Using Social Worlds Theory to Explore Influences on Community Nurses’ Experiences of Providing Out of Hours Paediatric Palliative Care

Abstract Background: Paediatric oncology palliative care in the community is rare and nationally there is a lack of standardisation of out of hours nursing service provision. Objectives: This paper seeks to explore influences on the experiences of paediatric nurses providing out of hours palliative care within the family home to children with cancer. The study used social worlds theory to aid identification and demonstration of the findings. Methods: Twelve community-based palliative cases were purposively selected from children with cancer treated at one regional centre. Tape-recorded interviews were undertaken with 54 health professionals (general practitioners, community nurses and allied health professionals) involved in providing their palliative care and five facilitated case discussions completed. Data analysis followed a grounded theory approach; chronological comparative data analysis identifying generated themes. Social worlds theory was used as a framework to examine the data. Results: Nurses’ experiences are shaped by their social world and those of the nursing team,child and family and the inter-professional team providing the care. The lack of a formalised service, sub-optimal inter-professional working and impact of social worlds influence the experience of the nurse. Conclusions: Social worlds theory provided a new perspective in understanding these experiences based within a paediatric palliative care setting, knowledge that can be used to inform service provision.

Evaluation of Community-led Complementary Feeding and Learning Sessions

Thesis (Master's)--University of Washington, 2016-08

Evaluating a School Community Linked Physical Activity Intervention Programme: a Multi-level Analysis.

