Maintaining normalcy: a grounded theory of engaging in HIV-oriented primary medical care

Despite advances in the medical treatment of HIV disease, marginalized populations continue to shoulder a disproportionate burden of HIV/AIDS-related morbidity and mortality. This study explored the process by which clients at HIV-oriented primary care clinics transition from being sporadic users of care to engaging as regular users of care. A model illustrating how participants were striving to maintain normalcy, manage perceptions, and develop life mastery skills contributes to an understanding of living with HIV disease in a social context. Elements of the model are sensitive to nursing interventions aimed at improving health outcomes and reducing health disparities among persons at highest risk.     

The end of life: informal care for dying older people and its relationship to place of death

OBJECTIVE: This study examined the features of informal end-of-life care of older people living in the community and the association between informal care characteristics and dying at home. METHODS: Retrospective data were obtained from interviews and self-administered questionnaires of 56 persons who had been primary caregivers of older relatives in the last three months of their lives. RESULTS: Results showed that informal caregivers of terminally ill older people living in the community provided a considerable amount of personal, household, and management care. Secondary informal caregivers and formal caregivers assisted resident primary caregivers less often than nonresident primary caregivers. Primary caregivers who felt less burdened, who gave personal care more intensively, and/or who were assisted by secondary caregivers, were more likely to provide informal end-of-life care at home until the time of death. CONCLUSIONS: Our study showed that informal care at the end of life of older people living in the community is complex, since the care required is considerable and highly varied, and involves assistance from secondary informal caregivers, formal home caregivers as well as institutional care. Burden of informal care is one of the most important factors associated with home death. More attention is needed to help ease the burden on informal caregivers, specifically with regard to resident caregivers and spouses. Since these resident caregivers were disadvantaged in several respects (i.e., health, income, assistance from other carers) compared to nonresident caregivers, interventions by formal caregivers should also be directed towards these persons, enabling them to bear the burden of end-of-life care.     

Using scenarios to explain life expectancy in advanced cancer: attitudes of people with a cancer experience

Purpose

We sought the attitudes of people with a cancer experience to using best case, worst case, and typical scenarios for survival to explain life expectancy.

Methods

Oncology clinic attendees and Breast Cancer Network Australia (BCNA) members completed a survey describing two formats for explaining life expectancy to a hypothetical patient with advanced cancer—providing either three scenarios for survival or just the median survival time.

Results

Characteristics of the 505 respondents from outpatient clinics (n?=?251) and BCNA (n?=?254) were median age of 58 years, female 74 %, and breast primary 64 %. More respondents agreed that explaining three scenarios (vs. median survival) would make sense (93 vs. 75 %), be helpful (93 vs. 69 %), convey hope (68 vs. 44 %), and reassure (60 vs. 40 %), while fewer respondents agreed that explaining three scenarios (vs. median survival) would upset people (24 vs. 36 %); all p values?<?0.001. Most respondents agreed that each scenario should be presented: best case 89 %, worst case 82 %, and typical 92 %. For information about their own prognosis, 88 % preferred all three scenarios and 5 % a single estimate of the median. Respondents with higher education were more likely to agree that presenting three scenarios would be helpful (95 vs. 90 %, p?=?0.05). Respondents with breast cancer were more likely to agree that explaining three scenarios would upset people (31 vs. 13 %, p?<?0.001).

Conclusions

Most respondents judged presentation of best case, worst case, and typical scenarios preferable and more helpful and reassuring than presentation of just the median survival time when explaining life expectancy to patients with advanced cancer.     

Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life

Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams. Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients.     

A family's beliefs about cancer, dying, and death in the end of life

The purpose of this case study was to describe the beliefs over time of a Swedish family and individual family members about cancer and death and how these beliefs affected their daily lives. Data were collected over 10 months using interviews, conversations, and diary notations. The beliefs were aggregated into eight main beliefs and four themes: Cancer is a deadly threat/death is a liberator, death can be held at bay/death can be lived near, dying is done alone/dying should not be done alone, and life has an end/life is endless. These beliefs appear to oscillate between seemingly contrasting poles. Some beliefs were shared by all family members, whereas others were described by only one or more members of the family. The complexity of daily life in families experiencing life-shortening illness underscores the need of individualized nursing care with openness to difference and collaboration as guiding principles.     

