Experiencing breast cancer in the context of mental illness in New Zealand

ABSTRACT

This study aimed to explore the experiences of women with mental illness who had also experienced breast cancer diagnosis and treatment, in particular, to identify barriers and facilitators to cancer treatment. Semi-structured interviews were conducted with ten breast cancer survivors who had had contact with secondary mental health services prior to their cancer diagnosis. Thematic analysis was used to identify key themes. Participants described positive experiences of cancer treatment, expressing surprise at both how well they coped with diagnosis and treatment and how well they were treated by services. Many contrasted this with their less positive experience of mental illness and mental health services. The women interviewed were active participants in their cancer treatment and did not report feeling stigmatised because of their mental health experiences. A lack of connection between cancer and mental health services was described, but this was not regarded as necessarily a bad thing. This study begins to counter the stereotypes of the difficult patient or the person unable to understand and cooperate in their own care which are prevalent in the literature. Further work is needed to understand the reasons for disparities in cancer outcomes.     

Young children returning home from care: the birth parents' perspective

While a wide range of literature exists on the experiences of children in foster care or adoption, much less is known about children who return home from care to their birth parents. This paper focuses on the perspectives of a small sample of birth parents of young children who returned home from care. It draws on findings from the Northern Ireland Care Pathways and Outcomes Study that has been following a population ( n  = 374) of children who were under 5 years and in care in Northern Ireland on the 31st of March 2000. As part of this study, interviews were conducted with the foster parents of 55 children, the adoptive parents of 51 children and the birth parents of nine children who had returned home from care. The paper explores the birth parents' views on how they coped while their child was in care, how they were coping after the child had returned home and how their child was faring at home. Results revealed that these parents, and their children, were experiencing multiple difficulties and struggled to cope after the children had returned home.     

To understand the incomprehensible: A qualitative study of parents' challenges after child removal and their experiences with support services

This article elucidates the challenges parents face when they lose the care of their children and their experiences of family counselling as a support service in Norway. A qualitative study following five mothers and one father whose children were in care was conducted through two focus groups and six individual interviews. The study found that the parents struggled to understand why their children had been placed in care and felt disempowered by the Child Protection Services (CPS). This situation led to complicated relationships with the CPS. We drew upon positioning theory and Goffman's theories about stigma and identity in this study, and these theories are explicitly used in discussing our analytic results. The study reveals the challenges encountered by CPS due to their dual role: On the one hand, they remove the children, and on the other, they offer support. The parents in this study also received assistance from the Family Counselling Services. Important results of this study are the parents' experiences of the two systems and, in particular, the different positions the systems seemed to place them in.     

Choice and control in social care: Experiences of older self-funders in England

This paper considers the experiences of older self-funders in England in the context of policies promoting choice and control. Self-funders are people who are not state-funded; they pay for social care from their own resources. Choice and control have been operationalized through personal budgets, based on the assumption that managing resources enhances ability to access appropriate care and support. This paper uses data from 40 qualitative interviews with self-funders and their relatives, and 19 with professionals. It explores the impact of the financial and social capital that self-funders are assumed to have and asks how older self-funders experience choice and control. The study found that older self-funders drew on personal experiences, family, and friends for information; were reluctant to spend their wealth on care due to competing priorities; and felt they had more control over the timing of decisions than people who were state-funded. Personal wealth appears to be perceived differently to funds “gifted” to people through cash for care schemes.     

An ecological systems approach to understanding social support in foster family resilience

Families who care for children in the foster care system often experience challenges related to the system, accessing services and supports, and managing relationships. Despite these challenges, many families thrive because of unique attributes and strengths that contribute to experiences of resilience. Using an ecological framework, this study examined social support among resilient foster families to better understand how foster caregivers experienced positive reciprocal transactions across systems. As part of a larger study, in‐depth narrative interviews were conducted to examine the process of resilience for families who foster. Findings revealed that families accessed and benefited from social support on micro‐level, meso‐level and macro‐level. Understanding how families cultivated social support across multiple levels offers implications for practice and policy when considering how best to retain and support families who care for vulnerable children.     