Previous research has highlighted the importance of positive physical activity (PA) behaviors during childhood to promote sustained active lifestyles throughout the lifespan (Telama et al. 2005; 2014). It is in this context that the role of schools and teachers in facilitating PA education is promoted. Research suggests that teachers play an important role in the attitudes of children towards PA (Figley 1985) and schools may be an efficient vehicle for PA provision and promotion (McGinnis, Kanner and DeGraw, 1991; Wechsler, Deveraux, Davis and Collins, 2000). Yet despite consensus that schools represent an ideal setting from which to ‘reach’ young people (Department of Health and Human Services, UK, 2012) there remains conceptual (e.g. multi-component intervention) and methodological (e.g. duration, intensity, family involvement) ambiguity regarding the mechanisms of change claimed by PA intervention programmes. This may, in part, contribute to research findings that suggest that PA interventions have had limited impact on children’s overall activity levels and thereby limited impact in reducing children’s metabolic health (Metcalf, Henley & Wilkin, 2012). A marked criticism of the health promotion field has been the focus on behavioural change while failing to acknowledge the impact of context in influencing health outcomes (Golden & Earp, 2011). For years, the trans-theoretical model of behaviour change has been ‘the dominant model for health behaviour change’ (Armitage, 2009); this model focusses primarily on the individual and the psychology of the change process. Arguably, this model is limited by the individual’s decision-making ability and degree of self-efficacy in order to achieve sustained behavioural change and does not take account of external factors that may hinder their ability to realise change. Similar to the trans-theoretical model, socio-ecological models identify the individual at the focal point of change but also emphasises the importance of connecting multiple impacting variables, in particular, the connections between the social environment, the physical environment and public policy in facilitating behavioural change (REF). In this research, a social-ecological framework was used to connect the ways a PA intervention programme had an impact (or not) on participants, and to make explicit the foundational features of the programme that facilitated positive change. In this study, we examined the evaluation of a multi-agency approach to a PA intervention programme which aimed to increase physical activity, and awareness of the importance of physical activity to key stage 2 (age 7-12) pupils in three UK primary schools. The agencies involved were the local health authority, a community based charitable organisation, a local health administrative agency, and the city school district. In examining the impact of the intervention, we adopted a process evaluation model in order to better understand the mechanisms and context that facilitated change. Therefore, the aim of this evaluation was to describe the provision, process and impact of the intervention by 1) assessing changes in physical activity levels 2) assessing changes in the student’s attitudes towards physical activity, 3) examining student’s perceptions of the child size fitness equipment in school and their likelihood of using the equipment outside of school and 4) exploring staff perceptions, specifically the challenges and benefits, of facilitating equipment based exercise sessions in the school environment. Methodology, Methods, Research Instruments or Sources Used Evaluation of the intervention was designed as a matched-control study and was undertaken over a seven-month period. The school-based intervention involved 3 intervention schools (n =436; 224 boys) and one control school (n=123; 70 boys) in a low socioeconomic and multicultural urban setting. The PA intervention was separated into two phases: a motivation DVD and 10 days of circuit based exercise sessions (Phase 1) followed by a maintenance phase (Phase 2) that incorporated a PA reward program and the use of specialist kid’s gym equipment located at each school for a period of 4 wk. Outcome measures were measured at baseline (January) and endpoint (July; end of academic school year) using reliable and valid self-report measures. The children’s attitudes towards PA were assessed using the Children’s Attitudes towards Physical Activity (CATPA) questionnaire. The Physical Activity Questionnaire for Children (PAQ-C), a 7-day recall questionnaire, was used to assess PA levels over a school week. A standardised test battery (Fitnessgram®) was used to assess cardiovascular fitness, body composition, muscular strength and endurance, and flexibility. After the 4 wk period, similar kid’s equipment was available for general access at local community facilities. The control school did not receive any of the interventions. All physical fitness tests and PA questionnaires were administered and collected prior to the start of the intervention (January) and following the intervention period (July) by an independent evaluation team. Evaluation testing took place at the individual schools over 2-3 consecutive days (depending on the number of children to be tested at the school). Staff (n=19) and student perceptions (n = 436) of the child sized fitness equipment were assessed via questionnaires post-intervention. Students completed a questionnaire to assess enjoyment, usage, ease of use and equipment assess and usage in the community. A questionnaire assessed staff perceptions on the delivery of the exercise sessions, classroom engagement and student perceptions. Conclusions, Expected Outcomes or Findings Findings showed that both the intervention (16.4%) and control groups increased their PAQ-C score by post-intervention (p < 0.05); with the intervention (17.8%) and control (21.3%) boys showing the greatest increase in physical activity levels. At post-intervention, there was a 5.5% decline in the intervention girls’ attitudes toward PA in the aesthetic subdomains (p = 0.009); whereas the control boys had an increase in positive attitudes in the health domain (p = 0.003). No significant differences in attitudes towards physical activity were observed in any other domain for either group at post-intervention (p > 0.05). The results of the equipment questionnaire, 96% of the children stated they enjoyed using the equipment and would like to use the equipment again in the future; however at post-intervention only 27% reported using the equipment outside of school in the last 7 days. Students identified the ski walker (34%) and cycle (32%) as their favorite pieces of equipment; with the single joint exercises such as leg extension and bicep/tricep machine (<3%) as their least favorite. Key themes from staff were that the equipment sessions were enjoyable, a novel activity, children felt very grown-up, and the activity was linked to a real fitness experience. They also expressed the need for more support to deliver the sessions and more time required for each session. Findings from this study suggest that a more integrated approach within the various agencies is required, particularly more support to increase teachers pedagogical content knowledge in physical activity instruction which is age appropriate. Future recommendations for successful implementation include sufficient time period for all students to access and engage with the equipment; increased access and marketing of facilities to parents within the local community, and professional teacher support strategies to facilitate the exercise sessions.

How ecotourism works at the community-level : the case of whale-watching in the Azores

Whale-watching is one of the fastest growing tourism industries worldwide, often viewed as a sustainable, non-consumptive strategy for the benefits of cetacean conservation and the coastal communities, alternative to and incompatible with whaling. Yet, there is paucity of research on how things actually work out at the community-level. Drawing on the research literature and my own ethnographic fieldwork, this article bridges a knowledge gap in this field while examining an Azorean context where tourism has brought a re-commodification of the whale for the community (observing wildlife as opposed to harpooning it) in the last 20 years. The analysis is focused on four main community-level implications: governance of common maritime resources, and tourism's contribution to economic sustainability, cultural identity and social relations. It is shown that whale-watching, as any other form of community-based ecotourism, is not a panacea that always promotes biodiversity conservation and economic and sociocultural sustainability for the host communities. Moreover, expanding on the theorisation of emerging institutional fields by Lawrence and Phillips, the political, historical, economic and sociocultural context of the community involved is a key factor for understanding local agency and the local specific features of new fields.

