Developing resilient children and families when parents have mental illness: a family-focused approach

There is substantial evidence supporting the need for effective intervention for children and families living with parental mental illness. However, translation of this knowledge into mental health workforce practice remains variable, with a range of clinical practices and models of care evident. Nurses, who constitute the majority of the mental health workforce, are in prime positions to support children and families and provide preventative measures, identify those at risk, and intervene early. In this paper, we provide a framework for practice for nurses working with consumer parents. We contend that traditional models of nursing practice concentrating on the consumer are insufficient in meeting the needs of children and families living with parental mental illness. A focus on families needs to be core business for mental health nurses. A family-focused approach can be used to prevent problems for children and their families, and identify their strengths as well as vulnerabilities. Family-focused care is a useful framework from which to support families and address the challenges that might arise from parental mental illness, and to build individual and family resilience.     

Self‐expressed strengths and resources of children of parents with a mental illness: A systematic review

The aim of the present study was to explore the strengths children reported to have acquired while coping with their parents illness, and the external factors these children indicated had facilitated their coping process. A systematic literature search was conducted of peer‐reviewed papers that focused on self‐reported experiences of children with parents who had mental illness, and revealed their strengths and resources. The search included the following databases: MEDLINE, PsycINFO, and CINAHL. Results were filtered according to whether search terms appeared in the title or abstract. Fifty‐seven full‐text papers were reviewed; 26 of them met the inclusion criteria and were included in the review. The statements were analysed using content analysis. The search identified 160 relevant statements, 38 (24%) of which could be described as self‐reported strengths, and 122 (76%) as self‐reported resources. According to these statements, the children described themselves as more mature, independent, and empathic than their peers who did not have a parent with a mental illness, and as having acquired several abilities. The statements about resources indicated that the children regarded social support, information, and particularly the support of mental health‐care professionals as helpful when living with a parent with a mental illness. Recommendations for nursing actions to support children's ability to cope with their parents' illness are outlined.     

Satisfaction with care: a study of parents of children with congenital heart disease and parents of children with other diseases

AIM: We compared parents of children with congenital heart disease (PCCHD, n=1092) with parents of children with other diseases (PCOD, n=112) regarding satisfaction with their children's care (SCC). We also examined the association between parental/patient characteristics and SCC. METHOD: The parents completed a questionnaire about such areas as satisfaction with care, children's health status, and financial situation. The design was cross-sectional and data were gathered over 20 consecutive days. RESULTS: The univariate and multivariate analyses showed that PCCHD were more satisfied with their children's medical care and waiting period for treatment of their ill children than PCOD, although the difference was only modest. Furthermore, mothers were less satisfied with staff attitudes than fathers, with the lowest satisfaction among mothers of children with CHD. However, the multivariate analysis indicated that less satisfaction with care was more associated with decreasing child age, unemployment, financial burden of disease, social isolation and psychological distress than with children's diseases, their severity and parental gender. CONCLUSION: We corroborated some previous findings and may have provided new insights regarding determinants of SCC among parents. Interventions to improve SCC may need to address issues of parental psychological distress, socialization, and financial burden of illness. Possible ways of achieving this are discussed. Finally, research in a longitudinal format is needed to further scrutinize determinants of parental SCC.     

A randomised controlled trial of a community nursing intervention: improved quality of life and healing for clients with chronic leg ulcers

Aims and objective. The negative impact of chronic leg ulcers on quality of life is well documented. The aim of this study was to determine the effectiveness of a new community nursing model of care on quality of life, morale, depression, self‐esteem, social support, healing, pain and functional ability of clients with chronic venous leg ulcers. Background. Venous leg ulcers are slow to heal, frequently recur and are associated with pain, restricted mobility and decreased quality of life. Although chronic wound care consumes a large proportion of community nursing time and health care resources, there is little evidence available on the effectiveness of differing models of community care for this population. Design. Randomised controlled trial. Methods. We recruited a sample of 67 participants with venous leg ulcers referred for care to a community nursing organisation in Queensland, Australia after obtaining informed consent. Participants were randomised to either the Lindsay Leg Club^® model of care (n = 34), emphasising socialisation and peer support; or the traditional community nursing model (n = 33) consisting of individual home visits by a registered nurse. Participants in both groups were treated by a core team of nurses using identical research protocols based on short‐stretch compression bandage treatment. Data were collected at baseline, 12 and 24 weeks from commencement. Results. Participants who received care under the Leg Club model demonstrated significantly improved outcomes in quality of life (p = 0·014), morale (p < 0·001), self‐esteem (p = 0·006), healing (p = 0·004), pain (p = 0·003) and functional ability (p = 0·044). Conclusion. In this sample, the evaluation of the Leg Club model of care shows potential to improve the health and well‐being of clients who have chronic leg ulcers. Relevance to clinical practice. These results suggest further evaluation and implementation of this model is warranted by community health organisations involved in the care of this population.     

Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study

Title. Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study Aim. This paper is a report of a study to describe the essential structure of the lived experience of living with severe chronic obstructive pulmonary disease (COPD) during the palliative phase of the disease. Background. Chronic obstructive pulmonary disease is one of the most common diseases throughout the world. Shortness of breath, fatigue and cough are the most troublesome symptoms, and living with COPD often imposes limitations on daily living. The disease has a great impact on quality of life and affects the extent to which people can be active in daily life. Methods. We conducted qualitative interviews of eight people with COPD and collected data over a 2‐month period in 2003. Our patients were recruited from two pulmonary disease clinics in West Sweden. We used a phenomenological methodology to analyse the interviews. Findings. Daily life for people with COPD is affected in several different ways. The patients described how their physical limitations forced them to refrain from meaningful activities in everyday life and led to social isolation. Everyday emotions vacillated between viewing life as meaningful and meaningless. A sense of involvement and the belief that life was meaningful gave the individual the energy and the desire to continue living and to envision a future. Conclusion. Nursing care should include support and facilitation, so that patients can live rather than exist to the end of their lives. It is important to learn from patients and tailor activities to their social, existential and physical priorities, where appropriate family‐centred support may be most effective.     

Perceptions of effective self-care support for children and young people with long-term conditions

Aims and objectives. To: (1) Examine children’s/young people’s, parents’ and professionals’/workers’ perceptions of the effectiveness of different models of self‐care support, (2) identify factors that support and inhibit self‐care and (3) explore how different models integrate with self‐care support provided by other organisations. Background. Childhood long‐term illness has been largely overlooked in government policy and self‐care support under‐researched when compared with adults. There is a lack of evidence on which are the most appropriate models and methods to engage young people and their parents in self‐care. Design. Case study. Methods. Case studies of six different models of self‐care support were conducted using multiple methods of data collection in 2009. Semi‐structured interviews were conducted with 26 young people, 31 parents and 36 self‐care support providers. A sample of self‐care support activities was observed and relevant documents reviewed. Data were analysed using the Framework approach. Results. The effectiveness of self‐care support projects was defined in relation to four dimensions – providing a sense of community, promoting independence and confidence, developing knowledge and skills and engaging children/young people. Self‐care support provided by schools appeared to be variable with some participants experiencing barriers to self‐management and inclusion. Participants self‐referred themselves to self‐care support projects, and there was a lack of integration between some projects and other forms self‐care support. Conclusion. This study adds to knowledge by identifying four dimensions that are perceived to be central to effective self‐care support and the contextual factors that appear to influence access and experiences of self‐care support. Relevance to clinical practice. Study findings can inform the development of self‐care support programmes to meet the needs of individuals, families and communities. In addition, the findings suggest that healthcare professionals need to support schools if young people with long‐term conditions are to have the same educational and social opportunities as their peers.     

Stress and well-being among parents of children with rare diseases: a prospective intervention study

AIM: This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention. BACKGROUND: Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders. METHOD: We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability. RESULTS: We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network. CONCLUSION: Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.     

