Mothers, Fathers, Families and Child Development

Summary This chapter reviews the main tenets of attachment theory—one of the most popular and traditional approaches to conceptualising the relationship between caregivers and child development—in the light of recent research evidence. It highlights the limitations of attachment theory in achieving a holistic understanding of child development in current societal structures and considers the advantages of taking an ecological approach to the development of practice and policy. An ecological perspective that is child-centred contributes to a holistic understanding of how families, in all their variety of forms, influence child development and support child-centred practice and policy. The quality of the family environment is a key factor for the healthy adjustment, development and wellbeing of children.

Understanding the Needs of People with Dementia and Family Carers

This is the first in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. When a person with dementia is in hospital, poor understanding of individual needs and preferences can contribute to a lack of person-centred care. Similarly, the needs of family carers can often be overlooked and staff do not always appreciate these needs at such a stressful time. This article illustrates how three NHS trusts have addressed these issues. To help staff get to know patients with dementia, Salford Royal NHS Foundation Trust has implemented a patient passport. Similarly, The Shrewsbury and Telford Hospital NHS Trust has implemented a carer passport that overcomes the restrictions imposed by hospital visiting hours. Royal Devon and Exeter NHS Foundation Trust also focused on carers, holding a workshop to elicit feedback on what was important to them. This was a useful means of engaging with carers and helped staff to realise that even simple changes can have a significant effect.

Athletic injury care training in high school coaches

The purpose of this qualitative study was to understand the client and occupational therapist experiences of a mental health group. A secondary aim was to explore the extent to which this group seemed to have reflected a client-centred approach. The topic emerged from personal and professional issues related to the therapist as teacher and to inconsistencies in practice with the profession's client-centred philosophy. This philosophy, the study's frame of reference, was established in terms of themes related to the client-therapist relationship and to client values. Typical practice was illustrated through an extensive literature review. Structured didacticexperiential methods aiming toward skill development were predominant. The interpretive sciences and, to a lesser extent, the critical sciences directed the methodology. An ongoing support group at a community mental health clinic was selected as the focus of the study; the occupational therapist leader and three members became the key participants. A series of conversational interviews, the . core method of data collection, was supplemented by observation, document review, further interviews, and fieldnotes. Transcriptions of conversations were returned to participants for verification and for further reflection Analysis primarily consisted of coding and organizing data according to emerging themes. The participants' experiences of group, presented as narrative stories within a group session vignette, were also returned to participants. There was a common understanding of the group's structure and the importance of having "air time" within the group; however, differences in perceptions of such things as the importance of the group in members' lives were noted. All members valued the therapeutic aspects of group, the role of group as weekly activity and, to a lesser extent, the learning that came from group. The researcher's perspective provided a critique of the group experience from a client-centred perspective. Some areas of consistency with client-centred practice were noted (e.g., therapist attitudes); however the group seemed to function far from a client-centred ideal. Members held little authority in a -relationship dominated by the leaders, and leader agendas rather than member values controlled the session. Possible reasons for this discrepancy ranging from past health care encounters through to co-leader discord emerged. The actual and potential significance of this study was discussed according to many areas of implications: to OT practice, especially client-centred group practice, to theory development, to further areas of research and methodology considerations, to people involved in the group and to my personal growth and development.

Occupational therapist and client experiences of a mental health group

The purpose of this qualitative study was to understand the client and occupational therapist experiences of a mental health group. A secondary aim was to explore the extent to which this group seemed to have reflected a client-centred approach. The topic emerged from personal and professional issues related to the therapist as teacher and to inconsistencies in practice with the profession's client-centred philosophy. This philosophy, the study's frame of reference, was established in terms of themes related to the client-therapist relationship and to client values. Typical practice was illustrated through an extensive literature review. Structured didacticexperiential methods aiming toward skill development were predominant. The interpretive sciences and, to a lesser extent, the critical sciences directed the methodology. An ongoing support group at a community mental health clinic was selected as the focus of the study; the occupational therapist leader and three members became the key participants. A series of conversational interviews, the . core method of data collection, was supplemented by observation, document review, further interviews, and fieldnotes. Transcriptions of conversations were returned to participants for verification and for further reflection. Analysis primarily consisted of coding and organizing data according to emerging themes. The participants' experiences of group, presented as narrative stories within a group session vignette, were also returned to participants. There was a common understanding of the group's structure and the importance of having "air time" within the group; however, differences in perceptions of such things as the importance of the group in members' lives were noted. All members valued the therapeutic aspects of group, the role of group as weekly activity and, to a lesser extent, the learning that came from group. The researcher's perspective provided a critique of the group experience from a client-centred perspective. Some areas of consistency with client-centred practice were noted (e.g., therapist attitudes); however the group seemed to function far from a client-centred ideal. Members held little authority in a relationship dominated by the leaders, and leader agendas rather than member values controlled the session. Possible reasons for this discrepancy ranging from past health care encounters through to co-leader discord emerged. The actual and potential significance of this study was discussed according to many areas of implications: to OT practice, especially client-centred group practice, to theory development, to further areas of research and methodology considerations, to people involved in the group and to my personal growth and development.