Hospital‐based home care for people with severe mental illness in Taiwan: a substantive grounded theory

Aim and objectives. The purpose of this study is to generate a substantive theory of hospital‐based home care for people with severe mental illness in Taiwan. Background. Despite the documented advantages of hospital‐based home care services, there is a lack of information and understanding regarding the practices, functions and limitations. Currently, there is no model for how those services are to be provided and what factors will affect these services. Design. The grounded theory method of Strauss and Corbin (Basics of Qualitative Research: Grounded Theory Procedures and Techniques, SAGE Publications, 1990) was used to develop a substantive theory through a paradigm model, including causal conditions, context, intervening conditions, action/interaction strategies and consequences. Methods. This study was conducted in six different hospital areas in Central Taiwan in 2007–2008. Data were collected using semi‐structured face‐to‐face interviews. Constant comparative analysis continued during the open, axial and selective coding process until data saturation occurred. Participants were selected by theoretical sampling. When theoretical saturation was achieved, 21 clients with mental illness, 19 carers and 25 professionals were interviewed. Results. A substantive theory of hospital‐based home care for people with severe mental illness in Taiwan was developed. The core category was the process of hospital‐based home care in helping people with severe mental illness, with 15 categories and 33 sub‐categories of the substantive theory. Conclusion. The substantive theory is the first to emerge from hospital‐based home care services in Taiwan. Results showed those services had several effective functions for helping people with severe mental illness and their families. Relevance to clinical practice. The recommendations based on the findings of this research can be used as a guide to improve the delivery of hospital‐based home care services to community‐dwelling people with severe mental illness and their carers.     

Managing the emotional aspects of end of life care for children and young people

Caring for a child at the end of life stage is one of the greatest challenges a nurse can encounter in practice. The way professionals help support, maintain and give comfort to the child and his or her family helps shape the experience the young patient is about to face. Whatever the stage of your nursing career it is likely you will provide end of life care to a child or young person and their family. This article is designed to help enable professionals to cope emotionally and provide the best quality of care in an emotionally charged situation. The information contained may be used as a guidance tool through is challenging and difficult time.     

Integrative review: parent perspectives on care of their child at the end of life

This integrative review aims to describe parents' perspectives on end-of-life care for their children. Fifteen publications from a literature search of the Cochrane databases, CINAHL, MEDLINE, and PSYCHinfo were included in the review. Recurring themes included poor communication/lack of information, strained relationships/inadequate emotional support, parental need to maintain parent/child relationships in life and death, quality of care continues after the death of the child, influence of services/planning on parent/child impacts quality of life, and the difficult decision to terminate life support. No studies were identified that focused on parents' perspectives on the care their child received at the end of life. Further research that focuses on the special needs of parents at this difficult time is needed.     

末期癌症患儿疼痛管理

INTRODUCTIONTherecanbemultiplesourcesofpainexperiencedbyeachpatient．Managingthispainrequiresexpertcare．Wolfeandresearchers[１]interviewed１０３parentsofchildrenwhohaddiedofcancerandfoundthat８２％ofthechildrensufferedagreatdealoralotfrompainaccordingtotheirparents＇report．７６％ofthesepatientsweretreatedforpainbuttreatmentwasviewedassuccessfulinonly２７％ofthepatients．Dataisclearthatmanychildrenwithcancerattheendoflifesuffersubstantially．Masteringthemethodofpainmanagement，thatcanrai…     

Pain management for the child with cancer n end of life care

Data is clear that many childeren with cancer at the end of life suffer substantiall.Treatment was viewed as successful in only 27% of the patients.Pain is children who are dying os cacer can be complex and challenging to mannage.Children and parents are equal partners with members of the health care team in managing the patient‘s pain.Prevention and alleviation of pain is a primary goal of care in the child dying of cancer.Children dying of cancer may require aggressive dosing of analgesics.Medications that do not have a dose maximum should be escalated,sometimes rapidly ,to achieve adequate pain control or to maintain pain control when tolerance has occurred.The nurse‘s s role in caring for children who are in pain at the end-of-life includes assessment,identifying expected outcomes,and plan-ning ,performing,and evaluating interventions.     

