The challenges on the family unit faced by younger couples affected by prostate cancer: A qualitative study

Objective. The number of younger men being diagnosed with Prostate cancer (PCa), (aged ≤ 65) is increasing. It is recognised that PCa and treatment side effects can have a significant impact on quality of life. This study explores the challenges faced by younger couples affected by PCa with dependent children (under 18 years) or young adults (18-29 years) in their families. Methods. Twenty-three men with PCa and their partners were interviewed (separately) by telephone. Participants were recruited from respondents to the Life After Prostate Cancer Diagnosis (LAPCD) national survey. Men were three to five years post-diagnosis, and following a range of treatment pathways. Data were analysed using the Framework approach. Results. Younger couples affected by PCa felt challenged by issues relating to their parental role and the dynamics within the family. Five main themes emerged: difficult conversations about PCa diagnosis; parental perceptions of the impact of diagnosis on children; parental responses to the impact of PCa on the family; shielding, coping and normalising strategies; and levels of support. Conclusions. A diagnosis of PCa can cause significant disruption to the family unit and the quality of life of its members. Support programmes offering guidance to children/young adults affected by PCa in their family, and addressing the concerns of parents may help families to better adapt. Encouraging clinical professionals to initiate conversations with younger couples about their children may be a way forward in directing appropriate support. Further research is needed to elucidate appropriate, effective supportive interventions

Using the framework method for the analysis of qualitative dyadic data in health research

There are an increasing number of qualitative studies which focus on the dyad (couples, families, caregivers–patients, health care professionals–patients). However, there is limited literature regarding qualitative methodology for dyadic analysis when members of the couple have been interviewed separately. The aim of this article is to share the knowledge we gained from undertaking a novel approach to dyadic analysis. We used an adapted version of the Framework method on data gathered in a study exploring the impact of prostate cancer on younger men and their partners. In this article, we examine and reflect on the challenges of this type of analysis and describe how we analyzed the interview data from a dyadic point of view, to share what we learned in the process

Adjuvant endocrine therapy after breast cancer: a qualitative study of factors associated with adherence.

INTRODUCTION: Despite evidence of the efficacy of adjuvant endocrine therapy (AET) in reducing the risk of recurrence and mortality after treatment for primary breast cancer, adherence to AET is suboptimal. This study aimed to explore factors that influence adherence and nonadherence to AET following breast cancer to inform the development of supportive interventions. METHODS: Interviews were conducted with 32 women who had been prescribed AET, 2-4 years following their diagnosis of breast cancer. Both adherers (n=19) and nonadherers (n=13) were recruited. The analysis was conducted using the Framework approach. RESULTS: Factors associated with adherence were as follows: managing side effects including information and advice on side effects and taking control of side effects, supportive relationships, and personal influences. Factors associated with nonadherence were as follows: burden of side effects, feeling unsupported, concerns about long-term AET use, regaining normality, including valuing the quality of life over length of life, and risk perception. CONCLUSION: Provision of timely information to prepare women for the potential side effects of AET and education on medication management strategies are needed, including provision of timely and accurate information on the efficacy of AET in reducing breast cancer recurrence and on potential side effects and ways to manage these should they arise. Trust in the doctor-patient relationship and clear patient pathways for bothersome side effects and concerns with AET are important. Training and education on AET for GPs should be considered alongside novel care pathways such as primary care nurse cancer care review and community pharmacist follow-up

Decision regret in men living with and beyond nonmetastatic prostate cancer in the United Kingdom: A population‐based patient‐reported outcome study