A multicentre randomized controlled trial of an empowerment-inspired intervention for adolescents starting continuous subcutaneous insulin infusion : a study protocol

Background. Continuous subcutaneous insulin infusion (CSII) treatment among children with type 1 diabetes is increasing in Sweden. However, studies evaluating glycaemic control in children using CSII show inconsistent results. Omitting bolus insulin doses using CSII may cause reduced glycaemic control among adolescents. The distribution of responsibility for diabetes self-management between children and parents is often unclear and needs clarification. There is much published support for continued parental involvement and shared diabetes management during adolescence. Guided Self-Determination (GSD) is an empowerment-based, person-centred, reflection and problem solving method intended to guide the patient to become self-sufficient and develop life skills for managing difficulties in diabetes self-management. This method has been adapted for adolescents and parents as Guided Self-Determination-Young (GSD-Y). This study aims to evaluate the effect of an intervention with GSD-Y in groups of adolescents starting on insulin pumps and their parents on diabetes-related family conflicts, perceived health and quality of life (QoL), and metabolic control. Here, we describe the protocol and plans for study enrolment. Methods. This study is designed as a randomized, controlled, prospective, multicentre study. Eighty patients between 12-18 years of age who are planning to start CSII will be included. All adolescents and their parents will receive standard insulin pump training. The education intervention will be conducted when CSII is to be started and at four appointments in the first 4 months after starting CSII. The primary outcome is haemoglobin A1c levels. Secondary outcomes are perceived health and QoL, frequency of blood glucose self-monitoring and bolus doses, and usage of carbohydrate counting. The following instruments will be used to evaluate perceived health and QoL: Disabkids, 'Check your health', the Diabetes Family Conflict Scale and the Swedish Diabetes Empowerment Scale. Outcomes will be evaluated within and between groups by comparing data at baseline, and at 6 and 12 months after starting treatment. Results and discussion. In this study, we will assess the effect of starting an insulin pump together with the model of Guided Self-Determination to determine whether this approach leads to retention of improved glycaemic control, QoL, responsibility distribution and reduced diabetes-related conflicts in the family. Trial registration: Current controlled trials: ISRCTN22444034

The effectiveness of proactive telephone support provided to breastfeeding mothers of preterm infants : study protocol for a randomized controlled trial

Background: Although breast milk has numerous benefits for infants' development, with greater effects in those born preterm (at < 37 gestational weeks), mothers of preterm infants have shorter breastfeeding duration than mothers of term infants. One of the explanations proposed is the difficulties in the transition from a Neonatal Intensive Care Unit (NICU) to the home environment. A person-centred proactive telephone support intervention after discharge from NICU is expected to promote mothers' sense of trust in their own capacity and thereby facilitate breastfeeding. Methods/design: A multicentre randomized controlled trial has been designed to evaluate the effectiveness and cost-effectiveness of person-centred proactive telephone support on breastfeeding outcomes for mothers of preterm infants. Participating mothers will be randomized to either an intervention group or control group. In the intervention group person-centred proactive telephone support will be provided, in which the support team phones the mother daily for up to 14 days after hospital discharge. In the control group, mothers are offered a person-centred reactive support where mothers can phone the breastfeeding support team up to day 14 after hospital discharge. The intervention group will also be offered the same reactive telephone support as the control group. A stratified block randomization will be used; group allocation will be by high or low socioeconomic status and by NICU. Recruitment will be performed continuously until 1116 mothers (I: 558 C: 558) have been included. Primary outcome: proportion of mothers exclusively breastfeeding at eight weeks after discharge. Secondary outcomes: proportion of breastfeeding (exclusive, partial, none and method of feeding), mothers satisfaction with breastfeeding, attachment, stress and quality of life in mothers/partners at eight weeks after hospital discharge and at six months postnatal age. Data will be collected by researchers blind to group allocation for the primary outcome. A qualitative evaluation of experiences of receiving/providing the intervention will also be undertaken with mothers and staff. Discussion: This paper presents the rationale, study design and protocol for a RCT providing person-centred proactive telephone support to mothers of preterm infants. Furthermore, with a health economic evaluation, the cost-effectiveness of the intervention will be assessed. Trial registration: NCT01806480

Från ord till handling : En kvalitativ studie om värdegrund och socialt innehåll för äldre på särskilt boende