CERVIXCHECK: A SPIRITUALLY-BASED SMS TEXT MESSAGING PILOT INTERVENTION TO INCREASE CERVICAL CANCER AWARENESS AND PAP TEST SCREENING INTENTION AMONG AFRICAN AMERICAN WOMEN

African American women account for a disproportionate burden of cervical cancer incidence and mortality rate when compared to non-Hispanic White women. Cervical cancer is one of the most preventable types of cancer, and women can be screened for it with a routine Pap test. Given that religion occupies an essential place in African American lives, framing health messages with important spiritual themes and delivering them through a popular communication delivery channel may allow for a more culturally-relevant and accessible technology-based approach to promoting cervical cancer educational content to African American women. Using community-engaged research as a framework, the purpose of this multiple methods study was to develop, pilot test, and evaluate the feasibility, acceptability, and initial efficacy of a spiritually-based SMS text messaging intervention to increase cervical cancer awareness and Pap test screening intention among African American women. The study recruited church-attending African American women ages 21-65 and was conducted in three phases. Phases 1 and 2 consisted of a series of focus group discussions (n=15), cognitive response interviews (n=8), and initial usability testing that were conducted to inform the intervention development and modifications. Phase 3 utilized a non-experimental one-group pretest-posttest design to pilot test the 16-day text messaging intervention (n=52). Of the individuals enrolled, forty-six completed the posttest (retention rate=88%). Findings provided evidence for the early feasibility, high acceptability, and some initial efficacy of the CervixCheck intervention. There were significant pre-post increases observed for knowledge about cervical cancer and the Pap test (p = .001) and subjective norms (p = .006). Additionally, results post-intervention revealed that 83% of participants reported being either “satisfied” or “very satisfied” with the program and 85% found the text messages either “useful” or “very useful”. 85% of the participants also indicated that they would “likely” or “very likely” share the information they learned from the intervention with the women around them, with 39% indicating that they had already shared some of the information they received with others they knew. A spiritually-based SMS text messaging intervention could be a culturally appropriate and cost-effective method of promoting cervical cancer early detection information to African American women.

Increasing the rigour and trustworthiness of participatory evaluations : learnings from the field

Participatory evaluation and participatory action research (PAR) are increasingly used in community-based programs and initiatives and there is a growing acknowledgement of their value. These methodologies focus more on knowledge generated and constructed through lived experience than through social science (Vanderplaat 1995). The scientific ideal of objectivity is usually rejected in favour of a holistic approach that acknowledges and takes into account the diverse perspectives, values and interpretations of participants and evaluation professionals. However, evaluation rigour need not be lost in this approach. Increasing the rigour and trustworthiness of participatory evaluations and PAR increases the likelihood that results are seen as credible and are used to continually improve programs and policies.----- Drawing on learnings and critical reflections about the use of feminist and participatory forms of evaluation and PAR over a 10-year period, significant sources of rigour identified include:----- • participation and communication methods that develop relations of mutual trust and open communication----- • using multiple theories and methodologies, multiple sources of data, and multiple methods of data collection----- • ongoing meta-evaluation and critical reflection----- • critically assessing the intended and unintended impacts of evaluations, using relevant theoretical models----- • using rigorous data analysis and reporting processes----- • participant reviews of evaluation case studies, impact assessments and reports.

