diagnosed each year with invasive cervical cancer and more than 220,000 are living with a history of this diagnosis (ACS, 2003). This qualitative study aims to examine health related quality of life (HRQOL) from a culturally consistent framework. METHODS: Key-informant interviews (N = 23) and focus group interviews (N = 51) were conducted with a multiethnic sample of cervical cancer survivors (CCS) recruited from hospitals and clinics. ANALYSES AND RESULTS: Content and theme analyses were conducted. Findings indicate that cultural and family factors often promote coping and well-being, but may foster delay in care seeking and self-deprecation, particularly among Latina and Asian CCS. Faith in God was relied on for comfort, strength and healing by many survivors, especially the African Americans and Latinas. Overall, our participants reported moderate HRQOL. However, persistent concerns included treatment side-effects; difficulties accessing quality care; inadequate health insurance, barriers to good physician-patient relationship such as language and doctors' time constraints; insufficient knowledge about CCA due to limited information from medical staff; lack of control over treatments; social support, family well-being, functional and work issues; and sexuality and relationship concerns. Socioeconomic status, ethnicity, cultural beliefs and practices, age and family support dictated the level of cancer-related burden. CONCLUSION: Invasive CCA is primarily a cancer of women who are economically disenfranchised. Women with a CCA diagnosis are disproportionately challenged by lack of resources including quality, affordable health care and psychosocial services. CCS experience persistent medical, psychological, social, and relational concerns. Information concerning CCS is needed, particularly in Spanish, Vietnamese and Korean. There is an urgent need for further research to understand the risk factors, and the social and cultural mediators of cancer-related HRQOL for CCS.

Adult↗
PubMed1996

The social organization of nutritional inequities.

An institutional ethnography, a qualitative research methodology grounded in critical social science, was undertaken with the purpose of explicating the social organization of nutritional inequities among socially/economically disadvantaged women and their families living in an urban centre in Nova Scotia, Canada. Methods included participant observation of food and nutrition practices in the homes of five socially disadvantaged families and at a community drop-in center in a low-income neighborhood; in-depth individual interviews with family members; and group interviews with an additional 28 participants at the community center. Tape recordings and field observation notes were analyzed thematically, preserving the perspectives of the research participants. The explication began with the examination of the everyday household work of feeding the family which provided an entry point to broader social relations working outside of the households, but evident within them. At the household level, the gendered, 'invisible' nature of feeding work became readily apparent. The class context of feeding work became particularly evident upon examination of the practice of procuring food. The apparently simple act of buying groceries was complicated by limited access to inexpensive stores. The families developed innovative strategies to enhance their abilities to procure food within their limited means. However, because of inadequacies of subsistence welfare policies, they frequently were sufficiently short of funds to necessitate reliance on charity for food. Analysis of such social policy revealed that public and professional discourses organizing nutritional inequities were informed by individualistic ideology. Yet, individualistic discourses could not provide an adequate understanding of the experiences of the research participants. The impact of individualistic professional discourse included the irrelevance of nutrition education practices based upon information dissemination. In sum, the research revealed nutritional inequities as embedded within social constructs such as gender, class, commerce, policy and discourse. The educative nature of the participatory research process empowered study participants to initiate structural change in commercial pricing practices. Through making the analysis available to others, including policy makers, it may be possible to work toward changing the oppressive social organization which perpetuates inequities. The research calls for a reorientation in community educational practice from the dominant individual orientation to a social orientation.

Adolescent↗
PubMed1997

Schistosomiasis and the use of indigenous plant molluscicides: a rural South African perspective.

In the last decade plant molluscicides have received considerable attention in the search for cheaper alternatives to chemotherapy and synthetic molluscicides in schistosomiasis control. The attraction of a locally grown molluscicidal plant is based on the development of a philosophy of self-reliance and community involvement. This approach is dependent on community recognition of the infection as a public health problem and their acceptance of proposed control measures. The objectives of this study were: (i) firstly, to assess the knowledge of schistosomiasis in a rural community and their attitude to the use of indigenous plant molluscicides; (ii) secondly, to assess the prevalence and intensity of infection in relation to its severity as perceived within the community. Study sites were located at Mtwalume (KwaZulu-Natal, South Africa). Sixty-nine community members were interviewed during six focus-group interviews and two depth interviews. Urine and stool samples (354 and 306, respectively) from children and young adults (2-25 years old) were analysed for Helminth and Protozoal infections. Results indicate that despite a poor understanding of schistosomiasis, it is a primary health concern for those dependent on river-water for their water requirements. Concern for schistosomiasis is indeed matched by a prevalence of 75.14% for Schistosoma haematobium. Oral antischistosomal drugs are inaccessible primarily due to the cost of transport and secondarily, due to the cost of treatment. The concept of molluscicidal control, as an alternative, was enthusiastically received by all respondents.