Socialstyrelsens brukarundersökning visar att äldre som bor på särskilt boende är mest missnöjda med de aktiviteter och den sociala samvaron som verksamheten erbjuder. Äldreomsorgen bygger på den nationella värdegrunden som innefattar att den äldre ska få leva ett värdigt liv och känna välbefinnande, men det är inte klart hur denna värdegrund påverkar personalens arbetssätt eller de sociala aktiviteter som erbjuds. Vår studie angriper denna fråga. Fem särskilda boenden var representerade både från kommunala och privata vårdgivare i två olika kommuner. Semistrukturerade intervjuer genomfördes med de särskilda boendes enhetschefer, som sedan transkriberades och tematiskt analyserades. Vårt resultat tyder på att den nationella värdegrunden inom äldreomsorgen tolkas olika på alla de särskilda boendena. Alla enhetschefer la stor vikt på personcentrerad vård, men trots det så erbjöd man liknade sociala aktiviteter ofta då som gruppaktivitet. Resultaten diskuterar vi med hänvisning till Aktivitetsteorin och Gerotranscendenceteorin.

What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register

OBJECTIVES: There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes. DESIGN: Semistructured qualitative interviews analysed using content analysis. SETTING: Hospital-based outpatient clinics and primary healthcare clinics in Sweden. PARTICIPANTS: 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). INCLUSION CRITERIA: Swedish adults (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics. RESULTS: To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme 'To live a good life with diabetes' constituting the two main categories 'How I feel and how things are going with my diabetes' and 'Support from diabetes care in managing diabetes' including five different categories. CONCLUSIONS: Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

Inclusion and accountability: communications research with consumers with disabilities

Over the past two decades there has been an increasing focus on doing research with and for consumers rather than on consumers. Research that is collaborative and inclusive has been called for by people with disabilities. People with disabilities are a group of telecommunications consumers who are disadvantaged because of social barriers and access issues with equipment, services and information. In this paper, the benefits and challenges of collaborative (e.g. participatory, participatory action, emancipatory) research with these consumers and the processes that can facilitate inclusive and accountable research outcomes are addressed. Throughout the paper, four questions will be explored: Who determines which research issues are explored and the methods that are used? What is the level of consumer involvement in the research process? How can academics and government ensure that consumer-focused research is inclusive and participatory? How, and to whom, should research results be made available?

In the first part of the paper, the perspectives on consumer research by people with disabilities are presented. Respect for and appreciation of consumers' views underpins the philosophical stance needed by researchers and funding bodies before serious engagement in empowering, person-centred research can be successful.

In the second part of the paper, there is a focus on defining the features of collaborative research approaches. Participatory research, participatory action research, and emancipatory research are variations that incorporate differing levels of consumer involvement. Each of these, however, embrace shifts in philosophy and methods away from more traditional 'scientific' research. Such changes result in a greater sense of inclusion and project ownership by consumers.

The third part of the paper addresses some of the issues associated with collaborative research for consumers with disabilities, for academic researchers, and for government funding bodies. Differing understandings of the social nature of disablement influence attitudes toward consumer involvement and are demonstrated in the choice of research questions, project aims, and the methodologies used. Differing agendas are reflected in reactions to the traditional project requirements and processes of government, the preferred research methodologies of researchers, and the perceived accountability of researchers or government for the dissemination and sharing of research results. The challenges to successful engagement with consumers in collaborative research have been identified in the literature and a number of strategies recommended (Barnes, 2003; Clear, 1999; Mercer, 2002; Oliver, 1992, 1997; Zarb, 1997). Application of inclusive strategies by researchers and funding bodies is essential for positive change and inclusive, empowering outcomes.

The paper concludes with a case study of a DCITA-funded research project. The project is evaluated using participatory/emancipatory research criteria modified from Zarb (1992) and addresses consumer, researcher, and funding body participation. The four questions used in the discussion of the paper are applied to this particular project. In addition, the benefits and learnings from the project will be compared with the outcomes desired by consumers who espouse collaborative research approaches.

Responding to the ageing profile of emergency department patients

Background
Older people with acute superimposed on chronic health problems are becoming a core aspect of emergency department (ED) caseload. This project explored the ED experience from the perspective of older patients and their carers.

Method
A convenience sample of thirty participants was recruited across three participating EDs: tw o metropolitan and one regional. The project utilised two approaches to data collection: 1) an observation approach where a project officer observed participants from the time of ED presentation until discharge, or for up to six hours; and 2) a subsequent interview was conducted with the participant and their carer within a week of the ED presentation. Data from both sources were integrated, and independently thematically analysed by two members of the team.

