Mothers' perspectives of the experience and impact of caring for their child with a life-limiting neurodevelopmental disability.

BACKGROUND: This study explored mothers' perspectives of the experiences and impact on themselves and their family when their child has a life-limiting neurodevelopmental disability. METHODS: Twelve mothers were interviewed and topics included mothers' experiences of caring, the impact on themselves and their family of care provision, and the management of day-to-day life. Data were analysed using thematic analysis. RESULTS: Four themes were identified. "Starting Out" relates to mothers' experiences of the birth of their child and the aftermath. "Keeping the Show on the Road" describes the strategies families employ to manage life day to day and the resources they use. "Shouldering the Burden" describes the range of physical, psychological, and social consequences of the situation for mothers and the family. "The Bigger Picture" relates to the world outside the family and how this is navigated. CONCLUSIONS: Findings suggest mothers' overall experiences are characterized by a constant struggle, with evidence of negative impacts on family life, though there is also evidence of resilience and coping. Implications regarding the provision of services are discussed.

Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange.

This study examined participants' views on children's participation in information-sharing and communication interactions. A descriptive qualitative approach was taken with individual interviews held with children (The term 'children' is used to denote both children and adolescents and to avoid cumbersome repetition.) aged 7-16 years (n = 20), their parents (n = 22) and healthcare professionals (n = 40) at a children's hospital in Ireland. Data were analysed using the constant comparative method and managed with NVivo (version 8). The findings indicate that professionals strongly supported an open and honest approach to information-sharing; however, this viewpoint was not shared by all parents. The need to maintain hope and spirit and promote an optimistic identity influenced the amount and type of information shared by parents. Children trusted their parents to share information, and valued their parents' role as interpreters of information, advocates, and communication buffers. Most professionals endorsed parents' primacy as managers of information but experienced difficulty navigating a restricted stance. This study adds important insights into the complexities of information-sharing in triadic encounters. Professionals need to maintain an open mind about information-sharing strategies families may choose, remain sensitive to parents and children's information requirements and adopt a flexible approach to information provision.

External breast prostheses in post-mastectomy care: women's qualitative accounts.

A good-quality external breast prosthesis and prosthesis-fitting service is an integral part of the recovery process post-mastectomy. However, this is an area of care that has minimal information or research available. The aim of this research was to investigate women's experience of the provision, fitting, supply and use of breast prostheses in Ireland. To ascertain women's own personal and subjective experiences, five focus groups with 47 women recruited through national cancer advocacy/support organizations and four Follow-up Breast Clinics throughout Ireland were conducted. As a result, five main themes emerged: (1) The fitting experience--Fitting? (2) Post-mastectomy products--Having? (3) Cost--Affording? (4) Information--Knowing? and (5) Adaptation--Accepting? The emerging themes pinpointed the impact of the fitting experience, fitting environment and the qualities of a prosthesis fitter on a woman's experience in obtaining a first or replacement breast prosthesis; the importance of the physical characteristics of the prosthesis and mastectomy bras; cost, affordability and entitlements; a lack of and perceived difficulty in getting information; and the myriad of personal and social impacts of a breast prosthesis for the woman. These findings are integral for the development of standards of practice in the fitting and supply of external breast prostheses in post-mastectomy care.

Experiences in the provision, fitting and supply of external breast prostheses: findings from a national survey.

A good-quality external breast prosthesis and prosthesis-fitting service is integral to recovery post-mastectomy. However, this area of care has minimal information or research available. The aim of this study was to investigate women's experience of the provision, fitting, supply and use of breast prostheses in Ireland. Three national surveys were undertaken with women (n = 527), breast care nurses (BCNs) (n = 32) and retail prosthesis fitters (n = 12). The findings identified the importance of the prosthesis for shape, appearance to self, appearance to others, sense of well-being, self-confidence and femininity. Dissatisfaction with weight, comfort and movement of the prosthesis was identified. Cost and travel distance were found to influence the replacement of the prosthesis. Dissatisfaction emerged with the display and choice of products, and brochure availability at the prosthesis fitting. Women preferred to be fitted for the first silicone prosthesis by a BCN in a hospital setting whereas for the replacement prosthesis they preferred a trained fitter at a specialized prosthesis supplier. BCNs and retail fitters identified the need for service guidelines and increased availability of professional development opportunities in prosthesis-fitting. These findings contributed to the development of standards of care for breast prosthesis-fitting services to benefit women and to provide guidelines for those providing the service.