Objective: Clinical options for managing nonmetastatic prostate cancer (PCa) vary. Each option has side effects associated with it, leading to difficulty in decision‐making. This study aimed to assess the relationship between patient involvement in treatment decision‐making and subsequent decision regret (DR), and quantify the impact of health‐related quality of life (HRQL) outcomes on DR. Methods: Men living in the United Kingdom, 18 to 42 months after diagnosis of PCa, were identified from cancer registration data and sent a questionnaire. Measures included the Decision Regret Scale (DRS), Expanded Prostate cancer Index Composite short form (EPIC‐26), EQ‐5D‐5L, and an item on involvement in treatment decision‐making. Multivariable ordinal regression was utilized, with DR categorized as none, mild, or moderate/severe regret. Results: A total of 17 193 men with stage I‐III PCa completed the DRS: 36.6% reported no regret, 43.3% mild regret, and 20.0% moderate/severe regret. The odds of reporting DR were greater if men indicated their views were not taken into account odds ratio ([OR] = 6.42, 95% CI: 5.39‐7.64) or were involved “to some extent” in decision‐making (OR = 4.63, 95% CI: 4.27‐5.02), compared with men who were “definitely” involved. After adjustment, including for involvement, men reporting moderate/big problems with urinary, bowel, or sexual function were more likely to experience regret compared with men with no/small problems. Better HRQL scores were associated with lower levels of DR. Conclusions: This large‐scale study demonstrates the benefit of patient involvement in treatment decision‐making for nonmetastatic PCa. However, men experiencing side effects and poorer HRQL report greater DR. Promoting engagement in clinical decision‐making represents good practice and may reduce the risk of subsequent regret

The opinions, expectations and experiences of women with a family history of breast cancer who consult their GP and are referred to secondary care

Objectives: The purpose of this work was to explore the views, expectations and experiences of the increasing number of women with a family history of breast cancer who present to their GP and are referred to secondary care.Methods: A prospective descriptive study was carried out with 193 women referred by their GP regarding a family history of breast cancer to a genetics clinic or breast clinic in Oxfordshire and Northamptonshire over a one-year period.Results: Women who presented to primary care about a family history of breast cancer wanted their GP to provide them with information (90%) and to discuss their risks of developing breast cancer (87%). Women often had unrealistic expectations of what they might expect from a referral to secondary care, especially with regards to being offered genetic testing. Within 1 month of attending the secondary care appointment, 11% of women had returned to see their GP regarding their family history and what had happened at the specialist clinic.Conclusions: Women want information and the opportunity to discuss their breast cancer family history concerns in a primary care setting. For women who are referred, information provision in primary care is important to ensure realistic expectations of the secondary care visit and to provide ongoing reassurance and support throughout the often lengthy referral process. For women who are not referred, information provision in primary care is even more important, as this may be their only source of information and advice

The experiences and needs of couples affected by prostate cancer aged 65 and under :a qualitative study

PURPOSE: Prostate Cancer (PCa) is often considered to be an illness affecting older men, however the prevalence in younger men (&lt;=65 years) is rising. Diagnosis and treatment for PCa can have a significant impact on the lives of both the man with PCa and his partner. This study explored the experiences and needs of younger men and their partners affected by PCa. The findings will be used to inform service provision and develop interventions appropriate to need.METHODS: Participants were recruited from respondents to a national PROMS study (Life After Prostate Cancer Diagnosis (LAPCD), who indicated on completed questionnaires their willingness to be interviewed. Semi-structured telephone interviews were conducted with twenty-eight couples, separately (56 participants). Data were analysed using the Framework Method.RESULTS: Following the diagnosis of PCa, couples' experienced changes in their intimate relationships, parental/familial roles, work and finances, and social connections and activities. Couples adopted a range of strategies and behaviours to help their adjustment to PCa, such as communicating with each other, distancing, distraction, and adopting a positive mindset towards PCa. This, in turn, influenced how their identity as a couple evolved.CONCLUSIONS: Following a diagnosis of PCa, the identity of couples are continually evolving. It is important that these couples are provided with the appropriate information, support and resources to help them transition along the cancer pathway.IMPLICATIONS FOR CANCER SURVIVORS: Key areas of support identified for younger couples include: 1) couple focused support programme to foster relationship strategies/behaviours that facilitate couple adjustment; 2) age-specific support, e.g. 'buddying systems' connecting younger couples affected by PCa and providing them with tailored information (written/online/app).</p

The challenges on the family unit faced by younger couples affected by prostate cancer: a qualitative study