Social issues in contemporary native America: reflections from Turtle Island

The purpose of this study was to explore how the death and dying-related beliefs of caregivers influence their actual caregiving behavior, and to explore factors that may prevent them from translating these beliefs into functional behavior. Using a biopsychosocial-spiritual- environmental framework, semi-structured in-depth interviews were conducted with three primary caregivers of patients diagnosed with terminal illness. Caregiving behavior was found to be associated with the biopsychosocial-spiritual-environmental beliefs of the caregivers. These beliefs could have been influenced by the caregivers' past experiences with death and dying. Financial difficulty might also be a main obstacle hindering caregivers from providing the kind of care they believed was best for the patients.     

Jumping through hoops – the cost of compliance on sole parents

Australian governments along with other western countries have made significant changes to the welfare system with a focus on encouraging sole parents on social security payments to move into paid work. This paper reports on in‐depth interviews with 48 sole parents about their experiences with the welfare‐to‐work process and with a range of other services. Although parents reported some positive encounters, they also described a range of negative experiences, including how they needed to repeatedly prove their entitlement to help, leaving them feel as if they were undeserving of support. The study has demonstrated that it is often the most vulnerable parents who feel under close scrutiny and who have to work extra hard to get the help they need. These experiences can also see them disengaging from services. The findings show how the current policy environment adds to the complexity of sole parents' lives reinforcing their disadvantage.     

‘It's rewarding because I get the love’: Grandparents raising grandchildren with foetal alcohol spectrum disorder

The aim of this study was to explore the lived experiences of grandparents raising their grandchildren with foetal alcohol spectrum disorder (FASD). Specifically, we sought to identify how caregivers make meaning of their experience, what challenges are faced by grandparents while raising a second generation and what positive experiences are encountered. Ten grandparents raising a child with FASD in Ontario, Canada, participated in semi-structured interviews. Interpretative phenomenological analysis was used to analyse the interviews to determine reoccurring themes. Three main themes were identified: (i) challenges when raising a grandchild with FASD, including kinship adoption struggles and intergenerational issues; (ii) worries about the future, including financial planning and health concerns; and (iii) rewards, such as shifts in priorities and the opportunity to raise a second generation. Grandparents raising their grandchildren with FASD face challenges and thus require specific supports so that they may adequately provide a safe and nurturing home environment for children with often challenging learning and social needs.     

To Coordinate Information in Practice: Dilemmas and Strategies in Care Management for Citizens with Dementia

ABSTRACT

This qualitative study, based on 19 interviews with care managers, explores the experiences of care-managers involved in assessing the need for social services for people with dementia. The study shows that social workers, as care managers, face several dilemmas in their practice concerning people with dementia, in relation to the exchange of information and in regards to conflicting interests between different actors involved in the assessment of the need for support for people with dementia. Strategies used to handle problematic situations that arise in their work are using other sources for information (e.g., relatives and actors from other professions), persuading, and pursuing creative forms of consent. However, the study shows that dilemmas and strategies used generate other, prominently moral, dilemmas for care managers in their practice, which relate to participation and self-determination by the person with dementia. The study shed light on the problematic situation for care managers in their work to coordinate information and further the new “realities“ that they encounter as well as on how to handle these new situations. This study suggests possible ways to improve the everyday work of care managers, as well as how policies concerning social work and people with dementia can be improved.     

‘It's so much better than contact’: A qualitative study exploring children and young people's experiences of a sibling camp in the United Kingdom

This article explores children and young people's experiences of a sibling camp based in the United Kingdom. Sibling camps are an intervention based on children's activity holidays that aim to promote meaningful contact for siblings separated in public care. This study adopted a qualitative approach using semi‐structured interviews with 11 children and young people; this included one sibling group of three and four sibling groups of two. The children's ages ranged from 8 to 17 years old, and they had all attended at least one camp with their sibling. Findings highlighted how the children valued the extended time they could spend with their siblings at camp, and how they felt this enabled them to better understand their siblings and improve their relationships. Findings also showed how the children developed close supportive relationships with the staff at the camps, who ensured they were cared for, and they also supported them with managing their relationships, which some participants acknowledged at times could be challenging. The participants also valued spending time with other sibling groups who also experienced separation. The study found camps provided a space for these children to maintain links with their siblings and to strengthen their sibling bonds.     