Coronary artery restenosis: a paradigm of current treatment approaches.

Percutaneous coronary artery revascularization has now evolved to a status where angioplasty and stenting have become routine practice for the treatment of significant obstructive atherosclerotic vascular disease. Angioplasty and stenting have become routine practice for the treatment of significant obstructive atherosclerotic vascular disease. Neointimal formation is the pathological basis for restenosis after coronary angioplasty and stenting. The authors discuss the current methods to treat and prevent coronary artery restenosis.

Day service programmes for people with a severe intellectual disability and quality of life: Parent and staff perspectives.

This study focuses on the contributions of a community and campus based day programme to the quality of life of programme participants with a severe level of intellectual disability from the perspective of parents and staff. Qualitative interviews were carried out with parents and staff to explore the contribution that the two programmes had to participants' quality of life in the 6 months since the community based programme began. Schalock and Keith's Quality of Life Questionnaire was administered to supplement the qualitative data. Results indicated that the community based programme contributed more to participants' quality of life over the preceding 6 months than the campus based programme. This study revealed that community based participants' new-found social roles, their hobbies and their work opportunities had a positive effect on their quality of life.

Cross-cultural examination of the tripartite model with children: data from the Barretstown studies.

The Positive and Negative Affect Scale for Children (PANAS-C) and the Physiological Hyperarousal Scale for Children (PH-C) were administered to a group of 240 children from European countries to determine their utility in examining the tripartite model of anxiety and depression in a cross-cultural sample. Most of the children (n = 196) had been diagnosed with a medical illness; the remainder were siblings of these youngsters (n = 44). Only slight variations were noted in items between this sample and samples from the United States. Despite these minor differences, 3 distinct scales measuring the positive affect, negative affect, and physiological hyperarousal constructs of the tripartite model were identified. These findings illustrate that the PH-PANAS-C provides a useful measure of the tripartite model in a cross-cultural sample of youth. The findings also demonstrate that the tripartite model is generalizable to a cross-cultural milieu.

Cancer occurrence and screening in family practice. A 20-year experience.

BACKGROUND: This article is a sequel to a previously published article describing the occurrence of cancer in a rural family practice and the contribution of screening to the diagnosis of breast, colorectal, and cervical cancer. Together, the two articles describe a 20-year family practice experience in diagnosing and screening for cancer. METHODS: The study is a retrospective chart review of all cancers diagnosed in a family practice from January 1985 through December 1994. Records of a regional tumor registry were reviewed to validate and ensure completeness of the cancer diagnoses. RESULTS: One hundred twenty-one cancers were identified during the 10-year study period in a population of approximately 4000 patients. Screening by fecal occult blood testing identified 11 of 20 colorectal cancers, mammography and physician examination identified 9 of 12 breast cancers, and a program of biannual Papanicolaou smears resulted in the diagnosis of 3 of 3 cervical cancers. Only 3 melanomas, 3 ovarian cancers, and 1 testicular cancer were diagnosed in this practice during the entire 20 years of the combined studies. CONCLUSIONS: The five most common cancers--skin, colorectal, lung, breast, and prostate--accounted for 71% of the cancers diagnosed. A high rate of provider and patient compliance with screening was achieved. Screening detected a majority of breast and colorectal cancers. Annual Papanicolaou smear screening would have provided no incremental benefit over the biannual screening used in this practice.

Evaluation of abdominal pain.

This article discusses the approach to evaluation of abdominal pain in the Emergency Department setting. The physiologic differences among visceral, somatic, and referred pain are reviewed, as is the clinical significance of anorexia, nausea, and vomiting. The correlation of historical facts, interrelationships of symptoms, and pain patterns with specific intra-abdominal processes is reviewed. Recommendations for high-yield expedient laboratory studies to facilitate diagnosis are provided. Proficiency in the recognition and interpretation of these clinical symptoms, physical signs, laboratory data, ECGs, and radiographic findings is important when evaluating acutely ill, uncooperative, or unresponsive patients.