The exploration of consumer power in online brand communities : a comparison case study in Australia and China

Aided by the development of information technology, the balance of power in the market place is rapidly shifting from marketers towards consumers and nowhere is this more obvious than in the online environment (Denegri-Knott, Zwick, & Schroeder, 2006; Moynagh & Worsley, 2002; Newcomer, 2000; Samli, 2001). From the inception and continuous development of the Internet, consumers are becoming more empowered. They can choose what they want to click on the Internet, they can shop and transact payments, watch and download video, chat with others, be it friends or even total strangers. Especially in online communities, like-minded consumers share and exchange information, ideas and opinions. One form of online community is the online brand community, which gathers specific brand lovers. As with any social unit, people form different roles in the community and exert different effects on each other. Their interaction online can greatly influence the brand and marketers. A comprehensive understanding of the operation of this special group form is essential to advancing marketing thought and practice (Kozinets, 1999). While online communities have strongly shifted the balance of power from marketers to consumers, the current marketing literature is sparse on power theory (Merlo, Whitwell, & Lukas, 2004). Some studies have been conducted from an economic point of view (Smith, 1987), however their application to marketing has been limited. Denegri-Knott (2006) explored power based on the struggle between consumers and marketers online and identified consumer power formats such as control over the relationship, information, aggregation and participation. Her study has built a foundation for future power studies in the online environment. This research project bridges the limited marketing literature on power theory with the growing recognition of online communities among marketing academics and practitioners. Specifically, this study extends and redefines consumer power by exploring the concept of power in online brand communities, in order to better understand power structure and distribution in this context. This research investigates the applicability of the factors of consumer power identified by Denegri-Knott (2006) to the online brand community. In addition, by acknowledging the model proposed by McAlexander, Schouten, & Koenig (2002), which emphasized that community study should focus on the role of consumers and identifying multiple relationships among the community, this research further explores how member role changes will affect power relationships as well as consumer likings of the brand. As a further extension to the literature, this study also considers cultural differences and their effect on community member roles and power structure. Based on the study of Hofstede (1980), Australia and China were chosen as two distinct samples to represent differences in two cultural dimensions, namely individualism verses collectivism and high power distance verses low power distance. This contribution to the research also helps answer the research gap identified by Muñiz Jr & O'Guinn (2001), who pointed out the lack of cross cultural studies within the online brand community context. This research adopts a case study methodology to investigate the issues identified above. Case study is an appropriate research strategy to answer “how” and “why” questions of a contemporary phenomenon in real-life context (Yin, 2003). The online brand communities of “Haloforum.net” in Australia and “NGA.cn” in China were selected as two cases. In-depth interviews were used as the primary data collection method. As a result of the geographical dispersion and the preference of a certain number of participants, online synchronic interviews via MSN messenger were utilized along with the face-to-face interviews. As a supplementary approach, online observation was carried over two months, covering a two week period prior to the interviews and a six week period following the interviews. Triangulation techniques were used to strengthen the credibility and validity of the research findings (Yin, 2003). The findings of this research study suggest a new definition of power in an online brand community. This research also redefines the consumer power types and broadens the brand community model developed by McAlexander et al. (2002) in an online context by extending the various relationships between brand and members. This presents a more complete picture of how the perceived power relationships are structured in the online brand community. A new member role is discovered in the Australian online brand community in addition to the four member roles identified by Kozinets (1999), in contrast however, all four roles do not exist in the Chinese online brand community. The research proposes a model which links the defined power types and identified member roles. Furthermore, given the results of the cross-cultural comparison between Australia and China showed certain discrepancies, the research suggests that power studies in the online brand community should be country-specific. This research contributes to the body of knowledge on online consumer power, by applying it to the context of an online brand community, as well as considering factors such as cross cultural difference. Importantly, it provides insights for marketing practitioners on how to best leverage consumer power to serve brand objective in online brand communities. This, in turn, should lead to more cost effective and successful communication strategies. Finally, the study proposes future research directions. The research should be extended to communities of different sizes, to different extents of marketer control over the community, to the connection between online and offline activities within the brand community, and (given the cross-cultural findings) to different countries. In addition, a greater amount of research in this area is recommended to determine the generalizability of this study.