Family Caregiving and the Site of Care: Four Narratives About End-of-Life Care for Individuals with Dementia

Little is known about end-of-life care for individuals with Alzheimer’s disease and other dementias. Four case studies are presented, using data collected by qualitative interviews conducted with family caregivers who were closely involved with end-of-life care for relatives with dementia. The case studies are formatted in two pairs, with one reflecting two deaths occurring at home and the other pair representing two deaths in the nursing home. The cases reveal a range of end-of-life experiences, suggesting that there is not just one “good” path. The extent of care needed, the responsiveness of the individual, the health of the caregiver(s), and the residence and support situations, can all intersect in a variety of ways that make no one scenario the answer for all. Although most people say they would prefer to die at home, in some situations the nursing home can be a satisfactory choice, particularly if hospice is involved. These narrative case studies give the reader insight into the variety of the end-of-life experiences and suggest the environment should be considered as part of the care provision.     

No te dejes pisotear por nadien: Examining Latino Immigrants' Efforts to Resist Discrimination

ABSTRACT

Latino immigrants in the United States face a hostile climate, including policies that reinforce community-level prejudices and acts of discrimination. Discrimination has an impact on the well-being of individuals who are targeted. The purpose of this study was to learn from Latino immigrant parents about responses to incidents with discrimination, including the process by which they determine how to respond. Fifty-four Latino immigrants participated in in-depth interviews. Using constructivist grounded theory methods, a model was developed to reflect participants' responses to discrimination. Findings indicate Latino immigrants' responses to discrimination evolve in a consciousness-raising process, including five phases of awareness: recognizes discrimination; questions discrimination; engages in reflection/dialogue on issues of race and discrimination; acknowledges value in self; and takes action. Moving through these phases, participants are more critically reflective on personal experiences and larger environmental contexts. Participants also engage in assessment of risks and opportunities when deciding how to respond to discrimination. Documentation status, English proficiency, and knowledge of systems of care affected their ability/decision to advocate. This study offers guidance for social service providers to support and collaborate with immigrants to increase their capacity to advocate. Findings suggest that future research is needed to explore the connection between phases of response and well-being.     

Life after institutional care: Implications for research and practice

This study sought to investigate the lived experiences of care leavers from institutional care facility in Botswana. The study objectives were to explore the challenges faced by children after leaving the institutional care and to identify services that can be offered to them in preparation for life in a society in general. The study adopted a cross‐sectional qualitative research approach, and data were collected through in‐depth interviews that were qualitatively analysed. Thirty participants was sampled, and there were divided into 2 sections comprising care leavers and key informants who were part of the institutional care staff. They were selected using purposive and snowball sampling methods. The findings confirm that institutional care has both positive and negative effects on care leavers in the sense that it provides children with educational opportunities, family, and strong interrelation skills. Furthermore, the study findings show that during children's stay in the institutional care, they are sometimes neglected by housemothers that affect their transition into mainstream society. Moreover, the study findings reveal that care leavers encounter many challenges ranging from finance management to unemployment, discrimination from the society, and poverty. Lastly, future research, policy direction, and implications are discussed.     

Negative Feelings and Help Seeking Among Older Adults With Chronic Conditions

Older adults with chronic conditions are at greater risk of negative affect, though few studies have focused on older adults’ perspectives on how chronic conditions affect their mental well-being. This study involved in-depth interviews that explored how older adults describe their feelings about chronic conditions, the context within which they experience these feelings, and their experiences with help-seeking for negative feelings. Participants reported that older adults experience a range of negative feelings related to their conditions and are only comfortable talking to people who understand their everyday experiences with managing chronic conditions. The findings have implications for health self-management.     

Less than human: a qualitative study into the experience of parents involved in the child protection system

This paper reports on the findings from a qualitative study into the experiences of parents who were involved in the English child protection system in 2013. Seventeen in‐depth interviews were conducted involving 19 parents and/or partners, and a framework approach was used to analyse the data. There were positive experiences of individual social workers and some positive experiences of the child protection system. However, the overwhelming theme of the parents' experiences was that the system was uncaring, inflexible and for some harmful to both themselves and their children. Despite being included in the child protection process, parents felt they were not afforded the same rights as a participant, as a decision‐maker or as a partner in seeking to improve the situation. The threat of consequences silenced parents who felt unable to speak out or challenge the things they disagreed with or coerced others into signing agreements they did not agree to. Such experiences related to a sense that they were being treated as ‘less than human’. These findings are considered within the context of recent reforms within the English child protection system.     