Adolescent↗
PubMed2000

Perceptions of the role of the school in providing information and support to adolescent children of women with breast cancer.

Little is known about the needs of adolescents of women with breast cancer. The purpose of this study was to describe the perceptions of adolescents (ages 12-20) about the role of the school in assisting them in dealing with the cancer experience. An exploratory, qualitative study was done to elicit detailed descriptions of adolescent's needs for information and support in response to their mother's breast cancer. A convenience sample of 31 adolescents of women in five illness phases participated in semi-structured interviews. In addition, two focus group interviews were conducted. Interviews were tape-recorded, transcribed and analysed using content analysis techniques. Findings specific to the adolescents' perceptions of the role of the school were discussed according to content, type, amount, timing, provider and quality of information. Support needs were discussed as type of support, source of support, amount, timing and focus. Although school personnel attempted to be supportive and adolescents received generic information about cancer, overall the needs of the adolescents were not adequately addressed. Recommendations for schools and health services in assisting adolescents to cope with this major life experience are made.

Adolescent↗
PubMed2003

Life with a rare chronic disease: the scleroderma experience.

BACKGROUND: Little is known about the experience of living with a rare disease and how people with rare diseases cope with not only the disease but also the reactions of others. Scleroderma is a rare chronic connective tissue disease that results in fibrotic changes involving all or some organs of the body. The two types of scleroderma are systemic scleroderma, which involves the skin and internal organs and is the more serious type, and local scleroderma, which attacks the skin and surrounding tissues. Some people with scleroderma have signs that are visible to outsiders, while others have invisible signs. Having this chronic condition and being different from the general population may subject people with scleroderma to stigmatization by others. AIM: The aim of this study was to understand, from the individual's perspective, the experience of living with scleroderma. METHOD: Focus group interviews were conducted with two groups of individuals with scleroderma. Because of the rarity of the disease and the illness of the participants, only two groups were held. The same questions were asked of both groups. A moderator and assistant guided the groups. FINDINGS: Data analysis revealed five themes: physical manifestations, disclosure/non-disclosure to others, living, being normal and facing the future. The data are discussed in light of participants' having visible signs, invisible signs and the rarity of their condition. For those with visible signs, disclosure was automatic. They were conscious of being different from others without scleroderma. Those with invisible signs managed their disease information in such a way as to minimize the stigma of being different. The rarity of the disease added the problem of others not understanding their difficulties. Those who disclosed their disease not only had to deal with the reactions of others, but faced the additional burden of having to explain their condition. CONCLUSION: Nurses may have little knowledge about scleroderma. It is possible that they, through their ignorance of such rare conditions, may stigmatize individuals. Through understanding about rare diseases will they be able to teach patients the skills necessary to help them cope with their symptoms, as well as the reactions of others to their diagnosis and appearance.

Adaptation, Psychological↗
PubMed1998

The other side of the story. Student narratives on the California Drug, Alcohol, and Tobacco Education Programs.

Within the context of a large-scale, comprehensive evaluation of the California Drug Alcohol Tobacco Education (DATE) program, this study sought to extend knowledge of student perceptions of prevention education using a naturalistic approach. The constant comparative method was used to analyze 40 focus group interviews of risk and thriving groups conducted in 11 high, middle, and elementary school districts. This article presents three assertions generated solely from 490 "narrative stories" found in the data set. "At-risk" and "thriving" students at all three levels of schooling (a) use "story" to make sense of prevention education, and (b) distinguish use from abuse. High school students of both groups (c) believe that hearing only one side of the substance use/abuse story and strict expulsion policies further alienate students most in need of help. Implications for the use of story as an assessment tool are discussed, as are implications for substance use prevention policy.

Adolescent↗
PubMed1996

Elder care recipients' care-seeking process.