Objective:The number of younger men being diagnosed with Prostate cancer (PCa), (aged �65) is increasing. It is recognised that PCa and treatment side effects can have a significant impact on quality of life. This study explores the challenges faced by younger couples affected by PCa with dependent children (under 18 years) or young adults (18�29 years) in their families.Methods:Twenty�three men with PCa and their partners were interviewed (separately) by telephone. Participants were recruited from respondents to the Life After Prostate Cancer Diagnosis (LAPCD) national survey. Men were three to five years post�diagnosis, and following a range of treatment pathways. Data were analysed using the Framework approach.Results:Younger couples affected by PCa felt challenged by issues relating to their parental role and the dynamics within the family. Five main themes emerged: difficult conversations about PCa diagnosis; parental perceptions of the impact of diagnosis on children; parental responses to the impact of PCa on the family; shielding, coping and normalising strategies; and levels of support.Conclusions:A diagnosis of PCa can cause significant disruption to the family unit and the quality of life of its members. Support programmes offering guidance to children/young adults affected by PCa in their family, and addressing the concerns of parents may help families to better adapt. Encouraging clinical professionals to initiate conversations with younger couples about their children may be a way forward in directing appropriate support. Further research is needed to elucidate appropriate, effective supportive interventions.<br/

Food insufficiency in Queensland

To investigate the prevalence of food insufficiency and factors associated with it, two questions assessing household and individual food insufficiency were included in 13 regional health surveys conducted in Queensland in 1993. The surveys used computer-assisted telephone interviewing methodology. Of the 10,451 people interviewd, 9.7 per cent and 6.4 per cent reported household and individual food insufficiency, respectively, and 11.3 per cent reported at least one type. Prevalence was significantly higher in women than men and in urban than rural residents, and decreased monotonically with increasing age from 16.6 per cent in 18- to 30-year-olds to 1.7 per cent in over 70-year-olds. Higher prevalence also was associated with lower income, unemployment, single or separated, divorced or widowed status versus married (or de facto), one-adult households, and shared accommodation. Lower prevalence was associated with more education in those aged 50 and under but not in those over 50 years. Using logistic regression to control simultaneously for important sociodemographic factors, we found that risk of food insufficiency was most highly associated with age and income (threefold risk), unemployment and shared accommodation (twofold risk) and one-adult households, and being single versus separated, widowed or divorced (one-and-a-half-fold risk). Some differences in risks existed between men and women and between rural and urban residents, although none excluded the role of chance. Association of the items with lower reported fruit, vegetable and meat intake, poorer health status, and greater underweight supports their validity

Using the framework method for the analysis of qualitative dyadic data in health research

There are an increasing number of qualitative studies which focus on the dyad (couples, families, caregivers–patients, health care professionals–patients). However, there is limited literature regarding qualitative methodology for dyadic analysis when members of the couple have been interviewed separately. The aim of this article is to share the knowledge we gained from undertaking a novel approach to dyadic analysis. We used an adapted version of the Framework method on data gathered in a study exploring the impact of prostate cancer on younger men and their partners. In this article, we examine and reflect on the challenges of this type of analysis and describe how we analyzed the interview data from a dyadic point of view, to share what we learned in the process

A qualitative study exploring the experience of the partners of cancer survivors and their views on the role of primary care

PURPOSE: The partners of cancer survivors may experience distress, anxiety, fear and uncertainty whilst also caring for and supporting a partner who is ill. As they concentrate on the cancer survivor's needs, their own needs may remain unaddressed. Primary care staff may be well placed to support partners as they are generally accessible and may have a better knowledge of the patient's background and family relationships. However, their current involvement in the cancer survivor's and partner's cancer-related care is unclear. This study aimed to describe the experience of the partners of cancer survivors in dealing with cancer-related issues in the first 3 years post-diagnosis, their use of primary care services in relation to these issues and the barriers in doing so and their views on the role that primary care could potentially play in supporting them as carers during this period.METHODS: Semi-structured interviews with 22 partners of cancer survivors diagnosed within the last 3 years and recruited through six GP practices in the Thames Valley Region of the UK were analysed using the 'framework' approach to thematic analysis.RESULTS: Three issues were identified as of particular concern to partners: providing practical support, providing emotional support and managing their own health and well-being. Few partners had sought or received support from primary care specifically for cancer-related issues, indicating confidentiality, lack of knowledge of family relationships and the greater need of the cancer survivor as barriers. Most partners would welcome a proactive approach from primary care and felt that this would provide an opportunity to discuss issues they were concerned about.CONCLUSIONS: Needs and concerns of the partners of cancer survivors in caring for patients are often not addressed. There is a scope for primary care to elicit these needs and provide greater support. Changes to clinical practice in primary care could lead to greater involvement of and to better outcomes for cancer survivors and their partners. A proactive approach to patients and their partners or other close family members at the time of diagnosis through an offer of support and the inclusion in a designated review appointment at the end of initial treatment would be useful