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Yes / When face-to-face meetings and events resume, there is likely to be a renewed commitment to involving people with dementia and carers. Clare Mason and colleagues reflect on what they have learnt from their own experience and provide some tips for good practice.

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This study investigates success in parental mental health and child welfare work. Research has established the potential direct and indirect impacts of mental illness on parenting, the parent–child relationship, and the child, and the extent to which this poses a public health challenge. Problems with how adult and children’s services understand and deliver support to parents with mental health problems and their children have also been identified. In contrast, there has been little research about how parents with mental health difficulties and their children can be supported successfully. ‘What works’, or what constitutes success in parental mental health and child welfare work is missing from the literature. This study aims to begin to address this gap by providing an original contribution to conceptualising and evaluating success in parental mental health and child welfare work. This is an exploratory study, and as such covers a diverse population, i.e. different family members, different cultural and ethnic backgrounds, parents with different diagnoses, and statutory and voluntary sector agencies. The main issue here is to cover diversity; in terms of exploring different opinions of success – both in outcomes and processes – rather than to ensure applicability of the findings to all families in which there are parents experiencing mental illness. An interpretative approach was chosen for the study (within that data) to explore these issues. This was obtained by undertaking a multiple embedded case study methodology (Yin, 2003) with 12 families and their key workers from community mental health, children’s social care and the voluntary sector. Data collection was undertaken in three stages: individual interviews with parents, children and the professionals who support them; a review of the agency case files kept about the same families; and three focus groups. Participants were asked to identify successful situations that had occurred in each case study family during the 18 months prior to interview and give details about why these situations worked out well. The focus groups were convened to discuss the emerging findings from the first two phases of data collection. An examination of emerging themes, and the interplay between themes, gives insight into the shared ideas about what works and the shared methods and practices that are associated with successful outcomes. On the basis of these similarities, the findings offer a contribution to knowledge and practice about a mode of working which seems to make it possible to succeed in helping families previously considered beyond help. What is more, the practitioners also benefit from the helping relationship in this context.

The aim of this study was to explore the experience of carers of family members dying at home with particular reference to their expectations and preparedness for the dying process. It was a qualitative, longitudinal study which initially followed a grounded theory approach. However, as a theatrical metaphor became apparent from the data the approach changed to dramaturgical analysis. Face to face semi-structured interviews were conducted with fifteen carers before and after the death of their family member. Carers were found to be performing a leading role in home palliative care but they experienced a universal sense of uncertainty and of being unrehearsed for their role in the dying process. They were reluctant to seek information to give them a script for their performance because it was painful and difficult to contemplate their family member dying. They needed the direction of health professionals and the support of paid carers but had variable experiences of these services. Carers’ performance types were also variable but tended to be towards the combative or the pragmatic end of a continuum. Their experience was illuminated through the dramaturgical metaphor of a play called the Carer’s Initiation. The climax of the play was the death of the family member followed by the finale in which they watch over the body until it is removed and they finally face a future without their family member. The carer’s initiation highlighted policy and practice implications for improving the preparation and support of carers for the dying process.