Results
Thirty participants aged over 65 were recruited. Their average age was 77.1 (sd=6.7) years, 59% w ere female, and 74% were triage category 1- 3 (indicating moderate/high acuity). Participants spent on average 7 hours 47 minutes in the ED, with 50% discharged home, 43% admitted to general wards or MAPU, and 7% discharged to residential care/hospice. Key themes in the factors influencing the patient experience and examples of quality care were identified, along with opportunities to improve the capacity for EDs to be “older person friendly”, and “person-centred.” Challenges include improving the effectiveness of communication between staff and patients/carers (including issues around people from culturally and linguistically diverse backgrounds), availability of allied health professionals to assist with discharge planning, and a tendency for older people not to seek ED care until the health problem was severe. Patient exemplars highlight key themes.

Discussion and implications
Results of the project highlight positive aspects of emergency department care for older people and inform targets for improvement strategies. These can be used to drive ongoing improvements in care for older people presenting to EDs.

Situationist outdoor education in the country of lost children

This thesis is a study of outdoor education, in the deliberative tradition of curriculum inquiry. It examines the intentional generation and distribution of knowledge, beliefs, and attitudes through organised outdoor activities, both as a research interest, and as a critical perspective on outdoor education discourse. Eight separate but interrelated research projects, originally published in 11 refereed journal articles, develop and defend the thesis statement: The problem of determining what, if any, forms of outdoor experience should be educational priorities, and how those experiences should be distributed in communities and geographically – that is who goes where and does what – is inherently situational. The persistence of a universalist outdoor education discourse that fails to acknowledge or adequately account for social and geographic circumstances points to serious flaws in outdoor education research and theory, and impedes the development of more defensible outdoor education practices. The introduction explains how the eight projects cohere, and illustrates how they may be linked using the example of militaristic thinking in outdoor safety standards. Chapters 1 and 2 defend and elaborate a situationist approach to outdoor education, using the examples of outdoor education in Victoria (Australia), and universalist approaches to outdoor education in textbooks respectively. Chapters 3 and 4 expand on some epistemological implications of the thesis and examine, respectively, the cultural dimensions of outdoor experience, and the epistemology and ontology of local natural history. Chapters 5 and 6 apply a situationist epistemology to personal development based outdoor education. Traditions of outdoor education that draw on person-centred rather than situation-sensitive theories of behaviour are examined and critiqued. Alternatives to person-centred theories of outdoor education are discussed. Chapters 7 and 8 use situationist outdoor education to provide a critical reading of nature-based tourism. Chapters 9, 10, and 11 return to the theme of safety in the introduction and Chapter 1, and examine the safety implications of a situationist epistemology. Closing comments briefly draw together the conclusions of all of the chapters, and offer some directions for future outdoor education research.

When parents love and don't love their children : some children's stories

This paper discusses a small pilot study with Anglo-Australian children aged 6 to 8 years. The children expressed through stories of what it meant for them when parents love and care for their children, and when they do not. Themes from stories of parental love and care included: relationships, shared special times, being safe and protected, and physical affection. Stories about parents who did not love or care for their children covered themes of abandonment, isolation and sadness. The study contributes an approach that can improve professional practice with children and early outcomes showing the importance of seeking children's perspectives in decision-making about their welfare.

Being a parent on dialysis : a literature review

Aim
This literature review explored the extant literature to further our understanding of the experience of being a parent on dialysis.
Methods
Keywords used to search the literature were haemodialysis, hemodialysis, chronic kidney disease, end stage renal disease, parent and experience. Databases searched included CINAHL, Medline, Wiley/Blackwell, EBSCOHost, Web of Science, Pubmed, and ProQuest. Years included were 1999 to 2009. Seventeen primary research articles (sixteen qualitative, one mixed methods) met the search criteria with only one on parents undergoing dialysis.
Findings
The experience of the parent on dialysis has rarely been explored in the literature. Related research has indicated important themes including: restricted lives; relationships; adjustment; consequences and future outlook.
Conclusions
More should be known about challenges that face parents who receive dialysis. This review established an urgent need for further research to determine the experiences and needs of this population to provide empirical, person-centred nursing care.

Conditionally sexual : men and teenage boys with moderate to profound intellectual disability

This article presents qualitative research data about the sexuality of men and teenage boys with moderate to profound intellectual disability. Research findings pointed to a conditional construct of sexuality based within a biopsychosocial framework. The notion Conditionally Sexual represents the perceived limitations, within a rights-based discourse, of these men and teenage boys’ sexuality. The limitations to person-centred service delivery from a policy vacuum in the area of sexuality and intellectual disability represents a major challenge for paid staff. We suggest that a move toward better understanding how to support such a conditional sexual construct will assist the development of a healthy masculine sexuality for men and boys with intellectual disability.