Multi-victim sexual assault : a case study in rural Australia

Objective: There is a paucity of information regarding cases of multi-victim sexual assault of children. The reported incidence suggests that these cases are rare. The aim of this paper is to provide practitioners with information about effective intervention strategies arising out of the direct experience of managing a case of multi-victim sexual assault in an Australian rural community. --------- Method: A descriptive, case-report methodology summarizing the investigation and intervention in a case of multi-victim sexual assault is reported. A community based intervention arising out of the disclosures of 21 male children is described. The intervention occurred at an individual, group, and community level using a coordinated multi-disciplinary team and natural helping networks. ---------- Results: The coordination of police and welfare services increased the communication flow to victims, their families, and the community. The case also demonstrated the utility in regularly briefing political and bureaucratic authorities as well as local officials about emergent issues. Coordinating political and bureaucratic responses was essential in obtaining ongoing support and sufficient researching to enable the effective delivery of services. ---------- Conclusions: Interventions were focused at an individual, group, and community level using a coordinated multi-disciplinary team and natural helping networks. This provided a choice of services which were sensitive to the case setting. Recommendations are offered for practitioners who are confronted with similar events. While this paper describes an approach for intervening in a case of multi-victim sexual assault, further empirical research is needed to enable service deliverers to efficaciously target interventions which offer choice to victims and their families.

Comparative study : health research on traffic noise pollution vs. Technical research on traffic noise mitigation

Community awareness and the perception on the traffic noise related health impacts have increased significantly over the last decade resulting in a large volume of public inquiries flowing to Road Authorities for planning advice. Traffic noise management in the urban environment is therefore becoming a “social obligation”, essentially due to noise related health concerns. Although various aspects of urban noise pollution and mitigation have been researched independently, an integrated approach by stakeholders has not been attempted. Although the current treatment and mitigation strategies are predominantly handled by the Road Agencies, a concerted effort by all stakeholders is becoming mandatory for effective and tangible outcomes in the future. A research project is underway a RMIT University, Australia, led by the second author to consider the use of “hedonic pricing” for alternative noise amelioration treatments within the road reserve and outside the road reserve. The project aims to foster a full range noise abatement strategy encompassing source, path and noise receiver. The benefit of such a study would be to mitigate the problem where it is most effective and would defuse traditional “authority” boundaries to produce the optimum outcome. The project is conducted in collaboration with the Department of Main Roads Queensland, Australia and funded by the CRC for Construction Innovation. As part of this study, a comprehensive literature search is currently underway to investigate the advancements in community health research, related to environmental noise pollution, and the advancements in technical and engineering research in mitigating the issue. This paper presents the outcomes of this work outlining state of the art, national and international good practices and gap analysis to identify major anomalies and developments.

The impact of pain on the quality of life of people with multiple sclerosis: A community survey

The purpose of this study was to examine the impact of pain on functioning across multiple quality of life (QOL) domains among individuals with multiple sclerosis (MS). A total of 219 people were recruited from a regional MS society membership database to serve as the community-based study sample. All participants completed a questionnaire containing items about their demographic and clinical characteristics, validated measures of QOL and MS-related disability, and a question on whether or not they had experienced clinically significant pain in the preceding 2 weeks. Respondents who reported pain then completed an in-person structured pain interview assessing pain characteristics (intensity, quality, location, extent, and duration). Comparisons between participants with and without MS-related pain demonstrated that pain prevalence and intensity were strongly correlated with QOL: physical health, psychological health, level of independence, and global QOL were more likely to be impaired among people with MS when pain was present, and the extent of impairment was associated with the intensity of pain. Moreover, these relationships remained significant even after statistically controlling for multiple demographic and clinical covariates associated with self-reported QOL. These findings suggest that for people with MS, pain is an important source of distress and disability beyond that caused by neurologic impairments.