The care-seeking process used by elders residing in a continuing-care retirement community to elicit care from caregivers and engage caregivers in care interactions is described. Generated from 8 months of ethnographic field research that incorporated semistructured interviewing, participant observation, and focus group interviewing data collection strategies with 47 elders, the care-seeking process emerged as the sequential phases and stages that evolved over time in elders' interactions with their formal and informal caregivers. The findings extend what is currently known about the active and thoughtful role elders assume in their care interactions. An understanding of the ways elders elicit care and engage caregivers may assist nurses to maximize their care interactions with elders.

Activities of Daily Living↗
PubMed2006

Public sector nurses in Swaziland: can the downturn be reversed?

BACKGROUND: The lack of human resources for health (HRH) is increasingly being recognized as a major bottleneck to scaling up antiretroviral treatment (ART), particularly in sub-Saharan Africa, whose societies and health systems are hardest hit by HIV/AIDS. In this case study of Swaziland, we describe the current HRH situation in the public sector. We identify major factors that contribute to the crisis, describe policy initiatives to tackle it and base on these a number of projections for the future. Finally, we suggest some areas for further research that may contribute to tackling the HRH crisis in Swaziland. METHODS: We visited Swaziland twice within 18 months in order to capture the HRH situation as well as the responses to it in 2004 and in 2005. Using semi-structured interviews with key informants and group interviews, we obtained qualitative and quantitative data on the HRH situation in the public and mission health sectors. We complemented this with an analysis of primary documents and a review of the available relevant reports and studies. RESULTS: The public health sector in Swaziland faces a serious shortage of health workers: 44% of posts for physicians, 19% of posts for nurses and 17% of nursing assistant posts were unfilled in 2004. We identified emigration and attrition due to HIV/AIDS as major factors depleting the health workforce. The annual training output of only 80 new nurses is not sufficient to compensate for these losses, and based on the situation in 2004 we estimated that the nursing workforce in the public sector would have been reduced by more than 40% by 2010. In 2005 we found that new initiatives by the Swazi government, such as the scale-up of ART, the introduction of retention measures to decrease emigration and the influx of foreign nurses could have the potential to improve the situation. A combination of such measures, together with the planned increase in the training capacity of the country's nursing schools, could even reverse the trend of a diminishing health workforce. CONCLUSION: Emigration and attrition due to HIV/AIDS are undermining the health workforce in the public sector of Swaziland. Short-term and long-term measures for overcoming this HRH crisis have been initiated by the Swazi government and must be further supported and increased. Scaling up antiretroviral treatment (ART) and making it accessible and acceptable for the health workforce is of paramount importance for halting the attrition due to HIV/AIDS. To this end, we also recommend exploring ways to make ART delivery less labour-intensive. The production of nurses and nursing assistants must be urgently increased. Although the migration of HRH is a global issue requiring solutions at various levels, innovative in-country strategies for retaining staff must be further explored in order to stem as much as possible the emigration from Swaziland.

Journal Article↗
PubMedDate not supplied

Expectations and experiences of newly recruited Filipino nurses.

This article reports the preliminary results of a small study into the changing expectations of newly migrated Filipino nurses at a London hospital. The aim was to identify initial expectations and experiences. Focus group interviews were conducted with two groups of nurses shortly after their arrival. Career prospects and salaries were key factors influencing the decision to come to the UK. Differences emerged between the nurses' expectations of the nursing role and their actual experience on the wards. Adjusting to the new system of health care proved stressful but was helped by the provision of support services. Factors that may promote successful adaptation and retention included equal opportunities with respect to training and promotion and the use of culturally sensitive orientation programmes. Strategies to reduce social isolation may also be important. The results will be used to inform the trust's retention strategy and will also be of interest to other NHS trusts recruiting Filipino nurses and nurses from other countries.

Acculturation↗
PubMed2002

Employed mothers: stress and balance-focused coping.

This critical feminist grounded theory study examined how employed mothers coped with the stress of managing multiple responsibilities in family, health, and paid work. Over a 2-year period, 20 mothers employed as support staff in a large, publicly funded institution participated in repeated individual in-person and telephone interviews and in a focus group. Interviews were transcribed and analyzed using constant comparative methods. The women experienced stress from continuous demands in paid and family health work compounded by time constraints, inflexible expectations, conflicting demands, compromised personal resources, and inadequate support. Most of their coping strategies were individual, such as focusing on priorities, but some women used shared family decision-making. Findings support both individual and family stress and coping theory, yet underscore the need to explicate social-ecological influences such as relational power. Strategies that can enhance coping and reduce stress are described for nurses who work with women and families.