Support provided by non-professional family members is generally believed to be beneficial to the recovery of critically ill patients. Nursing researchers have conducted a number of studies about the experiences of critically ill patients and the needs of their families. However, few have investigated the experiences and interactions of both this group of patients and their main informal carers (principal lay support persons) simultaneously. This study has sought to rectify this situation by capturing and undertaking a theoretical analysis of the perceptions and experiences of both critically ill patients and their principal lay support persons. As a result a substantive theory has been developed through the use of grounded theory method in the Study. This theory identifies and explains the actions and interactions between critically ill patients and their principal lay support persons who participated in the Study, whom the researcher observed and interviewed during the data collection period. Data were collected during the critically ill participant¡¦s hospitalisation and three months following his/her discharge from hospital. Implications of the study concern nursing practice as well as outcomes of the Study as these are described and explained through the substantive theory developed from it. Testing of this theory in the context of critically ill patients and their lay support persons provides opportunities for further research, as does the overall phenomenon of lay person support for critically ill patients. Grounded theory was the method used in the Study. Data for the Study were collected by participant observation of, and face-to-face interviews with patients who had a critical illness and their principal lay support persons. Two interviews were conducted with each of these participants. Patients and their principal lay support persons were initially interviewed separately to obtain information about their individual perspectives of what support meant to them during an episode of critical illness. A second interview was conducted three months later to facilitate the researcher¡¦s understanding of both patients¡¦ and principal lay support persons¡¦ experiences during the recovery process. A total of sixteen (16) interviews were conducted in this study from eleven (11) participants before data saturation occurred. The data collected were analysed by constant comparative analysis integral to the grounded theory approach. Data analysis was also facilitated by a computer-aided qualitative data analysis software NUD*IST 4 (Non-numerical Unstructured Data Indexing, Searching, and Theorizing Version 4). This software aided the analysis to the extent that it provided an efficient data management system. Three categories, 1) being-there-with, 2) independing, and 3) coping were discovered from the data. Being-there-with is an essential and mutual need between the patients and their principal lay support persons during the episode of critical illness and later recovery. Independing on the other hand is the process through which these patients experiment with regaining their independence. It involves their experiences of making decisions and re-building confidence. Coping is the process whereby the principal lay support persons and patients manage their stress during the critical illness and later recovery. During the coping process, there is an uncertainty in principal lay support persons about their loved ones¡¦ situation. They experience ¡¥coping with each day as it comes¡¦ and ¡¥learn to adjust¡¦ to the stress arising from the changing and unpredictable condition of the patients. Being-there-with is also a major coping strategy for both the principal lay support persons and patients to manage their stress. The three categories of being-there-with, independing, and coping arising from this Study provided the basis from which to identify its core category, ¡¥mutually being-there-with each other¡¦, and to theorize the core process that represents the substantive theory about experiences and interactions of principal lay support persons and their loved ones during a critical illness situation. The core process that represents the developed substantive theory is ¡¥surviving a critical illness through mutually being-there-with each other¡¦. This theory explains the complex, dynamic, and interactive nature of principal lay person support which both patients and principal lay support persons experienced during an episode of critical illness and later recovery. An understanding of this dynamic, complex and interdependent relationship between patients and lay support persons will better enable nurses to consider both these parties as the focus of their care. Furthermore, because the substantive theory emerging from this Study captures the process of patients¡¦ and lay support persons¡¦ recovery from an episode of critical illness it provides a conceptual map of how this process may progress. In this Study the theory enables nurses to gauge both patients¡¦ and lay support persons¡¦ progress along the road to recovery and to consider this in their plan of care. Several implications for nursing practice emerged from this study. These relate to the needs of critically ill patients and their principal lay support persons during the process of being critically ill and recovering which they experienced together. Because this Study identified the importance to both patients and principal lay support persons being-there-with each other, a key implication of the study is the need for intensive care units to adopt flexible visiting hours to maximise opportunities for this to occur. Nevertheless, at the same time nurses need to be vigilant that flexible visiting does not prove onerous and overtire patients or their principal lay support persons. A further implication of the Study for nursing practice closely related to its finding of the importance of the core category ¡¥mutually being-there-with each other¡¦ to patients and their lay support persons in the context of critical illness and recovery, is the need for nurses (and other health professionals) to be willing to care for both parties as an inseparable dyadic unit. This Study also has implications relating to the care of critically ill patients following their discharge home. The experience of participants in this Study revealed the importance of careful discharge planning, post-ICU follow-up, and continuity of care in the community to enhance recovery of the patients and to address the special needs of their principal lay support persons. From a researcher¡¦s perspective the process of recruitment for this study demonstrated that recruitment of vulnerable populations (like ICU patients) is a challenge to the researcher in terms of ethical considerations, particularly when the researcher is attempting to meet the expectation of primary selection for theoretical sampling in grounded theory method. Suggestions are made in this thesis about how to tackle this challenge in future studies. At the conclusion of the Study, a number of suggestions for further research are made relating to the findings. These include the recommendation that the substantive theory developed in this Study be tested with a larger population. It is also suggested that a longitudinal follow-up study, which extends beyond a three months recovery period, be conducted to further understand the experiences and support needs of post-ICU patients and their principal lay support persons. In addition, more research is required to identify best practice regarding discharge planning, post-ICU follow-up care, and continuity of care in the community for critically ill patients and their principal lay carers. / PhD Doctorate