Advance care planning: preferences for care at the end of life

Predictors of patient wishes and influence of family and clinicians are discussed. Research findings on patient decision-making relating to preferences in end-of-life care are described. Advance directives and durable powers of attorney are defined and differentiated. Most patients have not participated in advance care planning and the need for more effective planning is documented. Appropriate times for discussions of such planning are described. Scenarios discussed include terminal cancer, chronic obstructive pulmonary disease, AIDS, stroke, and dementia. Patient satisfaction is discussed, as is a structured process for discussions about patient preferences. Results of patient responses to hypothetical scenarios are described. Invasiveness of interventions, prognosis and other factors that favor or discourage patient preferences for treatment are discussed. Findings resulting from research funded by the Agency for Healthcare Research and Quality (AHRQ) are discussed. This research can help providers offer end-of-life care based on preferences held by the majority of patients under similar circumstances.     

Developing supportive care for family members of people with lung cancer: a feasibility study

Purpose Families provide crucial support, yet their own needs often go unrecognised and, as a consequence, remain unmet. The purpose of this study was to evaluate a newly developed supportive intervention for family members of patients with lung cancer. Materials and methods A consecutive convenience sample of 25 family members of people with lung cancer received an individualised supportive intervention from a support nurse over a period of 12 weeks. This involved in-depth assessment followed up with a tailored plan of ongoing support to address informational, emotional, social and practical needs. A concurrent mixed method design explored perceptions and outcomes of those receiving the intervention and assess its appropriateness, acceptability and feasibility. Data were collected through a semi structured telephone interview with family members, and support nurses maintained a contact log. A questionnaire addressed emotional well-being [general health questionnaire (GHQ-12)], quality of life [quality of life family version (Family QoL)] and needs for care [family inventory of needs (FIN)]—at baseline and week 12. Results Family members perceived they had derived benefit from the intervention. Certain elements clearly emerged as important for participants, including being listened to by someone who could facilitate emotional expression, being provided with individually tailored information and receiving practical help and advice. Outcomes mapped to five main areas: information needs, communication between family members, emotional well-being, being supported and facilitating family member’s role. There was a trend for more needs to be met and quality of life and emotional well-being to improve at week 12. Conclusion This study has demonstrated that a supportive intervention for family members of patients with lung cancer can be delivered to good effect by experienced cancer nurses. The active components of the intervention have been distinguished and provide the basis for development of a larger sufficiently powered trial.     

The aphasic person's views of the encounter with other people: a grounded theory analysis

Being affected by aphasia influences the total life experience. The aim of this study was to generate a theoretical model, from a nursing perspective, of what aphasic persons (n = 12) experience in encounters with other people. Data were collected through interviews which adopted a biophysical, socio-cultural and psychological approach and then analysed using grounded theory method. Two main categories emerged, namely: 'interaction' and 'support'. Encountered experiences led to: 'a feeling of having ability'; 'a feeling of being an outsider'; and 'a feeling of dejection or uncertainty'. The feeling state was dependent on whether the interaction was 'obstructed' or 'secure' and on whether the support resulted in 'strengthened' or 'impaired' self-esteem. Therefore nurses need to give support that enhances patients' self-esteem and which results in them gaining a positive and realistic view of their aphasia, as well as involving those around them in this perspective. This then will give the possibility for the patient to turn the interaction process from an obstructed into a secure one.     

Think about it: a prompt to discuss end of life choices

A team of nurses in East Lancashire developed a communication tool to help initiate end-of-life discussions and support advance care planning. This article describes the development, implementation and evaluation of the "Think about it" communication prompt.