Adaptation, Psychological↗
PubMed2003

Improving participation in Chlamydia screening programs: perspectives of high-risk youth.

BACKGROUND: Many young people at highest risk for chlamydial infection do not use chlamydia screening services. OBJECTIVES: To describe young people's beliefs and opinions about obstacles to and motivators for obtaining testing and to provide recommendations for how to improve youth participation in chlamydia screening programs. METHODS: Eight focus group interviews (4 male and 4 female groups) were conducted with young people using a semistructured interview guide. Thirty-two male and 23 female volunteers (mean age, 18.2 years; age range, 15-24 years) were recruited from Job Corps and Department of Youth Services sites. The main outcome measure was categorization of textual data using content analysis techniques. Data were coded by 2 investigators into categories of responses based on research questions and spontaneously offered comments. Satisfactory intercoder agreement was achieved. RESULTS: Participants described many obstacles to testing, including concern that someone will know they were tested or tested positive, fear about discovering they have a sexually transmitted disease, and fear of acquired immunodeficiency syndrome. Many participants were unsure what physical effects chlamydia produced or thought it was possible to die of a chlamydial infection. Participants recommended providing more information about the effects of chlamydia, availability of urine testing, and ease of treatment to motivate more young people to seek testing. They also emphasized the need to make sexually transmitted disease screening services more private and confidential. There was an overwhelming interest in using a home Chlamydia test (much like a home pregnancy test) if one were available. CONCLUSIONS: To increase youth participation in screening programs, it will be necessary to address their concerns, dispel misconceptions, and provide more information about chlamydia. A home Chlamydia test might be one way to increase screening.

Adolescent↗
PubMed2003

Voices from the pipeline: high school completion among rural Latinos.

Although significant strides have been made in increasing the numbers and proportions of minorities in nursing, at 2.0% of the RN population (MinorityNurse.com, 2001), Latinos continue to lag far behind other minorities (Buerhaus & Auerback, 1999). As the fastest growing minority group in the United States--an increase from 9% of the population in 1990 to 11.9% in 2000 and projections of 14.6% by 2001 and 17% by 2020 (U.S. Census, 2001)--Latinos' under-representation in all fields of health care is expected to continue unless concerted efforts are taken to recruit and educate more students. This paper presents an analysis of narratives of high school completion as articulated by Latino adolescents in group interviews. Narrative inquiry of the focus group data found three major categories of supports and challenges: peers, family, and schools. The paper concludes with a discussion of how these findings can be used to develop community based interventions to increase high school completion and thus increase the pool of applicants for nursing and other health careers.

Adolescent↗
PubMed2005

What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer.

This qualitative study examined the questions of what cancer support groups provide that other supportive relationships do not, and what the self perceived consequences are of support group attendance. Nine representative Australian cancer peer support groups, consisting of a total of 93 interviewees, 75 women, and 18 men, with a mean age of 62, took part in participant observation and focus group interviews, with the data analysed using positioning theory. Support groups were positioned by participants as providing a unique sense of community, unconditional acceptance, and information about cancer and its treatment, in contrast to the isolation, rejection, and lack of knowledge about cancer frequently experienced outside the group. Groups were also positioned as occasionally emotionally challenging, in contrast to the experience of normalising support from family and friends. Increased empowerment and agency were positioned as the most significant consequences of group support, consisting of increased confidence and a sense of control in relation to self, living with cancer, and interactions with others, in particular the medical profession. The support group was also positioned as facilitating positive relationships with family and friends because of relieving their burden of care, by providing a safe space for the expression of emotion. No difference was found between professionally led and peer led support groups, suggesting that it is not the professional background of the leader which is of importance, but whether the group provides a supportive environment, mutuality, and a sense of belonging, and whether it meets the perceived needs of those attending. It is suggested that future research should examine the construction and experience of social support in those who drop out of, or who do not attend, cancer support groups, in order to provide further insight into the contrast between social support within groups and support in other contexts.

Adult↗