This thesis explored gay male carers’ experience of caring for their partner, brother or friend who had HIV/AIDS. Through using phenomenological methodology (van Manen, 1990), the day-to-day caring experiences were uncovered. The data gathered were then analysed through a nursing ‘lens’, with the concept of stigma as an anchoring point. The dual stigmas of homophobia and AIDS phobia impacted on the daily lives of these men as they cared for their loved one. The research identified six themes. These were: 1) the relationship; 2) coping with HIV and AIDS; 3) the corporal impact of HIV/AIDS; 4) experiences of carers including the absence of others; 5) living daily with the virus: Demands of people living with HIV/AIDS (PLWHA); and 6) saying goodbye, but wanting to keep the memory alive. The caring these men undertook, for which they were frequently unprepared, was intensive and complex, but because of their commitment and love they battled on. Because of a sense of shame associated with AIDS phobia on the part of the PLWHA, the carer often had to undertake this care in isolation, without support from family, friends or home health care agencies. The carers struggled with not only the demands of day-to-day care, but also with non-acceptance from family, both of the nature of the relationship with their partner and of their homosexuality. Family members were forced, often with great difficulty, to acknowledge the close commitment the men had to each other. Recognition that one had a terminal disease, HIV/AIDS was also required. The fear of potential transmission was high among carers, friends and family members. Notably, there was an absence of blame on the part of the carer towards his partner for contracting HIV/AIDS. The physical decline and marking of the body further stigmatised the PLWHA, which added to carers’ burdens. They endeavoured to minimise the physical decline in their partner, so he could continue to pass as healthy, and attempted to make the day-to-day living as normal as possible. The methods of combating weight loss and opportunistic infections meant frequent medical appointments, complex intensive medical procedures and help with personal care, which was undertaken at home largely without support from health care staff. Carers frequently struggled also with their partner’s denial of being ill. One strategy all carers used was to escape with their partners from their everyday life in Melbourne and attempt metaphorically to leave the HIV/AIDS behind; this was a time when they could rekindle their life together as it was before HIV/AIDS came into their lives. Some carers chose to holiday without their partner, to give themselves a break from the day-to-day caring, while others planned and took holidays with their partner. The decline of the health in the PLWHA meant that family members had to recognise and accept both the nature of the relationship and the presence of the disease. This recognition and acceptance often came only when the partner was very ill, even at the point of dying. Carers and their partners discussed the potential use of euthanasia, as a means of ending the final phase of life with some dignity. One carer and his partner used euthanasia, despite its illegal status. The main concern for all carers was providing comfort and a reduction in the pain associated with HIV/AIDS for the partner. The widespread grief associated with HIV/AIDS was evident amongst these carers. All had known other gay men who had died, some carers own partner had died, or was about to die. There was an overwhelming sense of grief, which at times was repressed as a means of coping day-to-day. All carers felt it was important and necessary to remember those lost to HIV/AIDS through the various public memorials, as they did not want their partner to be just another faceless person lost to this disease. This phenomenological study of carers’ experience highlights the need for health care workers to be aware of the differing strategies that gay men use to cope with HIV/AIDS. While it may seem that the carers are coping with care of their partner, the outer façade is not always an accurate portrayal of the true situation. Health care workers should enquire as to the assistance these carers need from health care services in order to continue to care for their loved one. Such assistance can be the simple recognition of the partner and acceptance of them as part of the PLWHA’s network; this inclusion and acceptance is half the battle.

Bakgrund: Antalet personer med demenssjukdom i Sverige beräknas uppgå till 150 000. Utav dessa vårdas 55 procent i hemmet av anhöriga. De anhörigas roll och funktion som vårdare i hemmet blir alltmer centralt, då vård och omsorg flyttas från det offentliga rummet till det privata. Att träda in i rollen som anhörigvårdare förändrar livssituationen avsevärt och allt planeras kring demenssjukdomens villkor. Syfte: Att sammanställa och belysa forskning som beskriver hur de anhöriga upplever sin situation av att vårda en anhörig som drabbats av en demenssjukdom. Metod: En litteraturöversikt där fem kvantitativa och sex kvalitativa artiklar analyserats. Resultat: Artikelanalysen resulterade i tre teman:  en ny livssituation, förändrad relation och känslomässigt påfrestande. I resultatet framkom att anhöriga rapporterade ohälsa. Diskussion: Anhöriga är en utsatt grupp, som behöver mycket stöd för att de ska orka axla rollen som anhörigvårdare. För att de ska kunna ge den demenssjuke god vård, krävs ett samarbete mellan den anhörige och vården. Kunskapen i studien är användbar för sjuksköterskan och kan användas som ett verktyg för ökad förståelse i mötet med den anhörige. / Background: The numbers of people with dementia in Sweden are estimates at 150 000. Out of these 55 percent cared for a relative at home. The role and function as a caregiver in home are becoming more centralized, when health care move from the public sphere to private enter the role of careers changing life situation considerably and everything is planned around the dementia illness. Aim: To collate and illustrate research that describes how the relative experiences their situation of caring for a relative with dementia. Method: A literature survey in which five quantitative and six qualitative articles were analyzed. Results: Article analysis resulted in three headings: a new life situation, changes in relationships and emotional trying. The results revealed that caregivers reported illness. Discussion: Relatives are a vulnerable group in need of much support to maintain the role as a caregiver. To be able to provide the best dementia care requires a coperation between caregivers and health care. Knowledge in the study is useful for the nurse and can be used as a tool for better understanding of the meeting with the relative.