Experiences of children/young people and their parents, using insulin pump therapy for the management of type 1 diabetes: qualitative review

What is known and Objective: Advances in medical technology have made insulin pumps an attractive treatment option for patients with type 1 diabetes and in particular for children and young people. Previous studies have accounted the experiences and views of children/young people and their parents for the use of the injection therapy, but very few have focused on the use of insulin pumps. The objective of this review was to identify studies that explore the experiences of children/young people and their parents on the transition from injections to insulin pump therapy, in the context of their social life. Methods: A systematic literature search was conducted, and six studies meeting the inclusion and exclusion criteria were identified. Results: Views and perspectives from the studies identified mainly focused on: introduction to the pump; reasons for the transition to pump therapy; advantages and disadvantages of this treatment option; and impact on quality of life (QoL). Parents and/or children reported that they learned about pump therapy either formally from a healthcare professional or informally from a friend or the internet. Many reasons were identified for the transition, the most important being the pursuit of stable and controlled blood sugar levels and the desire for a more flexible lifestyle. Participants highlighted the advantages of insulin pumps in terms of improved diabetes control. Moreover, there was a positive impact on the QoL, as insulin pumps provided children greater flexibility in lifestyles especially with regards to meals and socialization. In contrast, psychosocial issues such as pump visibility and physical restrictions were highlighted as disadvantages. Issues such as day‐to‐day management were also discussed. What is new and Conclusion: Exploring children/young people’s perspectives on the use of pump therapy for managing their diabetes, and parental reflections in caring for those children is important as it provides evidence informing policy for the wider implementation of this technology in the management of diabetes in children. However, the review revealed that there is a scarcity of data in this area and that further research is needed.     

Relationships between coping, coping resources and quality of life in patients with chronic illness: a pilot study

Scand J Caring Sci; 2011; 25; 476–483
Relationships between coping, coping resources and quality of life in patients with chronic illness: a pilot study Background: In Sweden there are approximately about 3500 end‐stage renal disease (ESRD) and 250 000 chronic heart failure (CHF) patients. Objectives: The original purpose of the study was to determine differences between two groups of patients with chronic illness (ESRD and CHF) regarding the following study variables: coping, sense of coherence (SOC), self‐efficacy and quality of life (QOL). Following this, the aim was to explore the relationships between demographic variables (sex, age, educational level and living area) and QOL as well as between coping, SOC, self‐efficacy and QOL for the combined sample of patients with ESRD and CHF. Methods: A comparative and correlative design was used with a sample of 100 patients (n = 41 ESRD, n = 59 CHF). The data were collected during 2004, using four standardized questionnaires and regression analyses were conducted. Results: No significant differences were found between the two groups. Positive correlations were identified between SOC, general self‐efficacy and QOL, whereas negative correlations emerge between emotion‐focused coping, SOC, general self‐efficacy and QOL. SOC, general self‐efficacy and emotion‐focused coping explained 40% of the variance in QOL. Those with low SOC and general self‐efficacy showed negative correlations between emotion‐focused coping and QOL, whereas no such correlations were shown for those with high values on SOC and general self‐efficacy. Conclusions: The present results on coping and QOL correspond with previous research regarding how other groups with chronic illness handled their daily life. Preliminary results indicate that how individuals tackle their present situation is more important than which chronic illness they have. Women used more emotion‐focused coping than men, which constitute an important finding for further research.     

Music in mind, a randomized controlled trial of music therapy for young people with behavioural and emotional problems: study protocol

porter s., holmes v., mclaughlin k., lynn f., cardwell c., braiden h.-j., doran j. & rogan s. (2012)?Music in mind, a randomized controlled trial of music therapy for young people with behavioural and emotional problems: study protocol. Journal of Advanced Nursing68(10), 2349-2358. ABSTRACT: Aims. This article is a report of a trial protocol to determine if improvizational music therapy leads to clinically significant improvement in communication and interaction skills for young people experiencing social, emotional or behavioural problems. Background. Music therapy is often considered an effective intervention for young people experiencing social, emotional or behavioural difficulties. However, this assumption lacks empirical evidence. Study design. Music in mind is a multi-centred single-blind randomized controlled trial involving 200 young people (aged 8-16?years) and their parents. Eligible participants will have a working diagnosis within the ambit of International Classification of Disease 10 Mental and Behavioural Disorders and will be recruited over 15?months from six centres within the Child and Adolescent Mental Health Services of a large health and social care trust in Northern Ireland. Participants will be randomly allocated in a 1:1 ratio to receive standard care alone or standard care plus 12 weekly music therapy sessions delivered by the Northern Ireland Music Therapy Trust. Baseline data will be collected from young people and their parents using standardized outcome measures for communicative and interaction skills (primary endpoint), self-esteem, social functioning, depression and family functioning. Follow-up data will be collected 1 and 13?weeks after the final music therapy session. A cost-effectiveness analysis will also be carried out. Discussion. This study will be the largest trial to date examining the effect of music therapy on young people experiencing social, emotional or behavioural difficulties and will provide empirical evidence for the use of music therapy among this population. Trial registration. This study is registered in the ISRCTN Register, ISRCTN96352204. Ethical approval was gained in October 2010.     