The NOURISH randomised control trial : positive feeding practices and food preferences in early childhood - a primary prevention program for childhood obesity

Background Primary prevention of childhood overweight is an international priority. In Australia 20-25% of 2-8 year olds are already overweight. These children are at substantially increased the risk of becoming overweight adults, with attendant increased risk of morbidity and mortality. Early feeding practices determine infant exposure to food (type, amount, frequency) and include responses (eg coercion) to infant feeding behaviour (eg. food refusal). There is correlational evidence linking parenting style and early feeding practices to child eating behaviour and weight status. A focus on early feeding is consistent with the national focus on early childhood as the foundation for life-long health and well being. The NOURISH trial aims to implement and evaluate a community-based intervention to promote early feeding practices that will foster healthy food preferences and intake and preserve the innate capacity to self-regulate food intake in young children. Methods/Design This randomised controlled trial (RCT) aims to recruit 820 first-time mothers and their healthy term infants. A consecutive sample of eligible mothers will be approached postnatally at major maternity hospitals in Brisbane and Adelaide. Initial consent will be for re-contact for full enrolment when the infants are 4-7 months old. Individual mother- infant dyads will be randomised to usual care or the intervention. The intervention will provide anticipatory guidance via two modules of six fortnightly parent education and peer support group sessions, each followed by six months of regular maintenance contact. The modules will commence when the infants are aged 4-7 and 13-16 months to coincide with establishment of solid feeding, and autonomy and independence, respectively. Outcome measures will be assessed at baseline, with follow up at nine and 18 months. These will include infant intake (type and amount of foods), food preferences, feeding behaviour and growth and self-reported maternal feeding practices and parenting practices and efficacy. Covariates will include sociodemographics, infant feeding mode and temperament, maternal weight status and weight concern and child care exposure. Discussion Despite the strong rationale to focus on parents’ early feeding practices as a key determinant of child food preferences, intake and self-regulatory capacity, prospective longitudinal and intervention studies are rare. This trial will be amongst to provide Level II evidence regarding the impact of an intervention (commencing prior to age 12 months) on children’s eating patterns and behaviours. Trial Registration: ACTRN12608000056392

A longitudinal study comparing bereavement phenomena in recently bereaved spouses, adult children and parents

Objective: The study investigated previous research findings and clinical impressions which indicated that the intensity of grief for parents who had lost a child was likely to be higher than that for widows/widowers, who in turn were likely to have more intense reactions than adult children losing a parent. Method: In order to compare the intensities of the bereavement reactions among representative community samples of bereaved spouses (n = 44), adult children (n = 40) and parents (n = 36), and to follow the course of such phenomena, a detailed Bereavement Questionnaire was administered at four time points over a 13-month period following the loss. Results: Measures based on items central to the construct of bereavement showed significant time and group differences in accordance with the proposed hypothesis. More global items associated with the construct of resolution showed a significant time effect, but without significant group differences. Conclusions: Evidence from this study supports the hypothesis that in non-clinical, community-based populations the frequency with which core bereavement phenomena are experienced is in the order: bereaved parents bereaved spouses bereaved adult children.

The bereavement response : a cluster analysis

BACKGROUND: Literature and clinical experience suggest that some people experience atypical, complicated or pathological bereavement reactions in response to a major loss. METHOD: Three groups of community-based bereaved subjects--spouses (n = 44), adult children (n = 40), and parents (n = 36)--were followed up four times in the 13 months after a loss. A 17-item scale of core bereavement times was developed and used to investigate the intensity of the bereavement response over time. RESULTS: Cluster analysis revealed a pattern of bereavement-related symptoms approximating a syndrome of chronic grief in 11 (9.2%) of the 120 subjects. None of the respondents displayed a pattern consistent with delayed or absent grief. CONCLUSIONS: In a non-clinical community sample of bereaved people, delayed or absent grief is infrequently seen, unlike chronic grief, which is demonstrated in a minority.