<p><strong>Bakgrund:</strong> Antalet personer med demenssjukdom i Sverige beräknas uppgå till 150 000. Utav dessa vårdas 55 procent i hemmet av anhöriga. De anhörigas roll och funktion som vårdare i hemmet blir alltmer centralt, då vård och omsorg flyttas från det offentliga rummet till det privata. Att träda in i rollen som anhörigvårdare förändrar livssituationen avsevärt och allt planeras kring demenssjukdomens villkor. <strong>Syfte:</strong> Att sammanställa och belysa forskning som beskriver hur de anhöriga upplever sin situation av att vårda en anhörig som drabbats av en demenssjukdom. <strong>Metod:</strong> En litteraturöversikt där fem kvantitativa och sex kvalitativa artiklar analyserats. <strong>Resultat:</strong> Artikelanalysen resulterade i tre teman:  <em>en ny livssituation, förändrad relation och känslomässigt påfrestande.</em> I resultatet framkom att anhöriga rapporterade ohälsa. <strong>Diskussion:</strong> Anhöriga är en utsatt grupp, som behöver mycket stöd för att de ska orka axla rollen som anhörigvårdare. För att de ska kunna ge den demenssjuke god vård, krävs ett samarbete mellan den anhörige och vården. Kunskapen i studien är användbar för sjuksköterskan och kan användas som ett verktyg för ökad förståelse i mötet med den anhörige.</p> / <p><strong>Background:</strong> The numbers of people with dementia in Sweden are estimates at 150 000. Out of these 55 percent cared for a relative at home. The role and function as a caregiver in home are becoming more centralized, when health care move from the public sphere to private enter the role of careers changing life situation considerably and everything is planned around the dementia illness. <strong>Aim:</strong> To collate and illustrate research that describes how the relative experiences their situation of caring for a relative with dementia. <strong>Method:</strong> A literature survey in which five quantitative and six qualitative articles were analyzed. <strong>Results:</strong> Article analysis resulted in three headings: <em>a new life situation, <em>changes in relationships and <em>emotional trying. </em></em></em>The results revealed that caregivers reported illness. <strong>Discussion:</strong> Relatives are a vulnerable group in need of much support to maintain the role as a caregiver. To be able to provide the best dementia care requires a coperation between caregivers and health care. Knowledge in the study is useful for the nurse and can be used as a tool for better understanding of the meeting with the relative.</p>

Research question: How do you people with schizophrenia and their carers live with a diagnosis of schizophrenia? Research aim: To gain a greater understanding of the meaning and experience of schizophrenia. The objective of this phenomenological study was to explore the lived experience of schizophrenia. Sample: Self-selected sample of 35 participants (22 people with schizophrenia and 13 carers) recruited from the local community. . Data collection: 33 unstructured audiotaped interviews conducted in participants' own homes. In addition some participants completed diaries. Interviews were conducted in two stages: in stage one 10 participants were interviewed, transcripts were analysed and probes were fine tuned and in stage two these probes were used in the remaining interviews. Data analysis: Verbatim transcripts were analysed using the coding paradigm proposed by Strauss (1987), in conjunction with Burnard's (1991) 14 stage model of analysis. Inductive coding was used and respondent validation was completed. Findings: Stress was described as a major cause of schizophrenia. Some participants with schizophrenia described moving on in their lives, a factor associated with having a positive self-concept. Other participants with schizophrenia reported feeling stopped in their lives, which was associated with acceptance of the diagnosis, and having a negative self-concept. The most severe problems they reported were social and psychological. Male and female participants with schizophrenia were treated differently. Some participants with schizophrenia sought support while others chose isolation. Mental health nursing care was reported as coercive and disempowering. Carers described conflict within families, carer burden, and stress. Those who had been caregiving for longer appeared to have adapted and now experienced less stress and burden than others. Younger carers and carers who have been caregiving for a shorter time and were less willing to accept the caregiving role, reported more burden and stress. Conclusions: These findings suggest that a positive self-concept may be necessary to move on after the diagnosis of schizophrenia. The inability to move on may be a result of a negative self-concept or disempowering care. There was no partnership and no shared understanding of schizophrenia, or of care, between these participants with schizophrenia and nurses, or between these participants with schizophrenia and their carers, or between carers and nurses. Many of the participants' self-identified needs were not met. A new attitude displaying reluctance about a caregiving role may be emerging.