Burdened parents sharing their concerns for their children with the doctor. The impact of trust in general practice: a qualitative study

Abstract

Objective: The aim of this study was to recognise the preconditions experienced by general practitioners (GPs) in addressing the children’s needs when ill and substance abusing parents consult for their own health problems.

Design: Qualitative analysis of 38 case stories told by GPs in focus group interviews.

Setting: Focus group interviews of four continuing medical education groups for GPs in western Norway.

Subjects: 27 GPs (nine females) with at least 5 years’ experiences in general practice.

Results: Different aspects of the GPs’ perceived mandate of trust from the parents was a precondition for the children’s situation to be addressed. In some case stories the participants took an open mandate from the parent for granted, while in others they assumed that the parent did not want to discuss their family situation. Sometimes the participants had faith that by continuing with their ordinary GP tasks, they might obtain a more open mandate of trust. Their evaluation of the mandate of trust seemed to impact on how the GP could adopt a mediating role between the parents and various support agencies, thus supporting children who were at risk.

Discussion/conclusion: The children most at risk may remain invisible in GPs’ encounters with their parents, possibly because their parent’s health problems and overall situation overshadow the children’s situation. The mandate of trust from burdened parents to GPs can be a fruitful concept in understanding the interaction regarding the welfare of the parent’s children. Negotiating the mandate of trust with parents by explicitly addressing trust and having an ongoing discussion about the mandate and its limits might be an option to secure the children support if necessary.

• KEY POINTS

• Offering children of burdened parents information and support can be crucial for health promotion and illness prevention.

• A general practitioner’s (GP’s) evaluation of the trust parents have in them can determine the extent of support children receive.

• Depending on the parents’ level of trust, GPs may take a mediating role between support services and parents for the benefit of the children.

• A negotiation concerning the trust parents have in the GP may open up possibilities for GPs to offer children necessary support.

     

Practices to support co-design processes: A case-study of co-designing a program for children with parents with a mental health problem in the Austrian region of Tyrol

Forms of collaborative knowledge production, such as community-academic partnerships (CAP), have been increasingly used in health care. However, instructions on how to deliver such processes are lacking. We aim to identify practice ingredients for one element within a CAP, a 6-month co-design process, during which 26 community- and 13 research-partners collaboratively designed an intervention programme for children whose parent have a mental illness. Using 22 published facilitating and hindering factors for CAP as the analytical framework, eight community-partners reflected on the activities which took place during the co-design process. From a qualitative content analysis of the data, we distilled essential practices for each CAP factor. Ten community- and eight research-partners revised the results and co-authored this article. We identified 36 practices across the 22 CAP facilitating or hindering factors. Most practices address more than one factor. Many practices relate to workshop design, facilitation methods, and relationship building. Most practices were identified for facilitating ‘trust among partners’, ‘shared visions, goals and/or missions’, ‘effective/frequent communication’, and ‘well-structured meetings’. Fewer practices were observed for ‘effective conflict resolution’, ‘positive community impact’ and for avoiding ‘excessive funding pressure/control struggles’ and ‘high burden of activities’. Co-designing a programme for mental healthcare is a challenging process that requires skills in process management and communication. We provide practice steps for delivering co-design activities. However, practitioners may have to adapt them to different cultural contexts. Further research is needed to analyse whether co-writing with community-partners results in a better research output and benefits for participants.