Exploring the mechanisms explaining the quality of sibling relationships when children are taken into care: A qualitative study of Norwegian children

Sibling relationships are potentially central in children's and young people's lives. Research has shown that the quality of sibling relationships changes in a variety of ways when a sibling(s) moves into care. There is limited understanding of the mechanisms that cause these changes. This study addresses this gap by reanalysing a dataset of 25 semistructured interviews with young people (16 to 23 years) drawn from a municipality in Southern Norway. The original study explored the changes in sibling relationships when the young person moved into care. This reanalysis of the data set explores specifically, using a template analysis, the mechanisms that children describe when exploring why these changes occur. Findings show the intricacies of the young person's social identification with the biological and/or foster family and how sharing a common identity may be key to the development of the sibling relationship when the young person(s) is taken into care. Our findings also show how key adults, such as foster parents and social workers, influence the relationship. The paper concludes with recommendations for social workers on how they may strengthen sibling relationships in families where children have been taken into care.     

Collaborating with parents during intervention with parental agreement: Practitioner perspectives on procedural justice

With growing concerns about the efficacy and costs of intrusive child protection interventions and increasing recognition of citizen rights to participation in governance, jurisdictions are looking to collaborative alternatives that divert families from the courts and out‐of‐home care. In Queensland (Australia), “intervention with parental agreement” (IPA) is one such response. Under IPA, the statutory child protection authority can work collaboratively with families, without a court order, to respond to children assessed as “in need of protection.” In this paper, we use procedural justice theory as a lens to explore how IPA policy is enacted in practice. Procedural justice relates to the quality of treatment a person receives and the fairness of the process than an authority uses during decision‐making (Tyler, 2006 ). It is associated with voluntary cooperation and compliance; key practice concerns when working to address child maltreatment via parental agreement rather than court ordered intervention. We report on a qualitative study that utilized semistructured, in‐depth interviews to capture the perceptions of 30 practitioners regarding the factors that shape the extent to which they enact IPA policy in a procedurally fair manner. Strategies for enhancing procedurally just enactment of IPA policy in practice are discussed.     

Young people leaving care in Sweden

The transition from a placement in care to an independent life can be a problematic phase for young people. In Sweden, special care‐leaving services are almost non‐existent. What then happens to young people when they leave a placement in out‐of‐home care? This paper draws on the results of a study in which 16 young care leavers between the ages of 18 and 22 years were interviewed. Telephone interviews were also performed with the young care leavers' parents, social workers, foster carers and institutional staff. The aim of the study was to investigate how young care leavers perceive the transition from care to an independent life. The Swedish welfare model, the prolonged transition to adulthood and the family‐oriented welfare discourse have been used as analytical perspectives. The results show that young care leavers have a pronounced need for social, emotional, practical and financial support. Whilst such support is occasionally provided by foster carers and residential staff, it is seldom given by social services or biological parents. This group is at risk of facing severe problems in the transitional phase from care to independent life, a fact that is not acknowledged by the Swedish welfare system.     

Risk,resilience and identity construction in the life narratives of young people leaving residential care

The role of residential care for children has developed very differently internationally, but in all cultural contexts, there are questions about the extent to which it can help young people recover from high risk backgrounds. In the UK, residential care has come to be seen as the placement of last resort, yet new government guidance on permanence has suggested that residential care can provide security and a sense of belonging. Narrative analysis of interviews with 20 care leavers identified their different pathways from birth families through residential care to early adulthood. Some experienced a transformation from a negative sense of self as victims or ‘bad children’ to survivors, while others continued to struggle. Key to successful turning points were four interacting factors, all associated with resilience; connection, agency, activity and coherence. These narratives revealed the importance of nurturing relationships and a sense of ‘family’, and also the role of support after leaving residential care, when transitions workers helped them to move on but stay connected. The study highlighted how residential care leavers from adverse backgrounds attribute very different meanings to their experiences, which affects identity construction, resilience and the need for support.